If you’re a nondisabled adult, chances are that you may never have given a thought to the security of your right to live in your own community, among people you know, in a home where you feel comfortable. While not spelled out in the Constitution, such a right seems natural, almost native, to the ethos of the United States. But for millions of Americans, it’s not: care needs routinely force disabled people and older adults into institutions including nursing homes, long-term care facilities and assisted living facilities, often over their protests.
Imagine being torn from your home and community: now think about the fact that even people who plan ahead for aging and retirement sometimes end up having to rely on Medicare and Medicaid for support as medical bills outstrip their resources, and thus live out their days in nursing homes.
In a 1999 case, Olmstead v. L.C., the Supreme Court affirmed the right to live in community-based placements when it didn’t create an undue burden, as an extension of the Americans with Disabilities Act (ADA), passed in 1990. The case has since been used in states across the Union to defend the right to live in the community: either at home with assistance from care providers, or in group housing that’s positioned in small, community-based settings. Several studies, including those by organizations like the AARP, show that not only is community-based living a human right, it’s also more cost-efficient and can result in better outcomes — especially given the abuse in long-term care facilities.
Yet, even with legal support, disability rights activism and evidence-based knowledge indicating that community-based living is preferable in almost all cases to institutionalization, many states have an alarmingly high number of institutionalized residents. This includes not just adults, but disabled children who need advanced medical care, many of whom are held in adult facilities because long-term care facilities for children are extremely rare. This is an issue of concern to the Department of Justice, disability rights organizations and advocacy groups focused on improving access to quality health care and a good quality of life.
Consequently, the federal government is offering a bribe, of sorts (it’s really an incentive program) to states to promote a higher percentage of community-based living placements. Through $3 billion in funding from the Affordable Care Act, participating states receive additional funding for at-home care and support services through 2015, as a way of effectively encouraging them to comply with already existing laws and court precedent. In return for the extra funding, they’re required to streamline the process of helping people access care in non-nursing home settings.
In New Hampshire, a sort of model state, the state has succeeded in transitioning nearly 99% of developmentally disabled adults into at-home care, showing that it is possible to turn away from an institutionalization-based approach to providing care and support services.
One concern cited by advocates working to improve these statistics even more, however, is the nursing home industry. Nursing homes are already nervous about cuts to Medicare and Medicaid funding aimed at keeping people out of institutions, and many do not relish the thought of government-sponsored endeavors to promote even more community-based settings. Thanks to a considerable lobbying body, the industry could wield considerable clout when it comes to actually rolling out community-based living measures.
One argument that could be raised, of course, is the huge numbers of jobs the industry provides. Were nursing homes forced to shutter, people with specialized skills would find themselves out of work. Or would they? With a rise in community-based care, there would be an increased demand for orderlies, medical assistants, and nurses, particularly those capable of providing skilled nursing care at home. Many former nursing home employees might be able to transition to at-home care with minimal disruption.
Photo credit: National Assembly for Wales.