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Caring For Individuals with Chronic Disabilities in an Aging Society

By: David Seaton

Chronic disability is an unremitting force for millions of families in America. With advances in medical technology, many individuals have survived conditions once fatal. They are not, however, left unscathed.

Simultaneously, our social services have not kept pace with the needs of this growing population of individuals.

When an individual is severely disabled it forces a revision of many life plans and expectations as the family reorganizes itself around the disability. For millions of families the parents remain the primary caretakers as the non-disabled siblings grow up, move out, go on with their lives, and become peripherally involved with their disabled family.

The US General Accounting Office (GAO/HEHS 95-26, (Long-Term Care: Diverse, Growing Population Includes Millions of Americans of All Ages) reported approximately 80% of home care services are provided by family caregivers. In addition, for millions of individuals with chronic disabilities, the primary caretaker are their aging parents, who will soon need their own caretakers.

We are losing one of the most valuable, effective, and affordable parts of our healthcare delivery system…parents. Not only can they often provide much better care than can be purchased, but also a much better overall living environment. The value of the services family caregivers provide for “free” is estimated to be $257 billion per year. What remains largely under-appreciated by our society is the significant role the family serves as the primary caregiver for individuals with severe disabilities.

This sociological phenomenon has resulted a much greater demand on public social services to provide long-term care, at a time of diminishing government funding and resources. In addition, a tremendous burden has now been placed on the “second generation” caregivers: siblings who must simultaneously address the needs of their aging parents and disabled sibling.

It is clear the current health care and social service systems are not prepared to cope with the challenges that chronic care presents to our society. New public policies and innovative service delivery systems are desperately needed. Our current bureaucratic, fragmented service delivery system significantly limits services and resources to individuals with chronic disabilities and their families. While this system may achieve the goal of containing expenses on a short-term basis, it’s proving to be inefficient and ineffective in addressing the issues related to addressing the growing chronic care population in America

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