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Health care reform: we must all play a role.

Last March I was pleased to represent The Arc at a conference sponsored by the Robert Wood Johnson Foundation at George Washington University in Washington, D.C. Hillary Rodham Clinton was unable to chair the conference due to the illness of her father, but she was represented by Tipper Gore. Also present was Donna Shalala, Secretary, Department of Health and Human Services.

I, like The Arc and many of its members, have been following our country's efforts in health care reform. It is sobering to learn that we are spending more than 12 percent of our gross national product on health care and projections are that by the year 2000, these costs could approach 17 to 20 percent. A representative of the auto industry told us that employee health care adds $1,400 to the cost of producing a car in the United States, compared to $500 in Japan.

Even though we are making this tremendous financial effort, as many as 37 million Americans have no health insurance. Additionally, one out of five children has not had a polio shot and one out of three has not seen a dentist. We learned that the only countries in the Western Hemisphere having a lower child vaccination rate than the U.S. were Haiti and Bolivia.

So what does all this mean? First, we all should realize that there is a gigantic effort taking place to rebuild and reorganize the nation's total health care delivery system. People are talking about a "seamless system" that reaches out to everyone, and almost daily we read in our newspapers or hear on radio or television about someone discussing "the best way" to achieve it.

One problem is that different terms are used in these discussions and some terms often have different meanings depending on who is speaking. This can be very confusing for many of us.

The Arc has been working with the Consortium for Citizens with Disabilities (CCD) to develop principles we can use to measure the effectiveness of any health care reform proposal. This set of principles gives us a tool to use when we examine the suggestions of different individuals and groups.

Each of us needs to communicate our support of these principles to our federal and state legislators as they consider the direction of each state and the country as a whole. If we sit back and wait, we may find that the 7 million Americans with mental retardation will not have the health coverage that they need.

With that in mind, I want to cite and underscore these principles. It is useful to keep them in mind as we follow private and public as well as state and federal proposals for health care reform.

Nondiscrimination: All people with mental retardation and other disabilities and their families must be able to fully participate in the nation's health care system. Everyone, regardless of their income, employment, health or disability status must be ensured medically necessary services.

Appropriate: People with disabilities and their families must receive quality and comprehensive health care services including rehabilitation and personal services based on individual need, preference and choice. Also, people must be included in policy making, have a voice in choosing their doctor and have access to effective grievance and due process procedures.

Comprehensive: The system must provide a comprehensive array of services spanning all service categories and sites of service delivery including, for example, preventive acute care, rehabilitation, long-term services, prescription drugs, durable medical equipment and assistive devices.

Efficiency: This system should be designed to provide services with a minimum of administrative waste and duplication.

Equity: People with disabilities and their families must not continue to be burdened with disproportionate health care costs.

In short, while our nation is working to redesign our health care program, The Arc and our friends and colleagues in the disability community must work together to ensure: that people with mental retardation and their families are included; that the right services are available; that those services can be obtained; that the system is efficient; and that the cost is not an unfair burden.

Nationally, The Arc is playing a major role in efforts to reform our health care system. We continue to participate in meetings with the Clinton Health Reform Task Force to emphasize the disability perspective in acute care, long-term care and personal assistance services. At the same time, The Arc continues an ongoing education and outreach effort to Congress since the next step will be presentation of the Clinton plan to that body.

This is where we must all play a role. A major change in America's health care system is on the way. All of us must become actively involved to ensure that these changes meet the needs of all people with disabilities. I encourage all of you to let those involved in the redesign of our health care system know about our principles and your support of them. If we wait, we may be too late.

The Arc is the nation's largest volunteer organization dedicated solely to issues of mental retardation. In addition to improving the lives of children and adults with mental retardation and their families, The Arc works to prevent the condition in infants and young children.

Founded in 1950, the organization currently has 140,000 members working through 1,200 chapters in the United States.

David J. Dunn joined The Arc in 1961 after the births of a niece and a nephew with PKU. He currently serves on the Board of Directors and PACTT Committee (technology training for people with developmental disabilities) of his local chapter, Arc of Olmsted County in Rochester, Minn. Dunn has also been a member of other chapters of The Arc in Florida, Connecticut and South Dakota. He has served on many committees and as president and vice president of Arc in Minnesota. Retired from IBM, Dunn is president of D.J. Dunn and Associates, a management and leadership training firm. He is also adjunct assistant professor at St. Mary's University and teaches at the University of St. Thomas and the University of Minnesota.
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Author:Dunn, David
Publication:The Exceptional Parent
Date:Jul 1, 1993
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