What do care recipients owe their caregivers?: Commentary on Eva Feder Kittay’s “Caring for the Long Haul”

Eva Feder Kittay combines a philosopher’s appeal to logic and an advocate’s call for action. Over the years she has written cogently about theories of caregiving and dependence, shared her experiences as a parent of a disabled child, and now adds what she has learned about caring for elderly relatives. In this commentary I want to clarify a few points in her far-ranging essay. I also want to suggest broadening her focus on paying for long-term care to include reforming the long-term care system. Finally, I have reservations about the high standards she sets for reciprocity between caregivers and care recipients.

Autonomy, disability, and long-term care

While Kittay sees similarities (as well as differences) in the needs of children and young adults with disabilities and those of older adults, the advocates for these populations do not always play well together. Autonomy is a highly prized value for most people, but what it means in practice differs depending on individuals’ needs and their capacities to exercise them. One size does not fit all.

Most young adults with disabilities, like their peers without disabilities, strive for independence. They want to live their lives as they choose, without what they may perceive as the smothering influence of parents and families. “Nothing about me without me!” is a rallying cry that fits the young person with a spinal cord injury but does not work so well for an aging person with dementia and heart failure. Calls to tear down nursing homes reflect justifiable anger at the lack of appropriate community settings for young adults with disabilities but do not take into account the intense medical and social needs of 90-year-olds with advanced dementia. And protests against withdrawal of life support perceive this action solely as dismissive of the lives of people with disabilities, not as an end to suffering that a dying person may have anticipated and even documented in an advance directive.

Partly as a result of disability advocates’ concern that people with disabilities do not need “care,” in the traditional sense, social service professionals have adopted the term long-term services and supports. This has become the term of art in the aging world as well. Apart from the tongue-tying nature of the phrase (try to say it fast three times), it has a bureaucratic, impersonal tone, which perhaps is the intent. It moves away from what is perceived as condescending and paternalistic service provision, putting control in the hands of the care recipient. In my view, and I think Kittay would agree, people with chronic illnesses and disabilities need services and supports, but they also need care, defined as the provision of medical treatments with respect for the person’s individuality, dignity, family relationships, and preferences and values. Policy makers should be sensitive to these differences and should provide services that are appropriate to the person’s values, capacities, and the setting.

Beyond the CLASS Act: Repairing a dysfunctional system of care

Kittay devotes a major portion of her essay to the short, unhappy life of the CLASS Act, the failed federal attempt to create a self-supporting system of long-term care insurance for the middle class. Perhaps it was doomed to fail, or perhaps it was ahead of its time. Whatever the reason, we are left with a Medicare system that is under attack and that never was intended to cover long-term care, and a Medicaid system that, despite continued efforts at rebalancing toward community-based care, still spends more of its long-term care money on nursing homes. Nearly every state has some form of Medicaid waiver from the federal government that allows it to spend resources that would have gone to nursing homes to go to home- and community-based services. The catch is, of course, that you have to be poor to be eligible for these services; and those assets that might be preserved legally may be subject to claims by the state after the Medicaid beneficiary has died...