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Health care reform: getting to the heart of the matter.

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.

Most advocacy groups agree on the basic components necessary to a comprehensive health care plan to meet the needs of children with special needs and their families. ACCH has taken the position that health care reform must address the comprehensiveness and quality of services provided beyond purely medical or technical aspects of care. We are advocating for a family-centered approach to care that addresses the developmental and psychosocial needs of children and fosters parent-professional collaboration at all levels, ranging from the care of an individual child to program development/evaluation and policy formation. (A copy of Key Elements of Family-Centered Care, developed by ACCH's National Center for Family-Centered Care, is available through ACCH at no cost. Send a stamped, selfaddressed envelope to: ACCH/NCFCC, 7910 Woodmont Avenue, Suite 300, Bethesda, MD 20814.)

Family Voices, a national coalition of families of children with special needs, takes a similar position in calling for universal access: flexibility, comprehensive, coordinated community-based care, family-professional partnerships and an emphasis on the value of families within the health care system. (For more information about Family Voices write c/o P.O. Box 769, Algodones, NM 87001.)

Principles to guide reform

The National Maternal and Child Health Coalition--uniting such groups as the Association for the Care of Children's Health, Children's Defense Fund, March of Dimes Birth Defects Foundation, National Association of Child Advocates, National Association of Children's Hospitals and Related institutions, National Association of Developmental Disabilities Councils, National Easter Seal Society and National PTA--has developed Principles for Maternal and Child Health Care Reform. With respect to children with special needs, these principles call for the President's health care plan to:

* prohibit pre-existing condition exclusions and waiting periods;

* provide access to comprehensive services equivalent to those now available under Medicaid's Early Periodic Screening, Diagnosis and Treatment Program (EPSDT), covering a wide army of medical, developmental, and related support services;

* assure additional services such as case management, transportation, and home visits for certain groups;

* prohibit benefit caps which discriminate against children with special needs;

* provide resources for developing and maintaining quality specialty services for children with special needs;

* commit to the recruitment, training, placement, and retention of primary care providers and specialists to care for children with special needs;

* institute a system of needs assessment, quality assurance, and development and distribution of resources that provides for consumer input and review;

* prevent plans from shifting costs to families, particularly those with low incomes;

* ensure the continuation of a full range of services to those now eligible under rederally mandated programs such as Medicaid, until coverage is completely phased in under the new plan.

Any health reform package to emerge from the legislative process should be measured against the positions of these advocacy groups.

Grassroots support needed

A large base of grassroots advocacy support is necessary to ensure that legislators and policymakers are made aware of the need for timely passage of legislation that comprehensively addresses the needs of children and youth, including those with disabilities or chronic illnesses. Here are some important things that each of us can do:

1. Contact legislators. Make sure that your U.S. representative and senators, as well as your state legislators, know of your support for health care reform consistent with the principles stated in this article. You can reach the offices of your representative and senators by calling 202224-3121. You can also state your positions and ask questions at town meetings or other local events, engage in letter writing campaigns and write editorials.

2. Encourage organizations and groups within your area to support these principles. You might start with the health care provider that serves your child. To request a sign-on-reply form for the Principles for Maternal and Child Health Care Reform, your group may contact the National Association of Child Advocates (NACA), 1625 K Street, Suite 510, Washington, DC 20006.

3. Contact Family Voices to learn of your state's FV Coordinator or contact your state child advocacy organization (where one exists) to learn how you may benefit from their expertise and resources, and how they may benefit from your expertise, networks and personal stories (NACA can assist in locating your state organization).

4. Consider joining an advocacy and education organization such as ACCH. Membership in an advocacy organization includes you in a collective voice that will make a difference. As an ACCH member, for example, you will have ongoing access to invaluable resources and networks--at the national, state, local, and individual program and hospital levels--that promote health care policies and practices responsive to the needs of children and families. The mutual respect and caring that exists among ACCH multi-disciplinary professionals and family members along with a commitment to quality care across the continuum of disabilities and conditions are our greatest advocacy tools.

Regardless of the health care plan that will eventually be implemented at the national level, real change in the lives of children and families must occur in the states, cities, towns, and communities where they live. It is imperative, therefore, to continue our individual and collective local efforts to improve existing programs for children and families.

Yogi Berra once said, "The future is not what it used to be." He could have been speaking about the challenge we have been given to shape the future of health care in this country. This debate presents an opportunity for each of us to contribute to the future. Perhaps Hillary Rodham Clinton described our mission most aptly in a speech at the recent American Hospital Association's annual meeting-- "Health care reform is about reinstituting a sense of compassion and caring into our society."

William Sciarillo, Sc.D., has been the executive director of ACCH since 1992. In this capacity, he also serves as project director for several national grants which include the National Center for Family-Centered Care, the Family Centered HIV Project and the National Information Clearinghouse for Children with Disabilities and Life Threatening Conditions. He resides in Baltimore with his wife, Marycatherine Augustyn and daughter, Emily Sciarillo.
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Title Annotation:includes background on the Association for the Care of Childrens' Health; how would it effect the care of exceptional children
Author:Sciarillo, William
Publication:The Exceptional Parent
Date:Oct 1, 1993
Previous Article:A fine purpose.
Next Article:No Pity.

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