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The Pepper Commission on long-term health care.

The Pepper Commission Report will be available from the U.S. Government Printing Office, Superintendent of Documents, Washington, D.C. 20401, (202) 783-3238 and at some public libraries. Readers can also contact The Pepper Commission (140 Cannon House Building, Washington, D.C. 20515, (202) 225-9950; Fax (202) 225-6653) for more information.

The U.S. Bipartisan Commission on Comprehensive Health Care, named in honor of the late Rep. Claude Pepper of Florida and headed by Senator John D. Rockefeller IV (West Virginia), issued its recommendations for solutions to our nation's health care crisis in March. The complete report is expected to be released after Labor Day.

Word from Washington, a publication of United Cerebral Palsy Association's Governmental Affairs Office, summarized the recommendations in its April/May issue noting: "Recommendations are based on their decision to structure a health care program built on the current health care system instead of replacing what is currently in place... for all employment-based health insurance. No pre-existing condition exclusions; no denial of coverage for any individuals in the group."

Word from Washington "commends the Commission for proposing a comprehensive solution to the nation's health care crisis that extends beyond the piecemeal approach that has been the distressing trend in Congress...

[They] fail to address the numb problem faced by the majority of families with disabilities and chronic conditions that of adequacy of coverage...

Exclusion of physical, speech and occupational therapy, durable medical equipment, assistive devices, personal assistance services, and disposable medical supplies from the definition of basic health care would mean continued high personal expense or reliance on public assistance and/ or institutional care. The excluded services are essential..."

The following material on long-term care is excerpted from the Pepper Commission Report.

WHAT IS LONG-TERM CARE? "`Long-term care' refers to a wide array of medical and personal services needed by individuals who have lost some capacity for self-care because of a chronic illness or condition. These services range from skilled and therapeutic care for the treatment and management of chronic conditions to assistance with basic activities and routines of daily living, such as bathing, dressing, meal preparation and housekeeping. Services can be provided in a variety of settings...

The need for long-term care is usually measured by an individual's incapacity to manage tasks of daily living. These include basic human functions which people do habitually and universally (called activities of daily living, or ADL's), such as eating, getting in or out of bed, using the toilet, bathing and dressing. They also include activities necessary to remain independent (known as instrumental activities of daily living, or IADL's), which include housekeeping, meal preparation, grocery shopping, financial management and taking medication. Limitations in ADL's and IADL's are particularly useful measures of the need for long-term care because they are not tied to specific diagnoses and are good predictors of service needs..."


"Because ADL and IADL limitations are not considered appropriate measures of disability for young children, it is difficult to draw comparable estimates of the need for long-term care for this population. However, as many as one million children may suffer from chronic illnesses which necessitate long-term care. Only a fraction of these children - 174,000 - need assistance with one or more ADL'S; 31,000 require help with two or more ADL'S.

Most disabled children need long-term care that requires low technology. However, the Office of Technology Assessment (1987) recently estimated that an important subset of chronically disabled children depend on life-sustaining medical technology. The number of children ... is under 17,000 when limited to ventilator assistance, prolonged intravenous drugs or other device-based respiratory or nutritional support, but increases significantly to over 45,000 when other technologies, such as apnea monitoring or renal dialysis, are included.

Although the number of children in need of long-term care assistance is low compared with adults, there is evidence that the number and proportion of chronically disabled children have more than doubled over the last 25 years ... explanations include changes in data collection procedures, increased survivorship of low birthweight children, greater longevity for children with terminal chronic illness, and earlier detection...

But unlike major medical expenses, Americans lack adequate public or private insurance coverage to limit the financial burden. Public coverage has focused primarily on institutional care."

PRIVATE FINANCING. "Private long-term care insurance is not an option; insurers do not sell policies to persons who are already impaired... insurers have not marketed long-term care insurance policies to young adults and children."

ROLE OF FAMILY. "Public financing for home and community-based, long-term care is quite limited... Families... provide the bulk of long-term care..."

MEDICAID. "Medicaid allows states to cover skilled-level home and community-based, long-term care for low-income disabled persons through its mandatory home health benefit. There also is an optional personal care program which requires physician certification and nurse supervision...

In addition, the Medicaid 2176 Waiver Program allows states to waive the usual Medicaid requirements, including broadening the array of services offered (e.g., homemaker/home health aide, adult day care, respite care, case management), liberalizing income eligibility for parents of eligible children, and providing services only to certain populations. States must demonstrate that recipients would otherwise require the level of care provided in a hospital, skilled nursing facility, intermediate care facility, or intermediate care facility for the mentally retarded. Average per capita expenditures spent on home and community-based care services under a waiver cannot exceed what would have been spent under Medicaid without the waiver. While the program has grown since its inception in 1981, the 2176 waiver serves a small proportion of the disabled population in the community... In 1986, 31 states had waiver programs serving 23,050 developmentally disabled persons.

Some disabled children may not qualify for Medicaid because the income and resources of their parents are "deemed" to be available to them... These children may qualify for Medicaid, however, if they have been institutionalized for at least one month. After this period, the parents' income and assets are not considered in determining eligibility. These regulations present barriers to families who would prefer to keep their disabled children at home. While the 2176 waiver program is designed to reduce this barrier, only two states had waiver programs... in 1986.

In addition to the regular 2176 waivers, the Health Care Financing Administration created model waivers to address the eligibility problems faced chiefly by children. This program allows states to waive the deeming rules and pay for support services to help keep children at home... Seventeen states have chosen this approach...

As a result of the [Tax Equity and Fiscal Responsibility Act of 1982], states also have the option to extend Medicaid eligibility to certain disabled children who would otherwise be eligible only if they lived in an institution. The state must determine that these children require the level of long-term care provided in an institution, and that their needs can be met appropriately and at no greater cost at home. States electing this option are required to cover on a statewide basis all disabled children meeting these criteria...

The flexibility afforded by the waiver and optional home care programs generally only benefits children in need of substantial nursing or medically oriented care..."


"The continued or increased use of high technology may extend the lives of more chronically disabled children and adults in the future. Many mentally retarded and developmentally disabled persons are living longer and are joining the ranks of the elderly population..."
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Title Annotation:named in honor of the late Rep. Claude Pepper
Publication:The Exceptional Parent
Date:Jul 1, 1990
Previous Article:Seating and positioning.
Next Article:Advertising, education and privacy.

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