Making Change in Shifting Sand:
Autism Implementation Grant and LEND
Nancy Cronin, MA
Maine Developmental Disabilities Council
Alan Kurtz, PhD Candidate
Types of Data
Types of Data
Systemic Process
• Where are we? (What data do we have)
• IDEA
• MaineCare Claims
• Assessing the Process (Visual Mapping Tools)
• Four VSM’s
• Overall System
• Early Identification
• Early Intervention
• Transition
• Confirmation with National Data
• Measuring the Grant Activities
Where Are We? What Do We Know?
Review of Newest Data Available
 U.S. Centers for Disease Control updated its findings this
year:
 An average of 1 in 88 children are diagnosed with a ASD.
 The growing epidemic is worldwide. (Studies in Asia, Europe and North
America have identified individuals with an ASD with an approximate prevalence of
0.6% to over 1%.)
 According to both MaineCare and DOE data, the
prevalence of ASD diagnoses in children is increasing in
all age groups although growth between datasets is
different.
 2009-2012 DOE data indicates a 21% increase
 2009-2012 MaineCare data indicates a 20% increase
http://www.cdc.gov/ncbddd/autism/data.html
Current Data Provides Incomplete Picture of
ASD Prevalence
 DOE data only documents students who receive
services under the Autism category; it does not include
students served under other categories such as Other
Health Impaired and Multiple Disabilities
 MaineCare data reflects only those individuals who:
• Were eligible for MaineCare services during the given
time period
• Have a primary diagnosis of ASD
 DOE data and MaineCare data cannot be linked at this
time to allow broader analysis of service characteristics
Special Education Data
Comparative trends in the # of children served in Maine public schools under the Special Ed
category of Autism as compared to the total # of Students in Maine
220000
215000
3500
2,989
212,957
3000
2,801
210,946
210000
2,646
209,745
207,517
205000
2,471
2500
205,000
2,231
202,417
201,912
200000
1,990
Axis Title
2000
1,760
195000
194,545
1,471
190000
1,255
188,686
1,018
185000
180000
1500
189,140
846
594
185,033
2 year increase of 13%
712
10 year increase of 253%
Average Annual Increase of 15%
1000
500
175000
170000
0
2000
2001
2002
2003
2004
2005
2006
Entire School Population
2007
Autism
2008
2009
2010
2011
2012
Special Education Category Distribution Over Time
100%
1167
1063
594
90%
759
674
2801
3834
2486
80%
2865
2909
70%
2650
Developmentally Delayed
5930
60%
Intellectual Disability
Autism
50%
9734
Emotional Disability
Multiple Disabilities
40%
6892
Other Health Impairment
Speech and Language Impairment
Specific Learning Disability
30%
20%
13143
9229
10%
0%
2000
2011
Growth in # of Students Serviced By Maine Public Schools in
Autism Category
250
(A Large Percentage But Not All Students with PDDs Are Included)
200
150
2007
2011
100
50
0
3
4
Source: DOE ChildFindData
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
Prepared by: Maine Developmental Disabilities Council
MaineCare (Medicaid)
20% Growth Between FY 2009 and FY 2012 in Number of Individuals
with an ASD Whose Claims Were Paid Through MaineCare
2500
2000
1934
Total 2009 - 4,164
75% under the age of 21
1653
1500
Total 2012 - 5,381
60% under the age of 21
FY 2009
1193
FY 2012
1000
933
585 609
565
462
500
327
300
224
119
90 108
85
132
46
106
26 48
0
0-2
3-5
6-12
13-17
18-20
21-29
30-39
Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data)
40-49
50-59
>60
Prepared By: Maine Developmental Disabilities Council
Ratio between Males and Females Receiving
MaineCare in FY 2011
Female
23%
Male
77%
Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data)
Prepared By: Maine Developmental Disabilities Council
FY11 Top 10 Services Cost Children and Youth
with ASD 18 and Younger (n=3,486)
DRAFT
1
Section 28 (Both Schools and Community Modifier HI & HK)
$ 14,636,871.60
2
Section 97 PNMI
$ 7,508,013.07
3
Section 13 TCM
$ 3,957,813.78
4
Section 65 School
$ 3,922,420.20
5
Section 65
$ 2,437,507.57
6
Section 97 PNMI Child Welfare
$
640,101.70
7
Medical
$
555,259.47
8
Section 28
$
332,087.51
9
Speech Therapy
$
259,510.77
10
Occupational Therapy
$
240,897.36
Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data)
Prepared By: Maine Developmental Disabilities Council
FY11 Top 10 Services USED by Children and
Youth with ASD 18 and Younger (n=3,486)
DRAFT
Number of Individuals who
Utilized Procedure
Percentage of
Population
Diagnostic Testing
1808
52%
Section 13 TCM
1665
48%
Medical
1592
46%
Section 28 - School? (Mod HI and HK)
1142
33%
Section 65
1036
30%
Psychological Testing
562
16%
Occupational Therapy
459
13%
Speech Therapy
451
13%
Mental health
344
10%
Section 65 School
338
10%
Procedure
Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data)
Prepared By: Maine Developmental Disabilities Council
FY11 Top 10 Services Cost Adults with ASD
19 and Older (n=1,394)
DRAFT
1
Section 21
$ 6,952,868.64
2
Section 97 PNMI
$ 2,627,708.66
3
Section 28 - School? (Mod HI and HK)
$ 1,290,276.73
4
Section 21 or 29
$
870,005.08
5
Section 65 School
$
522,160.88
6
Section 13 TCM
$
520,131.06
7
Section 17 - Mental Health
$
366,063.99
8
Section 65
$
294,150.54
9
Section 97 PNMI Child Welfare
$
187,829.30
10
Medical
$
136,677.47
Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data)
Prepared By: Maine Developmental Disabilities Council
FY11 Top 10 Services USED by Adults with
ASD 19 and Older (n=1,394)
DRAFT
Medical
Section 65 Med Management
Section 65
Section 17 - Mental Health
Psychological Testing
Section 13 TCM
Diagnostic Testing
19 and Over
582
437
300
291
270
237
158
% of Population
42%
31%
22%
21%
19%
17%
11%
89
89
74
6%
6%
5%
Section 28 - School? (Mod HI and HK)
Section 21
Section 21 or 29
Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data)
Prepared By: Maine Developmental Disabilities Council
Theory: High Cost Individuals are Served Under PNMI in Their Youth Then Transition To Section 21.
Implication: Early Transition Evaluation, Budget Implications
# People
% of the
Section 97 PNMI Using Service Age Group
5 and Under (n=472)
-
-
-
# People % of the
Using
Age
Service Group
Section 21
-
-
-
6-10 (n=1,167)
$
250,228.31
8
1%
11-18 (n=1,847)
$ 7,257,784.76
87
5%
19-21 (n=427)
$ 2,184,037.43
25
6%
$
560,255.77
15
4%
22-29 (n=474)
$
154,985.52
2
0%
$ 3,183,631.21
46
10%
30-39 (n=214)
$
82,910.21
2
1%
$ 1,956,446.13
22
10%
40-49 (n=140)
$
49,792.82
2
1%
$
573,811.22
10
7%
50-59 (n=86)
$
47,807.00
1
1%
$
255,790.39
4
5%
60-69 (n=36)
$
91,910.07
3
8%
$
422,933.92
7
19%
70 and Over (n=17)
$
16,265.61
1
6%
Assessing the Process
Overall
Overview of the service systems involved in
a
early intervention for children with PDD
Department of Education
Child Developmental Services (CDS)
DEC
Clinic
Parent
4
Pediatrician
2
3
1
Children's Behavioral Health
Services/ Early Childhood Division
Children's Behavioral
Health Services
Parent
Referral
Represents Problem Areas identified by PDD System of Care Group
Autism Society of Maine & DHHS (2007) Report of the Pervasive Developmental Disability (“PDD”)
System of Care Group
a
Overview of the service systems involved in
Transition Services for Youth with PDDa
Continuing
Education
Individual / Self
Referral
Vocational
Rehabilitation
Mental
Health
Department of Education
Transition
Planning
T
<
2SD
>
2SD
No Long Term
Supports
Long
Term
Substance Abuse Supports
Correction
>2SD
Homelessness
Eligible
Crisis
DHHS/D
S
Adult
Protection
Developmental
Services
Waiver Eligible but
Slot Limited
>
2SD
Children's Behavioral Health Services
T
<
2SD
Parent Referral
Represents Problem Areas identified by PDD System of Care Group
Mental
Health
Substance Abuse
Correction
Homelessness
Crisis
Autism Society of Maine & DHHS (2007) Report of the Pervasive Developmental Disability (“PDD”) System of Care Group
a
Involved All Stakeholders (Public and
Private, Individual and Professional)
•
•
•
•
•
•
•
•
•
•
•
•
DHHS Division of Early Childhood
Child Developmental Services
Psychologists
Developmental Evaluation Clinics
Medical Professionals
Early Childhood Educators
Child Care Providers
Office of MaineCare Services
Children with Special Health Needs
Autism Society of Maine
DHHS Children’s Behavioral Health
Services
Disability Rights Center
•
•
•
•
•
•
•
Parents
Department of Education
Speech and Occupational
Therapists
Center for Community Inclusion
and Disabilities Studies
Developmental Disabilities Council
State Office of Information
Technology
Over 200 individuals with PDD,
family members, and
professionals as commenter's
Maine Developmental Disabilities Council
Customer Focused!
Stakeholder Driven!
Nobody likes being told
how to do their job better
Value Stream Mapping
4 Full Days
 Family Group - Current System Map
 Stakeholder Group (includes a
smaller group of families) – Current
System Map, Future System Map,
Implementation Plan
 Report drafted, vetted and finally
approved by stakeholder group and
all families
Maine Developmental Disabilities Council
Early Identification
Family Experience of Current System
Parent
PDD/Autism Current Experience of the Process
Developmental /
Behavioral
Concerns
Birth
We Worry
We Beg
Wait and See
Observation
Developmental
Domain Report
– Eligibility
Meetings
Speech
Therapist
Report
Meetings
Occupational
Therapist
Report
Meetings
Develop
mental
Therapy
Report
Meeting
s
Diagnostician
Report
Meetings
1m
Physician
1m
Doctor
Doctor
1 Year
3 Months
Diagnostician
1 Month
1 Year
1 Month
1 Month
3 Months
1 Year
Referral to
Diagnostician
3 Months
CDS
Some Developmental Delay
Referral to CDS
Eligibility
Assessment
Multi-Disciplinary
Evaluation
IFSP/IEP
3w
Speech Therapy
Therapies
3w
Physical Therapy
3w
Speech Therapy
3w
Speech Therapy
3w
Medical Specialist
3w
3w
Occupational
Therapy
Audiologist
3w
Developmental
Therapy
Slow Weight Gain
Tubes
Slow Weight Gain
Food Issues
Food Issues
Medical Issues
Food Issues
GI Problems
GI Problems
MULTIPLE
SPECIALIST
VISITS
GI Problems
MULTIPLE
SPECIALIST
VISITS
Seizures
Seizures
Seizures
Medications
Medications
Medications
Birth
= Wait Time
= Wait Time
= Decision Point
= Decision Point
Diagnosis/Rule
Out
Family Input
Identification of unmet needs and frustrations with current
system
1. Parents’ Committee documented their families’
experiences with getting a diagnosis and made
recommendations to correct systemic problems.
2. Input solicited and received from other families
corroborated systemic problems identified.
The family stories document that obtaining a
diagnosis takes an average of 31 months.
Provider Experience of Current System
Entity/
Function
Current State
Bookend
Behavior concrn
Gathering
Data
Family,
caregivers,
etc
CT
ST
PCP
Bookend
Diagnosis or Rule out
1d
1,826
B
W A
240m
600 420
Professional
Consultation
1d
20
365d
20m
120
d
Parental
Processing
Screening
Formal
Screening
with PCP
30d
15d
0-3 years
20
960
60m 60m
CDS
Screening
7d
21d 9.5d
60m
180 120
0-3
Eligibility
determination
16d
60
3-5 years
240d 540d
15d 15d
480m
60m
CDS
Evaluation(s)
PCP Referral
16d 16d
60
60
3-5
Domain
Specific
Eligibility
determination
21d
240m
38.5d 56d
240
240
720
Workgroup Future System
Entity/
Function
Future State
Bookend
Diagnosis or Rule out
Bookend
Behavior concrn
Family,
caregivers,
etc
1
PCP
Universal
Screening at
Well Child
Visit
0-3yr
2
PCP Referral
3
Evaluation(s)
2 wks – 3 Months
CDS
CDS / Services
Summary of Workgroup’s
Recommendations
1. Public awareness/education campaign
2. Universal Screening
3. Efficient referral for diagnostic evaluation by
a qualified medical provider
4. Prompt referral to early intervention services
Early Intervention
State Agency/Stakeholder Workgroup
15 participants representing:
 DHHS
◦ Children’s Behavioral Health
Services
◦ Division of Early Childhood
◦ Office of MaineCare Services
 DOE
◦ 2 Statewide Representatives
 Child Developmental Services
◦ CDS of Cumberland County
◦ Two Rivers CDS
 DAFS
◦ Office of Information Technology
 Service Providers
◦ Occupational Therapist
◦ Speech Pathologists
◦ Early Intervention Services
Providers
◦ Center for Community Inclusion
◦ Private Preschool Providers
 Families/Advocates
◦ Autism Society of Maine
◦ Parents
33
X
34
Summary of Workgroup’s Recommendations
1. Statewide registry entity
2. Comprehensive data system to capture DOE & DHHS
systems information
3. Creation of a specialized case coordinator position
4. Consolidation of planning meetings
5. Development of universal forms
6. Development of Treatment/Intervention reference tool
7. Utilization of tele-medicine techniques to coordinate and
oversee therapies
8. Compilation of State resources by local area for early
intervention practitioners
35
Commenter Feedback
25%
Return
Rate
 Forty-one commenters provided feedback on the Early
Intervention Report (the total Commenter “pool” for various
aspects of the PDD Initiative is now 160.)
 Commenters confirmed report findings that the system is
fragmented and uncoordinated.
 Many families submitted very positive comments about
CDS services.
 Families indicated that although their child was MaineCare
eligible, they did not know they could access other
services through DHHS.
 Assure that Child Welfare is represented in future work.
36
Transition To Adulthood
Family Input
Identification of unmet needs and frustrations
with the current system
– Parents’ committee documented their families’ experiences
transitioning from education and children’s service systems
to community supports and other adult services, and made
recommendations to correct systemic problems.
– Input solicited and received from other families
corroborated systemic problems identified.
In the stories documented, 80% of the youth did not have a
transition plan. The other 20% had transition plans without
goals and with no connection to any adult services except
Vocational Rehabilitation. (The Vocational Rehabilitation
connection did not occur until after the youth turned 18.)
State Agency/Stakeholder Workgroup
18 participants representing:
 DHHS
◦
◦
◦
◦
Division of Early Childhood
MaineCare Services
Children with Special Health Needs
Children’s Behavioral Health
Services
 DOE
 Service Providers
◦
◦
◦
◦
◦
◦
Child Care Providers
Head Start
Nurse Practitioners
Psychologist
Developmental Evaluation Clinics
Developmental Pediatricians
 Families/Advocates
 Child Developmental Services
◦ Project PEDS
◦ CDS of Penobscot County
◦ Reach School, Portland
◦ Autism Society of Maine
◦ Parents
Provider Experience of Current System
14 years old
15 years old
16 years old
17 years old
18 years old
19 years old
20 years old
IEP
IEP
IEP
IEP
IEP
IEP
IEP
ISP
ISP
ISP
ISP
ISP
ISP
ISP
CP
CP(V9)
CP(V9)
CP(V9)
CP(V9)
Intake
ADS
PCP
PCP
PCP
Elligibilit
y
ISP
ISP
ISP
IPE
IPE
DHHS
AMH
DHHS
ADS
DHHS
ChildWelfare
DHHS
CBH
Education /
Department of
Education
PDD/Autism Transition
Depart
ment of
Department
Medical
of Labor
Correct
ions
Pre
Intake
Planning
21 years old
PCP
Case Planning
Community and Facility
Case Planning
Medical Needs
Post
Seconda
ry
Other
Educatio
n
Receive
Referral
(Optional)
Application for
Eligibility
Wait list
SSI
Applications to
Schools
14 years old
Comprehensive
Assessment
IPE
Guardianship
Post Secondary Planning
21 Adult receives
eligible services
Workgroup Future System
14 years old
15 years old 16 years old
17 years old 18 years old
20 years old 21 years old
2
1
Parent
Awareness &
Information
4
Intake
Processing
Identification
6
5
First Transition
Meeting
7
Case Manager
Assigned
8
Iterative Annual
Review
9
Eligibility
Determination
for Adult
Services
10
Implementation
of Plan
Feedback
3
Transition
Coordinator
Assigned
11
ONGOING
Professional Development
Parent Information/Support
Youth Self Advocacy Training
21 Adult receives
eligible services
Youth turns 14
2.
Parent notified and
made aware of the
transition process.
4.
Intake Process
The child is asked what
they want to be when
they grow up.
Child is assessed to
determine goals and
strengths
1.
Youth
Identified.
Need for
Transition
Plan
Established.
3.
Education Transition
Specialist assigned.
Sends parents an
information packet with
contact names, roles,
and roadmap. In
addition, who to cal
when plan is not being
followed on or where to
go when they are
getting conflicting
information
5.
One Information Source
One Plan that combines all required data by each
participating agency.
Collateral providers should attend meetings so plans
can be coordinated so they meet the youth and
family needs.
Parents will help decide who is involved and how
much information is shared.
Family meets with
Transition Specialist at
a computer and enters
data into a “kick butt”
software system.
Youth attends the meeting or has a meaningful way
to provide input to the meeting.
Information recorded in
the database is
accessible by all
agencies serving the
youth.
Plan includes:
Course of study leading to the child’s goals
established.
Crises Plans
Treatment Plans
Permanency Plan
VR/IPE or other employment
Waiver requirements
Post Secondary Education
Education to youth on rights and responsibilities
Health
Legal Services
Insurance
Community Integration
Housing
SSI
Guardianship
There is a website that
demonstrates types of
data to be asked.
Meeting to develop plan and timeline of what needs
to be done when.
7.
6.
If youth
does not
have one,
refer for a
case
manager.
Case
Manager
understand
s all
systems
and
services
available
under each
domain.
Case
Manager
assigned to
follow up
on tasks in
plan.
Beginning at age 15,
rinse and repeat.
Annual updates/
changes by all
parties.
Meet more
frequently if
necessary, for
example if there is a
placement change.)
At age 16
Applications to DOL
and all relevant adult
services including
SSI.
Apply for Voc
Rehab, receive a
letter of receipt and
receive a letter of
determination.
Notify adult agencies
and have these
agency people at
IEP / Transition
meetings.
Begin talking about
when graduation will
occur.
8.
9.
10
Child services
integrates with adult
services between
the ages of 18 and
21 to provide
transition support.
Actualization of the
plan. (Yea! It
works!)
360 Feedback loop
about process
Quality assessment
of client satisfaction
informs process
improvement.
Supports are
available
Plans in place for
ALL services prior to
graduation / school
exit.
Requirement for
planning process to
continue by DHHS
case manager after
exiting school – if
necessary.
11
ONGOING
Training for all involved representatives in overall
process and best practice.
Community Supports
Health Providers
Post Secondary Ed Reps
Ongoing parent information
Parent support groups.
“Thank you for sending along the report from the transition work group. I
think it is quite thorough. I thought the visuals were very helpful and
especially appreciated that families shared their stories. I hope that the
Commissioners will understand that these represent so many other families!
…Transition is one thing, but if there is little of quality or even adequate to
transition to, the point of transitioning is completely lost. My experience and
observations are that a sufficient and qualified pool of support people doesn't
exist, aren't paid or supported well enough, etc.
Right now my husband and I feel like the most realistic plan for our
daughter's future is that we must never become ill and must never die OR we
should clone ourselves. I know that seems absurd, but it is not said
necessarily in jest. I'm sure many other families relate to those kinds of
sentiments, nor is it new to you.” (Parent)
Postsecondary Transition For
Youth with ASD in Maine
Peer to Peer Meeting
Association of Maternal and Child Health Programs
Mystic Connecticut, August 7-9, 2013
What are Good
Transition Outcomes?
• Employment
• Education or Training Necessary to Achieve
One’s Life Goals
• Community Living
• Satisfying Social Life and Friendships
• Happiness
Evidence Based
Transition Practices
•
•
•
•
•
•
Collaboration
Teaching Self-Determination
Work Experience and Training
Student-focused Planning
Active Family Involvement
Assistive Technology
Obstacles for Youth
With ASD and Their Families
• Lack of Information for Families about
Adult Services and Supports.
• Difficulty Communicating Interests
Preferences, and Concerns.
• Difficulty Participating in Planning
Meetings.
• Anxiety about the Future.
TRANSITION-RELATED ISSUES
REPORTED BY MAINE FAMILIES OF
YOUTH WITH ASD
PDD Transition Workgroup
• Organized by MDDC.
• Conducted focus groups with six Families.
• Convened and mapped current transition
process.
• Reviewed summaries of focus groups and
developed plan for future system.
In general youth with ASD enter adult
life without:
•
•
•
•
•
A plan for housing;
Community supports;
Employment;
Educational supports;
A plan of coordinated supports involving
DHHHS, DOE, and DOL.
No Transition Plan!!
• Five families reported that at some time
their children did not have the required
transition plan or transition goals.
• Two with Asperger’s, one autism and
nonverbal, one with autism and one with
PDD-NOS.
Late Transition Planning
• Student with PDD-NOS – started in senior
year.
• Student with autism – transition goals for
first time in 5fth year of HS.
Inadequate transition planning
• Parents told by school that “they” should
be focusing on transition.
• Goals and services are not designed to
reasonably assist student in achieving her
or his goals*
• Goals not based on student’s interests*
Poor secondary education supports
• Entered postsecondary education without
any plan for support.
• Students with ASD and families have been
provided no information on how PSE
supports differ from those provided under
IEP.*
No job preparation
• Job preparation will start when he is 17.
• Failure of school to provide requested prevocational training.
• Parents found job for child on their own.
Lack of support from VR
• VR slow to respond
• Told that they would get involved in
Spring of senior year
• Could not get support from VR without
long-term supports from DHHS
• Determined services would not be
provided because she was not
“school/work ready” and could not drive.
Lack of Knowledge
About Adult Services
• School personnel unaware of various adult
services and roles of agencies.
• Parents had to learn about adult services on
own.
• Inability of school to identify programs
appropriate for son.
• Adult services “non-existent” (person with AS).
Difficulty Obtaining
Adult Services
• Difficulty obtaining case management
services.
• DHHS denies services.
• Put on waiting list.
Lack of expertise - school
• Inaccurate diagnosis – denied special
education services.
• Did not know how to address mood/emotional
problems.
• Lack of effective programming.
• Inconsistent program from year to year.
• Staff turnover diluted program.
Lack of expertise – school (2)
• No effective accommodations, bullying,
failed to graduate.
• Nonverbal student with autism expelled
from school.
Lack of expertise – adult services
• No training on ASD
• No training on specific needs of individual
with ASD
• Inadequate staffing
• Safety issues
Health Care
• Lack of quality medical care
• Difficulty qualifying for Maine Care
(Medicaid)
• Medication issues
Case Management Problems
• Difficulty obtaining case manager
• Losing case manager
• Case manager with little understanding of
needs or services
Housing Issues
• Helped to find apartment but lost it
because of lack of support (moved home)
• Family had to sell house to buy a group
home.
• Temporary housing for year and a half
• No plan for housing after foster home
closed
Collaboration
• Schools and adult agencies are not talking
with each other.
• No one appears to take responsibility.*
Maine State Professional
Development Grant – Goal 5
• Maine DOE OSEP-funded five-year grant
• To increase the percentages of SAU
special education and related services
personnel who can develop and
implement effective, compliant transition
plans and activities within timelines (IDEA
Indicators B12, B13, and C8).
Confirmation
A Sampling of Government and Private Reports or Studies on
PDD and Employment/Transition Issues
•
32nd Institute on Rehabilitation Issues (2007) Rehabilitation of Individuals with
Autism Spectrum Disorders www.autisminfo.org/2007_employment_&_ASD_report.pdf - fffs
•
Autism Society of America (2004) “Life After High School.” Retrieved March 20,
2008 http://www.autismsociety.org/site/PageServer?pagename=about_lwa_highschool
•
Grandin, T. (1996) “Making the Transition from the World of School into the World of
Work.” Center for the Study of Autism website: Retrieved March 20, 2008
http://www.autism.org/temple/transition.html
•
Muller, Eve (2004) “Autism: Challenges Relating to Secondary Transition, NASOSE
Project Forum
•
Muller, Schuler, Burton & Yates (2003) Meeting the vocational support needs of
individuals with Asperger Syndrome and other autism spectrum disabilities. Journal
of Vocational Rehabilitation, 18, 163-175
•
Sullivan, R. (2001) “Position Paper on the National Crisis on Adult Services for
Individuals with Autism: A Call to Action.” San Diego, CA: Autism Society of America
•
Sicile-Kira, Chantal(2006) Adolescents on the Autism Spectrum. The Berkley
Publishing Group, New York
DOE
DHHS
2007 32nd Institute on Rehabilitation Issues,Spectrum Disorders,
Key Areas of Transition Planning 4
Communication
Considerations
Behavioral
Considerations
Medical and
Behavioral Health
Care
Nutritional Balance
Spiritual Health
Community
Post Secondary
Education and
Training
Employment
Living Arrangements
Recreation/Leisure
Opportunities
Physical Capacities
4. 2007, Rehabilitation Services Administration: 32nd Institute on Rehabilitation Issues,
Rehabilitation of Individuals with Autism Spectrum Disorders
DOL
Early Identification
Recent studies continue to document that early
identification and early intervention lead to better
outcomes for children with Autism and other
ASDs
July, 2009: Early identification, diagnosis, and intervention has
huge implications for the developmental outcome of children with
autism and other PDDs. We're seeing this in a very real way
through our follow-up study,
(Dr. Margot Prior, Melbourne La Trobe University, )
http://www.abc.net.au/news/stories/2009/07/23/2634744.htm
69
Moving Us Forward
Legislature – Motivation
Steering Group (State Ownership)
Bi-Annual Joint Meeting with:
• Commissioner DHHS
• Commissioner DOE
• Commissioner DOL
Moving Us Forward
Initial Plan: Develop and Implement
Standardized Screening and Referral
Process
 Medical Professionals discussed and agreed upon
Screening Tools and a Potential Referral Process
 State Commissioners approved pilot project
 Field Test of the Screening Tools (in 7 medical practices
– over 3,500 children screened)
 Took the Show on the Road (first tour)
State Implementation Grant for
Improving Services for
Children and Youth with ASD
3-Year Grant ~300K annually
Improve health outcomes by
identifying early, providing
effective, a coordinated
treatment, and a long term
comprehensive medical home.
So – Year 3? What have we done?
What are we going to do now?
Grant: Educate on Screening, First
Signs, Next Steps, & Supporting
Families
 Provide training on how to use the M-CHAT to screen
children for ASD
 Creation, by Developmental Pediatricians, Parents and Advocates, of
a DVD and supporting train-the-trainer curriculum
 Over 300 DVDs and train-the-trainer curriculum have been
distributed
 Over 170 Early Childhood Professionals attended train-thetrainer presentations
 Provide trainings to medical professionals

Over 150 Medical Practitioners received training on the Autism
Screening Tool through Grand Rounds
How Do We Know?
• 600% Increase of MaineCare Claims for Developmental
Screening Between 2009 and 2012.
But…
Contamination of Data
 MaineCare created Medicaid Codes
to pay for screenings
Type of Code
Code
Screening Tool
Amount
CPT
96110
ASQ/PEDS
$8.99
CPT
96110-HI
M-CHAT
$8.99
CPT
96111-HK
M-CHAT 2
$86.59
Grant: Expedite Identification and
Facilitate Treatment
 Develop streamlined protocols for referrals and
communication between diagnosticians and entry into
Maine’s early intervention system.
 Facilitating Autism Screening and Treatment Database




Data Entry Module Complete
Reporting Module in Process
Testing How to Connect with EMR to Eliminate Data Entry
Connect through IMMPACT II
Improve Capacity of Doctors
 Expand the capacity of general practitioner’s and Pediatricians to provide follow-up
care to children and youth with ASD.
 Contracted with Developmental Pediatricians to Develop Curriculum
 “The area of greatest impact was the striking increase in attendees’ ratings of their
own knowledge about all aspects of autism recognition and care. Prior to the
workshops they showed little confidence, rating themselves, on average, as having
little knowledge or being only familiar with all topics related to ASDs, whereas after the
workshops self-ratings of ‘knowledgeable’ or ‘very knowledgeable’ were given by the
majority for distinguishing the ASDs, providing medical treatment, and giving
behavioral guidance, and by almost half of attendees for educational advocacy.”
 Spread the Word – 10 more practices this year to receive training
 Create and post a web-based curriculum for PCP office staff about how to
accommodate and integrate children and youth with ASDs in their medical offices.
 In Progress
Improve Capacity of Doctors
 Focus Groups
 7 Specialists
 2 Adult Doctor
 2 Surveys
 37 Families (Mini online survey)
 78 Families (In Progress)
 21 Adults (In Progress
Sound Research
• 83 Questions – 3 Hour Interviews
• Controlled Tool Development and
Interview Protocol
• Family Agency Did Interviews
• DIFFERENT Evaluator
– 3 Level Qualitative Analysis, Complete
Quantitative Analysis
• Stay Tuned
Physician Input Regarding
Transitioning to Adult Health Care
 Barriers Identified
•
Physician knowledge of ASD
•
Cost of providing services
•
Need to fight for services
•
Fragmented care
•
Aging out of systems
•
The tendency for over medicating. (Psychiatrist) “What we see is
that they age out, and then where do they go? That is when I get
them. And they are on a ridiculous list of meds that we spend two
years trying to trim down!”
•
Most referrals to adult medical specialists come from the parents.
Three Pilots
 Conducted Two Quality Improvement Projects (in multiple locations)
linking developmental pediatricians and CDS sites. Evaluated
processes for referral and evaluation and field tested algorithm to
streamline evaluation and access to early intervention services.
 Implement the National Medical Home Autism Initiative
recommendations to provide enhanced care coordination services in
the medical home for children and youth with ASDs.
 HRSA funded project on Family-Centered Transition Planning
Project. Two State projects were done in collaboration with the
Maine Center for Community Inclusion and Disability Studies and
the University of New Hampshire’s Institute on Disability
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Making Change in Shifting Sand - Association of Maternal & Child