Background Brief Executive Summary

Screening for Special Health Care Needs (Post Summit)

This background brief presents an overview of the status of early and continuous screeningof 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 AmericanAcademy 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 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 ranked15thamong 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 / Maryland % / Nation %
Core Outcome #4: CYSHCN ages 0-17 who are screened early and continuously for special health care needs / 65.7 / 63.8
CYSHCN who received any preventive medical care during past 12 months / 79.3 / 77.1
CYSHCN who received any preventive dental care in past 12 months / 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 Marylandfamilies 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

In medical home focus groups held by the Maryland Chapter of the AmericanAcademy 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 Marylandare 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.
  • 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

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.
  • In BaltimoreCity, 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

  • 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 AmericanAcademy of Pediatrics (AAP).
  • Maryland was one of 20 states selected to participate in the Assuring Better Child Health and Development (ABCD) ScreeningAcademy in 2007-08, sponsored by the National Association for State Health Policy and the Commonwealth Fund. Some key policy accomplishments from this project:
  • The Maryland Healthy Kids (EPSDT) Provider Manual was updated to reflect the current developmental screening recommendations of the AAP;
  • Lists of approved and recommended general developmental screening tools were developed for the Healthy Kids Program;
  • 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 ABCDScreeningAcademy, 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 BaltimoreCity 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.
  • The Maryland Infants and Toddlers Programprovides 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;
  • 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 determined to be eligible underone of the established disability eligibility categories can receive special education and related services necessary to support the child's development and educational program.
  • JudyCenters 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 (MDEHDI). 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.

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