History of the Role of Consumer Affairs
Every state has what is called an Office of Consumer Affairs to deal with insurance, quality of building construction, mail order practices, motor vehicle sales or almost any purchase an American can make. The idea of healthcare as a purchased commodity came of age in the 1970's when women and people with various disabilities demanded to have an active say in their health care and in dollars allocated for research.
Supplemental Security Income (SSI) did not exist until October 30, 1972 (Public Law 92-603). SSI gave people with serious and persistent disabilities a monthly income for food, clothing and shelter. This meant that people hospitalized long term in state institutions could be released to the community.
In 1978 when the National Institute of Mental Health formed the Community Support Program to address people getting out of institutions (de-institutionalization), patient activists were invited to annual “learning conferences.” By 1984, the CSP adopted “self determination” and “consumer empowerment” as part of its mission. In 1992 the Substance Abuse and Mental Health Services Administration (SAMHSA) was created. This federal agency said to states that receiving any federal funding would be dependent on state planning bodies having at least one half the members at the table being consumers of services. By 1998, twenty-seven states had paid consumer positions on their staff as advisors.
The 1978 Carter Commission included one identified consumer, Priscilla Allen. The 2003 New Freedom Commission: Achieving the Promise: Transforming Mental Health Care in America, Final Report [Rockville, Md.: US Dept of Health and Human Services, 2003], included one self-identified mental health consumer, Dr. Dan Fisher. Paolo del Vecchio was the first consumer Director for Consumer Affairs at SAMHSA.
Meanwhile Centers for Independent Living, serving people with physical disabilities, had a radical notion: People with disabilities are regular people. We are a minority group with the same civil rights as all other citizens. Society needs fixing, not people with disabilities. People rode their wheel chairs up to the inaccessible steps of the White House year after year until the Americans with Disabilities Act was passed. It was amended in 2009. |