Background Brief Executive Summary
Screening for Special Health Care Needs
This background brief presents an overview of the status of early and continuous
screening of children for special health care needs in Maryland. This document was
developed as background material for the November 6th and 7th, 2008 Maryland
Community of Care for Children and Youth with Special Health Care Needs
Summit.
The federal Maternal and Child Health Bureau, together with its partners, has identified
six core outcomes as critical indicators of success in implementing community-based
systems of services for all children and youth with special health care needs (CYSHCN)
in accordance with Healthy People 2010 and the President’s New Freedom Initiative.
Using the Maternal and Child Health Bureau’s six core outcomes as a framework, the
Summit agenda focuses on information-sharing, problem-solving, and consensus
building around needed systems change for CYSHCN in Maryland. This background
brief relates to Core Outcome #4:
All children will be screened early and continuously for special health care needs
What is Screening?
Screening is the administration of a brief standardized test to help identify children at risk
of a disorder. Examples of common screening tests for children include newborn hearing
screening, developmental screening, and lead screening. In childhood, screening tests
are typically administered to all children at certain recommended times. Some screening
tests may also be administered more frequently to children when there are concerns
raised by families or providers. These concerns are often identified through surveillance,
which is a flexible, longitudinal, and cumulative process whereby knowledgeable health
care professionals identify children who may have problems. For children, both
surveillance and screening should occur as a routine part of regular preventive visits to
primary health care providers, including dentists. Recommendations for Preventive
Pediatric Health Care are published jointly by the American Academy of Pediatrics and
Bright Futures.
Why is Screening Important?
Screening is an important mechanism for the early identification of special health care
needs in children. Institution of early medical treatment and/or other therapeutic
interventions for children identified with certain disorders may prevent or lessen serious
health and developmental consequences, and early access to family support services
promotes the well-being of children and families. Early detection and intervention also
result in cost savings for health, educational, and social systems. For those children and
youth identified with special health care needs, ongoing screening can identify or prevent
secondary conditions that interfere with a child’s health, development, and well-being.
Who are Children and Youth with Special Health Care Needs?
The federal Maternal and Child Health Bureau defines CSHCN as those who have or are
at increased risk for chronic physical, developmental, behavioral, or emotional conditions
and who also require health and related services of a type or amount beyond that
Background Brief Executive Summary
Screening for Special Health Care Needs
required by children generally. An estimated 15.5% of Maryland children ages 0-17 have
special health care needs, corresponding to almost 217,000 children (National Survey of
CSHCN, 2005-06).
Early and Continuous Screening in Maryland – What Do We Know?
National Survey of CSHCN 2005-06
The National Survey of Children with Special Health Care Needs is a national telephone
survey that provides information about CYSHCN in all 50 states and the District of
Columbia. In each state, in-depth interviews were conducted with the parents of 750 to
850 CYSHCN. Data from the NS-CSHCN is used to monitor progress on the core
outcomes. Key findings related to early and continuous screening:
 Maryland ranked 15th among the states for success in Core Outcome #4;
 Black and Hispanic children, children less than age 5, uninsured children,
children in families with incomes less than 200% FPL, and those without a
medical home were least likely to report receiving early and continuous
screening.
The following are the indicators used to measure Core Outcome #4 on the NS-CSHCN:
Indicator
Core Outcome #4: CYSHCN ages 0-17 who are screened
early and continuously for special health care needs
CYSHCN who received any preventive medical care during
past 12 months
CYSHCN who received any preventive dental care in past 12
months
Maryland %
Nation %
65.7
63.8
79.3
77.1
76.8
78.5
Developmental Screening
National Survey of Children’s Health 2003
The National Survey of Children's Health is a national telephone survey that provides a
broad range of information about children's health and well-being in all 50 states and the
District of Columbia. In each state, in-depth interviews were conducted with the parents
of children under 18 years old. Between 1,480 - 2,240 surveys were completed per
state. Key findings related to developmental screening:
 Almost 47% of Maryland families of children ages 0-5 reported that they were not
asked by their providers if they had concerns about their child’s learning,
development, or behavior in the past year.
 While almost 80% of families with CSHCN were asked about these concerns,
less than 45% of families whose children did not have a special health care
needs were asked.
 Of those families who reported that they were highly concerned about their
child’s learning, development, or behavior, over 45% reported that they did not
get specific information from their doctors to address their concerns.
Other Data on Developmental Screening
Background Brief Executive Summary
Screening for Special Health Care Needs
In medical home focus groups held by the Maryland Chapter of the American Academy
of Pediatrics in 2005, many parent and professional participants felt that pediatric health
care providers are not performing thorough screening for developmental problems.
Issues raised were inappropriate or incomplete use of screening tests, amount of time
required to administer tests, and lack of reimbursement. Data from 2 different surveys of
Maryland pediatricians in 2004 and 2006 found that although the majority report using
some type of tool for developmental screening at least some of the time, tools with
acceptable levels of sensitivity and specificity were not being used routinely for
screening. Even when screening happens and concerns are identified, there may be
barriers to following up on these concerns. In the medical home focus groups, families
reported that some pediatricians seem to be reluctant to diagnose certain developmental
and mental health problems and may recommend taking a “wait and see” approach
rather than refer for specialist evaluation.
Other Screening
Newborn Screening
 Close to 100% of babies born in Maryland are screened yearly for over 50
serious disorders of body chemistry.
 In 2007, 94.2% of babies born in Maryland received hearing screening (75,577
babies). There were sixty-five infants subsequently identified with hearing loss on
diagnostic evaluation reported to the Maryland Early Hearing Detection and
Intervention Program.
Medicaid/EPSDT
 Depending upon MCO, between 76-85% of HealthChoice enrollees received 5 or
more well child visits by a primary care provider in the 1st 15 months of life (for
those who turned 15 months during 2004); the AAP recommends 6 well child
visits during the 1st 15 months of life.
 Depending upon MCO, 68-79% of HealthChoice enrollees turning 3-6 years old
received one or more well-child visits during 2004; the AAP recommends one per
year at these ages.
 Depending upon MCO, 46-59% of HealthChoice enrollees turning 12-21 years
old received one or more well-child visits during 2004; the AAP recommends one
per year at these ages.
 For children ages 0-20 years in 2007, the overall state EPSDT screening rate
was 91% based on Healthy Kids Program medical record reviews of the five
major components of EPSDT screening: health/developmental history, physical
exam, laboratory tests/risk assessments, immunizations, and health education.
o The screening rate ranged from a low of 78% for the laboratory tests/risk
assessment component to a high of 96% for the physical exam
component
Background Brief Executive Summary
Screening for Special Health Care Needs
Lead Screening
 In 2007, a total of 111,095 blood lead tests from 105,708 children 0-72 months
were received and processed by the Childhood Lead Registry. The overall blood
lead testing for children 0-72 months was 22.6% for 2007.
 In 2007, 45.3% of one-year-old children (35,686) and 33.6% of two-year-old
children (26,217) in Maryland received lead screening.
 Out of those children 0-72 months tested for lead statewide in 2007, 892 (0.8%)
were found to have blood lead level ≥10 μg/dL (prevalent cases) of whom 654
had their very first elevated blood lead test (incident cases) in 2007.
 In 2004, 49.2% of HealthChoice enrollees 12-23 months received lead testing, an
increase of 6 percentage points since 2004; the lead testing rate for those 24-35
months was 48.5%, and increase of 8 percentage points from 2001.
o In Baltimore City, an identified high-risk area, the HealthChoice lead
testing rate was to 60 percent for both age ranges in 2004
Hearing and Vision Screening
 In the 2005-06 school year, 242,933 Maryland students received vision screening
and 37,660 (15.5%) were referred for further evaluation.
 237,863 students received hearing screening and 7,214 (3%) were referred for
further evaluation.
Early and Continuous Screening in Maryland – What Are We Doing?
Developmental Screening Initiatives
Leadership and Policy
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The Office for Genetics and Children with Special Health Care Needs
(OGCSHCN) in the Maryland Department of Health and Mental Hygiene (DHMH)
is charged with implementing the national agenda and core outcomes for
CYSHCN, including early and continuous screening, in Maryland.
A Developmental Screening Advisory Group was convened in late 2006 to
oversee developmental screening initiatives within the state; this group is chaired
by the OGCSHCN, Medicaid/EPSDT, and the Maryland Chapter of the American
Academy of Pediatrics (AAP).
Maryland was one of 20 states selected to participate in the Assuring Better Child
Health and Development (ABCD) Screening Academy in 2007-08, sponsored by
the National Association for State Health Policy and the Commonwealth Fund.
Some key policy accomplishments from this project:
o The Maryland Healthy Kids (EPSDT) Provider Manual was updated to
reflect the current developmental screening recommendations of the
AAP;
o Lists of approved and recommended general developmental screening
tools were developed for the Healthy Kids Program;
Background Brief Executive Summary
Screening for Special Health Care Needs
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A uniform referral and feedback form for the Maryland Infants and
Toddlers Program was developed.
Maryland’s Early Childhood Comprehensive Systems Building Initiative, “Growing
Healthy Children,” provides leadership to improve Maryland’s early childhood
health system through collaboration with state agencies and other organizations
that administer programs for young children; one focus is on early identification
and access to services for young children with developmental and behavioral
problems.
Family and Provider Education and Training
 As part of the ABCD Screening Academy, three primary care pediatric practices
were trained and supported to successfully implement the use of standardized
developmental screening tools as a routine part of well child care, following the
recommendations of the AAP.
 The Baltimore City Health Department (BCHD), with support from OGCSHCN, is
working with a number of large pediatric primary care practice sites in Baltimore
City to implement the use of standardized developmental screening tools, and to
improve the process of referral and communication between providers and
BCHD programs that serve young children with special needs.
 In FY05, House Bill 579 established the Pilot Program to Study and Improve
Screening Practices for Autism Spectrum Disorders. The purpose of the pilot is to
assess screening practices for Autism Spectrum Disorders (ASD) in pediatric
health care practices, to train providers in the early detection of ASD and in
implementation of screening for ASD, and to facilitate access to health care and
early intervention services for children identified through screening. This project
is currently being conducted by the Center for the Promotion of Child
Development Through Primary Care.
Health Care Financing
 As a result of the ABCD Screening Academy, changes to Medicaid billing were
implemented as of July 1, 2008 that allow providers to receive reimbursement for
a maximum of 2 different standardized developmental screening tools for one
child on the same date of service.
Direct Services
 The Maryland State Department of Education and local jurisdictions operate
programs designed to identify children with problems impacting their
development and learning and provide a variety of services to meet their needs,
including the Maryland Infants and Toddlers Program and Child Find.
o The Maryland Infants and Toddlers Program provides services designed
to meet the developmental needs of children 0-3 with developmental
delay or at risk for a substantial delay. Services include identification and
evaluation, therapeutic intervention (PT, OT, speech/language, special
instruction), service coordination, and family support;
o Child Find/Preschool Special Education Services programs provide
special education services for children with disabilities ages 3 through 5 in
each local school system. Starting with the local school system Child Find
office, children can receive screening services to identify any areas of
concern for further assessment by a multidisciplinary team. A child
Background Brief Executive Summary
Screening for Special Health Care Needs
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determined to be eligible under one of the established disability eligibility
categories can receive special education and related services necessary
to support the child's development and educational program.
Judy Centers provide a comprehensive set of services for at-risk children birth
through age 5 and their families focused on achieving school readiness, including
identification of special needs and early intervention.
Each jurisdiction in Maryland has developed early childhood mental health
consultation services to assist child care centers and family day care providers to
successfully maintain children with significant behavioral needs in daycare
settings. Early childhood mental health consultation allows for early identification
of problem behaviors and referral for assessment and possible diagnosis, where
needed.
Other Screening Initiatives
Newborn Blood-spot Screening
Maryland has one of the most extensive population-based newborn dried blood-spot
screening programs in the nation, administered by DHMH. Currently, babies born in
Maryland are screened for over 50 serious disorders of body chemistry, including
disorders of amino acid metabolism, organic acid metabolism, fatty acid oxidation, and
the urea cycle; galactosemia, hypothyroidism, congenital adrenal hyperplasia, sickle cell
anemia, biotinidase deficiency, and cystic fibrosis. The OGCSHCN operates the medical
arm of newborn blood-spot screening program, providing follow-up to ensure that babies
with abnormal test results receive appropriate diagnostic evaluation, and that those with
confirmed disorders receive appropriate care. This follow-up is coordinated with the
child’s medical home and with the state-designated metabolic centers. Policies
pertaining to the detection and management of hereditary disorders are set by the
Advisory Council on Hereditary and Congenital Disorders. Newborn blood-spot
screening is a state mandated program.
Infant Hearing Screening
Hearing screening legislation for Maryland newborns was enacted in 2000 which
established the Maryland Early Hearing Detection and Intervention Program (MD EHDI).
Administered by the OGCSHCN, the MD EHDI works to promote universal newborn
hearing screening; develop effective tracking and follow-up as a part of the public health
system; promote appropriate and timely diagnosis of the hearing loss and prompt
enrollment in appropriate Early Intervention; link newborns to a medical home; and
eliminate geographic and financial barriers to service access.
EPSDT
Early and Periodic Screening, Diagnosis and Treatment (EPSDT)/Maryland Healthy Kids
is a state mandated program that provides screening, diagnosis and all "medically
necessary" treatment services to all Medicaid recipients under 21 years of age. The
preventive health care services including a variety of screenings required through
EPSDT allow for early identification and treatment of health problems before they
become medically complex and costly to treat. Standards for the Healthy Kids Program
are developed through collaboration with key stakeholders such as the DHMH Family
Health Administration, the Maryland Chapter of the AAP, the University of Maryland
Dental School, and the Maryland Department of the Environment.
Background Brief Executive Summary
Screening for Special Health Care Needs
Lead Screening
The Maryland Childhood Lead Screening program in the Center for Maternal and Child
Health in DHMH strives to reduce lead exposure in children under age 6 years by
promoting lead screening and raising awareness in communities. The Program has
developed a plan for identifying areas of the state at risk for childhood lead exposure or
elevated blood lead levels. As a result of Maryland’s plan, there has been a statewide
law requiring blood lead screening in identified risk areas and a Baltimore City testing
ordinance. The Childhood Lead Screening Program works closely with community
partners and government agencies to help assure adequate screening of children living
in high risk areas. The Maryland Department of the Environment’s statewide Childhood
Lead Registry (CLR) performs childhood blood lead surveillance for Maryland. The CLR
receives the reports of all blood lead tests done on Maryland children 0-18 years of age,
and the CLR provides blood lead test results to DHMH including Medicaid and local
health departments as needed for case management and planning.
Hearing and Vision Screening
Hearing and vision screening is mandated for all students in Maryland public schools
and in certain non-public schools. This screening is the responsibility of the local board
of education or local health department. Unless evidence is presented that a student has
been tested within the past year, the screenings are required to be given in the year that
a student enters a school system, enters the first grade, and enters the eighth or ninth
grade. When a student fails a screening, there is parental notification and
recommendations for further evaluation in order to diagnose a potential hearing or vision
problem.
Dental Screening
Head Start centers have a federal mandate to provide an oral health assessment within
90 days of enrollment for all children. The Office of Oral Health in DHMH provides
funding that supports screenings for Head Start children. Children
identified as having oral health needs received assistance in obtaining dental services.
What Do We NOT Know About the Status of Screening in Maryland?
 What resources will be needed for widespread implementation of new
recommendations for screening such as routine use of standardized
developmental screening tools?
 Are health care providers screening children for mental health disorders?
 How are privately insured children faring in regards to recommended
screenings?
 What can be done to improve screening in older children?
To Be Discussed in Summit Work Groups
What is missing, i.e. did we miss major data or activities?
Assessment of current status: where is Maryland in regards to early and continuous
screening and what are the challenges to progress?
Background Brief Executive Summary
Screening for Special Health Care Needs
What are Maryland’s strengths and opportunities for improvement?
Recommendations for action strategies