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The Health Care Needs of Individuals and Families with Disabilities Each year the number of people with disabilities increases. In February of 2003 charts from the International Center for Disability Information indicated the number of individuals in the United States experiencing the loss of one or more “essential life functions” to be approximately 58,038,500.
Before there can be health care there must be agreement that an individual with a disability has the right to medical services which would be considered appropriate if they were not disabled. Life is a precursor to the need for medical care. Infants, young children, adults and the elderly who live with disabilities often face harsh judgments which prevent access to even minimal medical/health care. Pediatric specialists were asked if they would acquiesce in parent decisions to refuse consent for surgery for a newborn with intestinal atresia: § If the baby had Down’s syndrome: ü 50% of pediatricians said “Yes.” ü 77% of pediatric surgeons said “Yes.” § If the baby did not appear to have Down’s syndrome: ü 73% of the pediatricians said “No.” ü 92% of pediatric surgeons said they would try to convince the parents to allow the surgery. An article in the Fall 2000 issue of Cambridge Quarterly of Health Care Ethics reports that 24 out of 26 hospitals in California have developed protocols which permit doctors to unilaterally deny wanted and requested care. Wesley J. Smith in a 1/6/03 essay, Doc Knows Best on NRO, deals with this threat of futile-care for people with various disabilities of all ages: It used to be that people were afraid of being hooked up to machines when they wanted nothing more than to go home and die a peaceful, natural death. . . But that was before the bioethics movement largely abandoned the sanctity of life ethic for an express or implicit utilitarianism that views the value of human life through a distorting prism of “quality.” Now a new medical hegemony is arising, one that proclaims the right to declare which of us have lives worth living and therefore worth treating medically, and which of us do not. The N.O.D./Harris 2000 Survey of Americans with Disabilities indicates that in terms of getting needed medical care, things seem to be slowly improving for people without disabilities while remaining static for those with disabilities. § 90% of people with disabilities have some form of health insurance, however: ü They are four times more likely than people without disabilities to have special needs not covered by their health insurance. (28% versus 12%) ü Those with more severe disabilities are more likely to have such gaps in their insurance than people with less severe disabilities. (40% versus 11%) People with disabilities are three times less likely to have received needed medical care over the past year than non-disabled people. (19% versus 6%) ü People with disabilities are more likely to put off or postpone medical care than their non-disabled peers. (28% versus 12%) ü These surveys have contrasted whether people with and without disabilities are getting needed health care since 1994. The gap between coverage has risen from 5% to 13% indicating that people with disabilities are lagging behind as new programs are initiated. The Bush administration’s recent proposals in Medicaid which allow states to reduce or eliminate benefits for people served by the program poses a threat to the most vulnerable. People with disabilities report that physical, attitudinal and policy barriers block their access to adequate medical care: § Inaccessible sites. § Inaccessible information and forms. § Negative beliefs about their value as people. § Disrespectful attitudes and lack of knowledge about particular conditions. § Attention on disability, not on presenting medical problem. § View that death is preferable to living with a disability § Their pre-existing conditions. § Cost capping. § Unavailability of in-home services, durable medical equipment, holistic health services, assistive technology, preventive care and therapies. § Biased toward institutionalization – nursing homes and other long-term care facilities.
ACTION NEEDED: § Support expanded and life affirming health care for all – Including those with disabilities. § Support MiCASSA, a cost effective alternative to nursing home institutionalization. § Health care training and education which stresses the healing aspects of medicine and de-emphasizes the need to “cure” all physiological impairments without regard to the sanctity of life. The disability community can teach their non-disabled colleagues that disabilities are a natural and normal outcome of the fragility of the human body.
Affordable, available and life-affirming health care is every one’s business and the disability community seeks a role in supporting this goal.
Because every public issue affects people with disabilities, they should be consulted in the development of every policy. |
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