Services for Children with Special Health Care Needs are Fragmented in New York; Conference Thursday to Explore System-wide Improvements

NEW YORK CITY, Jan. 6 ??? The New York Academy of Medicine will host a conference on Thursday, Jan. 8 to examine the dangerously fragmented health care system that serves more than half a million children with special health care needs in New York State.

Leaders in pediatrics and child health policy will explore proposals for making the system more navigable for these children and their families, and parents of special-needs children will share their stories of personal hardship. The conference is sponsored by the Academy's New York Forum for Child Health, and co-sponsored by the American Academy of Pediatrics--District II and The Children's Aid Society.

???Families and providers are unnecessarily burdened by a fragmented health care system,??? said Tamar Bauer, J.D., Director of the Academy???s Forum for Child Health. ???New York can do better for these children and their families.???

New York State has invested significant resources in recent decades to create health care programs for children with special health care needs, who require ongoing medical treatment and other services. But the system is still lacking. ???Many families and providers alike say they face major difficulty navigating between programs and getting needed care because the programs are hard to access, gaps in care exist, and there are long waiting lists for some programs,??? said Ruth E.K. Stein, M.D., Chair of the Forum. Contradictory program rules, confusion over eligibility criteria and insurance coverage limitations are among the barriers that lead the system to fail many who desperately need it.

The lack of overall coordination between the myriad programs serving these children leaves many without services to which they are entitled. Approximately 585,000 children in New York State and millions of children across the country have special health care needs. Because of their chronic physical, developmental, behavioral or emotional impairments, they need medical care and other services beyond what the average child requires. "New York???s patchwork of programs is a maze that only those with fortitude, patience, time and cunning can get through," Bauer said. Bauer is lead author of a new report entitled "Children with Special Health Care Needs: Next Steps for New York," an analysis chronicling New York???s shortcomings in meeting these children???s health needs. The report calls for policy-level changes in New York State, outlined below, that will create a more coordinated approach and make it easier for families and health care providers to access services. The Forum for Child Health is convening Thursday???s conference to focus attention on the need for reform.

Children with special needs have a wide array of conditions, ranging from asthma to leukemia to diabetes to developmental disabilities and motor impairments. Such children may require speech, physical or occupational therapy several times a week, long or intermittent hospital stays, assistance taking medication throughout the day, close supervision at home, and/or special accommodations in school. The report provides detailed information about benefits and eligibility for the following major public programs that currently serve children with special health needs in New York State: Medicaid, Child Health Plus, the Physically Handicapped Children's Program, the Early Intervention Program (for newborns to three-year-olds), the Three to Five Program (for three- to five-year-olds) and the School-Based Health Services Program (school-age children). In the new report, Bauer and colleagues offer three recommendations for creating a more coordinated health-care delivery approach for special needs children:

• Create a wrap-around services benefit to cover all services needed by children who meet certain functionality criteria. Wrap-around benefits should include diagnosis and treatment not covered by insurance, medical equipment and supplies, transportation to medical appointments, in-home safety modifications, respite care, translation services and more.
  
• Offer care coordination to all children who request it and meet the program???s criteria. This could range from phone-based information and referrals, to family support, to intensive face-to-face coordination. Each family would have only one care coordinator at a time, regardless of the number of public programs that a child was enrolled in.
  
• Develop a focused effort to offer a ???medical home??? to all children with special needs so that one doctor coordinates their care plan and keeps central records from childhood through adulthood. Providers should be paid a small monthly fee or receive an enhanced reimbursement rate as incentive to serve as medical homes for special-needs patients, the report recommends.
  

While new funding will be needed to support some of the recommendations, others (like care coordination) could save money by creating a more efficient system, eliminating overlaps in care, and reducing unnecessary hospitalizations, said Philip Coltoff, Chief Executive Officer of The Children???s Aid Society. ???We urge New York???s health care leaders to make these system-wide reforms, which will help families provide healthier lives for up to half a million children in the state,??? Coltoff said.

The New York Academy of Medicine is located at 1216 Fifth Ave. (at 103rd Street). The Academy is a non-profit institution founded in 1847 that is dedicated to enhancing the health of the public through research, education and advocacy, with a particular focus on urban populations, especially the disadvantaged.

Posted on January 6, 2004

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Contact:
Andrew J. Martin
Director of Communications
The New York Academy of Medicine
1216 Fifth Avenue
New York, New York 10029
212-822-7285
amartin@nyam.org

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