It’s hard to listen to the news or to read the newspaper without being bombarded with information about the Affordable Care Act – more often referred to as Obamacare. A recent NPR news piece asked people on the street what they knew about the law and its impact on health care. Amazingly, few people were able to explain what the new law will do. As I reflected on the NPR piece, I recalled how health care brought me to Alpha One in 1995 for the purpose of leading Alpha One’s venture to provide managed care for people with disabilities.
In the early 90s I had been the Project Director of a grant funded by the Robert Wood Johnson Foundation at the Center for Living & Working (CLW) in Worcester, MA. It was during this period I became a health and wellness zealot for people with disabilities. Alpha One and CLW were two of 11 CILs in the national program, Improving Service Systems for People with Disabilities. The CLW project focus was to create an Independent Living Case Management model for managed care organizations. After a few false starts by Maine DHS, managed care fell off the public policy agenda and Alpha One pursued other ventures. Nevertheless, health, wellness and prevention of secondary disabilities are always on my mind as an area where I believe Alpha One has much to offer.
As the Affordable Care Act is rolled out, what will this mean for people with disabilities who experience numerous inconsistencies in the health care system? The Institute on Disability at UNH report, Health Disparities Chart Book on Disability and Racial and Ethnic Status in the United States offers a sad glimpse into the health of people with disabilities. The report agrees with commonly held population data that puts the number of people with a disability at 20% of the population. Although disability is not a formally recognized minority group, the report treats it as such to draw comparisons to other minority groups and their experience in health care. These groups are: Hispanics, Blacks, Asians, American Indian/Alaska Native and Pacific Islanders.
According to the report socio-economic status, is the most common determinant of disease. The disturbing result – people with disabilities have the worst prevalence rates in 10 of 14 categories including the lowest proportion of employment for wages (43%); self reporting their health as fair or poor at 40%; the highest level of being sedentary (37%), the highest prevalence of obesity (38%) the highest prevalence of diabetes (15%) and the highest prevalence of stroke, coronary heart disease and heart attack (5%, 7% and 7%) and people with disabilities were the largest group reporting cost as a barrier to health care (28%).
Of course, in other minority groups the news is even worse if one has a disability. Blacks without a disability report their health as fair or poor (11%); Blacks with a disability report their health as fair or poor (50%).
The time has arrived for Alpha One to re-engage in the health care sector as an advocate for access to care; to educate the community about these issues and most importantly to provide people with disabilities with information and tools to apply the principles of consumer direction and empowerment in their own health care.