The process of reforming the country's health care system--a current focus of the Clinton White House--offers a short-lived window of opportunity for effecting long-term changes in services for children with disabilities and chronic illnesses. Advocates for children with special needs are taking advantage of every chance they get to make sure that the administration is aware of the unique health care challenges faced by these children and their families.
The administration is listening
In April, I represented the Association for the Care of Children's Health (ACCH) at a White House briefing on health care reform as it relates to children and youth. Other key organizations and programs, such as the Children's Defense Fund and the Association for Maternal and Child Health Programs, were also represented. At the briefing, members of the Administration's Health Care Task Force tried to provide us with "a sense of where this thing is going," then listened to our responses and suggestions.
Task force members emphasized the Clinton administration's commitment to assuring a comprehensive benefits package for all children while recognizing that a single benefit package will not be appropriate for every child. For example, some children may need additional services such as outreach, health care coordination and transportation. Task force representatives stressed that service financing and delivery must be "sensitive to the changing needs of children with special health care needs and disabilities." And, for the first time since the beginning of my involvement in the health care reform process, I heard an administration representative use the term "family involvement."
Basic benefits for all
As envisioned by the Clinton administration, health care reform should address issues of universal access, basic benefits, integrated service delivery, public accountability, medical liability reform, administrative cost reduction and anti-trust considerations. As anticipated, task force members describe "managed competition" as the basic framework for the developing plan. Managed competition involves the organization of the health care coverage system into "Health Alliances" and "Accountable Health Plans." Health Alliances are "super-sized purchasing cooperatives" which will represent large, diverse groups of enrollees in buying health insurance from Accountable Health Plans or "supersized HMOs." This system would link large numbers of individuals with networks of nearby medical facilities and providers. All health care plans would be required to offer a basic benefits package, with individuals having the opportunity to purchase benefits beyond this standard package. Certain special needs groups (e.g., children with disabilities) may qualify for a "long-term and communitybased care benefit."
While it is clear that the Clinton plan will go far beyond previous attempts to simply "fine-tune" the health care system, the degree to which it will comprehensively address the needs of children with disabilities or chronic iiinesses remains to be seen. Will the national benefits package provide for ongoing medical and developmental specialty needs such as physical therapy, occupational therapy, speech therapy and assistive devices? Will it allow for related family support services such as counseling, care coordination and transportation?
Working out the details
While the broad outline for reform receives widespread media coverage, parents, providers and advocates need to focus on the details that are relevant to children with special needs. Last April, I left the White House briefing with a gratifying sense that our concerns had been heard. But being heard is not enough. Some fundamental issues related to the needs of children with disabilities and chronic illnesses will require continual advocacy as the President's plan makes its way through Congress. The recent legislative defeat of President Clinton's first Childhood Immunization Initiative demonstrates that even obviously cost-effective children's health measures can be sacrificed to politics. …