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Health care reform - write now.

Health care reform is a central issue for everyone concerned with the lives of children and adults with disabilities. It would be a tragedy if only one child was denied needed health care or only one family forced into bankruptcy trying to pay for uninsured health care. But we know all too well that there are thousands of such tragic stories. That is why this editorial, like William Sciarillo's fine article in this issue, urges readers to take an active role in the health care reform process.

We have spoken with a number of people with disabilities, parents and professionals who have been invited to share their views on health care reform with the President's task force. All have come away greatly impressed by the breadth and depth of knowledge, willingness to listen and compassion shown by Mrs. Clinton, Mrs. Gore, the President, the Vice President and various task force staff.

By the time our thousands of readers receive this issue of Exceptional Parent, the details of the President's health care reform package will have been released. Health care reform will be the topic of much debate in Congress, in the media and among thoughtful, caring citizens across the country. "Special interest" groups will be hard at work lobbying for or against specific features of the plan while ordinary Americans try to figure out how the reforms might affect their day-to-day lives.

The reform process offers parents, people with disabilities and advocates an historic opportunity to be heard and to make a difference. We need to tell our stories to everyone who will listen. Our friends, neighbors, fellow voters and local and national elected officials need to hear about:

* the pain and hardship caused by existing programs that exclude children with disabilities from health insurance coverage or exclude entire families from group insurance programs because one family member has a disability;

* the anguish of being trapped in a job or geographic location because changing jobs means losing health insurance;

* the frustration of being forced to accept low cost, generic products (wheelchairs, communication devices, etc.) or services--and these often obtained only after hours and hours of paperwork and telephone calls-- because health insurance providers refuse to pay for more appropriate, specialized products and services;

* the stress of living with fear of financial disaster knowing that needed health care is not covered by existing insurance plans.

Many Americans still do not understand the critical need for change in the current health care "non-system." Telling our stories can make a difference. When our stories are told, I believe that the majority of Americans will agree that major changes must be made.

Our fellow citizens must also be educated about the differences between short-term and long-term costs. Historically, this message has been difficult to communicate. Many Americans fail to realize that investing in a child's needs today can mean vast savings in the future. We must find ways to explain that many health problems experienced by people with disabilties could have been prevented by appropriate intervention. The purchase of a specialized mobility aid or specialized care today can result in large monetary savings in the future. Pay now... or pay more later.

It is up to each of us to examine the President's specific proposals, and to decide where we stand on each component. Exceptional Parent will strive to present further details and informed commentary in the months to come. It is not our purpose now to take a position on any one aspect of health care reform. The point of this editorial is to encourage every parent and advocate to speak out now, to educate people about the need for change. Too many children and families have been abused for far too long.

Just a few short years ago, adults and children around the world worried about the very real possibility of nuclear war. Today, despite a number of terrible geopolitical disputes, our fears of global nuclear annihilation have largely dissipated. Why? Because real people had the boldness to speak out and the courage to choose a new course. And they brought about incredible changes.

Members of Congress do read their mail. What if all the readers of Exceptional Parent sent a letter to their legislators specifically explaining how health care reform could change their lives and the lives of their children? Be assured, our elected officials would take notice and respond constructively. And suppose each of our readers were brave enough to call a talk show, write a letter to the editor of a local newspaper or speak out about health care reform in some other public forum. With real stories from real people, public support for major changes would intensify.

The President has presented his proposals. Some resist change because they fear the unknown. But we believe that most Americans, including most health care providers, know that our health care programs are not working effectively for many citizens and that the situation is worsening with each day. With or without our involvement in the process, changes are inevitable. By choosing to

be involved, we can determine the form such changes will take. Let us resolve today that we will take every possible action to ensure that these changes respond to the needs of children with disabilities and their families.
COPYRIGHT 1993 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1993 Gale, Cengage Learning. All rights reserved.

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Title Annotation:how it would affect the lives of exceptional children and their parents
Author:Klen, Stanley D.; Schive, Kim
Publication:The Exceptional Parent
Article Type:Editorial
Date:Oct 1, 1993
Previous Article:Developing your own I(L)EP.
Next Article:Purchasing a hearing aid.

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