Cerebral Palsy Help

We began our treatment of what can be done to help those with Cerebral Palsy here, citing from this paper, Preventing Secondary Conditions Associated with Spina Bifida or Cerebral Palsy Symposium  by Michael Marge. On the previous page, the article addresses a list of goals and activities to minimize any synergistic development of disability, from "disuse syndrome." The article continues with the topic of how health services are delivered to the Cerebral Palsy patient:

DELIVERY OF HEALTH CARE SERVICES

In order to deliver the second major activity of prevention, that is, effective and responsive health care services that may be necessary if we are to prevent secondary conditions in persons with spina bifida and cerebral palsy, there must be a single port of entry for the individual. In other words, there should be a one-stop health care facility in each community to which a person may go in order to receive all the necessary services, or at least some of the services and referrals to other health care facilities. Such care should continue from infancy throughout the natural life span of each person.

Health care must be continuous, coordinated, and comprehensive throughout life. At the present time it is difficult to find such holistic community-based programs for persons with severe disabilities. It seems logical to me that the spina bifida or cerebral palsy clinics in each community assume this responsibility. Another suggestion is to expand the role of the independent living centers to include the provision of continuous, coordinated, and comprehensive health care throughout a person's life.

MOVING PREVENTION FROM DREAM TO REALITY

If you accept my recommendation that we provide effective prevention services to people with spina bifida or cerebral palsy, then we need to look at ways of transforming the idea to a reality. There are several approaches I would like to recommend to each of you. The first is for the participants of this conference, especially persons with disabilities and their families, to support a resolution that asks President and Mrs. Clinton to include in their health reform plan a provision for continuous, coordinated, and comprehensive services for persons with severe disabilities managed through a single port of entry in each community. Any other plan for health care delivery will be unacceptable. If approaching the White House is considered ill-advised or insufficient, then take the resolution and the proceedings of this conference with its recommendations to U.S. Senator Tom Harkins and to U.S. Congressman Henry Waxman. I predict that they will receive the resolution and recommendations with great interest.

In any event, don't let these deliberations collect dust because of timidity about bringing them to the highest level in our government. The time has come to request-no demand-prevention services that reduce the risk for secondary conditions and provide the greatest measure of physical, mental, and social well-being throughout your lifetime. Let's call for A Healthy People 2000 for Americans with disabilities!

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