People who have severe developmental disabilities, mental illness, or physical disabilities with medical complications, or any combination of these, face similar problems with obtaining appropriate services and with assumptions made about them by people who are unable or unwilling to see them as individuals with differing needs. The same goes for people who are aging. ["Aging" seems to be the term I am supposed to use to talk about people like myself who are old and getting older by the minute. Apparently, some people are offended by the "O"-word.]
In an article in the New York Times, “At Home, Many Seniors Are Imprisoned by Their Independence", 6/19/15, Paula Span examines the conundrum of older people who have managed to “age in place” but find that when their physical or mental condition gets worse, they lack the care and support they need to engage in a life outside of their own homes.
According to a report in JAMA Internal Medicine, “Almost two million people over age 65, or nearly 6 percent of those Americans (excluding nursing home residents), rarely or never leave their homes...The homebound far outnumber the 1.4 million residents of nursing homes.” [Homebound is defined as those who have not left their homes at all or had gone out no more than once a week.]
People who are homebound are sicker and have more dementia and depression than those who are not. Their ability to get out depends on the accessibility of their physical environment and whether they have assistance to help them get out safely to the places they desire to go.
Span also mentions that a 2011 study on unmet needs of older Americans “…turned up an interesting comparison: When the researchers controlled for demographic characteristics and health and function, people in assisted living facilities actually got outside more often than those in their own homes.”
While the ideal of "aging in place" may be the desired goal of most older Americans, “…older adults’ desire for familiar surroundings, and their fear of institutionalization and its financial burdens, have apparently led millions to fight to remain in homes they can rarely leave. Our national celebration of independence as a value may not help.”...
Amy Murray of the Carter Burden Center for the Aging in New York adds that “Remaining at home, however difficult or isolating that becomes, gives older people a sense of control that may prove illusory...They feel like they have their freedom even though they don’t, really."
All this is relevant to the current push to get people with developmental disabilities out of congregate settings including institutions, group homes, center-based day programs, and planned communities designed for people with autism and other developmental disabilities. For some people the "freedom" to live in the community adds to feelings of isolation and a loss of connection.