PROMISES MADE…PROMISES KEPT
A Policy Analysis
of
Public Services Available to Florida
Residents with Developmental Disabilities
A Report to the
Florida Developmental Disabilities
Council, Inc.
by
The University of Miami School of Medicine
Mailman Center for Child Development
A University Center for Excellence in
Developmental Disabilities Education,
Research and Service
June 2003
FLORIDA DEVELOPMENTAL DISABILITIES COUNCIL, INC.
“Sponsored by United States Department of Health and Human Services, Administration
on Developmental Disabilities and the Florida Developmental Disabilities Council, Inc.”
BACKGROUND ..........................................................................................................................................................4
ACKNOWLEDGEMENTS .........................................................................................................................................5
PART ONE
ANALYSIS OF SERVICES
INTRODUCTION.........................................................................................................................................................6
I. SERVICES AVAILABLE TO CHILDREN ..........................................................................................................8
THE DEPARTMENT OF HEALTH ..................................................................................................................... 8
THE DEPARTMENT OF CHILDREN AND FAMILIES........................................................................................... 12
THE DEPARTMENT OF EDUCATION .............................................................................................................. 13
SERVICES TO CHILDREN IN OTHER SETTINGS ............................................................................................. 17
AND ANOTHER 12% OR 1269 SHOWED SIGNIFICANT DEFICITS, WHICH SUGGESTED A DEVELOPMENTAL
DISABILITY. IN 2001-02, 78 CHILDREN WITH LOW INTELLECTUAL FUNCTIONING WERE PLACED IN SPECIALIZED
RESIDENTIAL PROGRAMS, AS A RESULT OF MULTIDISCIPLINARY PLACEMENT STAFFING. SERVICES AVAILABLE TO
THESE YOUTH INCLUDE CASE MANAGEMENT SERVICES, BEHAVIOR MODIFICATION, COUNSELING, MENTAL HEALTH
SERVICES, SOCIAL SKILLS ENHANCEMENT, PRE-VOCATIONAL AND VOCATIONAL SERVICES, HEALTH SERVICES
AND FAMILY INTERVENTION. CONTRACTED PROFESSIONALS PROVIDE THESE SERVICES IN THE RESIDENTIAL
TREATMENT COMMITMENT PROGRAMS. ....................................................................................................... 18
SUMMARY OF SERVICES AVAILABLE TO CHILDREN ...................................................................................... 18
POTENTIAL OBSTACLES TO SERVICES FOR CHILDREN. ................................................................................ 18
II. SERVICES FOR CHILDREN TRANSITIONING FROM SCHOOL ............................................................. 19
TRANSITION RESOURCES ........................................................................................................................... 20
HEALTH CARE ........................................................................................................................................... 20
ADULTS WITH SPECIAL HEALTH CARE NEEDS. YET, MEDICAL PROFESSIONALS RECOGNIZE THAT ACCESS TO
QUALITY HEALTH CARE FOR CHILDREN IN THIS POPULATION IS CRITICAL FOR A SUCCESSFUL TRANSITION FROM
DEPENDENCE TO INDEPENDENCE. FAMILIES OF CSHCNS ALSO REPORT SERIOUS DIFFICULTIES IN FINDING
DENTISTS TO CARE FOR THEIR CHILDREN. THIS ISSUE BECOMES MORE PROMINENT DURING THE TRANSITION
YEARS....................................................................................................................................................... 21
DENTAL SERVICES..................................................................................................................................... 21
EDUCATIONAL SERVICES ........................................................................................................................... 21
DIVISION OF VOCATION REHABILITATION (DVR). ......................................................................................... 23
ASSISTIVE TECHNOLOGY ........................................................................................................................... 25
DEVELOPMENTAL DISABILITIES PROGRAM (DDP)........................................................................................ 27
SUMMARY OF TRANSITION SERVICES.......................................................................................................... 27
POTENTIAL OBSTACLES TO SERVICES ........................................................................................................ 27
III. SERVICES FOR ADULTS............................................................................................................................... 28
A. HEALTH CARE SERVICES ...................................................................................................................... 29
THE DEPARTMENT OF HEALTH (DOH) ........................................................................................................ 30
THE DEVELOPMENTAL DISABILITIES PROGRAM (DDP)................................................................................. 31
DEVELOPMENTAL SERVICES HOME AND COMMUNITY BASED SERVICES W AIVER. ......................................... 34
FUNDING AND INDIVIDUALS SERVED IN 2001-02 .......................................................................................... 36
SERVICES PROVIDED ................................................................................................................................. 38
SERVICES PROVIDED. ................................................................................................................................ 40
RESIDENTIAL SERVICES ............................................................................................................................. 41
2
SERVICES PROVIDED/RESIDENTIAL TRENDS ............................................................................................... 43
C. EMPLOYMENT AND DAY ACTIVITY SERVICES .......................................................................................... 48
SERVICES PROVIDED/EMPLOYMENT TRENDS .............................................................................................. 49
DVR SERVICES ......................................................................................................................................... 50
SERVICES PROVIDED. ................................................................................................................................ 52
D. TRANSPORTATION SERVICES ................................................................................................................ 54
W AIVER TRANSPORTATION SERVICES PROVIDED ........................................................................................ 56
COMMUNITY AND FAMILY SUPPORTS .......................................................................................................... 58
POTENTIAL OBSTACLES TO SERVICES FOR ADULTS ..................................................................................... 60
IV. SERVICES FOR OLDER ADULTS ................................................................................................................ 61
OLDER ADULTS WITH DEVELOPMENTAL DISABILITIES .................................................................................. 61
A. HEALTH CARE SERVICES ...................................................................................................................... 62
B. RESIDENTIAL SERVICES ........................................................................................................................ 63
C. DAY ACTIVITIES.................................................................................................................................... 64
DOEA SERVICES PROVIDED ...................................................................................................................... 67
D. TRANSPORTATION SERVICES ................................................................................................................ 67
SERVICES PROVIDED ................................................................................................................................. 67
POTENTIAL OBSTACLES TO SERVICES ........................................................................................................ 67
PART TWO
CONCLUSIONS AND RECOMMENDATIONS
I. INTRODUCTION ................................................................................................................................................... 68
II. GENERAL RESPONSES TO FOCUS GROUPS AND SURVEYS .............................................................. 70
III. SPECIFIC RESPONSES FROM FOCUS GROUPS AND SURVEYS ...................................................... 73
IV. CONCLUSIONS AND RECOMMENDATIONS FROM THIS STUDY ........................................................ 77
V. EMERGING NATIONAL TRENDS AND THEIR IMPACT IN FLORIDA ..................................................... 83
REFERENCES USED IN THIS REPORT ............................................................................................................. 88
3
Promises Made…Promises Kept
PA R T O N E
A NALYSIS OF S ERVICES
BACKGROUND
Only in recent years have better funding streams, new legislation and
improved public attitudes fostered the enhancement of services for
people with severe and long-term disabilities around the country. Like
most states, over the last decade Florida has been moving steadily
towards the goal of providing individuals with developmental disabilities
the services they need within their own homes and communities. Part
of this effort entails moving individuals out of large institutions. Four
state developmental service institutions (DSI) remain in Florida, though
one is being phased down and is scheduled for closure. Residents of
private intermediate care facilities (ICF/DD) also have the option of
receiving services in home and community-based settings.
With a more aggressive pursuit of Medicaid Waiver funds, the State of
Florida has nearly doubled (a 94% increase) the amount of money
spent on services for individuals with developmental disabilities over
the last several years, from $503M for 1988-89 to a total of $975M in
2002-03. (This compares to an average U.S. increase of about 14%
during the same four-year period.) The number of people served in
Florida also increased during the same time period from a total of 9219
to more than 26,000 (a 182% increase). The need continues to grow
exponentially. Even as the latest budget request was being formulated
to include services to those remaining on an initial waiting list of 10,000
people, a second and larger group of 10,000 individuals surfaced and
now also awaits services.
Responding to the urgent demands of consumers, families and
disability advocates—as well as recognition of the need by
administrators and legislators—the Developmental Disabilities
Program is currently in the throes of a complete re-design. Guided by a
representative group of the aforementioned stakeholders, the aim is
that the revamped system will better provide the service flexibility and
choices required by individuals and their families.
Within this evolving environment of expanded expectations, the Florida
Developmental Disabilities Council, Inc. contracted the Mailman Center
-- a University Center of Excellence in Developmental Disabilities
(UCEDD)-- at the University of Miami to conduct a policy analysis and
review of public services available to Floridians with disabilities.
4
ACKNOWLEDGEMENTS
In preparing this report, data was gathered from Florida departments
and offices that provide social services to all residents. These include:
Department of Children and Families/Developmental Disabilities
Program (DDP);
Department of Education;
Department of Health;
Department of Children and Families/Alcohol, Drugs and Mental Health
Program;
Department of Education/Vocational Rehabilitation Program;
Office of Disadvantaged Transportation;
Department of Elder Affairs; and,
The Medicaid Office, within the Agency for Health Care Administration.
We would like to thank the employees in these offices who patiently
provided assistance in obtaining the data and information requested.
Important input was also provided by consumers, families and service
providers who participated in a series of focus groups held around the
state, as well as in written surveys that were distributed at disability
conferences and meetings. To these individuals who took the time to
share their opinions and perspectives, we are also grateful.
Much of the descriptive and statistical information contained in this
report was gleaned from direct contact with relevant agency staff or
from Florida’s public information web sites, including some of the wide
variety of reports and publications listed at the end of this report.
Project Consultants who contributed to this report include:
Rae Alfassa-White, M.S.
Linda Friedman, M.S.W.
Martha Sheldon, M.S.W.
Grateful appreciation is also extended to the organizations whose kind
cooperation made the project’s focus groups possible:
District Seven Family Care Council
People First, South Florida Chapter
Florida Association of Support Coordinators, Jacksonville area.
…………………………..
Daniel Armstrong, Ph.D., Director of the Mailman Center
Jean Sherman, Ed.D., R.N., Author
5
INTRODUCTION
Florida is a state populated by more than 16 million people. The latest
update of the 2000 census contains the following information about
people with disabilities who do not live in institutions. For ages 6-20
there are 284,514 individuals; there are 1,914,507 individuals between
ages 21-64; and, the over 65 age group holds 1,075,545 people. All
told, there are more than 3.2 million Floridians with some sort of
disability. Within this population there is a group of people whose
lifelong or developmental disabilities are sufficiently severe that they
require ongoing services and support. The range of needed services
will likely vary throughout the individuals’ lifetimes and some supports
may be provided by the voluntary sector, primarily by families.
However, the vast majority of these individuals’ service needs must be
filled by the public sector.
The total number of
Floridians with severe
developmental disabilities is
240,000. The number of
persons who will need
services from the
Developmental Disabilities
Program is approximately
80,000.
The number of Floridians with developmental disabilities. Several
factors confound attempts to estimate the number of Floridians with
developmental disabilities who need services from the system. These
include: 1) the total state population of people with developmental
disabilities can be obtained by using research-based formulas.
However, this total is different from the number of people whose
severity of disability causes/will cause them to seek services. A study
by Larson and colleagues (2001) may be helpful in interpreting these
estimates. Using data from this complex study of methods, ages,
definitions and population surveys, they determined that an accurate,
combined prevalence rate of mental retardation and developmental
disabilities in the non-institutionalized U.S. population is 1.49%.
2) The ESE school population cannot be used to project a number,
since not all children with developmental disabilities are clearly
identified and, of the total number of students with retardation, some
portion will “age out” or increase their IQ scores by graduation and thus
become ineligible for services.
3) The DDP currently uses the number of known individuals as a
prevalence number, but that does not take into account people who
are currently not being served, for whatever reason.
4) Some large states (e.g., Texas) estimate the prevalence of one
unknown person with a disability needing service for each one that is
known.
5) Reluctance of some individuals with unresolved immigration status
6
to attempt to access services may also result in underestimates of the
number in need of services.
Since they produce approximately the same results, two of these
approaches can be useful for planning purposes. First, using a 1.49%
prevalence rate (or approximately 1.5%) in the state population of
16 million produces an estimate of about 240,000 Floridians with
developmental disabilities. Based on their breadth of experience, the
consulting group, Mercer reports that approximately 1 in 3 persons in
the actual population comes forward for services. From a population of
240,000 that means a service population of approximately 80,000.
Second, assuming the existence of one person unknown for every
person known (41,000) to have a severe developmental disability
produces a number of approximately 82,000 persons who need or will
need services. This is nearly double the current number of people with
severe developmental disabilities who are being served or who have
requested services in Florida.
Tracking People with Developmental Disabilities in the Health and
Social Service System. Determining the number of people with
developmental disabilities who are served by state programs other
than the DDP is not entirely possible, given the current reporting
systems in place. Some departments (DOH, TD) track general
“disabilities” in the individuals they serve; others do not. Some
departments (DOE, DOEA) do track their clients by specific disability,
but use functional categories rather than a classification. These
functional categories are more encompassing than a developmental
impairment and so, cannot be used as an equivalent. Still other
agencies (DVR) may use the term “developmental disability,” but
interpret it more narrowly to mean clients who have cognitive
impairments only. Other clients who have the developmental
impairments of cerebral palsy and spina bifida are grouped into
another category with all other clients who have “orthopedic
impairments.”
Limitations of the Findings. Any examination of the service data
presented in this report must be viewed within the framework of the
reporting disparities just described, and with an understanding of the
lack of any interagency accountability for citizens with developmental
disabilities.
That said, the service data presented in this report serves as a
foundation for identifying: 1) certain service trends, 2) barriers to
service use and, 3) specific recommendations for enhanced quality,
access and availability. These recommendations derive from reviews
of existing service policies and eligibility criteria, as well as from the
observations and experiences of those who use the services, either as
recipients or as providers.
7
Contents of the Report. This report is presented in two parts. Part One
illustrates the data findings, both quantitative and qualitative. Because
people with developmental disabilities typically require services and
supports across their life spans, Part One looks at services for four
chronological age groups: infants and children, adolescents in
transition, adults, and old adults. Within each section, the appropriate
services are discussed and data supplied for the services given. Each
section also provides typical consumer profiles and names some
service barriers. These barriers are further elaborated in Part Two of
the report.
Part Two contains the qualitative input of participants in three focus
groups and of survey respondents from around the state. Conclusions
and recommendations are then presented. The conclusions result from
an analysis of the service data collected, and include trends
discovered. The recommendations in this report evolved from the
study’s conclusions; some are expressed in the words of survey or
focus group participants.
I. SERVICES AVAI LAB LE TO CHILDREN
Of the total population of schoolaged children in Florida,
estimates of those with special
health care needs, and at least
one chronic condition, range from
5 percent to more than 30
percent. Approximately 6 to 15
percent of the state’s children
with special health care needs
are served with exceptional
education programs. Of
2,500,161 students in 2001, 15
percent (376,074) had a special
need, not counting gifted
students. Subtracting students
with specific learning disabilities
and speech impairments, 6 % of
Florida’s students or 150,142
school-aged children have more
severe disabilities and special
health care needs.
Within the State of Florida, there are several departments and offices
concerned with providing services to children with developmental
disabilities, from their early childhoods through high school graduations
and their transitions from school. The primary entities providing
childhood services include the Departments of Health (DOH) and
Education (DOE) and, indirectly, the Medicaid Office of AHCA. The
respective roles of these entities are detailed below.
Health Care. According to the 2002 report, The Health of Florida’s
Children and Youth, providing preventive, primary and specialty
services for children with special health care needs is a core public
health function for DOH. Children with these special needs also
receive educational services from DOH from ages 0-3; school aged
children receive educational services from DOE.
According to the 2002 report, The Health of Florida’s Children and
Youth, poverty, a lack of insurance or rural location place a family with
a child with a disability and chronic condition at greater risk. Children
with special health care needs are also at increased risk for child
abuse and neglect, when compared to the general population.
THE DEPARTMENT OF HEALTH
Within the Department of Health, the Division of Children’s Medical
Services (CMS) is the most significant service entity for children with
developmental disabilities. CMS serves 77 percent of all children in
Florida who are enrolled in publicly supported health insurance
programs. The CMS program provides children with special health
8
care needs with a family centered, managed system of care. Children
with special health care needs are those children under age 21 whose
serious or chronic physical or developmental conditions require
extensive preventive and maintenance care, beyond that required by
typically healthy children. During 2001-02, CMS served over 155,000
children with special health care needs. Families are usually required
to pay a monthly insurance premium of $15, but there is no cost for
services.
Most services are provided at or coordinated through CMS offices in
22 local communities throughout the state. When necessary, children
are referred to CMS-affiliated medical centers. These centers provide
many specialty programs with follow-up care provided at local CMS
offices. In some rural areas of the state, county health departments
provide primary care services and conduct the prevention activities. To
enhance access to specialty care in rural areas, CMS implemented a
specialists’ telemedicine initiative through the University of Florida.
CMS has two main divisions: Prevention and Intervention (EI) and The
Network. The scope of Prevention and Intervention includes the Child
Protection Team, the Early Intervention and Prevention System and,
Regionalized Perinatal Intensive Care.
The Network is a statewide healthcare delivery system for children 021 years old with chronic or physical or developmental conditions. The
CMS Network provides a Medicaid Plus benefit package, which
includes primary care, specialty care, hospitalization, dental services,
mental health services, pharmaceuticals, transportation, home health
care, therapy services, care coordination by specially trained nurses,
social services, health education, family counseling and community
resource linkages. The Network is also authorized to provide early
intervention services, parent support, respite, and genetic and
nutritional counseling to the children enrolled. It is recognized as a
Medicaid managed care option and a KidCare (the State Children’s
Health Insurance Program - SCHIP) program through federal Medicaid
waivers and state plan amendments.
As of 10/02 the Behavioral Health
Network was serving 329 children
with severe emotional disturbances
and substance related disorders;
another 79 were waiting.
Other available aspects of The Network include a Behavioral Health
Network, a Children’s Multidisciplinary Assessment Team (CMAT) and
Medical Foster Care. Behavioral services include both mental health
and substance abuse services.
Program Eligibility. To be eligible for the CMS Network, children must
meet both financial and medical requirements. They must have
special health care needs that require medical services, therapies,
supplies or equipment due to a chronic physical, behavioral or
developmental condition. These children often need complex care
requiring multiple providers, rehabilitation services and specialized
equipment, in a number of different settings.
9
Children must also be financially eligible by being either a Medicaid
recipient, a Florida KidCare enrollee under 19 years old, or a member
of a family that meets certain financial criteria. Three categories of
children are served: 1) those covered by Medicaid (Title XIX -71%); 2)
those covered by SCHIP (Title XXI - 13%); and, 3) those not covered
by either of those two funding sources (16%). This latter category is
referred to as the Safety Net program. NOTE: A capped amount of
funding is available for participants in the safety net program, and
medically necessary services are provided until age 21, to the extent
that resources continue to exist.
For the period of July 1, 2001 – June 30, 2002, a total of 54,173
children were enrolled in the CMS Network via one of the three funding
categories. It should be noted, however, that disability data are not
collected by type for children served through The Network. Therefore
these 54,173 enrollees are not necessarily all children with
developmental disabilities. They are children with special health care
needs (CSHCNs), some of which may include developmental
disabilities.
An Increase in Enrollment. Enrollment in the CMS Title XXI program is
on the increase. In March 2002 it was 7051; by March 2003 it was
8622. The following graph displays the enrollment trends in the three
main funding sources/categories of the CMS Network.
CMS Enrollment Trend Statewide
Title XIX, XXI, and Safety Net
FY 01- 02
30,000
Title XIX
25,000
Total Enrollees
20,000
15,000
Title XXI
10,000
5,000
Safety Net
Title XIX
Title XXI
Safety Net
The EI Program. In contrast to the Network, the CMS Infants and
Toddlers Early Intervention Program (EI) specifically serves children
with developmental disabilities. The $39.7 M program has two
10
Jun-02
May-02
Apr-02
Mar-02
Feb-02
Jan-02
Dec-01
Nov-01
Oct-01
Sep-01
Aug-01
Jul-01
0
components: early intervention and infant metabolic screening, which
identifies infants with potential developmental disabilities,
due to inborn errors of metabolism. Early Intervention (PART C)
provides entitled services to children who have a developmental
disability or an established medical condition that has a likelihood of
resulting in a developmental delay. The CMS “EI” program is an
umbrella program with three components: IDEA, Part C;
Developmental Evaluation and Intervention; and, the Developmental
Disabilities Program. The eligibility criteria for participation in each of
these programs consist of the following:
1) IDEA, Part C – Infants and toddlers who have been diagnosed with
an established condition associated with developmental delay
(metabolic/genetic disorder, neurological disorder, severe sensory
impairment, or a severe attachment disorder, such as Autism
Spectrum Disorder) and those who have a developmental delay. A
developmental delay is said to be present when an appropriate
evaluation/assessment or informed clinical opinion shows a delay
in at least one of the following areas: 1) Cognition;
2) Physical/motor; 3) Communication; 4) Social/emotional; or 5)
Adaptive development. Such delay must be of 1.50 standard
deviation for greater below the mean or 25% delay or greater in
term of months of age. Eligibility is from birth to the child’s third
birthday; services are provided regardless of family income. This
program does not serve the at-risk population of infants and
toddlers, but only those who have been diagnosed with a
developmental delay.
2) Developmental Evaluation and Intervention Program (DEI) - DEI is
a coordination of services program intended to enhance a family’s
ability to maximize their child’s potential when there is a high risk of
developmental disabilities. The DEI program provides
comprehensive assessments of the needs of infants born or
transferred into a DEI designated hospital and served in the
neonatal intensive care unit (NICU) for five or more days. It also
serves infants identified as hearing impaired or at high risk of
hearing impairment and infants who have been referred by the
CMS Genetics/Screening Program. Infants identified in the NICU
must meet medical and family income eligibility criteria to receive
services under this program component. Services provided include
evaluations and assessments, service coordination, referrals for
parent support and training services, and periodic evaluations after
hospital discharge.
DEI also includes the Infant Hearing Impairment Program, a
program component that provides infant hearing services to
maximize the developmental potential of infants with impaired
hearing. These services are provided for infants born or served in a
DEI designated hospital, regardless of the family’s income.
Services include the provision of audiometric screening, diagnosis
11
and referral services to those infants identified as a high risk for
hearing loss. Services provided under this program component are
coordinated with the local school districts that provide for the
educational management of children with hearing impairments.
3) Developmental Disabilities Program – This Program provides
services authorized under Chapter 393, Florida Statutes, only for
infants and toddlers who meet eligibility criteria established under
the Infants and Toddlers EI Program (Part C). Again, these children
must be diagnosed with a developmental delay or an established
condition that places them at high risk for a developmental delay.
NOTE: This is the only program in the Department of Health that
specifically serves individuals with developmental disabilities.
Evaluation. The Institute for Child Health Policy conducts an annual
evaluation of the Florida KidCare Program, which includes CMS, for
the Agency for Health Care Administration. The latest evaluation
covers the time period of July 1, 2001 through June 30, 2002 and
reviews families’ participation and satisfaction with the various
components of KidCare. Overall, as in the prior year, a significantly
higher percentage of CSHCNs remained enrolled in CMS (77%) when
compared with those children who remained enrolled in other parts of
the KidCare program (71%). The report concludes that it is possible
that parents who do not perceive their children to have special health
care needs are more likely to disenroll from the program. It is also
possible that some children’s health improved and they no longer need
the program. A certain percentage of these families may also have
moved from the state.
THE DEPARTMENT OF CHILDREN AND FAMILIES
Mental Health Services. The Alcohol, Drug Abuse and Mental Health
(ADM) program provides subcontracted mental health services to
children who have been diagnosed as Severely Emotionally Disturbed
(SED), Emotionally Disturbed (ED) or are at risk of ED. During the
fiscal year 2001-02, with a budget of $294 Million, a total of 77,803
children were served. These include:
SED = 48,785
ED
= 25,667
At risk = 3,351
77,803
Under this program, children are able to receive services and remain in
the community. Last year, SED children spent an average of 347 days
per year in the community and were in school 90% of the time. ED
children spent an average of 358 days in the community and were in
school 93% of the time.
12
THE DEPARTMENT OF EDUCATION
Health Care - Once a child reaches school age, any occupational,
physical and speech therapies, that are specifically designed to
augment a child’s educational experience, are provided by local school
districts in conjunction with the CMS Network. Though the Department
of Education is required by statute to provide medical services to these
children, the range, number and availability of services can vary across
school districts. When shortages of services, e.g., therapies, exist in
certain geographic areas, service delivery may be inadequate in those
locales.
Provision of health care services to school-aged children is through the
Medicaid Certified School Match Program. This program is a
reimbursement to schools for services to Medicaid eligible students
under the age of 21, who are covered under IDEA (Individuals with
Disabilities Education Act). These “medically necessary” services are
provided or arranged by school districts, which are responsible for
ensuring that students with disabilities receive all services necessary
for a free and appropriate public education, including health services.
All school districts participate in the school match program, though not
all provide services each year. In 2001, 41 of 68 districts provided
services to students; with great variation in the amount of services
provided. Medicaid services most frequently provided are the various
therapies (Physical, Occupational, Speech), nursing services, mental
health using a psychologist and mental health using a social worker.
Transportation to an off-site provider is also offered by a number of
districts.
The county health department, other public health entities, or
contracted Medicaid community providers may deliver these health
services. School districts may also enroll to become Medicaid
providers themselves. Districts may use some or all or these
alternatives. However, they retain the final responsibility for providing
necessary health care to all students with disabilities.
Health services that may be provided include mental health services
(psychological evaluations, behavioral evaluations, functional
behavioral assessments, consultation, development of evaluative
reports, coordination of services with other agencies, therapy,
counseling, crisis intervention and other treatments/interventions
related to behavioral services). Other services often provided are
occupational/physical and speech/language therapies. All services that
a student receives must be specifically designated on the child’s
Individual Education Plan (IEP).
Educational Services – The federal Individuals with Disabilities
Education Act (IDEA) was passed in 1990 and reauthorized in 1997. It
replaced the earlier P.L. 94-142, and mandates that all children with
disabilities receive appropriate educations in the least restrictive
13
environments. In Florida, the educational programs and services for
children with special learning needs is the Exceptional Student
Education (ESE) program, sometimes also referred to more generically
as “special education.” For the school year 2001-02, there were
376,074 children served in the ESE program, excluding those
considered “gifted.” This represents 15% of the state’s public school
student population of 2,500,161 for this year.
Within the DOE, the Bureau of Instructional Support and Community
Services supports the 67 Florida school districts and their ESE
programs. Districts and schools develop their own programs to serve
their students in the most effective way possible, while the Bureau
provides training and technical assistance to school staff and district
administrators, gives information on relevant state and federal laws
pertaining to ESE, monitors compliance with those laws, and helps
resolve conflicts between school districts and families of ESE students.
The appeals of district due process hearings are made to the Bureau.
In addition, the Bureau’s Clearinghouse Information Center provides
disability materials to parents, as well as information about the rights,
processes and activities involved in ESE. Parental involvement and
parent/professional collaboration are encouraged throughout.
The State Department of Education does not use the term
“developmental disability” when identifying a child’s impairment.
Rather, the DOE uses 18 different categories or groups to describe the
type and level of disability and suggest the degree of assistance that
students in each category may need. For example, children with
mental retardation may be classified as Educable Mentally
Handicapped (EMH – mild impairment), Trainable Mentally
Handicapped (TMH – moderate or severe impairment) or Profoundly
Mentally Handicapped (PMH - profound impairment). All ESE
categories, and the number of children served in each group last year,
are listed in the accompanying box. [NOTE: These categories and the
DOE descriptions in this section are not in “people first” language. The
terminology used by DOE is derived from education statutes.]
EMH
29,546
TMH
8,809
PMH
3,025
Orthopedically Impaired (OI)
4,934
Speech Impaired (SI)
55,486
Language impaired (LI)
34,389
Deaf or Hard of Hearing (DEAF)
3,628
Visually Impaired (VI)
1,330
Emotionally Handicapped (EH)
30,598
Specific Learning Disabled (SLD)
70,416
Hospital/Homebound (HH)
2,569
Dual Sensory Impaired (DSI)
72
Autistic
5,293
Severely Emotionally Disturbed (SED) 7,183
Traumatic Brain Injured (TBI)
495
Developmentally Delayed (DD)
10,162
Established Conditions (EC)
159
Other Health Impaired (OHI)
7,980
Total
376,074
14
According to the DOE 2002 SEA Profile, within the ESE Program the
most commonly occurring student disabilities are SLD – 45%, EH/SED
– 10%, SI – 15% and EMH – 8%. The table below reflects the percent
of each disability within the total student population.
Disability Type
SLD
EH/SED
SI
EMH
All Disabilities
45%
10%
15%
8%
All Students
7%
2%
2%
1%
Available supports. The particular supports available to ESE students
fall into three categories: supplemental aids and services, special
education services and related services. Supplemental aids and
services are aids, services and supports provided in general education
classes (or other educational settings) to enable a student to be
educated with non-disabled peers. Services may also include special
accommodations. This category of supports might include such things
as a personal care aide, a note taker, a voice-activated computer and
other assistive technology devices.
Note: Recently, certain concerns
have been addressed to the
Advocacy Center for Persons with
disabilities regarding DOE’s
Certifying
the
Educational
Relevance of Therapies (CERT)
profile chart. This tool gives
schools the authority to deny
occupational and physical therapy
to DD and MH students, if any of
the
following
professional
documentation exists: “Student is
progressing as well in this area as
in other areas of development.
Developmental age, physical
limitation or cognitive ability limits
student’s
improvement.”
or
“Student
requires
totals
assistance
by
staff.”
or,
“Student’s functioning in the area
remains unchanged, despite
multiple efforts by the therapist to
remediate the concerns or to
assist
the
student
in
compensating.”
Special education services are specially designed instruction and/or
interventions to meet the unique needs of the student, such as a
special resource class. Related services are those services that the
student requires to benefit from ESE, such as counseling, therapies,
social work services, etc.
For the 2001-02 year, the estimated funding for ESE statewide was
more than $3.2 billion. This includes legislative appropriations through
the Florida Education Finance Program, as well as $362.4 million in
federal dollars through IDEA. Classes are available from prekindergarten through grade 12; ESE students may attend school until
they graduate or they reach age 21.
An Example of Exceptional Student Education – Mentally
Handicapped.
During the 2001-02 school year, public schools in Florida were serving
41,380 mentally handicapped students aged 21 and younger. The
numbers of children with these disabilitiesranged from 21 in Glades
County to 4696 in Miami-Dade County. According to DOE, a “mental
handicap” is defined as significantly sub-average general intellectual
functioning existing concurrently with deficits in adaptive behavior and
manifested during the developmental period. Mentally handicapped
students are classified as: 1) educable mentally handicapped or mildly
impaired in intellectual and adaptive behavior, with development that
reflects a reduced rate of learning; 2) trainable mentally
15
handicapped or moderately/severely impaired in intellectual and
adaptive behavior, with development that reflects a reduced rate of
learning; and, 3) profoundly mentally handicapped or profoundly
impaired in intellectual and adaptive behavior, with development that
reflects a reduced rate of learning.
Students may be classified as eligible for participation in a mentally
handicapped program on the basis of their performance on
standardized tests designed to measure their intelligence. However,
regardless of the student’s measured level of intelligence, he/she can
only be classified as mentally handicapped if, in addition to exhibiting a
qualifying level of intelligence, his/her assessed adaptive behavior falls
below that of other students in the same age and socio-cultural group.
State Board of Education rules identify three sub groups of mentally
handicapped children that are differentiated on the basis of student
performance on standardized intelligence testing. These groups
include:
The measured intelligence of an educable mentally handicapped
student generally falls between two and three standard deviations
below the mean for the test instrument used;
The measured intelligence of a trainable mentally handicapped
student generally falls between three and five standard
deviations below the mean for the test instrument used; and,
The measured intelligence of a profoundly mentally handicapped
student generally falls below five standard deviations below the
mean for the test instrument used.
Teachers, counselors and
school administrators must first
rule out the possibility that a
sensory or communication deficit
is the cause of lowered
intellectual
or
adaptive
functioning. Before a referral can
be made for an evaluation of a
mental handicap, the district
must first screen the child’s
vision, hearing, speech and
language abilities.
A student is eligible for a special program for the mentally handicapped
if there is evidence that the student’s measured level of general
intellectual functioning is two or more standard deviations below the
mean; the assessed level of adaptive behavior is below that of other
students of the same age and socio-cultural group; and, the student’s
demonstrated level of performance in academic, pre-academic or
developmental achievement is sub-average.
Furthermore, if the child has been enrolled in basic education
programs for more than six weeks, the school must take other
measures to address the child’s learning problem. These include:
Conducting two or more conferences of parents, teachers, counselors
and school administrators concerning the student’s specific problem;
Developing anecdotal records or behavioral observations that cite the
specific behaviors indicating a need for referral, with the observations
made by more than one person in more than one situation;
Conducting a minimum of two interventions or adjustments (in the
schedule, teacher or instructional technique) for the student;
Reviewing social, psychological, medical and achievement data in the
student’s educational records; and, Reviewing the student’s
attendance records and, where appropriate, investigating reasons for
excessive absenteeism.
16
The minimum evaluation for all three categories of mentally
handicapped students must include a standardized individual test of
intellectual functioning, individually administered by a professional
person qualified in accordance with the state Board of Education rules;
a standardized assessment of adaptive behavior; an individually
administered standardized test of academic or pre-academic
achievement; a social development history compiled directly from
information provided by the parent, guardian or primary caregiver; and,
in addition, for children being considered for a program of profoundly
mentally handicapped students, a report of a medical evaluation by a
licensed physician may be required by the school district.
Students eligible for and enrolled in a special program for the mentally
handicapped may continue to participate in that program until dismissal
from the program. Such dismissal will be based on criteria contained in
the district’s Special Programs and Procedures for Exceptional
Students, as required by the State Board of Education.
Transportation. All transportation of students to and from ESE
programs is provided by the individual school district. In addition, for
2001-02 the Transportation Disadvantaged Commission reports the
provision of transportation statewide to 139,639 children with
disabilities (the type of disability is not tracked) and to 69,819 children
with disabilities who are also considered to be low-income. While the
purposes of trips are not tracked according to riders, overall 28% of TD
trips are for medical purposes and 37% are for education/training
and/or daycare. Therefore, it can be assumed that a total of 210,000
children were transported for at least one of those purposes.
SERVICES TO CHILDREN IN OTHER SETTINGS
Children in Foster Care. Children with disabilities who are placed in
foster care settings should have continued access to community based
services and treatments. However, the official liaison process between
the foster care system and the DDP must be initiated and completed
by the foster care worker assigned to the individual child. Heavy case
loads and staff turnovers can work against the successful completion
of this process. As a result, a delay in initiating services or an
interruption in service continuation may well occur. The liaison process
is further complicated when a child is moved to a new school, where
the new teacher does not know the child’s particular needs.
Children in the Juvenile Justice System. Children with disabilities who
remain in their homes on probation continue to receive services in the
same way as before probation. However, children who are placed out
of their homes and into detention centers may encounter problems with
continuity of health care or services.
According to a 1998-99 survey by the Department of Juvenile Justice,
5% or 529 youths were considered to have a developmental disability
17
and another 12% or 1269 showed significant deficits, which suggested
a developmental disability. In 2001-02, 78 children with low intellectual
functioning were placed in specialized residential programs, as a result
of multidisciplinary placement staffing. Services available to these
youth include case management services, behavior modification,
counseling, mental health services, social skills enhancement, prevocational and vocational services, health services and family
intervention. Contracted professionals provide these services in the
residential treatment commitment programs.
SUMMARY OF SERVICES AVAILABLE TO CHILDREN
Within the State of Florida, health and educational services are
available to children until they reach age 21. The Department of Health
provides preventive, primary and specialty services to children with
special health care needs. The Early Intervention program serves
infants and toddlers with both health care and educational services.
Throughout their school years, managed health care is available via
the Children’s Medical Services Network. Behavioral and mental health
services are also available, as needed; the latter may be provided
through the Department of Children and Families.
The Department of Education provides services to children with
developmental disabilities from pre-kindergarten through age 21. It
also provides therapies and other services to augment a child’s
educational experience. There are no waiting lists for public school
classes, but the therapies and services an individual child needs are
not always available in all schools at all times.
POTENTIAL OBSTACLES TO SERVICES FOR CHILDREN.
#1)
Eligibility for Children’s Medical services (CMS) is financial and
medical. Children who do not meet the financial eligibility requirement
may find that the services they need (e.g., intensive therapies for
children with autism) are not covered under private health insurances.
#2)
Though school districts are mandated to provide necessary
augmentative services, when such services are in short supply in
certain areas of the state, the child may not receive them.
#3)
Certain professional documentation on a student’s CERT
profile may unjustly result in the termination of needed therapies.
#4)
Funding caps (such as limitations on enrollment in KidCare)
may preclude access to health care services, particularly for children
whose physical disabilities or health care needs are less severe.
Recommendations to address these and other gaps and obstacles to
services for children, are proposed in Part Two of this report.
18
II. SERVICES FOR CHILDREN TRANSITIONING
FROM SCHOOL
While the previous section of this report described services available to
children throughout their school years, this section focuses on the first
major life transition encountered by individuals with disabilities—the
time when they graduate from school.
Nationally, less than 8% of students with a disability leave school with
a job, are enrolled in post-secondary education, are involved in
community recreation and leisure activities, or are living in an
independent situation – according to Ellen Condon, Transition Project
Director at the University of Montana. In fact, those students likely to
leave school without the skills and supports necessary to work in the
community are those with the most severe disabilities. Poor postschool outcomes are linked to the absence of vocational preparation,
poor transition planning and ineffective linkages to adult services and
supports, prior to graduation.
Condon also notes that, “ A major difficulty in planning for a successful
transition from school to adult life for students with ongoing support
needs is overcoming the differences in how schools and adult
agencies provide services.” Special education is an entitlement,
services that a student receives by virtue of his or her disability. On the
other hand, the services provided by VR and the DDP are based upon
eligibility and availability. Even when a person is deemed eligible,
availability (due to a lack of funding or provider capacity) can limit
access. This is clear from developmental disabilities programs across
the country, where the waiting lists average five years.
Further complicating matters, the services available may not fit the
needs of the transitioning student. Obtaining and administering
services can also be challenging.
In the school setting, educational personnel manage and oversee the
provision of services. For adults, the tasks of identifying, selecting,
applying for and coordinating services, sometimes from a confusing
array of agencies, may be left to the graduate and the family during the
transition process.
Whether a child receives a regular or a special diploma, or a certificate
of attendance, leaving the school environment (at the maximum age of
22) constitutes a radical change in everyday life and the attendant
services and supports. Whether that change is abrupt and/or has a
positive impact on the life of the individual and his or her family
depends, to a large degree, upon the amount and quality of transitional
planning that was done. A discussion of the public services available to
help accomplish transitional planning, as well as the various life areas
and supports that generally are considered after graduation follows.
19
TRANSITION RESOURCES
Currently there are two publicly funded projects in Florida that
specifically provide information to individuals with developmental
disabilities and their families about school transitions. These projects
include the Family Network on Disabilities’ TILES project, which
provides training and information to enable individuals with disabilities,
their parents, families, guardians and advocates to participate more
effectively with professionals in meeting the vocational, independent
living and rehabilitation needs of individuals with disabilities. This
Clearwater-based project provides workshops and information about
effective transition planning to students, aged 14-22.
The second specific project is the Transition Center at the University of
Florida in Gainesville. Its purpose is to provide statewide support in
transition planning to students with disabilities and their families,
educators, agency and community representatives. The Center has a
resource library, web site and newsletter. It also provides technical
assistance and training workshops to local school districts.
Once a child turns 18, problems
may arise if the person is not
already on Medicaid. If receiving
non-Medicaid insurance, he or she
may experience dramatic gaps in
service upon entering the adult
insurance
system.
Medicaid
recipients also experience changes
at age 21, when many of the
therapies received during the
school years will be dramatically
decreased.
HEALTH CARE
Some of the most important changes to affect an individual with a
disability occur in the area of health care, since there are differences in
coverage between adults and children under the Medicaid State Plan.
When an individual reaches age 21, coverage for certain services
under the State Plan decreases. The most significant of these changes
are:
 Dental services (as of July 2002) – limited to emergency
extractions and abscess treatment to alleviate pain/infections;
 Durable Medical Equipment (DME) – some services and
medical supplies are reimbursable only for individuals under 21
years of age;
 Hearing services – fittings for hearing aids in both ears require
prior authorization when an individual is over age 21;
 Inpatient hospital services – limited to 45 days per state fiscal
year (July 1-June 30);
 Outpatient hospital services – with some exceptions for certain
outpatient surgeries, reimbursement is limited to $1500 per
state fiscal year;
 Prescription drugs – for individuals over age 21, reimbursement
is limited to four brand name prescriptions per month; and,
 Therapies (Physical, Occupational, Speech) – these are
generally not available to individuals age 21 and older.
Parents of children with special health care needs who received
services from CMS during their school years will find obtaining
insurance difficult as these youths transition to adulthood.
Insurance policies are often unaffordable and seldom cover the
broad array of specialty care and prescriptions needed by young
20
adults with special health care needs. Yet, medical professionals
recognize that access to quality health care for children in this
population is critical for a successful transition from dependence to
independence. Families of CSHCNs also report serious difficulties in
finding dentists to care for their children. This issue becomes more
prominent during the transition years.
DENTAL SERVICES
The Developmental Services Medicaid Waiver is uniquely designed to
serve the needs of individuals with developmental disabilities beyond
what is provided under the Medicaid State Plan. Consumers of any
age who are enrolled in the Medicaid Waiver are covered for the
following dental services: diagnostic, preventive and restorative
treatment, extractions and endodontics, periodontal and surgical
procedures. The services must prevent or remedy dental problems that
would otherwise compromise the person’s health. Routine preventive
cleanings may also be provided under the waiver.
Adult Medicaid beneficiaries not under the waiver have the alternative
of obtaining dental services from one of the 24 Federally Qualified
Health Centers (FQHC) located throughout the state. FQHCs charge
for dental services on a sliding fee scale, dependent on income. They
provide dental services either on-site or through contracts with local
dentists. As some children become adults, they may be eligible for
medical care coverage under Medicare. However, dental care is not an
item that is covered by Medicare.
Enrique is a 20-year-old who
has cerebral palsy and mild
mental retardation. He will be
finishing high school year next
year and wants to live on his
own after leaving school. His
older brother has his own
apartment
and
Enrique
associates living on his own
with being an adult. Living
independently
with
a
roommate is part of his
transition plan, which also
includes a job and attending a
community
recreation
program. Some of the supports
and services Enrique needs
include
supported
living
coaching and assistive devices
for his job.
EDUCATIONAL SERVICES
The completion of high school is the beginning of adult life. Entitlement
to public education ends, students and their families are faced with
many options and decisions about the future. Under the federal
mandate of IDEA, all children enrolled in an ESE program must receive
transition services from their school districts. In Florida, the
Department of Education, Vocational Rehabilitation Services, and,
where appropriate, the Division of Blind Services are required by law to
provide services to students with disabilities. Transition services (also
called School-to-Work Transition) are joint, coordinated activities
meant to promote successful movement from the world of school to the
world of adulthood.
Post-school choices that are considered in transition planning include
postsecondary education, vocational training, integrated employment,
(included supported employment), continuing and adult education
(workforce development education, adult general education, GED test
preparation, community education), adult services (generally via VR
and DDP), independent living (supported living, group home, in-home
supports, etc. via DDP) or community participation (recreation, leisure,
21
volunteering, civic and religious organizations). The mechanism for
developing transition services is the student’s Individual Education
Plan (IEP). Annual team meetings are held to formulate the Transition
IEP. Members of the team include the student, parents, ESE teacher
and related school staff, as well as relevant community agency
personnel. Mentors or prospective employers may also participate.
Within the school setting, these transition services must begin at age
14 (or younger if appropriate) and include the following specific,
ongoing planning activities:
1) At age 14 and updated annually, develop a statement of the
child’s transition needs within the Individual Education Plan
(IEP) that focuses on the child’s courses of study;
2) At age 16 (or younger, if determined by the IEP team), a
statement of needed transition services including
interagency responsibilities or linkages;
3) At age 17, a statement that the child has been informed of
his or her rights, that will transfer to the child upon reaching
the age of 18 (legal majority).
Transition Outcomes. The outcomes to result from transition planning
are based upon the student’s needs, preferences and interests and
include, as appropriate to the individual:
1) Specially designed instruction (as ESE)
2) Developmental, corrective or other supportive services to
assist a student to benefit from ESE (transportation to
employment training site, job coaching, mentoring, among
others)
3) Community experiences (banking, shopping, social or
recreational activities)
4) The development of employment and other post-school
adult living objectives (includes registering to vote, renting a
home, accessing medical services, etc.)
5) Acquisition of daily living skills (meal preparation,
budgeting, home maintenance, bill paying, caring for
clothes, grooming, etc.)
6) Functional vocational evaluation
Marsha is a 17-year-old with mild
cognitive disabilities and a hearing
impairment. She has a transition
goal of full-time employment upon
graduation. The IEP transition team
identified the following supports for
Marsha: visual cues for the steps of
the job, reliance on co-workers to
assure safety, monitoring for errors,
a flashing light on the telephone,
and training to use public
transportation.
The primary post-school outcome statement is the student’s vision or
dream for three to five years after graduation. This is an important
component of the IEP process because it identifies the ultimate goal
for the student. All other components of the IEP should lead to and
support this outcome statement. Representatives of any agencies (VR,
DDP, technical centers or other community agencies) that are likely to
provide or pay for a needed transition service must be invited to
Transition IEP meetings, starting at age 16. When agency
representatives are unable to attend a meeting, the school district must
take other steps to assure that agency’s participation in the planning
process.
22
While appearing straightforward on paper, the Transition process can
be a complex undertaking, particularly for students with severe
disabilities. Many factors can impact its effectiveness, including the
knowledge of the ESE teacher and school staff, the understanding of
the process and degree of participation by the student and his/her
family, the commitment of the VR and DDP programs to provide
services, the existence of waiting lists for publicly funded services in
the future, consistency and updating of the IEP from its inception to
post school implementation and the existence of appropriate
community resources and supports.
Diploma Decision. The State of Florida offers students the option of
obtaining a standard diploma or a special diploma upon graduation
from high school. (Some schools offer a choice between two special
diplomas, the second of which involves mastery of competencies
related to employment and community living.) The type of diploma that
a student receives will determine eligibility for post-school options and
is very important. The choice of a diploma is made at the IEP meeting
when a student turns 14 – the first transition IEP meeting. ESE
students who do not earn a diploma will receive a special certificate of
completion. However, this certificate is not a diploma and will not be
accepted by vocational schools, community colleges, military recruiters
or recognized by employers.
Generally, when a student reaches age 16, the school will invite the
VR counselor to meet with school personnel and with the IEP team to
review the student’s plans and provide consultation and information.
The VR counselor and student will meet on a regular basis to discuss
vocational choices, plans and progress.
DIVISION OF VOCATION REHABILITATION (DVR).
The Division of Vocational Rehabilitation is the part of the Department
of Education that provides services for eligible individuals with physical
or mental impairments to prepare for, secure, retain or regain
employment.
Eligibility for VR services is based upon the presence of a physical or
mental disability and a goal of employment.
1. The physical or mental impairment constitutes or results in a
substantial impediment to employment.
2. The individual’s employment outcome can benefit from VR
services.
3. The individual requires VR services to prepare for, to get, to keep
or to regain employment.
An eligibility decision is made within 60 days after the application for
services. Individuals receiving either Social Security Disability Income
(SSDI) or Supplemental Security Income (SSI) for a disability are
eligible for VR services if the goal is to secure employment.
23
In addition to arranging any necessary evaluations, the VR counselor
will work with the student to develop an employment plan. Various
types of services and supports can be included in this plan to help the
individual reach the desired employment outcome, including job
placement and job coaching. Medical or psychological treatment may
be provided on a short-term basis. Artificial limbs, hearing aids,
wheelchairs, rehabilitation workshops, technical or trade school
classes, college classes or on-the-job training may also be provided.
Based on the disability and the vocational goal, VR also offers several types of services
that may be required by the student. These include:
 Transportation and vehicle modification, whichever is the most economical mode
for securing rehabilitation services and occupational goal;
 Books, occupational tools, equipment and other training materials;
 Occupational licenses;
 Rehabilitation technology to assist in evaluation, rehabilitation and employment;
 Maintenance, to cover additional costs incurred by the rehabilitation process;
 Interpreter services, telecommunications and other technological aids, and
 Referrals to appropriate community agencies.
Job Placement and Closure. When the individual is ready for
employment, the VR counselor assists with finding job openings in the
community, including supported employment. (NOTE: If the individual
is found ineligible for supported employment under VR, the service
may then be provided under the DDP waiver.) The counselor can give
ideas and advice on filling out job applications and interviewing for
particular jobs. The counselor can also work with an employer to
modify the job site and provide assistive devices to meet the
individual’s needs. Once the job is secured, the VR counselor will
assure that the employer and the individual are satisfied and will also
determine whether other services are necessary to maintain the job.
After at least 90 days of employment the counselor and individual will
determine if further VR services are needed. Once no further services
are needed the counselor ends his/her active participation in the
process. However, if the individual’s situation should change and
require additional assistance to maintain the job, this can be provided
without having to reapply to VR.
Quality Assurance and Monitoring. During or after the VR process an
individual may be asked to complete a consumer satisfaction survey.
These surveys are administered annually by Florida State University
under contract with the Florida Rehabilitation Council. The federal
Rehabilitation Services Administration may also conduct on-site
monitoring of the VR program. The 2002 Legislature moved oversight
of the DVR program from the Department of Labor and Employment
Security to the Department of Education
Services Provided. During FY2001-02 VR placed a total of 8579
24
individuals into gainful employment, in addition to serving other
persons who have not yet reached their employment goals. Of that
total, 7.3% or 626 are individuals with developmental disabilities.
However, VR only considers customers with mental retardation or
autism to be classified as having a developmental disability. Individuals
with other conditions that are considered developmental disabilities
under Florida Statute 393, such as cerebral palsy and spina bifida
would likely be classified as orthopedic disabilities. The total number
of people served by VR in 2001-02 according to disability type is
shown in the accompanying box.
VR Customers by Disability Type, 2001-02
Blind
Chronic Medical
Dev. Disabilities
Hearing Impaired
Learning Disability
Mental Illness
Orthopedic Dis.
Substance Abuse
1.3% or
17.4%
7.3%
10%
5.7%
30.2%
23.8%
4.3%
111
1493
626
858
489
2591
2042
369
VR does not track the individuals they serve with transition services
separately. These customers are included within the total. VR is often
the source of assistive technology for students transitioning from
school to employment. Because of the importance of this service, VR
includes 10 rehabilitation engineering technology consultants around
the state who provide technology assistance.
The Florida Division of Blind Services also provides transition services
for students with vision impairments. These services can include
vocational evaluation and assessment, low vision aids and
adaptive/assistive technology. After the student graduates, additional
assistance may be provided, when the student’s primary diagnosis is
blindness. These additional services may include mobility training, print
magnifiers, Braille keyboards, note taking devices, and specially
equipped computers for use on the job.
ASSISTIVE TECHNOLOGY
The use of assistive technology cuts across all ages and disabilities.
However, because of its critical importance in the transition process,
information about AT is presented here. Congress passed the
Technology-Related Assistance for Individuals with Disabilities Act
(Tech Act) in 1988 to increase access and availability to assistive
technology by citizens with disabilities. According to the law, such
technology is defined as, “any item, piece of equipment, or system,
whether acquired commercially, modified or customized, that is
commonly used to increase, maintain, or improve functional
capabilities of individuals with disabilities.” Assistive technology
enables people with disabilities to accomplish daily living tasks;
25
assists them in communication; and provides greater access to
education, employment and recreation. It can maximize physical or
mental functioning and minimize the impact of a disability.
In other words, AT includes devices and services as well as training
that help an individual select and use a device or aid. AT devices can
be both off-the-shelf and customized to the individual. Some examples
of assistive technology include scooters and wheelchairs, alternative
automobile controls, environmental controls (handles, switches, etc.),
augmentative communication aids, prostheses, hand splints and other
orthotics, hearing aids, low vision magnifiers and alternative
input/output devices for computers.
An assistive technology service is defined as, “any service that directly
assists an individual with a disability in selection, acquisition or use of a
technology device.” Services can include evaluation, maintenance or
repair and training for students, families or professionals.
A related concept, called universal design, refers to the process of
creating products and environments that are accessible to people with
a wide range of abilities, disabilities and other characteristics. The aim
of universal design is to make products and environments usable by all
people, to the greatest extent possible, without the need for adaptation
or specialized design. The more widespread adoption of universal
design will greatly minimize the need for assistive technology by
people with disabilities.
Assistive Technology (AT) Resources. Funded by the federal Tech Act
of 1988, the Florida Alliance for Assistive Services and Technology
(FAAST) is concerned with making this critically important technology
accessible and available to all who need it. (The Tech Act—and the
programs funded by it—is scheduled to sunset in FY 2004 unless
Congress takes alternative action.) To promote widespread information
about AT throughout the state, FAAST has four regional demonstration
centers in South, Central, Northwest and Northeast Florida. Each of
these centers provides information, hands-on demonstrations,
assessments and training on AT. In addition, two regional centers
maintain programs to match and recycle used AT devices throughout
the state. One center offers equipment exchange and three lend
equipment. Newsletters are distributed across the state to keep
individuals and professionals informed about current AT developments.
From July 2002 through March of 2003 the regional demonstration
centers provided the following services for individuals, family members
and professionals:
Services provided by
FAAST during 2002-3/03
Information and referrals - 2685
AT items loaned 87
Training provided 2061
Newsletters sent –
10,923
AT Demonstrations 1124
26
Also, in an effort to assure knowledgeable assistive technology
professionals, the Mailman Center maintains an on-line certification
course for AT professionals on its web site.
DEVELOPMENTAL DISABILITIES PROGRAM (DDP)
It is the role of DDP staff to collaborate with VR in transition planning
meetings to provide input on local support services, provide
information on medical and Social Security benefits, and provide
resources for counseling, advocacy, and follow-along support services
for supported employment. DDP staff can also provide information on
Medicaid waiver home and community based services that will enable
individuals to reach their goals for independence and community
integration. They should encourage students and their families to apply
for the waiver if they are eligible and have not already done so.
Other Transition Resources. Some school districts (such as Broward
County) also distribute manuals listing area community agencies that
provide some type of service related to the transition activity areas of
instruction, employment, community experiences, post school adult
living, daily living skills and functional vocational evaluations. These
manuals can serve to educate the individual and his/her family about
the myriad service and resource entities that exist in the local area.
Transition informational materials for students and their families are
also available through the DOE’s Clearinghouse Information Center.
Student materials are most appropriate for use by individuals who do
not have severe cognitive impairments.
SUMMARY OF TRANSITION SERVICES
Transition services are primarily initiated in the school system and
include the student, parents, ESE personnel, representatives from
DVR, the DDP, relevant community agencies and, where appropriate,
Division of Blind Services. Other services that impact upon transition
years include health care and dental services. Obtaining
comprehensive information and securing appropriate assistive
technology for a person with a severe disability can result in an
effective transition to the world of adulthood.
POTENTIAL OBSTACLES TO SERVICES
#1)
Lack of participation in transition process by poor, uneducated
and minority families
#2)
Inconsistency in the quality of transition planning within and
across school districts
27
#3)
Lack of a seamless transfer of assistive technology across life
stages, e.g., from school
#4)
DDP staffs sometimes discourage transitioning individuals from
applying for the Medicaid Waiver, due to the current long
waiting list.
#5)
Lack of availability of providers adequately trained to participate
effectively in transition services.
Recommendations to overcome these obstacles are proposed in Part
Two of this report.
III.
SERVICES FOR ADULTS
The previous sections of this report are concerned with individuals
from childhood through their school years. We now turn our attention to
the adult years, which comprise the largest portion of the life of an
individual with a developmental disability. In addition to being the
longest span of years, for many reasons, this time of life can also pose
the greatest challenges to the public entities charged with providing
services. (A separate, final section in Part One describes the services
and unique needs of older adults with disabilities and their families.)
Ira is a 39-yr-old man with cerebral
palsy who uses a wheelchair. A
college graduate, Ira lives with his
family. With his parents getting
older, Ira wants a good job and his
own apartment. He needs an
electronic communication device
and a source of dependable
transportation, as well as personal
care assistance. Ira has been on
the waiting list for the DDP waiver
since early last year.
The circumstances of each individual with a disability will differ
according to the individual’s abilities, level of impairment, changes in
health status, secondary disabilities, increasing age, as well as
changes in personal, environmental and financial resources. Yet, the
public service sector is asked to both anticipate and respond
appropriately to each change in an individual’s life. We expect this sort
of flexible service capacity to be available to the thousands of Florida
residents with disabilities who need services and supports, in order to
live as independently as possible in the community.
Areas of Service Need. Among the life areas of people with
disabilities to be considered in the section are: health care, residential
needs and in-home supports, employment and daily life activities, and
transportation. The major public service agencies mentioned here are
the Department of Health (DOH), the DCF/ADM (Alcohol, Drugs and
Mental Health) program, the Developmental Disabilities Program
(DDP), Medicaid and Medicaid Waiver services (AHCA), the Division of
Vocational Rehabilitation (DVR) and, Transportation Disadvantaged
(TD). [Note: Some individuals have Medicare coverage of some
aspects of their health care delivered by private providers.]
Demographic Factors. With its population of nearly 16 million across
54,000 square miles, Florida is a diverse state, both ethnically and
geographically. Of 67 Florida counties, 33 are considered rural by
statute. Scattered across the state are also several rural
28
communities that exist within metro counties. These 40 rural living
areas are served by a total of 29 rural, often small, community
hospitals. An associated economic diversity also exists, with 21 of the
33 rural counties reporting a per capita income that is less than 70% of
the statewide average.
It is a public health axiom that living in a rural location places an
individual with a disability and a chronic condition at greater risk. For
example, the Georgetown University Center on an Aging Society
reports that the proportion of rural residents with fair to poor physical
health is almost one and a half times that reported in urban dwellers in
the general population. The Center also finds that rural residents are
more likely to experience higher rates of chronic conditions and activity
limitations. They are also more apt to be uninsured for longer periods
of time, and less likely than urban residents to receive some types of
health care, including diagnostic tests for various chronic conditions.
Limited access to health care in rural areas is generally associated
with the fact that there are fewer providers.
Dental Care. The same is true with dental care. Among persons ages
18-64, 66% of urban adults compared to 59% of rural adults have been
to a dentist in the past year. There is a disparity in the supply of
dentists in rural areas, with 29 dentists per 100,00 residents in most
rural areas, compared to 61 per 100,00 in urban areas. Lack of access
to dental care is compounded for individuals with disabilities, as
providers with expertise in dealing with the complicated care are even
scarcer.
Dental Problems. Dental problems are more common in people with
disabilities and may more occur 15-20 years earlier than in the nondisabled population. Poor tooth alignment and positioning is common,
as are high rates of tooth decay and gum disease. A visit to the dentist
can be difficult for a person with a developmental disability, as fear,
anxiety and general discomfort run high. The individual may not be
able to sit comfortably in the dental chair or may be orally
hypersensitive and unable to tolerate the dental exam. Anesthesia may
be needed for something as simple as a cleaning. Dentists may need
to make accommodations in seating and lighting when treating people
with disabilities, and provide longer appointment times and more staff.
Reasons for the Shortage. Only about 4100 of a total of 200,000 U.S.
dentists are available to treat people with disabilities. Lack of proper
training is one reason for the shortage, but inadequate reimbursement
from Medicaid and other insurers means that the extended time
needed to treat patients with disabilities is without compensation.
A. HEALTH CARE SERVICES
It is common parlance to refer to all long-term care services as health
29
care, particularly in the case of adults with developmental disabilities,
since such services emanate from the Medicaid system. However, for
the purposes of this report, a distinction will be made between those
services that provide a direct medical or therapeutic benefit and those,
which deal with other life areas such as living arrangements,
employment and community mobility. The former will be discussed
under health care; the latter services under the relevant life areas
presented.
THE DEPARTMENT OF HEALTH (DOH)
DOH has three main roles in promoting and protecting the health and
safety of all people in Florida. These are 1) health protection, 2) health
promotion and disease prevention and, 3) health treatment.

Health Protection – Both natural and manmade environmental
conditions have an effect on the well being of Florida residents.
Contamination of the air, ground water, and food may cause
disease or death. The focus of public health efforts is to try to
prevent or contain such disease or contamination.

Health Promotion and Disease Prevention – Prevention is the
key to success in public health. Health promotion and
education programs are designed to inform individuals about
positive ways in which they can preserve or restore their own
health. Disease intervention programs work to stop the
transmission of diseases from a carrier to others by immunizing
people against certain diseases, treating new cases as they
occur, isolating carriers if necessary, and finding and testing
people who have been in contact with an infected person to
administer the proper treatment before the disease becomes
contagious.

Health Treatment – Health care of the sick and people with
disabilities is a role that public health undertakes when
individuals are too poor or otherwise lack access to health care
services.
The County Health Departments provide most of the public health
services in Florida, through partnerships among the state, district
offices and the counties. Most services are available at no charge or at
a small fee, based upon income. County health departments offer a
wide range of public health services, which includes primary care and
personal health services, disease prevention, health promotion,
diagnosis and treatment of diseases, and environmental surveillance
and control. The scope of services offered by or through the county
health departments varies among counties. However, all provide a
basic core of services, which includes community health assessment,
public health policy development and health assurance.
30
It is within each county health department setting that individuals with
developmental disabilities may be utilizing services, though no
statistics are kept of patients’ disabilities. One local department
administrator suggested that the most likely areas of use are the
Division of Family Health Services/Bureau of Family and Community
Health, which provides primary care, prenatal and well baby clinics,
and the. Division of Disease control, which deals with immunizations,
HIV/AIDS and sexually transmitted diseases.
The number of individuals with developmental disabilities who may be
served directly or indirectly by these programs is unknown, since there
is no mechanism for identifying an individual with a developmental
disability. However, at any given time, an individual county health
department may offer specialized clinics, prevention and education
programs or other local efforts targeted to individuals with
developmental disabilities. That discretion is left to the individual
counties.
Another area within the DOH that is likely serving individuals with
disabilities is the Division of Disability Determination, which is
responsible for making decisions regarding the medical eligibility of
Florida citizens applying for disability benefits under the state Medically
Needy program and the federal Social Security and Supplemental
Security Income programs. It also conducts reviews of existing
beneficiaries under the federal programs to determine their continued
eligibility.
THE DEVELOPMENTAL DISABILITIES PROGRAM (DDP)
Developmental disabilities can be defined in a number of ways. Under
federal law, a developmental disability is a mental or physical disability
that occurs before age 22 and substantially limits an individual’s ability
in three or more of the following life areas: self-care; expressive or
receptive language; learning; mobility; capacity for independent living;
economic self-sufficiency; or self-direction. Florida law defines
developmental disabilities more narrowly as only those life-long
conditions attributable to mental retardation, autism, cerebral palsy,
spina bifida, and Prader-Willi syndrome.
The Developmental Disabilities Program is one of ten programs
administered by the Florida Department of Children and Families.
Eligibility for services is limited to individuals three years or older who
have one of the five conditions mentioned above. Children ages four
and five that are at high risk for a developmental disability are also
eligible. Financial requirements must also be met for some services,
such as the Medicaid Waiver program.
Once a person becomes a client of the program, a financial evaluation
is made, to determine eligibility for Medicaid. Persons eligible for
Medicaid have a choice between institutional and community care.
31
Individuals not eligible for Medicaid have more limited access to
services and supports funded by general revenue dollars.
The Developmental Disabilities Program receives funding from the
State of Florida (General Revenue) and the federal government
(Medicaid Waiver). Each year, the Legislature determines what portion
of the state’s budget will be used to fund the DDP, specifying how
much general revenue funds are to be used to match federal dollars in
the Waiver. These combined state and federal dollars constitute the
greatest portion of the DDP budget. A small portion of general revenue
funds is also set aside to provide limited services for DDP clients who
don’t qualify for Medicaid.
Because of the nature of their disorders, adults with developmental
disabilities need long-term support. Historically, Florida provided this
support in large institutions, called developmental centers or
developmental service institutions (DSI). Today, four of these DSIs
remain, and one is scheduled to close in 2005. In 1971 Congress
authorized the Medicaid program to help states pay for these services
to people with developmental disabilities. However, Medicaid policies
at the time entitled individuals to receive care only in institutions and
not in other community settings. For many years, Florida delivered
care in either public institutions (DSI) or in private institutions
(Intermediate Care Facilities for Individuals with Developmental
Disabilities or ICF/DDs). It was not until the early 1980s that federal
and state governments began to realize that many individuals with
developmental disabilities could be served in community based
settings, if they received appropriate, individualized supports.
Community based services offer two distinct advantages over
institutional care. First, most individuals with developmental disabilities
prefer community based care to institutional care and, second, many
individuals can be served at lower costs in community settings. Having
this knowledge, the federal government subsequently allowed states to
enter into agreements that would allow them to change the service
delivery system for people with developmental disabilities. Under these
agreements (commonly called waivers), the federal government puts
aside certain Medicaid requirements, including the mandate that care
be provided within an institution. In return the state must assure that
services will meet certain standards and will not cost more on average
than institutional care.
Medicaid Waiver Programs in Florida. Currently, Florida operates a
specific Home and Community Based Services (HCBS) Medicaid
Waiver for individuals with developmental disabilities. It is one of ten
specialized Medicaid waivers administered by the State. The other
nine waivers are:
 Supported Living Waiver – also operated by the DDP, for
individuals aged 18 and older who are able to direct their
32








own support in most areas, and meet the level of care for
an ICF/DD;
Consumer Directed Care (CDC) – in part under the DDP
and originally a demonstration program, this waiver won
recent federal approval as a statewide Independence Plus
Waiver for individuals who choose to purchase their own
services;
Aged/ Disabled Adult Waiver – for persons over aged 65 or
adults with other disabilities;
Channeling Waiver – open to those 65 and older in MiamiDade and Broward Counties who meet the nursing facility
level of care;
Model Waiver – for children under 21 who are diagnosed
with a degenerative spinocerebellar disease;
Nursing Home Diversion Waiver – a pilot program for those
65 and older who are eligible for Medicaid and Medicare
and live in certain areas of the state;
Project AIDS Care Waiver – for individuals with a diagnosis
of AIDS who also have certain opportunistic infections;
Statewide Inpatient Psychiatric Program Waiver – for
children under 18 who need a maximum of 120 days
hospitalization to stabilize psychiatric problems; and,
Traumatic Brain Injury/Spinal Cord Injury Waiver – for
persons with an external injury who are also clients of the
Brain and Spinal Cord Injury Program.
The DDP Medicaid Waiver is meant to provide recipients
(beneficiaries) with services in certain basic life areas. These include:
- Having a safe place to live
- Having a meaningful day activity
- Receiving “medically necessary” medical and dental services, and
- Receiving the transportation required to access necessary services.
For adults, a “meaningful day activity” may be a choice of paid
employment, supported employment, adult day training or nonresidential support services. Furthermore, all waiver services must
meet the test of being “medically necessary” and satisfy the following:
 Be necessary to protect life, to prevent significant illness or
disability, or to alleviate severe pain;
 Be individualized, specific and consistent with symptoms or
confirmed diagnosis of the illness or injury under treatment
and not in excess of the person’s needs;
 Be consistent with generally accepted professional medical
standards, as determined by the Medicaid program, and not
experimental or investigational;
 Be reflective of the level of service that can be safely
furnished, for which no equally effective and more
conservative or less costly treatment is available statewide;
 Be furnished in a manner not primarily intended for the
33

convenience of the recipient, the recipient’s caretaker or the
provider;
Consistent with appropriate medical care, inpatient hospital
services could not be effectively furnished more
economically on an outpatient basis or in an inpatient facility
of a different type.
By way of comparison, HCBS waiver expenditures increased an
average of about 14% nationally between 1998-2001. During that
same period, Florida’s expenditures increased by 94%. This is
consonant with efforts in other states. In 2001, $10.5 billion in waiver
expenditures across the country were used to purchase community
based supports for individuals with developmental disabilities. This is a
larger amount than the total national expenditure of Medicaid dollars
($10.4 billion) to purchase services in ICFs/DD.
However, as recently as the year 2000, that latter trend was not true in
Florida, where federal Medicaid revenue was greater for ICF/DD
services ($159 million) than for the HCBS waiver ($134.7 million),
according to the University of Colorado, Coleman Institute.
DEVELOPMENTAL SERVICES HOME AND COMMUNITY
BASED SERVICES WAIVER.
The DDP waiver is a Medicaid program that provides home and
community based supports to eligible persons with developmental
disabilities living at home or in a home-like setting, as an alternative to
living in an ICF/DD. The waiver is funded by the federal Centers for
Medicare and Medicaid, combined with matching state dollars. The
waiver is operated by the DDP, under the authorization of AHCA’s
Division of Medicaid. Local district/regional offices enter into contract
with private service providers.
Eligibility Requirements for the Waiver. All participants in the waiver
are eligible for admission to an ICF/DD and must be provided a choice
of receiving services in an institutional setting or in a home and
community-based setting. In addition to meeting financial eligibility
requirement for Medicaid, in order to participate in the waiver the
individual must:
1. Be a consumer of the DDP
2. Meet one of the following level of care eligibility options:
1). An IQ of 59 or less; or
2). An IQ of 60-69 and the individual has a secondary
handicapping condition which includes cerebral palsy, spina
bifida, Prader-Willi syndrome, epilepsy, autism, ambulation,
sensory, chronic health and behavior, or
3). An IQ of 60-69 and the individual has severe functional
limitations in at least three of the major life activities, including
self-care,
34
learning, mobility, self-direction, understanding and use of
language, and capacity for independent living, or
4). A primary disability of autism, cerebral palsy, spina bifida or
Prader-Willi syndrome. In addition, the condition must result in
substantial functional limitations in three or more major life
activities, such as self-care, mobility, learning, self-direction,
understanding and use of language and capacity for
independent living.
In addition, the individual or his/her legal guardian must choose to
receive home and community-based supports and services. According
to guidelines, individuals enrolled on the waiver are to be provided with
those services that have been determined to be medically necessary
with reasonable promptness—within 90 days of the date of the
individual’s enrollment on the waiver, or request, to the extent that
sufficient provider capacity exists.
A wide array of services is available on the DDP Medicaid waiver.
Currently all services must be planned by and coordinated with a
support coordinator. Individual clients can select locally from nearly
500 waiver support coordinators across the state, when they are
enrolled on the waiver. These private waiver support coordinators work
with the individual recipients and their families to determine an
individual’s service needs, develop support and cost plans, coordinate
service delivery and monitor the use of services. Some services are
directly related to health or dental care. As mentioned earlier, other
services refer to living arrangements, day activities or transportation. A
number of services may overlap various life areas.
The health/medical services include: adult dental, behavioral services,
dietician, occupational therapy, physical therapy, private duty nursing,
psychological services, respiratory therapy, residential nursing, skilled
nursing services, special medical equipment and supplies, special
medical home care, speech therapy, specialized mental health
services and therapeutic massage. (Primary and specialty physician
medical care, hospital in-patient and out-patient treatment, prescription
coverage, glasses, hearing aids, etc. are provided under the Medicaid
State Plan and are not covered by the waiver.)
Services that deal with living arrangements include: chore services,
companion services, environmental modifications, homemaker, inhome supports, personal care assistance, personal emergency
response system, residential habilitation and supported living
coaching.
Transportation provides access to community resources and waiver
services, and supports in many life areas. Services that deal with day
activities include: adult day training, non-residential support services
35
and supported employment. The Medicaid State Plan covers medical
trips.
Persons Receiving Institutional
Care 2001-02
MRDP Program
Sequin
Pathways (at Landmark)
Public ICFs
Private ICFs
Total served
124
30
16
1357
2068
3611
FUNDING AND INDIVIDUALS SERVED IN 2001-02
The total budget for the DDP during this year was $880 million.
According to AHCA, the number of individuals served under the HCBS
Medicaid waiver during 2001-02 was 24,954. Another 1636 were
served under general revenue dollars or under the Medicaid State
Plan. Close to 11,000 individuals are currently on the waiting list for the
Medicaid Waiver. Therefore, the combined total of individuals seeking
or receiving community based services is approximately 37,600.
Another 3611 people received institutional care the same year.
This brings the total number of currently known individuals with
developmental disabilities seeking or receiving services in Florida to
more than 41,000.
Individuals known to the DDP
Medicaid waiver
GR/Medical State Plan
Waiver wait list
Institutions
Total
24,954
1,636
11,000
3,611
41,201
A. Measure of Florida’s Success with Medicaid waiver services.
In recent years Florida has made considerable strides in the number of
individuals who participate in the DDP Medicaid waiver program, as
can be seen in the two following graphs.
36
On the Other Hand…As can also be noted from the above and
following three graphs, Florida still lags behind the rest of the country
in the amount of money it spends per participant on the Medicaid
waiver. Florida also ranks last among the six largest states for the total
dollars it spends on people with developmental disabilities, in
relationship to the total number of state residents.
37
SERVICES PROVIDED
The following table displays the health-related services provided under
the DDP waiver in 2001-02. The number of people served, dollars
expended and the percent of budget are shown for each service
delivered. A frequently requested service, adult dental care, was
provided to nearly 5000 people. As can be noted, all of these health
services comprise only a small portion of the overall waiver budget.
Only Consumable Medical Supplies accounts for 2% of the budget; all
other services equal 1% or less, per service.
38
FY 2001-02
PHYSICAL THERAPY
Behavioral Therapy
Occupation Therapy
Speech Therapy
Adaptive Equipment
Cons Med Supplies
Pers Emerg Respons
Private Duty Nursing
Skilled Nursing
Sp Med Home Care
Residential Nursing
Adult Dental Care
Dietician Services
Respiratory Therapy
Therapeutic Massage
Behavioral Assistant
Sp Mental Hlth Ther
Medication Review
Recipients
728
2,759
418
885
2,034
7,158
79
76
310
75
172
4,972
283
3
270
530
534
327
Amount Paid
$1,874,107
5,209,448
874,608
1,744,346
3,068,719
9,549,763
18,852
2,978,992
1,828,962
2,892,007
2,399,184
3,664,639
163,991
16,616
561,861
2,600,600
812,007
20,313
% of Budget
<1%
1%
<1%
<1%
1%
2%
<1%
1%
<1%
<1%
<1%
1%
<1%
<1%
<1%
<1%
<1%
<1%
Quality Assurance. Given the rapidity of recent growth in the DDP
Medicaid waiver program, and the need to assure quality services and
effective outcomes, in September 2001 AHCA contracted with the
Delmarva Foundation (an experienced non-profit, peer review
organization) to provide uniform, statewide quality assurance. During
their four-year contract, Delmarva will be conducting more than 10,000
person-centered interviews with a selected sample of individuals
receiving services. They will also be reviewing all providers of waiver
services, either on-site or by record reviews. Delmarva is partnering
with a number of recognized experts in the health and long-term care
field to accomplish their tasks.
Findings to Date. While the greater portion of Delmarva’s work is
currently underway and will continue till 2005, some expected
preliminary findings have emerged. These include the fact that, of the
26,163 individuals eligible for the Medicaid waiver program in the first
year of their review, 86% are adults over the age of 21; 444 are aged
65 or older. (See the following section of this report, Services for Older
Adults, for more details about this population.) 62% of these individuals
on the waiver reside in their family homes.
Prior Authorization. A second aspect of the checks and balances in
effect for the DDP waiver is the prior authorization component for costeffectiveness, being conducted by Maximus under contract with the
DDP. The role of Maximus is to assure that services requested by
support coordinators are medically necessary and meet the individual
consumer’s needs. They further ensure that providers deliver all
services with the appropriate intensity, frequency and duration. Prior
39
service authorization does not apply to every consumer, but rather to
those whose annual cost plans exceed the average cost of an ICF/DD,
$77,975. It may also pertain to other consumers when the cost of a
particular service is high, or when a combination of services has a
higher than average cost.
Services Outside of the DDP.
Mental Health Care Services. Another area of health care that is
available to adults, including those with developmental disabilities, is
mental health services. The DCF/ADM program that operates mental
health services has two main divisions: Mental Health and Substance
Abuse. The funding sources for these services are State general
revenue funds, a mental health block grant (primarily for children and
substance abusers) and federal Medicaid dollars, matched with state
funds. Across the state there are four civil mental health institutions for
adults (two are privately run) with a total of 1039 beds, and three
forensic facilities. ADM services are provided to three target groups:
adults with severe and persistent mental illness, adults in mental health
crisis and adults with forensic involvement.
Most mental health services are provided through a system of some
350 community based providers throughout the state. ADM manages
contracts with providers in 14 districts around the state. For access to
community mental health services, provider staffs enroll clients by
using a checklist to determine their eligibility through a combination of
diagnosis, client characteristics (legal status, functional level) and
requirements of the funding source.
Historically, the ADM program did not identify the recipients of its
community services by disability, so there was no way to determine
how many people with developmental disabilities were being served.
However, in 2002-03, some mental health programs began capturing
that information. To date, 3,871 individuals receiving community
services have been identified as having developmental disabilities.
[Note: While the Mentally Retarded Defendant Program (MRDP) is
located on the grounds of the North Florida State Hospital in
Chattahoochee, it is considered a secure DDP site, not a mental health
venue.]
SERVICES PROVIDED.
For FY 2001-02, ADM budgeted a total of $377 million and delivered
the following community services to adults: 1) Served 140,000 adults,
13,000 of whom are aged 60 and older; 2) Supported adults with
severe and persistent mental illness to live in the community an
average of 350 days and to be employed an average of 35 days a
year; and, 3) Avoided recommitment on over 98% of the community
forensic clients.
40
Quality Assurance for mental health services is provided primarily
through the use of performance measures, both client outcomes and
service outputs, which are developed for each target group served.
These performance measures for each relevant target group are
included in providers’ contracts and monitored at regular intervals
throughout the year.
With this overview of publicly funded health care services, we turn our
attention now to service needs in other core life areas—residential or
living options, employment and day activities, and transportation and
community mobility.
RESIDENTIAL SERVICES
DDP Services. The selection of a living arrangement is the basic
defining characteristic that determines whether the reception of
services for an individual will be in an institutional setting (public or
private ICF/DD) or in a home in the community. If a certain level of
care is needed, an individual and his/her family may opt for care in an
institutional setting. However, that is not the choice of most people.
There are four public institutions. Private ICFs/DD can be found in 28
of Florida’s 67 counties. However, not all of these venues have
vacancies. For instance, beds in specialized private ICFs/DD, known
as “cluster homes,” are limited and reserved for persons with the most
complex medical conditions and mobility impairments. As has been
noted, the four public institutions (DSIs) are being phased down. For
instance, the Community of Landmark in Miami is slated for closure in
2005; individuals residing there are being transferred to community
settings.
On the other hand, there is a range of residential possibilities that can
be considered community based. The DDP consumer may live
in a foster home, a small group home, the family home, or a home or
apartment of his/her own. Using state funds, the DDP pays foster
parents and may pay a provider for the cost of living in a group home.
Residential Habilitation (Res Hab). Individuals on the Medicaid waiver
who live in group homes pay their own living expenses from SSI, SSA
or SSDI benefits or private funds. These individuals then receive a
waiver service called Residential Habilitation (Res Hab), to provide
individualized training to help them acquire or maintain daily living
skills.
Though the DDP does not directly own any community residences,
services to support individuals who wish to live in their own homes are
available through the Medicaid waiver (supported living coaching, inhome supports, homemaker, personal care assistance, etc.) However,
it is incumbent upon the individual and/or family to first obtain the
home.
41
Supported Living Coaching is the second residential-specific waiver
service. This service is very broad, encompassing a variety of training
and support activities designed to support individuals who wish to live
in their own homes or apartments, integrated into the community.
Activities may include: assistance with locating appropriate housing;
the acquisition, retention or improvement of skills related to activities of
daily living such as personal hygiene or grooming; household chores;
meal preparation; shopping; personal finances; and, the social and
adaptive skills necessary to enable individuals to reside on their own.
Supported living services mean the provision of all supports necessary
for adults to establish, live in and maintain households of their own
choosing in the community.
Role of the Coach. A supported living coach performs three
assessments for the individual. These are a Functional Community
Assessment, a Housing Survey and a Financial Profile. The first, or
Functional Community Assessment, identifies the type of training,
assistance and intensity of support needed by the individual. It is a tool
designed to assist the coach with becoming familiar with the
individual’s capabilities and needs. This annually updated tool covers
all areas of daily life include relationships, health and medical
concerns, personal care, household and money management,
community mobility, recreation and leisure.
The Housing Survey is used to inspect a prospective home to ensure it
is safe for the potential occupant. The coach updates this survey
quarterly, also considering the individual’s overall health, safety and
well-being, and forwards it to the individual’s support coordinator.
The Financial Profile is an analysis of the household costs and
revenue sources necessary to maintain a balanced monthly budget for
the individual. The analysis will also substantiate the need for a
monthly subsidy or initial start-up costs. It is also a source of
information for determining a strategy for assisting the person with
money management. If a subsidy is needed, this must be approved by
DCF before the individual signs a lease.
Related DDP Services. While several Medicaid waiver services may be
used as supports in a residential situation (homemaker, chore, durable
medical equipment and supplies, etc.), two other waiver services are
often used to support individuals with disabilities who live in their own
homes. These are in-home supports and environmental accessibility
adaptations.
In-Home Support Services. These services provide an individual in
supported living with a support worker who is present from four hours a
day up to 24 hours a day. This worker may provide companionship,
personal care and assistance with daily living. The worker may also
live with the individual in the home or apartment, sharing living
expenses. These services are separate from, and in addition to, the
42
services performed by the supported living coach.
Respite Care. This service provides supportive care and supervision to
an individual when the primary caregiver is unable to perform these
duties due to a planned, brief absence, an emergency absence, or
when the caregiver is physically unable to provide care or supervision
for a brief period. This service may be provided in the person’s own
home, the family home or a foster home. (This service is used primarily
to support parent caregivers.)
Environmental Accessibility Adaptations. These are physical
adaptations to the individual’s home that are medically necessary to
avoid institutional placement and to enable the individual to be more
independent in the home. These adaptations include such things as
ramps, grab bars, widening of doorways, modification of bathroom
facilities, etc. These adaptations can be made only when the person is
living in his/her own home or in the family home; rental properties are
limited to minor adaptations and landlord’s approval.
SERVICES PROVIDED/RESIDENTIAL TRENDS
The following chart displays trends in Florida residential settings for
individuals who received Medicaid waiver services for the years 2000,
2001 and 2002. According to AHCA, the people receiving Res Hab
services in 2000-01 numbered 5741; Supported Living Coaching
services, 2870. For FY 2001-02, the totals for those services are 7609
and 3054 respectively.
Florida Residential Trends: Medicaid
Waiver - Years 2000, 2001, 2002
Individuals Receiving Residentialrelated Waiver Services (2001-02)
8000
6000
In-Home Supports –
Environ. Adapts. –
Personal Care –
Chore –
Homemaker –
Respite -
725
727
4756
81
696
5241
Res Hab
4000
Supp. Living
2000
0
2000
2001
2002
In 2003, the DDP waiver is currently serving 6,510 individuals with
Residential Habilitation (Res Hab) services and 3054 individuals with
Supported Living Coaching (SL) services. [Note: Although Res Hab is
a service generally provided in a licensed facility, it may also be
provided in some individual and family homes.] Res Hab is the single
most expensive service on the waiver. The cost of Res Hab services in
2001-02 was approximately $200 million (40% of the waiver budget).
For SL services it was $17 million. During that same year, $17 million
was also spent for the 834 individuals who received in-home support
services. [Note: While not all individuals who live independently receive
43
both SL services and in-home supports, it is a common service in
these settings.]
The DDP reports that a total of 455 individuals have moved from a
foster home, a group home or from Res Hab services into a supported
or independent living situation since 1999.
Irma is a 37-yr-old woman with mild
mental retardation who has lived in
a group home for 20 years. Now
she wants to have her own home,
where she can have some privacy
and enjoy her own things.
Florida Housing Coalition. The Affordable Housing Opportunities
project is funded by the Florida Developmental Disabilities and
conducted by the Florida Housing Coalition, a statewide non-profit
organization. The Coalition brings together housing advocates and
resources so that all Floridians have a safe and affordable home and a
suitable living environment. This project conducted a needs
assessment to determine the scale and scope of housing available to
individuals with developmental disabilities. The project also provided
technical assistance to stimulate demonstration-housing partnerships
around the state, and studied existing examples of best practices that
occurred between 1998-2002. Certain key findings emerged from their
September 2002 report, Affordable Housing Opportunities for People
with Developmental Disabilities: Demonstration Projects and Best
Practices. Among these findings are: 1) There is a critical shortage of
housing for people who have extremely low incomes; 2) People with
disabilities generally have disproportionately low incomes compared to
area median income levels; 3) Low income levels create such a barrier
to obtaining housing that services, such as supportive living, cannot be
used effectively; and, 4) Living in a home of one’s own rather than a
congregate setting may be an impossible dream for many people with
disabilities, unless innovative solutions are developed and used.
The report also notes that for individuals with incomes under $500 per
month, rental housing is the most accessible and convenient form of
housing. However, an increase in existing rental assistance programs
and creation of new state and local programs is needed. Overall, the
study indicates that there are, indeed, a few exemplary housing
programs in Florida that are creating housing for low-income
households with special needs such as disabilities. Unfortunately,
these exemplary efforts are not widely known or replicated statewide.
More typically, a creative supported living coach discovers local
housing assistance programs and initiates activities on behalf of one
individual. [Note: The projects discussed in the demonstrations report
take place in mostly urban areas of the state.] Another finding is that
home ownership may be possible and successful for some few
individuals with disabilities who have both higher incomes and good,
ongoing support networks.
This report and earlier Coalition project activities make it clear that
there is a great need for training and technical assistance across the
state, to help individuals with developmental disabilities (and the
44
professionals who work with them) access the housing resources that
are available to all low-income residents. These include city and county
programs, housing counseling and education providers, non-profit
housing providers and the banking industry.
Equally clear is the need for increased advocacy to maintain and
increase funding for affordable housing at the state and federal levels,
as well as increased funding for direct rental subsidies, down payment
and closing cost assistance, below market rate interest and flexible
underwriting for individuals who have developmental disabilities.
The Need for Affordable Housing. The private housing market in
Florida does not produce an adequate supply of housing that is
affordable to people with low and very low incomes. A 1999 report
indicated a shortage of some 1,371,970 units statewide.
Housing Resources. Owning a home is dream of many people,
regardless of their income, culture or geography. Almost 75% of
Florida residents are homeowners. For most people, purchasing a
home is possible only with financing from an outside source. For a
person with a low or very low income it may be impossible to borrow
money to purchase a home, because saving enough money for a down
payment can be an overwhelming task on a minimum wage income.
Affordable housing programs are designed to bridge the gap between
savings and the down payment by adding subsidy dollars to the
amount a lender is willing to loan. The subsidy amount, usually a
second mortgage with flexible terms, can bridge the gap between a
buyer’s savings and the amount of the first mortgage.
SHIP. According to the Florida Housing Coalition, Florida ranks high
among other states for the quality of its affordable housing program,
SHIP. This State Housing Initiatives Partnership (SHIP) provides more
than $120 million each year to local governments to fund affordable
housing programs. These governments must create a Local Housing
Assistance Plan (LHAP), which identifies local strategies to develop
affordable housing, as a condition of participation in the program.
Created in 1992 by the William A. Sadowski Affordable Housing Act,
this documentary stamp surcharge produces revenue that is dedicated
to affordable housing.
SHIP funds can be leveraged with other money, such as private
lending sources, federal programs and mortgage revenue bonds. SHIP
is an excellent source of purchasing assistance because 65% of the
money must be expended on home ownership activities. SHIP is also
used for rehabilitating existing homes, including making accessibility
modifications. Local administering agencies (cities or counties) make
specific guidelines for these expenditures.
Other Considerations. When weighing the potential of home
ownership by a person with a developmental disability, the ability of the
45
person to make inevitable future repairs should be part of the equation.
Another consideration is that some individuals with disabilities will have
higher living costs than others. For example, not all medical costs may
be covered by Medicaid or insurance. As a result, the individual may
have to pay for certain prescriptions, treatments, equipment or
supplies. Further, if a special diet is involved, food costs may be
higher. Transportation costs may also be high, if the individual requires
special services. All of these items must be factored into an individual’s
housing plan to assure a successful outcome.
Local Agencies with Home Ownership Projects. A number of non-profit
agencies across the state administer programs to assist individuals
with disabilities to obtain their own homes. These include: Putnam
ARC, Putnam, Nassau and Levy Counties; Abilities, Inc. of Florida,
Pinellas County; Bradford ARC, Bradford County; Key Training Center,
Citrus County; CCAR Services, Inc., Clay County; and, Grove House,
Duval County. Among the services typically provided by these
agencies and their community partners are pre and follow up support
services, assistance with credit checks and down payment, assistance
with loan application and construction/rehab management, SHIP
financing for first or second mortgages, flexible underwriting of loans
and homebuyer training classes. Most of these non-profit agencies
provide some degree of supported living services to the homeowners.
Rental Housing. Approximately 25% of Floridians rent their homes. For
people with disabilities who have very low incomes, making the
transition to homes of their own is often more successful with rental
housing. However, rental rates and initial deposits can be very high,
seemingly putting safe, affordable housing out of reach. In addition, the
costs of any necessary modifications are generally the renter’s
responsibility. The solution can be local housing programs that offer
low rental rates, safety, accessibility and some permanency. The use
of Section 8 vouchers and other rental housing assistance are
essential when planning.
Beyond having adequate and affordable housing, persons with
disabilities must also be assured of well-established systems of
support services. Partnerships between affordable housing providers
and support providers must be synchronized from the outset, so that
the right combination of appropriate location, type of housing, cost, and
any necessary environmental modifications, or facilities for supports
(such as live-in attendants) is obtained. This sort of close collaboration
forms the basic foundation for successful rental housing development
for individuals with disabilities.
Local Agencies with Rental Housing Projects. Several non-profit
entities across the state operate projects to assist individuals with
disabilities to obtain rental housing. These include: the Coalition to
Assist Supported Living, Inc. (CASL) in Alachua, Lee, Sarasota &
Manatee Counties; Grove House (CASA Project), Duval County; and,
46
Abilities, Inc. (condominiums), Pinellas and Brevard Counties. Various
combinations of state, federal and private funds were used in these
efforts. The efforts undertaken by CASL are particularly noteworthy
and will be summarized as an example of a best practice by a
community entity.
Example of a Best Practice. A number of the members of CASL are
parents of individuals with developmental disabilities. CASL recognized
that, although supported living services are available from the DDP,
supported living providers are not allowed to also own the housing.
Consequently, there is a dearth of affordable, community based
housing. To fill the existing gap, CASL determined to become an
organizational homeowner and property manager. To accomplish this,
the group solicited funds from Lee, Manatee and Sarasota counties, as
well as the Selby and Venice Foundations. More than $2 million in
initial donations enabled them to purchase 20 homes, outright, for use
by more than 50 renters. Several more homes are also under contract
for purchase. As the owner, CASL is responsible for the insurance,
maintenance and general upkeep of the homes. Renters receive their
supports from local disability and supported living providers, usually
under the DDP Medicaid waiver. This simple concept of partnering a
separate non-profit property management organization with support
providers has proven so successful that it is under consideration in
other areas now.
Other Housing Resources. In addition to the specific projects described
above, 33 of the total 105 Florida counties and municipalities provide
some form of housing assistance. These forms of assistance can
range from state funded programs like SHIP funds which can be used
for emergency repairs, new construction, home rehabilitation, down
payment and closing cost assistance, impact fees, construction and
gap financing, mortgage buy downs, acquisition of property for
affordable housing, matching for federal housing grants/programs and
home ownership counseling.
Federally funded resources include the Community Development Block
Grant, which can support non-profit agencies providing services to low
income people, for infrastructure development in low income
communities and, commonly, for housing rehabilitation. Section-8
Rental Assistance is provided by the United States Department of
Housing and Urban Development (HUD) to local housing authorities. It
may come in two forms: 1) vouchers, which an individual may use to
pay for housing in the community and, 2) Section-8 project-based
assistance, which is attached to a unit to make it affordable. The
voucher program typically has a long waiting list, though the local
authority may designate a special priority for persons with disabilities.
Project-based assistance allows a housing authority to attach rental
assistance to affordable housing units that are specially designed for
people with disabilities. Such units are typically found in public housing
complexes run by the local housing authority.
47
Other housing-related programs that are available to individuals with
disabilities are administered through the Florida Department of
Community Affairs, with funds distributed via local authorities. These
include the Low Income Emergency Home Repair Program, the Low
Income Home Energy Assistance Program and the Weatherization
Assistance Program.
Eligibility for the housing programs listed above is based on comparing
the individual’s income with the median income for the area (AMI),
according to family size. (HUD publishes the AMI for each area
periodically.) Most individuals with developmental disabilities,
particularly those with SSI incomes, can qualify financially for HUD
programs.
Private Resources. Another potential source of housing for individuals
with developmental disabilities can be homes made available by their
parents. This can be done either through the purchase by the parents
of a home or condo for the offspring, or the transfer of the family home
to the adult child, either prior to or upon the death of the parent(s).
[Also see following section on older adults for more discussion of this
option.] Other community alternatives pursued by small groups of
parents across the state include the development of private group
homes and mixed residential developments. The latter include built-in
support resources for the individuals with disabilities who live there.
C. EMPLOYMENT AND DAY ACTIVITY SERVICES
The previous section of this report deals with school transitions and the
various public entities involved with providing transition services. In this
portion of the report we look at the three public agencies— DDP, DOE
and DVR—that provide employment and day activity services to adults
with developmental disabilities.
DDP Services. As in many states around the country, the current
employment services in developmental disability programs in Florida
are partly a holdover from the ubiquitous “sheltered workshops” of the
1970s and 80s. Many service providers converted their workshops to
adult day training programs for the Medicaid waiver during the 1990s.
[Whether this philosophical conversion resulted in more than a name
change is discussed further in Part Two of this report.]
Adult Day Training (ADT) Services. Day training programs are broad
training services intended to help individuals take part in daily, valued
routines of the community. They include work-like settings that do not
meet the definition of supported employment. The services provided
must stress training in the activities of daily living, self-advocacy,
adaptive and social skills, and be age and culturally appropriate. The
goal is to attain participation in less restrictive settings. These facilitybased programs should offer a variety of activities that are of interest to
the individuals participating, and are related to personal goals and
48
outcomes desired by the individuals involved. Mobile crews, enclaves
and entrepreneurial models that do meet the standards for supported
employment can be included as ADT off-site services.
Assistive Technology. AT is a valuable tool that can enable people with
disabilities to remain in control of their lives, as well as enhance their
presence and visibility in the community. Assistive devices run the
gamut from low tech to high tech, computerized devices, which affect
mobility, communication and independent functioning. Durable Medical
Equipment (DME) is a Medicaid waiver service that provides assistive
devices to individuals when such assistance is deemed “medically
necessary” for that person’s health and well being, and that assistance
is not provided by another source (e.g., DVR). Other sources of AT
information include FAAST and the Advocacy Center for Person with
Disabilities.
Supported Employment. The other employment related service under
the Medicaid waiver is supported employment, which may be either an
individual or group format. With the individual approach, one person is
helped to obtain competitive employment with the assistance of a job
coach, employment specialist, or job consultant. Both intensive training
(Phase I) and systematic follow-along supports (Phase Two) are
provided. This model can be applied to employment in the general
work force or to a business to be operated by the individual.
Within the group format, three models are used. These include:
 Enclave – up to eight individuals work either as a group or dispersed
individually through an integrated work setting, under supervision of
the provider.
 Mobile Crew – a crew of individuals performing activities such as
lawn
maintenance or janitorial activities in business or other community
settings, with supervision by the provider.
 Entrepreneurial – up to eight individuals work in a small business
created specifically by or for them.
SERVICES PROVIDED/EMPLOYMENT TRENDS
In 2003, the DDP waiver currently serves 10,727 individuals in Adult
Day Training (ADT) and 2472 individuals with Supported Employment
(SE) services. Though ADT is meant to be a transitional service, it is
seldom used that way. According to DDP statistics, 23 people
appeared to transition from ADT programs into SE between 2001-02
and 2002-03. Another 59 individuals who received only ADT services
in 2001-02 are receiving both ADT and SE services this year. (It should
be noted that it is common for individuals beginning employment to
work part-time and to continue to attend an ADT program part-time.)
The following chart displays the trends in Florida employment services
for individuals who received Medicaid waiver services in the years
49
2000, 2001 and 2002. According to AHCA, the number of individuals
receiving Adult Day Training services in 2000 was 10,330; Supported
Employment services, 2850. For FY 2001-02, the totals for those two
services were 10,919 and 2764, respectively. The cost of ADT services
in 2001-02 was approximately $63 million. This represents 13% of the
waiver budget. The cost for SE services was $7
million.
FL Employment Services Trends, Medicaid
Waiver - 2000, 2001, 2002
12,000
10,000
8,000
6,000
4,000
2,000
0
Ad. Day Trg.
Supp. Emp.
2000
2001
2002
DOE Services. Many school districts across the state offer adults with
disabilities another option for day activities—adult education classes.
Adult and community education classes are offered at community
education sites and at off-site locations such as ADTs and some group
homes. Individuals who are 16 years of age or older may choose to
participate, and can be eligible for special services and assistance in
those classes. Broward County Schools, for instance, also has a grantfunded non-workforce educational program to enable students with
developmental disabilities to acquire and develop skills of selfsufficiency and increase community independence. Opportunities are
provided for community exploration, volunteer, and work skills training.
Individuals with disabilities who do not have a regular diploma or a
GED may also choose to attend vocational/technical classes at
vocational-technical (Voc/Tech) centers or community colleges across
the state. Individuals who have a special diploma or certificate of
completion may be required to take a basic skills test to prove they
have the academic skills to benefit from the voc/tech training.
DVR SERVICES
This agency provides services for Floridians of working age with
physical or mental impairments. These services allow them to prepare
for, obtain, keep or regain employment. (For a detailed description of
the DVR eligibility criteria and steps in the service process, see prior
section of this report, Services for Children Transitioning from School.)
Individuals who use DVR services have the right to choose their
counselors, the services they receive, their service providers, and the
jobs they attain.
50
Training and Retraining. DVR may provide necessary vocational and
other training services for individuals to determine eligibility or
participation in trial work. Services may also include personal or
vocational adjustment to help the individual develop certain identified
personal or social behavior patterns or work habits, which are
necessary for successful employment.
Medical and Psychological Evaluation and Treatment. Prior to
employment, an individual may need medical, psychological and/or
dental consultation and treatment to correct or modify a stable or
slowly progressing physical or mental condition that may be a
substantial impediment to employment.
Angela is a petite, 30-yr-old
woman with retardation who lives
with her family. She has always
been fond of animals, especially
her beagle puppy. She would like
to get a job caring for small
animals and thinks a job coach
can help.
Supported Employment. The purpose of supported employment
service is to assist people with the most severe disabilities achieve
competitive employment. For this reason, it is the service most
appropriate for many people with developmental disabilities. Job
coaching is the core service provided through the supported
employment program. DVR provides the funding for contracted job
coaches who give the support needed to achieve and maintain
employment. Supported employment in DVR has three distinct
features. It:
1. Allows competitive work in integrated work settings;
2. Targets individuals for whom employment has not traditionally
occurred, or has been interrupted or intermittent because of their
disabilities; and,
Provides ongoing support services as needed, for the individual to
successfully maintain employment.
Typically, DVR provides supported employment services to an
individual with a developmental disability (Phase One), combined with
services from the Medicaid waiver (Phase Two, follow-along).
However, if the individual is not eligible for services from DVR, all
services may be provided under the Medicaid waiver.
Rehabilitation Technology. This service is the systematic application of
technologies, engineering techniques or scientific principles to meet
the needs of and address the barriers confronted by the individual with
disabilities in areas that need education, rehabilitation, employment,
transportation, independent living and recreation.
Assistive Technology (AT). This comprehensive program of assistive
technology services includes assessment, evaluation, and purchase of
assistive technology devices. AT services and devices are meant to
increase opportunities for employment. Importantly, these devices can
also enable participation in educational activities, home life and
community activities.
Contracted Rehabilitation Technology Service Provider. This service is
provided via the Contracted Rehabilitation Technology Service
51
Provider (CRTSP) at the University of South Florida. A CRTSP
evaluates a referred individual and submits a detailed letter outlining
recommended products and services to the referring counselor. Such
services may include building modifications, worksite assistive
technology, wheelchairs and scooters, computer equipment, vehicle
modifications and driving assessments, and post-employment
services.
In addition, the following services are commonly provided by DVR:
counseling and guidance, personal assistance services, tools and
equipment, telecommuting, independent living services, placement and
follow-up services, interpreter services, and transportation.
Independent Living. DVR is also the administering agency for the
statewide network of 14 Centers for Independent Living (CILs) that
provide skills training, peer counseling, advocacy and, information and
referral. Some CILs also provide interpreter services for the deaf,
attendant care training and, Americans with Disabilities Act (ADA)
architectural surveys. These centers are community based and
consumer controlled. Though open to people having a broad spectrum
of disabilities, the traditional focus of Florida’s CILs has been on
assisting people with sensory impairments or physical disabilities.
SERVICES PROVIDED.
According to their 2001-02 report, DVR successfully placed 8759
individuals in jobs during that year. Of that number, 37% are
considered severely disabled and 42% most severely disabled. 7.3%
or 626 have developmental disabilities; 24% or 2042 have orthopedic
disabilities (Total 2668). [As mentioned in the previous section, DVR
classifies only individuals with mental retardation and autism as having
developmental disabilities; those with the conditions of cerebral palsy
and spina bifida are classified as have orthopedic impairments.] Other
categories of individuals served by DVR are those who are blind or
hearing impaired, persons with a chronic medical condition, a learning
disability, a mental illness or those who abuse substances.
Less then 33% of people with
disabilities work at all; only
18% work full time.
Obstacles to Employment for People with Disabilities. The U.S.
Census bureau reports that while less than one-third of people with
disabilities work at all, only 18% work full time. Perhaps shedding
some light on the reasons behind those appalling numbers, a March
2003 report by Rutgers University presented the following results from
a recently completed employer survey.
 Only 26% of employers state that their company employs at
least one worker with a physical or a mental disability.
 Nearly 17% of employers believe that the lack of skills and
experience on the part of the job seeker is the greatest
barrier.
 15% cite employer reluctance to hire workers with disabilities.
52
 Only 40% of employers surveyed provide training of any kind
to their employees regarding working with or providing
accommodations to people with disabilities.
 Employers admit internal barriers such as: discomfort with
disabled workers; belief that the job cannot be performed by
a person with a disability; and, fear of accommodation costs.
 60% of employers say that the federal government should
offer tax incentives to employers for hiring people with
disabilities and to pay for workplace accommodations.
 Employers in the hospitality industry are the most likely to
support tax incentives.
 Of all the workers with disability who are hired, the hospitality
industry hires the largest number of workers; the
manufacturing industry the least.
 However, nearly 74% of employers also believe that
employers, government and workers are equally responsible
for equality in the workplace.
 Only 11% of employers have developed recruiting methods
and strategies that specifically target people with disabilities.
 Only 12% have changed the format of job applications to
make them more accessible, or changed the tests or
evaluations used in hiring or promotion.
 Only 7% have changed the company’s web site to make it
more accessible to people with disabilities.
Other Day Activities under the Medicaid Waiver. For individuals
with disabilities who do not participate in competitive or supported
employment, few options exist for alternative day activities. However,
some other options may be provided with the use of Companion
Services or Non-Residential Support Services. A non-waiver option
that an individual may choose to pursue is participation as a volunteer
in a community service setting.
Companion Services. An individual who lives in his/her own home,
foster home or family home may receive companion services – either
in the home or while engaged in a community activity. Companion
service is defined as non-medical care, supervision and socialization
provided to an adult on a one-to-one basis. Acceptable companion
activities might include going to the library, getting a library card,
checking out books or videos, shopping for groceries, going to an
animal shelter to learn about animals and, volunteering or assisting at
the animal shelter. These activities are not merely diversions, but
relate to a goal or outcome desired by the individual. 3034 individuals
received these services in 2000-01.
Non-Residential Support Services. This service consists of
individualized training activities for an individual in an integrated, nonresidential community setting. These services are concerned with: 1)
developing communication and social skills to assist the person to
53
function with maximum independence in the community; 2) developing
the skills needed to increase independence in the community; and
3) developing the skills needed to maintain a living environment, use
community resource and conduct activities of daily living. Older
individuals may be interested in using this service to attend senior
citizen programs or licensed adult day care centers. 3499 individuals
received these services in 2000-01.
An Overlooked Employment Resource: National and Community
Service Programs. Individuals who choose to participate as members
in AmeriCorps and Senior Corps programs (which exist across the
state) have the opportunity for further community integration, the
chance to contribute to their local communities, a way of developing
work skills and exploring job possibilities, and exposure to potential
future job contacts. In addition, full time members receive a living
stipend and an educational award, which can be used for training or
education at any accredited school in Florida. This little known
opportunity can be an excellent means of exploring a field of
employment. These programs also emphasize the inclusion of persons
with disabilities in their programs.
Since access to the community, and to the many resources available
to the general public, is of vital importance to individuals who have
disabilities, we now turn our attention to the core area of transportation.
D. TRANSPORTATION SERVICES
Accessibility and availability of transportation remains an obstacle for
many people with disabilities, in getting to work and into the
community. The National Organization on Disability (NOD), reports that
the transportation gap for people with disabilities has grown over the
past decade. It continues to be a factor militating against community
inclusion.
In addition to rides provided by family and friends, transportation
services for people with developmental disabilities in Florida usually
consist of paratransit trips provided via city and county governments,
private transportation providers, and disability service providers.
Different funding sources cover the costs of the trips, depending upon
the purpose of the specific trip. For example, Medicaid covers medical
trips; Medicaid waiver covers supported employment trips; DVR may
cover trips for training/education, etc. Some trips may also require
fees to be paid by the individual (e.g., for community outings).
Transportation Disadvantaged System. Florida has a coordinated
system of transportation, mandated by F.S. Chapter 427, for residents
who are considered transportation disadvantaged (TD). Each county or
area of the state has a county transportation coordinator (CTC) who is
responsible for arranging or providing the trips in that county. This TD
system provides publicly funded services to eligible people who are
54
elderly (35%), children under age 16 (20%), have disabilities (22%) or
have low incomes (18%). A disability is considered to be any physical
or mental impairment that substantially limits at least one major life
activity. TD providers do not identify the type of disability of the people
they serve.
As a result, it is not possible to determine how many of the total
number of people with disabilities who are served have a
developmental disability. Local coordinating boards hold regular public
meetings as part of their oversight role to determine how effectively
local transportation needs are being met. Written complaints about
transportation are documented by the TD Office and forwarded to local
CTCs for investigation and response.
49 Community Transportation Coordinators, who serve all of Florida’s
67 counties, coordinate the system and report to the statewide
Transportation Disadvantaged Commission in Tallahassee. The
mission of the Commission is to ensure the availability of efficient,
cost-effective and quality transportation services for individuals who
are transportation disadvantaged. Chapter 427 also established the TD
Trust Fund, as one source of funding for the system.
The $271million in total 2001 funding for the TD system emanated
from many different federal, state and local entities. These include:
Commission for Transportation Disadvantaged (9%); DCF, includes
DDP, (11%); AHCA (30%); Department of Transportation (5%);
Department of Elder Affairs (3%); DOH and DOE (4%); and, local
governments (38%). As can be noted, local governments and
Medicaid (AHCA) support 2/3 of the TD program.
Services Provided. TD statistics are kept according to the calendar
year. During 2001, a statewide total of 51.5 million one-way trips were
provided to 654,432 people. 5.7 million one-way trips were provided to
155,000 people with disabilities. 29% of the trips were for medical
purposes, 16% for employment and 23% for education or training.
There were also more than 1.5 million trip requests from all callers that
could not be met in 2001.
Current Transportation Issues. Transportation services vary greatly
among Florida’s 67 counties, of which nearly ½ are rural and lacking in
mass transit. In those counties where paratransit services do exist
quality and consistency of service are major issues. At local TD
Committee meetings, riders with disabilities complain of late pick-ups,
unconscionably long delays for return trips, rude and uncaring drivers
and unresponsive call center staffers, and virtually non-existent
services during evening and weekend hours. In some areas, calling
systems are difficult to use by people with disabilities and long waiting
times on the telephone are not uncommon. New drivers, unfamiliar
with area or with local directions are common, due to frequent turnover
in staff.
55
Despite the need of a consumer to get to a medical appointment, an
employment related activity or a long-anticipated community event,
services do not extend to all areas of all counties at all times. Nor,
generally, can trips be scheduled to cross county lines for any reason.
These restrictions on community participation and everyday life
severely limit persons with no other means of transportation.
DDP/AHCA Transportation. As noted above, paratransit trips
provided through funding from all federal, state or local sources, i.e.,
the DDP and AHCA, are included in the statewide TD statistics.
Eligibility for those transportation services is based upon the
individual’s disability and participation in the DDP Medicaid waiver
program or receipt of services under the Medicaid State Plan.
Individuals with disabilities may receive additional transportation
services not covered under public funding by meeting the criteria for
disability and income used by their local CTC, and paying a sliding
scale trip fee based on income. Individuals must have no other means
of transportation and be unable to use public transit.
In many areas of the state, the DDP provides funding for transportation
services for individuals with disabilities via contractual arrangements
with disability service agencies to transport the people to and from their
service facilities. These providers are considered coordinated
contractors by the CTCs. However, should an individual require a type
of trip that is outside of the contractual arrangement of that particular
provider, the CTC becomes the transportation provider, using one of its
own or a subcontracted operator for the trip.
WAIVER TRANSPORTATION SERVICES PROVIDED
For 2001-02, 10,267 individuals received transportation services under
the DDP Medicaid waiver.
Mass Transit. Most urban areas have mass transit systems, which
vary in their accessibility and “user friendliness” for persons with
disabilities, though some provide rider assistance.
Barriers Identified. The barriers identified in the Jacksonville system
are typical of other metro areas and are used here as examples. In a
1997 report, the Jacksonville Community Council found the top priority
transportation needs for people with disabilities are getting to medical
appointments and employment related services. They also identified
several barriers to using local public transportation. Those that are
specific to individuals with developmental disabilities include: 1) Some
people who have mobility impairments are unable to get to a bus stop
due to its location, lack of sidewalks, lack of curb cuts or because they
cannot safely cross busy streets to reach the bus stop. 2) Individuals
who have access to the bus system may learn to use it, but only
56
after intensive training. Even then, some are easily confused by a bus
break down or a missed connection. Special assistance from bus
drivers is sometimes needed. Additionally, many guardians of
individuals are reluctant to allow them to walk long distances to reach
the bus stops. 3) Differing eligibility requirements cause confusion for
individuals whose transportation can be paid by multiple funders. As a
result, some individuals find the TD system difficult to use and may not
use it at all.
[Note: Recommendations for specific transportation barriers identified
by focus group participants will be detailed further in Part Two of this
report.]
Mobility Training and Bus Passes. The following Florida counties offer
special assistance to riders who have disabilities:
 Alachua County – The Center for Independent Living works
with the regional transportation system and offers a mobilitytraining course.
 Broward County – The Transit system has a full-time travel
trainer available.
 Duval County – Jacksonville Transportation Authority opened a
new ADA Mobility and Training Center on 4/01/03.
 Escambia County – Offers mobility-training to anyone needing
assistance using fixed route services.
 Hillsborough County – Has a mobility-training program
available upon advance request.
 Leon County – Has a bus accessibility-training program
conducted by the Florida Institute of Rehabilitation Education
and the Leon County School Board.
 Miami-Dade County – Miami-Dade Transit has a travel mobilitytraining program that orients riders on how to use the fixed
route service in the county.
 Orange County – Has two mobility-training programs; one fixed
route, one paratransit.
o The fixed route program (LYNX) has an in-house trainthe-trainer program aimed at training
counselors/instructors how to train others with “How to
Ride LYNX.” This a 4-6 hour program focused on
training how to read schedules, time points and maps,
as well as safety issues and fares. It teaches how to
obtain special IDs and provides a hands-on bus ride for
trainees.
o The Access LYNX program is a travel training program
set up as part of this paratransit system’s functional
assessment of potential riders. It is also available on
request for existing paratransit riders requesting more
assistance.
o Pasco County – Has staff available to do mobilitytraining.
57
o
Pinellas County – Has a ride buddy program to teach
new riders to use the system.
COMMUNITY AND FAMILY SUPPORTS
Two recent disability surveys—a 2000 NOD/Harris Poll on Community
Participation and the 2001 federal National Health Interview Survey—
confirm the fact that there are serious gaps in participation in
community life between people with and without disabilities. Overall
community participation is, naturally, related to time spent away from
home each day. Surveys reveal that people with severe disabilities
spend an average of two hours less per day out of their homes than
people without disabilities. That gap is to 4.5 hours per day for people
with disabilities who are unemployed.
Fully 40% of people with severe disabilities are not at all involved in
their communities, almost twice the percentage for people without
disabilities, and one and one-half times the percentage for people with
less severe disabilities. These lower participation rates have varying
causes of emotional hurdles such as fear or perceived negative
attitudes, more practical hurdles such as lack of transportation, or most
importantly, the lack of encouragement from community organizations.
In general, only 33% of people with disabilities say they are very
satisfied with their lives.
There are a number of ways that people with disabilities can stay
connected with their communities and with the larger world. Use of
these methods was queried in these national surveys.
The Internet. The Internet has had a dramatic impact on the quality of
the lives of people with less severe disabilities, allowing them to extend
their reach to others, to become effective advocates and to be better
informed about the world. However, this electronic marvel has not yet
become accessible or user-friendly for people with severe disabilities.
Regarding satisfaction with community involvement, almost half
express that they are dissatisfied with their community experiences. Of
that total, 23% are not at all satisfied. On a related note, people with
disabilities also express a greater sense of detachment from their
communities. People with disabilities are one and one-half times more
likely to say they feel left out of things in their communities. Those with
severe disabilities are more likely to confront obstacles such as
transportation or communication issues, making the community less
accessible to them. Only 29% of people with severe disabilities say
they are regularly invited to give their opinions on important community
issues.
Specific Community Activities. 81% of people with disabilities say they
never go to community service organizations, either to attend activities
58
or to avail themselves of the organizations’ services. Also, more than
52% of people with severe disabilities never attend religious services.
Almost four out of ten people with severe disabilities never attend
cultural events or organizations such as the library, theater, ballet,
opera or museums. A similar gap exists for attendance at outdoor
community places such as the beach, or park. Only 44% of people with
disabilities go to these places at least once a month. This may not be
surprising for people with physical disabilities, since it involves some
sort of physical activity, which may be prohibitive. In addition, 56% of
people with severe disabilities never volunteer in their communities.
However, the largest gap in community participation for people with
and without disabilities is found in going to entertainment. Only 32% of
adults with disabilities report going out to shows, movies, sports events
or club meetings. The smallest gap is for socializing with relatives and
friends, either in person or by phone. Many people with disabilities are
able to socialize on a regular basis, like their counterparts without
disabilities.
The U.S. Department of Health and Human Services (HHS), Office of
Disease Prevention and Health Promotion, is concerned about the
level of community participation and life satisfaction that is experienced
by people with disabilities. They understand that barriers to social
participation and access to the community impact health, and have
included goals to reduce these barriers in Healthy People 2010. Within
the general goal to, Promote the health of people with disabilities,
prevent secondary conditions and eliminate disparities between people
with and without disabilities in the U.S. population, HHS include
suggestions for a number of activities to increase access to community
health and wellness programs and to bring assistive technology and
devices into the reach of all who need them.
Public and Privately Funded Resources. Throughout Florida, there are
a number of programs and activities sponsored by city and county
governments in which adults with disabilities regularly participate.
These athletic events, leagues, classes and social activities may be
either targeted to the disability population or integrated aspects of
general community events. Such activities are usually quite popular
and well attended (see details in Part Two). Other disability-specific
organizations that are partly supported by public funds, such as
Special Olympics and Best Buddies, offer year round activities for
individuals and groups of persons with disabilities. Certain civic and
community organizations are sponsors of annual disability events that
are popular with individuals and families alike.
Religious organizations welcome members with disabilities to
participate in their programs and worship services, often by playing
integral roles in these ceremonies. Such organizations also
sponsor classes and social outings, summer camps and other activities
for children and young adults with disabilities and their families. Certain
specific recreational activities such as sailing, swimming with dolphins
59
or horseback riding exist solely for people with disabilities and often
have months’ long waiting lists.
Family Supports. In addition to those resources previously mentioned
in this report, there are several publicly funded entities that exist to
provide supports to families in their attempts to successfully navigate
the disabilities service system. These include the 15 Family Care
Councils that exist in each DCF district/area that inform and conduct
educational outreach to families. These volunteer groups receive
funding from the DDP to support their activities. The DDP also
provides an electronic E-Bulletin to 700 individuals and families, as a
means of keeping them abreast of system activities and to provide
answers to questions from families. The DDP web site is also a source
of information for those concerned about services for people
developmental disabilities, and includes a link to the AHCA site for
information about Medicaid and the waiver. The ASCEND Project of
the Family Network on Disabilities (FND) is also a source of
information for families, with its newsletter, web site and toll-free
information line. This project, which is underwritten by the DDP, also
provides periodic workshops around the state to support families and
self-advocates.
POTENTIAL OBSTACLES TO SERVICES
#1)
#2)
#3)
#4)
#5)
#6)
#7)
Two services, ADT and Res Hab, comprise more than 50%
of the waiver budget
The funding for ADT is nine times that for SE, to serve four
times as many people
Funding for more independent services, SE and SL, is not
increasing
Nearly 11,000 people are currently on the waiting list for the
Medicaid waiver
AT is very expensive and resources to subsidize or obtain
needed devices are few
There is a shortage of affordable, accessible housing in Florida
Support coordinators and SL coaches must become familiar
with housing resources
In this section we reviewed the services available in three major adult
life areas – living arrangements, employment and day activities, and
transportation, as well as community and family supports. The
concluding section in Part One presents an overview of the unique
service needs of older adults with developmental disabilities and their
families.
60
IV. SERVICES FOR OL DER ADULTS
Some Florida Aging Demographics. Twenty-three percent of
Florida’s population (more than 3.6 million people) is over the age of
60. People who are 75 and older make up 9.2% of the population and
will be close to 10% by the year 2010. Florida has more elders than 17
other states and the District of Columbia combined. Persons aged
100+ are the fastest growing age group in the state. This population of
elders will all age differently. Some have lifelong disabilities or chronic
conditions that occurred before age 60. Others are beset by agerelated impairments. Still others live their whole lives without the need
for long-term medical or social services.
OLDER ADULTS WITH DEVELOPMENTAL DISABILITIES
The previous sections of this report discussed those services that are
available to individuals from childhood, to school years and through
adulthood. We now turn our attention to the unique needs of older
adults. Services needed by, and available to, older adults are very
similar to those discussed in the prior section, Services for Adults.
However, the emphasis differs, in that at least three of the core life
areas served primarily by the Medicaid waiver—health, housing and
day activities—often change with the onset of old age. The factors
affecting this shift in emphasis may be either intrinsic (within the
individual) or extrinsic (circumstances surrounding the individual).
Intrinsic Factors. One simple caveat that bears remembering here:
Some older people with developmental disabilities, primarily those with
Down Syndrome and individuals with severe, multiple disabilities, age
earlier than their chronological years. Research has shown that men
with Down Syndrome can age as much as twenty years earlier than
their non-Down’s counterparts; women may age ten years earlier.
People with Down Syndrome also develop Alzheimer’s Disease at an
earlier age and at a rate as much as 40% higher than others.
Research is still ongoing to determine all of the effects of aging upon
individuals with cerebral palsy. To date it is clear that many secondary
disabilities can compromise the health, communication and mobility of
persons with CP. For these reasons, it is not uncommon to consider
that people with severe developmental disabilities become “older
adults” in their 50s. Once that acknowledgement is made, appropriate
adjustments in outcomes and services should also follow for
individuals of that age.
Extrinsic Factors. It is well known that the majority of individuals
receiving publicly funded services in Florida continue to live at home
with their families. Parents of people with disabilities frequently accept
the role of being a lifelong caregiver, providing myriad supports to the
individual over the course of a lifetime. Once individuals with
61
disabilities enter their fifties, their parents are often in their eighties.
When the vicissitudes of old age become a reality for these elderly
parents, their own resources are no longer adequate to continue in the
caregiver role. As a result, they turn to the service system for help in
planning the transition of future care to others.
Areas of Need. Among the changing life areas of older adults with
disabilities to be considered in this section are: health care, residential
needs, in-home supports, daily life activities, and transportation. The
primary public service agencies presented in this section are the DDP,
AHCA, TD and the Department of Elder Affairs (DOEA). Other locally
funded public resources will also be referenced, since many aspects of
the Aging Network that are available to the general older population
are also available to older people with developmental disabilities.
A. HEALTH CARE SERVICES
While the population of individuals with mild disabilities generally ages
at the same rate as non-disabled persons, it is individuals with more
severe disabilities that are more apt to be receiving services from the
DDP. The tendency of this latter group to show early signs of aging is
further compounded by the onset of normal aging changes and agerelated disabilities. Furthermore, the ability of an older individual to
provide informed consent for health care now becomes more of an
issue, as the frequency of health care encounters increases with age.
Healthy lifestyle choices also become more critical for older adults.
The obtaining of guardianship or guardian advocacy by parents to
protect the rights of their offspring with disabilities is commonplace
today, where admonitions to do so emanate even from the school
systems. However, 30-40 years ago, this was not always the case.
Parents often eschewed the option of legally removing all of their
children’s rights, and this was the only legal choice available when
many of today’s older adults came of age. Further, in years past when
adults with disabilities lived with their parents, family physicians widely
accepted parents’ substitute consent for health care and
treatment. It in only in recent years that greater accountability and
insistence upon informed consent by the patient or his/her legally
appointed guardian became standard operating procedure for health
care professionals.
Beyond that, the philosophy in institutional care that prevailed 40 years
ago caused many parents of then-young adults to mistrust the
disability system and avoid signing any legal documents. With that
historical background, it is easy to understand why a number of older
adults who are unable to independently exercise their own rights and
give informed consent are still lacking legal guardians. Older parents
must be encouraged to obtain either guardian advocacy or
guardianships for their older adult children, and simultaneously appoint
one or more successor guardians.
62
The Department of Health (DOH). The various aspects of the DOH
described in the previous section as being available to adults with
disabilities pertain here as well. However, the DOH programs more
likely to be used by older adults are based in primary health clinics,
which have geriatric specialties in some counties. However, as a
general rule, these clinics (and other DOH programs) do not keep
statistics on the types of disabilities presented by the people served.
The Developmental Disabilities Program (DDP) & AHCA.
All of the services described in the prior section for adults—particularly
the DDP Medicaid waiver—will also be relevant for older adults, with a
different emphasis in needs, due to aging. Basic health care may
continue to be provided under the Medicaid State Plan for primary and
specialty physicians, hospital in-patient and out-patient treatment,
prescription coverage, hearing aids and glasses. Waiver services may
take on a different emphasis for aging individuals, with perhaps a
greater frequency and level of intensity required for certain types of
care and supplies. Major health issues for adults living in the
community are proper nutrition and sufficient exercise. Obesity is
higher among this population than it is in general. Health monitoring,
and services dieticians, are essential from to help older adults live
healthier lives as they live longer lives.
(The role of the Aging Network in providing additional, health-related
services will be detailed below under day activities.)
B. RESIDENTIAL SERVICES
According to AAMR, there are an estimated 526,000 adults aged 60
with developmental disabilities, nationally. This number will double by
2030, to more than 1 million, when all of the baby boom generation
reaches their sixties. AAMR also cites a recent national survey that
reports 60,876 people with disabilities on waiting lists for residential
services in 37 states. As adults age, there is a growing need for
housing options outside of the family home.
AHCA & DDP Services. The most common, universal fear of elderly
parents is the uncertainty about the future care and well being of their
loved ones with disabilities. This is particularly true for older adults who
have spent their lives with their parents in the family homes. More
often than not, future care plans and residential arrangements are
tentative or non-existent. As their own lives shorten, some aging
parents may look to immediate group home placements as solutions to
their concerns. Usually they are not aware of the various options that
they and their adult children might have. One way for parents to assure
future care and living arrangements for their children is by using a
supplemental or Special Needs Trust. They should be apprised of the
need to seek the assistance of an attorney who is knowledgeable in
63
disability law to assure that this trust is properly established. Parents
without a large estate may be unaware that such a trust can be funded
with the proceeds of their life insurance, for example. A properly drawn
will direct such proceeds to the trust.
Given complete information and support, parents might well opt to
leave the family home as their child’s future residence, with the
appropriate safeguards in place to assure permanence of residence,
supported living and in-home services, and a roommate to share
expenses (if desired by the person), upkeep and maintenance. Funds
for supplemental activities/needs can be provided to the individual from
the trust without impinging upon his/her Medicaid waiver eligibility.
Information about alternative residential options should also be
considered.
The urgency for elderly parents to make written future–care plans
should be acknowledged, and their efforts guided by using existing
tools and formats for such purposes, such as those that are available
on the websites of The Florida Developmental Disabilities Council and
of The Mailman Center. Certainly, the role of a supported living coach
and the importance of in-home supports can not be overestimated
when these services can enable an older adult to remain in a familiar,
lifelong home.
Related Services. Another waiver service that may attain greater
emphasis with the increasing age of the individual is Environmental
Accessibility Adaptations. Ramps, grab bars, bathroom modifications,
etc, may become more important in allowing the older person to
maintain his/her independence in the community home.
Other Resources. While an older adult may certainly wish to make use
of the same community housing resources as a younger individual
(such as Section-8 vouchers, etc.), the existence of public housing that
is specifically available to older people should not be overlooked as an
option. In addition, the same private housing resources made available
by groups of parents should be explored as possible residential
choices for older adults.
C. DAY ACTIVITIES
The previous sections of this report discussed several employment
options available for children transitioning from school and for adults.
Though some may wish to continue working, even on a part-time
basis, most older adults will choose to retire from the world of work to
enjoy other day activities. This life area marks the greatest change in
service emphasis, just as the arrival of the retirement years makes a
similar life change in the population at large.
AHCA &DDP Services. As individuals with severe disabilities decline
64
in function as they age, the use of waiver services such as assistive
technologies and environmental accessibility modifications take on
even more prominence, in assuring continued community
independence and participation. From the aspect of specific day
activities, some of the ADTs discussed in the prior section include
social or community programs for older adults who seek a non-work
option for their day activities. Such “senior activities” commonly include
participation in local community senior resources, some of which
belong to the Aging Network.
Department of Elder Affairs (DOEA). DOEA is the agency that
administers human service programs to help elders keep their selfsufficiency and self-determination. It also has the primary responsibility
for developing policy recommendations for long-term care. The
majority of programs administered by DOEA are privatized, with
services being provided by not-for-profit agencies and local
governments, under contract through the state’s 11 Area Agencies on
Aging (AAA). Funding for these programs, which are often referred to
as the Aging Network, are a combination of federal, state and private
funds. Following are the descriptions of the major DOEA programs of
interest to persons with developmental disabilities.
Older Americans Act Services. The federally funded Older Americans
Act (OAA) provides a variety of services to all people ages 60 and
older, targeting individuals in the greatest economic and social need.
The services include adult day care, information and referral, medical
transportation, shopping assistance, counseling and congregate
dining. Many of these services emanate out of senior centers and
nutrition sites in local communities. Using supplemental local funds,
centers also provide a variety of social and leisure activities, from arts
and crafts to classes in exercise, dance, cooking, etc., and day trips
and excursions. The range of activities generally offers options for
individuals on several functional levels, from frail elders to healthy and
energetic older people, and all those in between. These activities can
also be of great assistance to older individuals in maintaining healthy
lifestyles.
OAA Eligibility Criteria. Because they are open to anyone who has
attained the age of 60, Senior Centers and Adult Day Care Centers
can often be appropriate choices for older individuals with
developmental disabilities. Furthermore, OAA guidelines also allow
the dependent adult child below the age of 60 to participate in the
congregate dining program when both the over-60 parent and adult
child attend the center together. Another way for a person below 60 to
participate is by providing voluntary assistance at the center.
OAA services also include in-home services like homemaker, chore,
and personal care as well as home delivered meals. However, there is
often a long waiting list for in-home services, due to the high demand
from the oldest elders.
65
DOEA Waiver Programs. While any individual can only participate in
one waiver at a time, DOEA also operates several Medicaid waiver
programs aimed specifically at keeping frail, homebound individuals
out of institutions. These waivers were mentioned earlier in this report
and include: the Aged/Disabled Adult Waiver for those aged 65 and
older, or adults with other disabilities; the Channeling Waiver in MiamiDade and Broward Counties for those aged 65 who meet the nursing
facility level of care; the Nursing Home Diversion Waiver which is a
pilot program for those 65 and older who are eligible for Medicaid and
Medicare and live in certain areas of the state; and, the Assisted Living
for the Frail Elderly Waiver for persons age 60 and older who are at
risk of nursing home placement and meet additional specific functional
criteria. This waiver provides extra support and services to individuals
residing in certain assisted living facilities.
Waiver Eligibility Criteria. Waiver services are available to individuals
who meet the financial requirements for Medicaid, as well as the age
and functional levels specific to each described waiver program. [Note:
DOEA waivers use a case management model to coordinate and plan
services for recipients, versus the DDP model of support coordination.
The role of a support coordinator has expanded responsibilities and
greater accountability to recipients, particularly for advocacy.]
Other DOEA Programs. The other major programs administered by
DOEA include: 1) Community Care for the Elderly, which provides inhome services for those aged 60 and above who are functionally
impaired. Primary consideration is given to persons referred from Adult
Protective Services. 2) Home Care for the Elderly, which provides
services to very low income persons over the age of 60 who are at risk
of nursing home placement and who have a willing adult caregiver; 3)
Emergency Home Energy Assistance for the Elderly, for households
with at least one member over the age of 60, that also have a heating
or cooling emergency and incomes no more than 125% of poverty
guidelines.
DOEA also sponsors other programs for specific elders, such as the
Alzheimer’s Disease Initiative, which offers diagnostic services, respite
care and targeted day care services for individuals with this condition,
and training for their family caregivers. DOEA also participated with the
DDP in the Robert Wood Johnson Consumer Directed Care Project.
Other Community Aging Resources. Senior adult resources are likely
to be found in any Florida community, both large and small. These
ubiquitous programs may be identified as senior centers, adult day
care centers or nutrition sites. Some of these are sponsored by DOEA
funds, as noted above. Others, held in community centers or private
facilities, may be supported by city or county governments or by private
funds or sponsored by civic, charitable or religious organizations. Any
66
with disabilities, to and all of these centers are resources that are
available to older adults further their personal goals of increased
participation in social and leisure activities of the community.
DOEA SERVICES PROVIDED
During 2001, there were 114,000 elders who received services at
senior centers and other senior focal points in their communities. In the
same year, an additional 133,000 frail seniors received in-home
services of some type. Though DOEA does not track types of
disabilities, 39,238 frail seniors are identified as having a disability.
C. TRANSPORTATION SERVICES
As with many of the other needs described in this section, as adults
age their need for assistance in getting from one place to another in
the community increases. Thus, the provision of waiver transportation
service likewise increases in prominence in their hierarchy of needs.
As with all age groups, information about the transportation provided to
older adults is captured by the TD system. However, it is not tracked
by disability type.
SERVICES PROVIDED
TD statistics show that more than 18 million riders on publicly funded
transportation during 2001 were elders. Of that total, 3.8 million are
disabled and another 2 million are disabled and low income. Not
unexpectedly, rides to older adults comprised 35% of the total trips.
POTENTIAL OBSTACLES TO SERVICES
#1)
#2)
#3)
#4)
#5)
#6)
There are few flexible options for day activities for older adults
under the waiver
Elderly parents are often no longer able to provide care for their
adult offspring
Older parents should be informed about how to make formal
plans for future care
Obesity and insufficient exercise are health problems of older
adults with disabilities
There is a lack of residential options appropriate for older adults
with disabilities.
Geriatricians are not trained to provide health care to older
adults with developmental disabilities.
……………………………
This concludes Part One of this report. Part Two presents the study’s
conclusions and recommendations, including input received statewide
from individuals with developmental disabilities, their family members,
and disability professionals.
67
PA R T T W O
C ONCLUSIONS AND R ECO MMENDATIONS
I. INTRODUCTION
A. Summary of Part One. The first part of this report presented a
description and analysis of the publicly funded services available to
individuals with developmental disabilities in Florida. This information
was given chronologically, with four different sections focusing on: 1)
Services Available to Children; 2) Services for Children Transitioning
from School; 3) Services for Adults; and, 4) Services for Older
Adults. Each section discussed the areas of greatest need during
that life period, presented the primary service agencies that meet
those service needs, and, detailed the types and amounts of services
delivered. Program eligibility criteria and methods of assuring quality
were also described. Some obvious service gaps or obstacles were
listed, and further details about these issues are presented in this
part of the report.
Quantity of Services. The following chart displays the services that
accounted for the majority of expenditures in the DDP waiver for
2001-02.
Five Services Account for Over 3/4 of Waiver
Expenditures 2001-02
Res Hab
Other
27%
Res Hab
40%
Per. Care
8%
Per. Care
Trans.
Supp Coor
8%
Trans.
4%
ADT
Supp Coor
ADT
13%
Other
Of those services in the “Other” category, SL is 4%; SE is 1% and InHome Supports account for 4%. Companion and Respite are 2%
each, while Non-Residential Support Services is 3%. The remaining
13% of expenditures are comprised of all other waiver services,
which generally are less than 1% each.
B. Purpose and Description of Focus Groups. In addition to the
gathering of quantitative service data, The Council directed that
this report should also contain the qualitative findings of three
68
focus groups, held in different geographic areas of the state.
Participants in these groups were individuals with disabilities, family
members and service providers.
Focus groups are a particularly useful method of gathering
information, since they:
 Can elicit the shared meaning of everyday experiences
from participants
 Capitalize upon the synergy created among the members of
the group
 Produce information that is difficult to obtain in individual
interviews
 Emphasize participants’ interactions and other points of
view
 Provide opportunities for participants to validate information
from others
 Clarify arguments and reveal diversity in perspectives, and
 Enable the collection of large amounts of information in a
relatively short time.
The three focus groups conducted for this report consisted of the
following membership and locations. 1) The first meeting was held on
October 16, 2002 in Winter Park (Central Florida), with 18 members
of the District Seven Family Care Council. Fifteen respondents are
parents or family members; three are people with disabilities. The
parents and family members present range in age from 58-81. The
individuals with disabilities they represented range in age from 30-56,
with half in their thirties.
2) The second meeting was held on November 21, 2002 in Miami (D11, South Florida) with 14 members of the local People First chapter,
a self-advocacy group for persons with disabilities. The group was
evenly split between males and females, who have retardation, CP
or autism. Their ages range from late twenties to 50. 3) The third
meeting was held on January 28, 2003 in Jacksonville (D-4, North
Florida) with 12 providers. Three of these 12 Waiver Support
Coordinators are also parents of people with disabilities (two adults
and one school-aged child). Providers have a range of service
experience from 1.5 -7.5 years, with an average span of five years.
The 44 total focus group respondents included persons who are
White, Black, Hispanic and East Indian. Various disabling conditions
were also represented in the three groups with retardation, CP,
autism, epilepsy and multiple disabilities listed.
Each focus group was limited in size, to allow maximum participation.
Respondents volunteered their personal knowledge or described
their own experiences in response to a series of formal questions.
(These questions were repeated for each group.) Successive
respondents voiced either agreement or different perspectives,
69
producing a variety of opinions and information. Sessions lasted an
average of 1.5 hours. Each session was tape-recorded and a
verbatim transcript produced. Themes experiential episodes and
illustrative quotations were derived from each transcript. The barriers
identified and the recommendations made in the three groups are
included here.
C. Purpose and Descriptions of Surveys Distributed. In addition to
the required three focus groups, The Center also prepared and
distributed anonymous surveys to individuals with disabilities, family
members and providers, asking essentially the same questions that
were used with the focus groups. These surveys were distributed at
random by project staff to participants at various state and regional
meetings, that were conducted during the last half of 2002 and the
first quarter of 2003. The purpose of these surveys was to expand
the information collected to include data from other areas in the
state, not represented in the focus groups. Fifty-four surveys were
returned. Of these, 39 were from family members or individuals; 15
were from providers.
Between surveys and focus groups, a total of 98 stakeholders
contributed data for this report. Opinions of individuals from DDP
districts 4, 7 and 11 were obtained in the focus groups. Additional
information was provided by the surveys received from individuals in
districts/region 2a, 3, 4, Sun Coast, 7, 8, 9, 10, 11a, 11b, 13, 14, 15,
and 23. This widespread distribution is helpful in determining
whether the service improvements observed, the service barriers
identified and the recommendations made are statewide in nature or
specific to certain areas of the state.
I I . G E N E R AL R E S P O N S E S TO F O C U S G R O U P S AN D S U RV E Y S
A. Observations about Recent Service Improvements. Focus
Group participants differentiated their responses to this question by
describing service aspects of availability, access and quality.
Unanimous opinions across the three focus groups declared that
service availability has greatly improved over the past two years, also
improving the lives of many consumers. Factors listed as contributing
to this increase include: energetic support coordinators; more people
being served on the waiver; the CDC pilot program; increased
commitment of the individuals involved with consumers; and, a
greater variety of services that promote community inclusion.
The vast majority of survey respondents also report improvement in
the amount of services available over the past two years, confirming
that this is a statewide phenomenon. Similarly, both group and
survey respondents agree that, with some exceptions, there is a
greater access to services now than in the past. Consumers and
70
families see the contributing factors as both an increase in the
number of service providers and improved information dissemination
efforts by the DDP and Family Care Councils. Providers cite the
existence of more service providers, especially those requested by
consumers, and an increase in the amount of funding for services.
However, despite these improvements, both groups mention that
there is still a shortage of certain service providers. Families name
dental care, speech therapy and some transportation services;
providers list a shortage of therapists, personal care and companion
agencies, as well as transportation and dental services. In rural
areas these shortages are exacerbated and include a scarcity of
residential options.
Furthermore, support coordinators, in both groups and surveys, also
describe systems problems and relate how the process of obtaining
services has been lengthened, especially with the addition of prior
service authorizations. They relate that while the lives of the
consumers they serve have improved, as a whole, their jobs as
support coordinators have become more difficult and frustrating.
B. The Quality of Services. The issue of service quality evoked
decidedly mixed responses from both group and survey participants.
The overwhelming sentiment seems to be that while the issue of
availability is being positively addressed, it is time now to focus on
the quality of services offered. Families note an inconsistency of
service quality, often from large multi-service agencies, where one
service is very good and another poor in quality. Group homes,
ICF/DDs and some Res Hab providers got high marks, particularly
for their efforts in community inclusion. ADT providers received the
most criticism from families, who cite well meaning but poorly trained
staff with constant turnover. As a result, many programs are no more
than “baby sitting services,” where consumers learn few if any skills,
in the estimation of several family members. Transportation services
statewide are also cited as being inconsistent and undependable,
whether offered by paratransit providers or disability agencies.
Providers voice concerns about the quality of transportation, with
inadequate and unreliable service for vulnerable consumers.
Consumers report poor service quality in transportation, especially
for work and for community activities. They also say they do not
receive consistently good quality services from personal care
workers and in some group homes. The latter venues suffer from
high staff turnover and an inability to keep “…good staff, who know
about me.” They also point to the poor quality of most Res Hab
services, where individuals receive inadequate or no training to live
more independently. Similarly, they report that ADT programs lack
any consistent programs that are directed toward the individual
consumers’ planned goals. Here too, high staff turnover rates,
inadequate training of staff and a lack of accountability by service
providers are cited as factors. In general, survey respondents made
71
the same sorts of comments about the quality of services, particularly
emphasizing extreme inconsistencies in transportation services.
C. Satisfaction with Non-DDP Services. Focus group participants
limited their discussion of services primarily to formal DDP services.
They did describe informal supports and community resources.
These will be detailed further below. Survey participants mentioned a
number of publicly funded services and their degree of satisfaction
with them. Among these are the DOE. In general, providers and
parents of school-aged children responded to services from the
school system as varying by school district. Comments included
“very good,” “satisfied,” and “varies,” to “some services are still an
area of contention” and “…not happy with the services.” For adults,
satisfaction is good for ABE classes and community instructional
programs.
Department of Education, Division of Vocational Rehabilitation
(DOE, DVR) is another public entity whose services varied, but
responses are more negative than positive. Some examples:
“services are limited,” “not satisfied, very poor,” “don’t deliver what
they say…unhappy with them,” and “Change the requirement to go
through DVR first. In some areas (D-3) they don’t serve our clients.”
Yet, in one county (D-10), DVR transitional services are rated more
favorably: “DVR has been very cooperative. They provided postsecondary educational services and my clients are very happy.” The
same provider then notes that, “I’m very satisfied with DVR services
for students with mild to moderate disabilities that do NOT require
long-term follow-up.” Conversely, another provider in that same
district cites problems in obtaining appropriate transition services.
Whether this is an issue with a particular school or with that district’s
DVR staff is not clear.
Department of Health, Children’s Medical Services (DOH/CMS)
also received varying ratings from some respondents. These include,
“very good” and “sometimes happy with therapies…other times not.”
DCF/ADM received two accolades from providers who are satisfied
with community mental health services, while a third provider notes
difficulty in making connections between the severely emotional
disturbed (SED) program and the DDP.
D. Satisfaction with Community Resources. Enthusiastically,
participants in both the family members’ and self-advocates’ focus
groups discussed their general satisfaction with the social,
recreational and community resources in their local areas. Whether
the individuals with disabilities live in family homes, in supported
living arrangements, in group homes or ICF/DDs, there has been a
tremendous increase in community participation. Most families and
advocates live in the Miami or Orlando areas, but some in Central
Florida live in smaller suburbs or rural areas. Naturally, the resources
named by members in the two groups vary across and within
72
counties, but they are representative of the types of resources and
community experiences that people with disabilities are now enjoying
in apparently increasing numbers.
A few of the community resources cited by group participants include
the general: art classes that are open to all in the community, a
statewide, church-sponsored clogging group, community bowling
leagues, performing designated roles in church/religious services,
volunteering with Habitat for Humanity, square dancing, church
choirs and holiday caroling, swimming teams, equestrian clubs,
boating trips, picnics, college football games and Friday night
dances.
Some of the disability-specific community activities in which
individuals participate include: Best Buddies, both individual and
group activities; agency-sponsored trips to theme parks; Special
Olympics; parties sponsored by churches and civic groups;
dedicated outings and activities sponsored by city recreation
departments. Other activities include disability advocacy roles, such
as participation on a local human services coalition and a
disadvantaged transportation committee.
One caveat accompanied about the lack of transportation the
enthusiasm: Without the availability of parents or the willingness of
agencies to transport individuals, there would be few opportunities
for community participation. During evenings and on weekends,
paratransit services are rarely available or, if available, are very
undependable. Nonetheless, several parents aver that their adult
children have busier social lives than they do. Some report that their
offspring do not want to come home on weekends now, for fear they
will miss a favorite activity. While some parents have regularly
fostered community participation over the years, it is clear now that
there are many more community activities in which their children
participate and to which they are welcome. The worry—What
happens when they are not there?
III. SPECIFIC RESPO NSES FROM FOCUS GROU PS AND
SURVEYS
A. Service Obstacles and System Problems Identified. While a
number of service problems were identified earlier in this section, it is
clear that for a number of services there are completely different
perspectives. Therefore, the identified service problems that follow
are those that are repeatedly identified in more than one area of the
state. That is, these are statewide service obstacles rather than local
ones.
#1. ADT programs do not provide skills training or otherwise
further the goals of the individuals receiving these services.
73
#2. Res Hab services do not provide adequate training for the
individuals receiving this service to live more independently.
#3. Direct support staff in both of these service settings have
very high turnover rates, inadequate pay and are not well
trained or held accountable for providing the required services.
#4. The van transportation typically available to group home
residents often mitigates against individual choice, since the
priority needs of one or two residents will limit the use of the
van.
#5. Paratransit transportation is sometimes not available and
often unreliable, to the point of jeopardizing the health and
safety of its more vulnerable riders.
#6. Statewide, there is a serious lack of dental care providers
who are familiar with and available to treat individuals with
disabilities.
#7. It is extremely difficult to develop an SE follow-along plan
for students who are not on the waiver.
#8. There is a lack of available companions and PCAs to assist
consumers who wish to become or remain living independently
in the community.
A number of systems problems that deal primarily with the
administration or implementation of the DDP Medicaid waiver were
also identified by both focus group participants and survey
respondents. These systems issues include:
#9. The size and time of delay on the waiting list is a source of
frustration for many families and individuals who are now
unserved or underserved.
#10. In at least two districts, DDP case managers discourage
families from applying for the Medicaid waiver since they are
not “in crisis.”
#11. There has been a fourfold increase in the paperwork
process for obtaining services in the past year; some of it is
duplicative.
#12. Some Maximus liaisons appear to have biases for/against
certain services, making it difficult to obtain these disfavored
services when they are needed.
#13. Medicaid provider application packages are complex and
difficult to complete, discouraging potential providers (e.g.,
74
dentists) from applying.
#14. The paperwork and processing time now required for cost
plan amendments can result in service interruptions to the
individuals.
#15. The need to show “medical necessity” for services for
individuals who do not have a lot of medical problems can be
extremely difficult and seems to conflict with making individual
choices.
Suggestions for Addressing Service Obstacles and Systems
Problems. In addition to identifying service obstacles and systems
problems, focus group and survey respondents also suggested ways
to address these issues that would improve/expand access to
services. These suggestions are listed below, and numbered
according to the issue above that each addresses.
#1. Staff and supervisors in ADT programs should be well
trained and accountable for helping each individual served with
making measurable progress toward meeting individual goals.
#2. Providers of Res Hab services should be held accountable
for helping each individual served to make measurable
progress toward meeting the individuals’ goals toward more
independent living.
#3a. Direct support staff in ADTs and Res Hab settings should
be given adequate pay and other retention-oriented incentives,
as well as receive adequate pre-service and ongoing in-service
training.
#3b. Develop and offer on-line and teleconference training for
staff in Res Hab and ADT settings.
#4. Seek waiver coverage of supplemental transportation for
community participation, day activities, volunteer work etc, for
group home residents when such activities are part of an
individual’s plan.
#5. Paratransit providers should be held accountable for a
higher quality of service and not reimbursed for service that
fails to meet such standards; drivers should receive more
intensive training.
#6. Dental staff and resources of DSIs should be partnered with
dental schools and used to provide pre-service training to
dental students and continuing education certification to current
practitioners.
75
#7. Seek DVR funding for SE follow-along for transitioning
students who are not on the waiver and do not have a support
coordinator.
#8. DDP should recruit Medicaid home health agencies and
offer training in caring for persons with developmental
disabilities to companions and PCAs.
#9. While seeking full funding and rapid implementation of
services to individuals on the waiting list, the DDP should
develop a mechanism for updating families every six months
about their status on the list, and to determine any changes in
client or family circumstances.
#10. All DDP staff must be informed immediately that they
should encourage all eligible individuals to apply for the
Medicaid waiver.
#11. The paperwork process for obtaining services and for
obtaining prior authorizations should be streamlined and
automated to the greatest extent possible.
#12. Maximus staff should be trained on the need to be
objective when evaluating prior service authorization requests
and refrain from displaying any bias for or against certain types
of services.
#13. Medicaid provider application packages must be
streamlined and the application process abbreviated for dental
professionals who are in such great demand statewide. A
financial incentive for potential dental providers might also be
considered.
#14. Paperwork and processing time for cost plan amendments
must be reduced to a maximum time limit of 15 days, which
would prevent any interruption in services to beneficiaries.
#15. Consider broadening the term, “medically necessary”
when applying it to services for otherwise eligible individuals
with developmental disabilities, who are seeking more
community independence.
B. Individuals with Developmental Disabilities Who Are Not
Receiving Services. Focus group and survey respondents were
queried regarding their knowledge of individuals with developmental
disabilities who are not currently receiving services from DDP. Those
who identified unserved individuals were also asked to provide
reasons for the lack of services. The following descriptions of
individuals and reasons were presented.
76
Respondents from eight different districts acknowledged knowing
individuals with disabilities who are not receiving services. Two of the
individuals described are otherwise eligible for services but do not
qualify for Medicaid. Furthermore,
 There are currently 70 DDP clients in Monroe County who do not
receive any DDP services. (Whether there is an absence of
providers for the services in question is not explained.)
 Several foster children with disabilities in district 14 are not DDP
clients because the constant changing of foster care staff has
made processing of their applications difficult for DDP staff.
 Several respondents mentioned a large number of individuals who
have been on the waiting list for a long time, but who are not
considered to be “in crisis.”
 Several respondents describe nearly 30 individuals whom they
know that were turned away by DDP staff.
 One respondent mentioned knowing of a number of individuals
who do not receive services because their parents and guardians
are either new to the area or they are poor and uneducated and do
not understand/are intimidated by the system.
IV. CONCLUSIONS AND RECOMMEND ATIONS FROM
THIS STUDY
A. The Overall Service Picture in Florida. While there is a wide
array of publicly funded social and health services available to the
residents of Florida, the DDP remains the primary provider (through
AHCA) of services to adults with severe developmental disabilities.
The majority of these services are now provided under the DDP’s
HCBS waiver. Over the past several years, a considerable increase
has occurred in the amount of services provided and the number of
people being served, due to an aggressive pursuit of Medicaid
waiver funds. This success has been tempered by the fact that
whenever an individual on the waiver waiting list has been served,
another person appears to take his/her place. This phenomenon
gives weight to the estimate that there are likely about 80,000 people
with developmental disabilities in Florida who need or will need
services. This number is approximately twice the total of people now
being served in either institutional or community based settings.
Conflicting Service Trends. Though the DDP does not “market” its
services, in a real sense, new service expectations are being
created. While DD services evolved over the past 50 years from
being institutional based to being community based, living
arrangements became smaller. As the current generation of potential
consumers moves out of the school system, they are not looking for
sheltered work and group living environments, rather they are
expecting individualized service settings. Inspired by self-
77
determination principles and the right to choose, they expect to be
accommodated by the services they desire.
Yet, there remains an established group of older individuals and their
families that expects and is comfortable with group homes and day
programs. And they, too, expect to be accommodated.
Simultaneously, in a state that long lagged behind other states in
providing services to adults with disabilities, a pent-up demand for
services is being released. As a result, the DDP must manage
services to accommodate both sets of expectations, while continuing
to see a waiting list for services that never seems to disappear.
One telling sign of the power of the new wave of expectations is the
“system redesign” which is now underway in the DDP. Many of the
stakeholder groups involved in planning the redesign are champions
of individualized services and community independence. Over time,
the emerging consumer market will likely redefine the services which
providers offer.
And, as in other states, the roles of day programs and group homes
will probably diminish. Group homes may gain a different service
emphasis, and will increasingly become the choice for older adults
who have lived their entire lives with, and supervised by, their
parents.
The existence of current and future recipients with different service
expectations will undoubtedly result in tensions within the system. A
current indicator of such tension is heard in the adamant voices of
some advocates who call for moving individuals from the sheltered
services of Res Hab and ADT to the independent services of SE and
SL. The rationale is, that moving some individuals from more
expensive services into less expensive, will clear the way for people
on the waiting list to obtain services. Overall, they believe, more
people will be served with the same amount of money.
Given the fact that the state budget shows no immediate hope for
fully funding services for those on the waiting list this year, the
demand to move people to less expensive services might sound
appealing. But there are two important caveats here. First, many
individuals currently receiving group services would need intensive,
long-term support services in both SL and SE to be successful in
those independent settings. The cost of these additional supports
would quickly erode (and perhaps outstrip) any savings that resulted
from the initial transfer. When the dust finally settles from these
transfers, fewer (rather than more) people may end up being served.
From a fiscal perspective, it would be more prudent to consider
moving only those individuals whose transfers would result in a cost
savings.
78
Second, and more important, individuals receiving group services
may do so out of preference and comfort level. Since a hallmark of
the waiver is choice and self-direction, no one can be forced to
accept more independent services when both types exist, even in
light of the Olmstead decision. Therefore, a more thoughtful
approach to balancing these two “rights” and managing this tension
must be achieved by the DDP.
A Change in Service Intensity. Another trend to consider is the
escalation of service expenditures, as a result of families growing
older. In the state of Arizona, for instance, 65% of the people
receiving services live at home with their parents, whose average
age is 62. These demographics are very similar to the situation in
Florida. With aging caregivers, the number of services hours for inhome support services will tend to increase. This becomes
necessary, not due to any change in the health of the care recipients,
but because their parents’ ability to provide care diminishes. An
increase in costs results, due to more service units being needed.
B. Obstacles and Recommendations from the Study. The
following obstacles, gaps in services and recommendations are
derived from the data gathered in the analysis of services and from
the data gleaned from the input of stakeholders. As in Part One,
these are presented in chronological order.
Services for Children.
1.1 Obstacle: Children who are not eligible for Medicaid may
not receive expensive therapies or treatments that are not
covered by private insurance.
1.1 Recommendation: Work to enact legislation requiring
private insurance coverage of certain expensive therapies
and treatments that are needed by children with
developmental disabilities.
1.2 Obstacle: There is a lack of service providers of various
adjunctive therapies for children in all school district areas.
1.2 Recommendation: Work to enroll more Medicaid providers
of various therapies for children, to assure they are
available to provide services to school districts in all areas
of the state.
1.3 Obstacle: Certain professional documentation on a
student’s CERT may unjustly result in the termination of
adjunctive therapies.
1.3 Recommendation: Support the efforts of the Advocacy
Center in neutralizing the effect of CERT documentation
upon the status of adjunctive therapies.
1.4 Obstacle: Funding caps may preclude children with less
79
severe physical disabilities from accessing health care
services.
1.4 Recommendation: Provide a sufficient safety net to
assure health care access for children who may have less
severe physical disabilities or health care needs.
Services for Children Transitioning from School
2.1 Obstacle: Transition of health care services for children
who are transferring from pediatric health care providers to
adult providers of care is poorly planned; access to
experienced providers is severely limited.
2.1a Recommendation: Develop a mechanism akin to school
transition services that will ensure the continuity of health
care for transitioning students to experienced providers.
2.1b Recommendation: Support the use of materials
developed by the Adolescent Health Transition Project at
the University of Washington, to educate individuals and
their families about transitioning health care services.
2.2 Obstacle: Poor, uneducated and some minority families do
not participate in the transition planning process with their
children.
2.2 Recommendation: Develop outreach training and
mentoring for poor, uneducated families, using low reading
level and alternate language materials.
2.3 Obstacle: There are inconsistencies in the quality of
transition services within and across school districts.
2.3 Recommendation: Create a position of “Transition
Facilitator” within each school district or area to assure
consistency of transition services and to work with families.
Facilitator positions should be filled with non-educator
candidates who have prior, real world disability experience and
training.
2.3 Obstacle: There is no seamless transfer of assistive
technology devices for transitioning students.
2.3 Recommendation: Alternative methods of paying for
assistive technology devices should be in place prior to a
student’s transition from school. Consider allowing
continued use of district owned technology for students
continuing to post-secondary education, pending DVR
purchase of replacement devices.
2.4 Obstacle: In some districts DDP staffs discourage
transitioning students from applying for the Medicaid waiver,
since a long waiting list exists.
80
2.4a Recommendation: All DDP district staff must be trained
and updated yearly on understanding the purpose of
transition services and of the necessity for preparing for
their roles in the Transition IEP meetings.
2.4b Recommendation: All DDP staff must be informed
immediately that they should encourage all eligible
individuals to apply for the Medicaid waiver.
2.5 Obstacle: Lack of availability of providers adequately
trained to participate effectively in transition services.
2.5 Recommendation: Require all providers of adult services
to be adequately trained to participate in transition services.
Services for Adults
3.1 Obstacle: ADT and Res Hab service expenditures
comprise more than 50% of the waiver budget.
3.1 Recommendation: Work to increase the number of
providers for SE and SL Coaching services; identify
consumers for these options when services exist.
3.2 Obstacle: Nearly 11,000 people are currently on the
waiting list for the waiver.
3.2 Recommendation: Support full funding to serve all
individuals on the wait list.
3.3 Obstacle: The cost of AT is often prohibitive for consumers
who are not covered by the waiver or eligible for DVR
services.
3.3 Recommendation: Encourage federal subsidies for AT
development to lower prices for consumers; expand AT
recycling efforts of FAAST.
3.4 Obstacle: There is a shortage of affordable, accessible
housing in Florida.
3.4 Recommendation: Support federal and state subsidies for
the development of affordable, accessible housing.
3.5 Obstacle: SL coaches and support coordinators are often
unfamiliar with the housing resources in their local
communities.
3.5 Recommendation: Develop specific multi-media training
materials on local housing resources for continuing
education of SL coaches and WSCs.
3.6 Obstacle: Statewide, there is a serious lack of dental care
providers who are familiar with and available to treat
individuals with disabilities.
3.6 Recommendation: Dental staff and resources of DSIs
81
should be partnered with dental schools and used to
provide pre-service training to dental students and
continuing education certification in disabilities to current
dental practitioners.
3.7 Obstacle: There is a lack of understanding, reporting and
prosecution of crimes committed against people with
disabilities.
3.7 Recommendation: Increase public awareness of these
crimes by conducting a statewide educational campaign
and providing widespread training of individuals, families,
disability professionals and criminal justice professionals.
Services for Older Adults
4.1 Obstacle: There are few options for day programs for older
adults or younger individuals with severe cognitive
impairments.
4.1 Recommendation: To avoid duplication of effort, allow
older individuals (and those with severe cognitive
impairments) on the DDP waiver to receive cross-waiver,
adult day care services (Aged and Disabled Waiver) as a
substitute for ADT services. Recipients should not lose their
DDP residential services or support coordinators, when this
is the best service choice for the individual’s needs.
4.2 Obstacle: Elderly parents are often no longer able to
provide care for their adult offspring, and are fearful about
the lack of available residential options.
4.2 Recommendation: Using existing models, the DDP should
begin developing specialized group homes for older
individuals in all districts across the state.
4.3 Obstacle: Elderly parents do not make future-care plans for
their offspring.
4.3 Recommendation: All support coordinators should attend
“train-the-trainer” sessions in future-care planning as part of
their required continuing education. This will equip them to
train, guide and counsel all elderly families they serve in
using the tools and completing the activities of future-care
planning.
4.4 Obstacle: Obesity and lack of exercise are common health
problems of older adults with developmental disabilities.
4.4 Recommendation: Adopt healthy lifestyles training as a
core part of training programs for all individuals receiving
Res Hab services or living in group homes.
82
Taken together, the gaps, obstacles to services and
recommendations for improvement listed above, and those
identified by stakeholders, comprise a litany of opportunities to
achieve better coordination and an expansion of services to
individuals with disabilities in Florida. Acknowledging the
heterogeneity of individuals with disabilities, no attempt was
made to rank these obstacles and recommendations in order of
importance. In fact, many of the issues identified are consistent
with The Council’s 2003 Legislative Priorities. The new issues that
surfaced in this report may provide the impetus for future action.
V. E M E R G I N G N AT I O N A L T R E N D S A N D T H E I R I M PA C T I N F L O R I D A
A. Employment. There is ample data to prove that people with
disabilities are the most unemployed and underemployed individuals
in the country. Yet the vast majority of these people are willing and
able to work. Rather than depending on federal benefits and services
to survive, thousands of people with disabilities would rather have a
good, steady job and be productive, tax paying citizens.
The Workforce Investment Act is the federal government’s approach
to job training for the general population. The concept is that, through
One-Stop delivery centers, job seekers can access job training and
other related programs. People with disabilities are expected to be
one of the constituencies that use these centers. However, job
seekers with disabilities are finding it difficult, if not impossible, to
make their way through the One-Stop mazes. Here in Florida, the
DVR is working together with DLES in pilot programs in several
counties, to assure that One-Stop users with disabilities looking to
connect with DVR are able to do so successfully.
B.
Housing. To be part of the community and live as
independently as possible is one of the most important dreams
shared by many individuals with disabilities, their families and
advocates. Across the country, at least 640,000 individuals live with
their aging parents who are over the age of 65. People with cerebral
palsy and other mobility impairments find it nearly impossible to
locate housing with even basic accessibility features. This difficulty is
magnified in rural counties where rental housing is scarce and new
homes are rarely built.
The U.S. Department of Housing and Urban Development (HUD) is
responsible for providing housing and housing assistance available
to those in need. HUD reports that the housing needs of most lowincome people across the country have improved. At the same time,
83
however, the most urgent housing needs of people with disabilities
have only deteriorated.
Section 8 Rental Assistance, with its Housing Choice Voucher
program, currently mandates that all 50,000 vouchers designated for
people with disabilities since 1997 continue to be set-aside for
people with disabilities. However, the Bush Administration is
proposing to block grant the Section 8 voucher program and transfer
it to the states to administer, rather than the public housing
authorities. Should this occur, people with disabilities will lose out,
since states will be forced to choose between reducing the monthly
subsidies on the vouchers, or reduce the number of households who
receive assistance.
A National Affordable Trust Fund Act has been introduced into
Congress. By using a portion of FHA profits to establish a trust fund,
this bill would triple affordable housing construction across the
country. States and non-profits could draw from this trust to build
affordable housing. This should dramatically increase the number of
wheelchair-accessible housing units nationwide.
In Florida, continued funds will be available to purchase new homes
and rehabilitate existing affordable, accessible homes for people with
disabilities, since the Sadowski Trust Fund, which supports the SHIP
program, escaped Legislative efforts to transfer its funding into
general revenue this year.
C. Assistive Technology. The use of assistive technology devices
has greatly increased since the early nineties, due to the aging of the
population as well as to advances in technology, public policy
initiatives and changes in the delivery and financing of health care.
Two decades ago there were 60 U.S. companies manufacturing
assistive technology products. Today, there are hundreds of
companies nationwide and about a thousand worldwide.
Assistive technology is a part of the lives of about 1/3 of the 54
million people with disabilities in this country—more than 18 million
people. According to the National Center for Health Statistics, across
the country, an estimated 7.4 million persons with mobility
impairments use assistive technology devices. Of these, 1.5 million
use wheelchairs. Another 4.6 million use back braces and artificial
limbs to compensate for orthopedic impairments. 4.5 million people
use hearing aids, amplified phones, closed captioned television and
other assistive devices for hearing impairments. An additional
500,000 individuals use these devices for vision impairments.
Assistive technology plays an important role in increasing the
presence of people with disabilities in their communities.
Yet, 36 million people with disabilities do not use assistive devices.
Many of them are unemployed, underemployed and uneducated for
84
the workplace. To remedy this loss of productivity, the National
Council on Disability offers the following guidelines:
a. “Manufacturers must expand their marketing programs
so more people with disabilities and their families learn
about these products. An improved marketing program
will sell more products and, consequently, reduce their
cost. The high cost of some products has often
discouraged potential buyers.
b. Federal and state governments must help subsidize the
high development costs of assistive technology
products.
c. Creative ways must be found to help consumers pay for
this equipment, so that no one is left behind.
d. Public and private sector employers must hire people
with disabilities. In doing so, they must consider the
purchase of assistive technology as a capital investment
and not an extra expense.
e. We must ensure that all students with disabilities who
require assistive technology devices have them. We can
no longer afford to have hundreds of students with
disabilities drop out of schools annually, because
schools lack qualified teachers and the AT equipment to
educate them.
It is essential to continue to develop and distribute these tools, which
can enhance the independence and abilities of people with
disabilities, not merely because it is right…but because it benefits the
country.”
In Florida, the responsibility for providing assistive services and
technology to people with disabilities is distributed across a range of
agencies: DOE, school districts, DVR, DOH (CMS), DDP, AHCA,
FAAST and the Advocacy Center for Persons with Disabilities. Each
of these entities plays a different role in the delivery system, but
there is no entity coordinating these roles. Florida must support
legislation to establish a coordinated system for delivering the
appropriate assistive technology devices to the people with
disabilities who need them, regardless of funding source, across their
lifetimes. Such a system would also recycle devices that have been
outgrown. Another element in the system might be an AT voucher,
which informed consumers could use to purchase the services and
devices they require.
D. Consumer Directed Care. This is a national trend that is already
affecting Florida. Many individuals with disabilities and their families
prefer to directly manage the services and supports they receive.
They want to make the decisions about who will come to the home to
provide services and when they will come. This is one way of
insuring that the services and supports they receive are tailored to
85
their needs and preferences. Over the past several years, around the
country and in Florida, several consumer and family-directed care
demonstration programs were conducted with funding from Medicaid
and the Robert Wood Johnson Foundation. Unanimously, the
participants in these programs proclaimed greater satisfaction with
their services and with their lives. The success of such programs has
led to a number of states—including Florida—applying for and
receiving new Medicaid waivers called Independence Plus, which
feature consumers and families directing the delivery of care. This
new waiver is expected to begin in Florida sometime later in 2003.
The clamor for more control and flexibility in managing care has also
had an impact of the service delivery format that DDP expects to
implement, under the System Redesign that is currently underway. A
chief feature of the redesign is that, once individual service budgets
are approved, a flexible services menu will allow individuals and
families to move easily between service categories as the needs of
individuals change. Purchases of services based on those changes
will require no further DDP approval, as long as the overall budget is
the same. Also, with service providers submitting their own billing
under the new system, service recipients will have an opportunity to
review monthly bills for the services they receive.
E.
Medicaid. The national trend that is likely to have the most
impact on Florida residents with disabilities is the Bush
Administration’s proposal for converting Medicaid into a program with
capped allotments, essentially making it a block grant. While the
proposal offers states additional money for Medicaid for the next
seven years, it also requires that state accept a capped allotment
that requires them to repay advanced federal funds in later years.
According to the current proposal, states opting not to choose the
block grant will continue to administer Medicaid programs under
existing rules and without additional funding.
Though the receipt of additional funds sounds like a boon to cash
strapped states, the acceptance of capped allotments would
preclude states from accepting more enrollees and destroy
Medicaid’s role as an entitlement program. Over 1.5 million
individuals with disabilities are now Medicaid “optional” beneficiaries,
including individuals eligible for home and community based waivers.
The services used by these individuals vary.
Under this proposal, states would have the unfettered discretion to
define both eligibility and benefits for people with disabilities, so that
coverage would no longer be guaranteed. In an environment of
decreasing state revenues and escalating Medicaid costs, decreases
in services to people with disabilities would seem inevitable.
Important federal protections regarding service access and service
quality would be at risk. Cutbacks would exacerbate the crisis in the
availability of direct care workers, further affecting service quality.
86
With the State of Florida looking at a waiting list of nearly 11,000 new
people for the DDP HCBS Medicaid waiver, the enactment of this
proposal would be a devastating blow, whether or not this state
chose to participate in the block grant option. Either way, the result
would be unacceptable: inevitably, there will be fewer services for
less people with disabilities, now or in the future.
…………………………………
87
REFERENCES USED IN THIS REPORT
AAMR. (2003). Fact Sheet: Aging – Older adults and their aging caregivers. Retrieved 3/31/03
from http://www.aamr.org/Policies/faq_aging.shtml
A guide for professionals to vocational rehabilitation and school-to-work transition services.
(Pamphlet). Florida Department of Labor and Employment Security. Division of
Vocational Rehabilitation
A profile of older Americans. (2001). U.S. Department of Health and Human Services:
Administration on Aging.
Affordable housing opportunities for people with disabilities: Demonstration projects and best
practices. (2002). Florida Housing Coalition for the Florida Developmental Disabilities
Council, Inc.
Agency for Health Care Administration. (2002). Florida Medicaid Summary of Services. State of
Florida: Author.
Ashbaugh, J. (2001). Better managing the delivery of services and support to people with
developmental disabilities using information technology. Mental Retardation, 39 (4), 322326.
Children’s Medical Services: CSM Network. (2003). When youth with special health care needs
transition to adulthood. Retrieved 4/3/03 from
http://www.cms-kids.com/CMSNTransition.htm
Children’s Medical Services: CMS Network. (2003). Assistive Technology. Retrieved 4/3/03
from http://www.cms-kids.com/CMSNTrans9.htm
Children’s Medical Services: Infants & Toddlers Early Intervention Program. (2002). Program
Data and Reports. Retrieved 4/3/03 from http://www.cms-kids.com/InfantPrgData.htm
Consumer directed care - The Florida cash and counseling demonstration. (2003). Medstat.
Department of Elder Affairs Major Programs – requirements and services. (2002). State of
Florida: Department of Elder Affairs.
Developmental Services waiver services, Florida Medicaid: Coverage and limitations handbook.
(2002). Agency for Health Care Administration.
Dixon, K.A., Kruse, D., & Van Horn, C.E. (2003). Americans’ attitudes about work, employers
and government work trends: Restricted access: a survey of employers about people
with disabilities and lowering barriers to work. The State University of New Jersey, John
J. Heldrich Center for Workforce Development.
88
Executive Summary: 2000 N.O.D./ Harris survey of community participation. (2002). National
Organization on Disability. Retrieved 3/4/03 from
http://www.nod.org/content.cfm?id=1078
FAAST. (2000). K-12 Students Rights to Assistive Technology in Florida. Florida Alliance for
Assistive Services and Technology. Retrieved 5/3/03, from
http://faast.org/atresources/students.htm.
Final SCHIP Annual Report Framework - Section VI: Program challenges and
accomplishments. State of Florida.
Florida Department of Education. (2001). Education Information and Accountability Services.
Statistical Brief: Bureau of Education Information & Accountability Services,
Series 2002-06B.
Florida Department of Education. (2000). Developing quality individual educational plans: A
guide for instructional personnel and families.
Florida Department of Education: Division of Public Schools and Community Education. (2000).
Diploma decisions for students with disabilities: What parents need to know.
Florida Department of Education. (2000). Accommodations and modifications for students with
disabilities: Vocational education and adult general education.
Florida Department of Education: Vocational Rehabilitation Services. (2001). Annual Report of
Fiscal Year 2000-2001.
Florida Developmental Disabilities Council, Inc. and Florida Dept. of Health. (2002). The health
of Florida’s children and youth: Atlas of key status indicators, goals, and objectives for
strategic planning.
Florida Developmental Disability Program. Where DDP stands (and the challenges ahead).
PowerPoint presentation. (2002). State of Florida: Department of Children and Families.
Florida Statewide Quality Assurance Program Annual Report 2001-2002. (2002). Delmarva
Foundation, Joint Commission on Accreditation of Healthcare Organizations, Medstat,
The Council on Quality and Leadership, & Garcia and Ortiz.
Fox, H., Limb, S., & McManus, M. (2003). SCHIP Innovations for children with special needs in
managed care. Center for Health Care Strategies, Inc. Resource Paper.
Frequently asked questions to program evaluation unit. Florida Department of Elder Affairs.
Retrieved on 10/9/02 from http://www.myflorida.com/doea/2830dep/2820faq.html
HHS approves Florida independence plus waiver to allow more people with disabilities to control
their care. (2003). United States Department of Health & Human Services.
Health and Human Services: Developmental Disabilities CHAMPS General Information.
Delmarva Foundation Responsible for Statewide Quality Assurance Program for DS
Waiver Services. Retrieved 10/8/02 from
http://myflorida.com/cf_web/myflorida2/healthhuman/ddp/qa&i/champs/gen_info.html
89
Hoenig, H., Taylor, D.H., Sloan, F.A. (2003). Does assistive technology subsitute for personal
assistance among the disabled elderly? American Journal of Public Health, 93 (2), 330337.
Jacksonville Community Council Inc. (1997). Transportation for the disadvantaged. JCCI, 1-28.
Larson, S.A., Lakin K.C., Anderson L., Kwak, N., Hac Lee, J., & Anderson, D. (2001).
Prevalence of mental retardation and developmental disabilities: Estimates from the
1994-1995 National Health Interview Survey Disability Supplements. American Journal
on Mental Retardation, 106 (3), 231-252.
McCall, D. (2000). Florida Health Care News. State Center for Health Statistics. Retrieved from
http://www.floridahealthstat.com/publications/ruralhealth.pdf
Medicine & Health Review. (2003). Key to outcomes is treatment quality, not quantity. Health
Care Information Center, 57 (1), 7.
Medicaid recipients with disabilities benefit from directing their own personal care services,
study finds. (2003). United States Department of Health & Human Services. Retrieved
4/21/03 from http:///www.hhs.gov/news/press/2003pres/20030415.html
Medicaid Summary of Services. (2002). Ambulatory surgical centers. State of Florida: AHCA.
Membership in programs for exceptional students (2003). State of Florida: Department of
Education, Bureau of Education Information and Accountability Services,
Series 2003-11B.
National Center for Health Statistics. Disabilities/Impairments. Retrieved 3/17/03 from
http://www.cdc.gov/nchs/fastats/disable.htm
National Center for Health Statistics. (1997). New report on disability available from NCHS.
Retrieved 3/17/03 from http://www.cdc.gov/nchs/releases/97facts/disable.htm
National Center on Secondary Education and Transition. (2001). Current challenges facing the
future of secondary education and transition services for youth with disabilities in the
United States (Draft). University of Washington: Author.
Office of Program Policy Analysis and Government Accountability, Office of the Florida
Legislature. (2002). Legislative options to control rising developmental disabilities
costs. OPPAGA Program Review, Report No. 02-09.
Office of Program Policy Analysis and Government Accountability: Office of the Florida
Legislature. (2000). Justification Review. Developmental Disability Program: Florida
Department of Children and Families. OPPAGA Program Review Report No. 00-17.
Office of Program Policy Analysis and Government Accountability: Office of the Florida
Legislature. (2000). Performance Review. Developmental Disability Program: Florida
Department of Children and Families. OPPAGA Program Review Report No. 99-31.
90
Osborn, S. (2000). Trends in assistive services & technology: In the nation and in the state of
Florida. Florida Alliance for Assistive Services and Technology Organization. Retrieved
5/3/03 from http://faast.org/atresources/trends.htm
Rowland, C. (2002). White paper: The role of technology in preparing youth with disabilities for
postsecondary education and employment. Utah State University, Center for Persons
with Disabilities, Web Accessibility In Mind (WebAIM).
Rural and Urban Health. (2003). Challenges for the 21st century: Georgetown University,
Chronic and disabling conditions, 7.
Schneider, G. (2001). An opening and a closing bring tears of joy in SW Florida. Housing
News Network, 16 (2), 9.
Smith, G.A., Prouty, R., and Lakin K.C. (2001). Medicaid long-term services for people with
developmental disabilities – That was then, this is now. Mental Retardation, 39 (6),
488-491.
State of Florida, Developmental Disabilities Program Office. Redesign focuses on service
delivery. (2002). Developmental Disabilities Program Office E-Bulletin, 1 (14).
State of Florida, Developmental Disabilities Program Office. Redesign focuses on service
delivery. (2002). Employment: An important part of adult life. Developmental Disabilities
Program Office E-Bulletin, 1 (18).
State of Florida, Developmental Disabilities Program Office. Redesign focuses on service
delivery. (2002). Provider Cost Survey another piece of system redesign. Developmental
Disabilities Program Office E-Bulletin, 1 (18).
State of Florida, Developmental Disabilities Program Office. Update on developmental system
redesign activities. (2002). Developmental Disabilities Program Office E-Bulletin, 1 (10).
State of Florida, Developmental Disabilities Program Office. (2002). Developmental disabilities
program legislative budget request for fiscal year ‘03-’04 released. Developmental
Disabilities Program Office E-Bulletin, 1 (13).
State of Florida, Developmental Disabilities Program Office. (2003). What’s Next in the System
Redesign? Developmental Disabilities Program Office E-Bulletin, 1 (22).
State of Florida, Developmental Disabilities Program Office. (2003). Prior Services
Authorization. Developmental Disabilities Program Office E-Bulletin, 2 (1).
State of Florida, Developmental Disabilities Program Office. (2002). Facts about developmental
disabilities and the developmental disabilities program. Developmental Disabilities
Program Office E-Bulletin, 1 (2).
State of Florida, Developmental Disabilities Program Office. (2002). Stakeholders Provide input
into developmental. Developmental Disabilities Program Office E-Bulletin, 1 (4).
91
Texas Council for Developmental Disabilities. (2001). 2000 Biennial report: Imagine the
possibilities, Imagine the hope. Texas: Texas Office for Prevention of Developmental
Disabilities.
The ARC, AAMR, UCD, UCP. (2003). Policy paper on the Assistive Technology Act.
The Commission for the Transportation Disadvantaged. (2002). 2001 Annual Performance
Report. State of Florida.
The Family C.A.F.E. (2002). Florida Developmental Disabilities Status Report.
Tobias, C., & Haberlin, K. (2001). A study of the health care system for adults with
developmental disabilities in Florida. United States Dept. of Health and Human
Services, Administration for Developmental Disabilities, and the Florida Developmental
Disabilities Council, Inc.
Transportation Access: Facts & Statistics - Access to transportation. (2001). National
Organization on Disability. Retrieved 3/4/03 from http://www.nid.org/content.cfm?id=798
United States Census Bureau: State and County QuickFacts. Retrieved 12/15/02 from
http:quickfacts.census.gov/qfd/states/12000.html
University of Colorado, Coleman Institute. (2000). The State of the States in Developmental
Disabilities: Florida. Retrieved 7/31/02, from
http://www.cusys.edu/ColemanInstitue/stateofthestates/statehomepage.htm
University of Miami, Department of Pediatrics: Mailman Center for Child Development. Early
intervention and assistive technology working together. Retrieved 1/24/03 from
http://pediatrics.med.miami.edu/mailman/assist_tech.htm
University of Minnesota, The College of Education & Human Development. (2000). Prevalence
of metal retardation and/or developmental disabilities: Analysis of the 1994/1995
NHIS-D. MR/DD Data Brief, 2 (1).
Ward, T. (1999). Student performance standards. Florida Alliance for Assistive Services and
Technology. Retrieved 5/3/03 from http:www.faast.org/atresources/papers.htm
Ward, T. (2002) Florida housing resource guide. Florida Alliance for Assistive Service and
Technology.
Williams, J. (2003). Assistive Technology – What is it and how it improves our lives. National
Organization on Disability. Retrieved 3/17/03 from
http://www.nod.org/content.cgoom?id=1354
92