Most Americans over 50, in need of help because of their disabilities, would prefer to receive money and manage their home care workers rather than to receive services from an agency that keeps control over them. This is one of the findings from a new study commissioned by AARP on people in the second half of life.
Entitled “Beyond 50.03: A Report to the Nation on Independent Living and Disability,” this new research provides detailed information about those with disabilities and the help they receive.
Not surprisingly, their biggest fear is the loss of independence and mobility. Another non-surprise is the desire of most to continue living in their own homes. One of their largest problems, this research reveals, is the extent of their unmet needs.
Among these latter is the need for help with such routine activities as bathing, cooking, and shopping. The chief obstacle to getting more help is cost. Similarly, many feel the need for physical changes in their house to make it easier to cope with their disabilities, but they cannot afford to install such improvements as grab bars, ramps, and wider doors.
Those with disabilities give rather low marks to the publoic accommodations in their home communities. More than half assign poor ratings to the accessibility and reliability of public transportation. Only 10 percent of people with severe disabilities use special transportation services.
Again, it comes as no surprise that most care is given by family members. What does upset expectation is the extent of this care: 88 percent of help regularly received at home is given by these family members.
An indication of the overall emphasis in this report comes in the authors’ adoption of a new expression: they do not speak of “long-term care” but rather “long-term support.” Though the difference may appear subtle, Robert Hudson, professor at Boston University and a widely respected gerontologist, calls it a “giant change.”
Its effect is to get away from language that suggests dependence and move toward words that support the ideal of consumer control over services. People over 50 who have disabilities want more say over the way they get help and the word “support” rather than “care’ is supposed to convey a new emphasis on autonomy.
At the risk of appearing a Luddite or other person opposed to innovation, let me here register some misgivings about abandoning the word “care.” Yes, it can be patronizing at times, but I feel attached to a word and concept that often brings out the best in people. Is there not something fastidious about substituting “support” for “care?” Has political correctness made yet another incursion into the land of service?
In this instance, as before, AARP shows itself a master of euphemism. This is the organization that has eliminated the word “retired” from its name. If anyone were to apply the word “old” to any of its members, the organization might suffer a collective heart attack.
I also remain suspicious of the effort to downplay ideas suggested by the word “dependence.” Of course, I am in favor of retaining a measure of independence for as long as possible for both myself and others. But almost everyone eventually has to rely on others for help with the ordinary activities of daily living.
As to controlling the services, this also can be a false ideal. Many of us older people, by reason of our disabilities, lack of know-how, or other reasons could never manage employees on our own. In practice, it would more often be our adult sons and daughters who would have to take charge of paying our caregivers and responding to the inevitable problems employees have. That would mean becoming dependent on our adult children, not something bad but something natural and unavoidable in the long run.
However, despite these reservations, I do welcome the AARP report, the third in a series offering new information about Americans over 50. And I support the development of more technology to assist those of us who have disabilities. I am cheered to discover that two-thirds of people in mid-life and beyond who have disabilities are accustomed to using computers. This is an encouraging sign for the future.
As AARP points out, serious problems cry out for action. The majority surveyed here are convinced that better health insurance would improve their quality of life. This holds true of those over age 65 who have Medicare protection: the fact that Medicare does not cover the cost of prescription drugs would by itself suggest as much.
It is also increasingly difficult to find skilled and reliable people to provide services for people at home. Nursing assistants and home health aides are in short supply and turnover is a constant problem.
Finally, many older Americans with disabilities cannot afford the services they need. Even those with annual incomes between $35, 000 and $50,000 worry about paying for long-term supportive services. And those who must beggar themselves to qualify for Medicaid have a truly unenviable lot.
Richard Griffin