People with disabilities, as a group, have more health care costs than the general population and are considered a high-risk group. Consequently, this group is often systematically excluded from insurance benefits. Many health care providers, too, lack knowledge about the health care needs of people with disabilities.
Traditionally, centers for independent living have not focused on health care issues, although some have been doing so recently. To what extent and to how many health complaints was the subject of a one-page survey questionnaire mailed to directors of 355 centers in the country. The 116 centers that responded to the survey reported an average of nine complaints about health each month from consumers. Typically, centers receive 96 information and referral contacts each month. As to the type of health complaint, the breakdown was: Access (26.7%), cost (23.7%), quality of care (11%), and other (28.7%). About 63.2% of the complaints, the centers estimated, were about disability. Those complaints about HMOs or other managed care plans was 20.6%, which may have been higher if respondents were able to distinguish between managed care and non-managed care. Too, many center consumers are on Medicare or Medicaid or both.
What do the centers do about the complaints? Many (74%) intervene on behalf of the consumers. Only 13% had anything to do with the actual provision of health care services. Examples of involvement were organization of a class action law suit, provision of health care information packets, work with state agencies to disperse personal assistance funds, advocacy, operation of a smoking cessation program for people with disabilities, etc. Four centers actually had a formal policy of addressing health care complaints.
The study indicated that people with disabilities still have problems getting health care services. The nine calls each month could be the tip of the iceberg and show that the Americans with Disabilities Act has not resolved problems related to access and others. More centers are intervening on behalf of consumers with health care issues, but such action has ignited complaints from some in the disability community who feel this conflicts with independent living philosophy. This reaction caused author Andrew Batavia, associate professor at Florida International University North Miami, to conclude:
"Certainly, the movement should never accept the paternalism and negligence with which the health care system has traditionally treated people with disabilities. However, we must also not refuse to deal with a system that is increasingly failing to meet our needs. Centers that have become involved in health care are not embracing the traditional health care system or the medical model: they are attempting to change the system by developing new models that meet the needs of their consumers. Who can do this better than independent living centers?" #701
Batavia, A. (1999). The role of independent living centers in meeting the health care needs of people with disabilities. Independent Living News 1(1), 1-8.