Impact Feature Issue on Enhancing Quality and Coordination of Health Care for Persons with Chronic Illness and/or Disabilities

Children with Special Needs: Integrating Health Care and Family Support


Margaret Fisk Mastal is Director of Special Projects with Delmarva Foundation, District of Columbia, Washington, D.C.

All children are vulnerable – their lives, health and welfare dependent on others. However, children with special needs, particularly in the Medicaid system, are at critical risk, their defenselessness at times reaching toxic levels. This high risk stems from absent or minimal coordination of care resulting from a confluence of factors that may include inexperienced and/or ill-prepared provider systems, state programs and funding streams that do not support holistic health and life care, and complicated family and home environments. For children with special needs, quality health care is particularly critical, but their welfare also requires integrated supports for their families as well.

Inadequately Prepared Provider Systems

The adequacy of provider systems is frequently dependent on geographic location, the availability of appropriate specialist care and community services, and providers’ insights into the multiple health, family, and life needs of children with special needs. Rural areas often lack the diverse types of specialist care needed, with those that are available often at great distances; transportation to receive even basic care frequently poses a distinct challenge.

Health care provider systems are not always expert in treating children with disabilities, nor are they sensitive to the impact of the tangled complexity of these children’s health, developmental, psychosocial, educational, and functional life needs. Provider systems for children with special needs would also benefit from supports – care coordination professionals to support and enhance their ability to provide quality health and life care.

State Programs

While many states have some type of program for children with special needs, most of these programs are constrained by tight Medicaid budgets and by the inexperience of the industry in designing programs that coordinate health and life care services to holistically meet the needs of the child/family unit. Coordinated care for this population is often haphazardly achieved due to ineffective systems. For example, some of a child’s problems such as mental health needs are carved out of the coordination process or, in some cases, are addressed by multiple agencies with their own agendas and funding streams, staffed by a variety of professionals who have little communication with each other. The result is fragmentation and/or duplication of benefits with critical elements of care often overlooked, poorer child health and functional states than need be, and providers, caregivers and payers who are frustrated.

Family Needs

The families of children with special needs who receive health care supports funded through Medicaid have not only the child’s disability with which to contend, but often have other family needs, as well. Parents are often unschooled about navigating the complexity of health and social agencies necessary for the child to reach optimal health, and need assistance with that process. In some families, children may reside with a grandparent, other family member, or a guardian, or reside in a foster home as the parent is absent, incarcerated, ill, or has a mental health and/or substance abuse problem. These caregivers often require support in securing the benefits that serve their child best, as well as supports for the caregivers and the family as a whole.

What’s the Answer?

There’s no magic prescription that will solve every state’s, provider’s, family’s or child’s problems. But there are programs that are making a difference. Care coordination programs focusing on improving the health and life of children with special needs have developed strategies that improve the status quo. Hallmarks of these programs include:

  • Providers, care coordinators, and state agencies who are intensely committed to maintaining the child in the community, including the family in all decisions and options, and supplying benefits unique to the individual child’s needs.
  • A central care coordination agency with a child/family centered approach that have integrated, expert teams that formally plan health and life care.
  • Consistent communication among the provider community, the family, and care coordination organization.
  • Integrated funding streams.
  • Databases that provide useful information.
  • Planned health care quality assurance and improvement strategies.

Barriers to optimal health, function and life are formidable for children with special needs. Yet, coordinating and providing the best care to each individual child is within our grasp – not easily or quickly achieved, but well within the realm of possibility. It will take planning, commitment and the judicious use of available dollars to make it happen.