Editorial report: health care reform.

Since its introduction in September, we have reported regularly on the progress of President Clinton's health care reform proposal. We have received many letters urging us to continue these reports. We also have heard from a number of parents who shared their concerns--based on various reports--that children with disabilities may be shortchanged under the currently proposed plan. In December, for example, the Associated Press reported on a hearing during which members of the Senate Finance Committee had acknowledged that children with "birth defects or chronic health problems could be excluded from coverage under President Clinton's plan..."

In reviewing the following reports and commentaries, it is essential to remember that--despite perceived inadequacies-the President's proposal offers major reforms that vastly improve many aspects of the current health care system.

Current concerns

Two specific gaps in coverage for children with disabilities have been identified---outpatient rehabilitation services and "customized" durable medical equipment. The proposal's coverage for outpatient rehabilitation services emphasizes the restoration of physical or intellectual functioning following "illness or injury." Accordingly, it appears to omit long-term, outpatient services that many children with disabilities require to maintain current abilities and prevent future problems. Such outpatient services might include physical therapy, occupational therapy and speech and language therapy. Administration officials agree that this is an issue and have urged concerned citizens to contact members of Congress to advocate for the necessary coverage.

"Durable medical equipment" includes seating systems, wheelchairs and many other products. The health reform plan appears to cover "durable medical equipment" and "prosthetic and orthotic devices," while "customized devices" are excluded. Limiting coverage to "off-the-shelf" equipment presents a problem since devices for children are often customized--or individualized. Current health insurance coverage typically has similar limitations requiring parents to pay the difference in cost between the "generic" and "customized" versions of a product. This difference in cost, however, can be substantial.

Knowledgeable advocates have raised additional questions about how other services for children with disabilities will be covered. These include Medicaid payments for early intervention services, so-called "related services" such as therapies within special education programs, and EPSDT (Early and Periodic Screening, Diagnosis and Treatment) services. Concerns have also been raised about coverage for home care and community-based services for people with severe disabilities. Though the reform proposal includes some important services of this kind, it allows individual states to place restrictions on eligibility and types of services provided.

Write Now ! This month's coverage of health care reform includes our adaptation of a recent call to action prepared by the Consortium of Citizens with Disabilities. We also bring you the personal story of a Virginia family that was forced into bankruptcy by health care costs. We asked Larry Allen to share his family's story because it is all too typical of the health care horror stories that could be written by many families of children (or adults) with disabilities. Anne Lauritzen tells a similarly frightening story in the Informational Forum on page 42. The National Parent Network on Disabilities also urges everyone to get involved (see page 41).

We urge our readers is to make contact with their representatives in Congress. Do not hold back! Parents of children with disabilities and many dedicated advocates are struggling against the vast resources of those in our society who prefer the status quo.

In fact, we believe that it is time for our elected officials to receive letters from the most important individuals involved--children with disabilities and special health care needs. Though most parents and organizations are understandably cautious about involving their children in public advocacy campaigns, we believe that letters from children as well as parents are needed to sufficiently dramatize the urgency of reform in health care for all individuals with disabilities. We hope our readers will encourage their children to write such letters and will send copies to us so that we may publish some in future issues of Exceptional Parent.

Remember--just a few months ago, the "Brady Bill" was facing imminent defeat in Congress. A dramatic groundswell from everyday citizens turned the tide--the "Brady Bill" is now law. The health care reform proposals before Congress are vulnerable. The administration and members of Congress from both political parties are under enormous pressure to "settle for less." This pressure is very powerful--but not insurmountable.

Health Care Taxes

Any discussion of taxes makes elected officials and many citizens very anxious. It may well be necessary to address the need for additional tax revenues to pay for the critical changes in health care that are needed by children and adults with disabilities. However, we believe that the actual net cost to each family for health care--including current health insurance premiums, actual health care expenses which are not covered and possible health care taxes that may be required--may not increase. In addition, we believe that the health security that President Clinton proposes will greatly decrease the ever-present fear hanging over the heads of most Americans--what if a member of my family needs health care and it isn't covered? Think of it--this may be the decade when w-e will put aside our fears of both nuclear annihilation and catastrophic health needs! The load off our minds could do wonders for our health.