Twenty-one years after the U.S. Supreme Court’s landmark Olmstead v. L.C. decision — which ruled that people with disabilities have the right to choose to receive care in their homes and communities instead of in an institution — Michigan’s older adults and younger persons with disabilities still do not have real choice.
The Court’s Olmstead decision acknowledged that segregating individuals with disabilities in institutional settings deprives them of the opportunity to participate in their communities, interact with individuals who do not have disabilities and make their own day-to-day choices.
Over several years following the decision there was some progress, but the hoped-for sea change in the lives of people with disabilities has not come to fruition. More than two decades later, many people across the country who can and want to live in the community remain unnecessarily institutionalized.
Some states are doing better than others.
In Oregon, greater than 80% of Medicaid long-term care (LTC) dollars are spent on community-based care. Michigan, by contrast, spends only 40% of its LTC budget on community-based care and ranks 6th worst in the nation in terms of providing choice in where to receive long-term care.
Michigan sets limits on how many people can access state-funded home and community-based LTC by allocating a set number of MI Choice Waiver ‘slots’ available each year.
If you have care needs that qualify you for nursing home admission, and meet financial guidelines, the state will pay for your nursing home care through its Medicaid program without any ‘slot’ allocation issues blocking your admission to care.
If you prefer to receive care at home, you may have to wait for care or be forced to use institutional care until you can access care in the home based on how many MI Choice Waiver ‘slots’ have already been utilized that year.
This drastically limits choice and is in stark violation of the Olmstead decision.
Further, it does not make good fiscal sense. Home and community-based care costs less than half of nursing home care.
Medicaid is the primary payor for long-term care, and as such, Medicaid long-term care expenditures are on track to grow exponentially as the population ages. Driving care to the costliest setting is ballooning state and federal Medicaid budgets beyond sustainability.
That is not to say that nursing home care is not a viable and needed option. Michigan needs quality facilities to provide care when a nursing home is the setting people prefer. There are several quality nursing facilities in southwest Michigan. Quality can be compared by visiting medicare.gov/nursinghomecompare.
But it should be a choice, not a forced option simply because other people have already used the ‘slots’ for home-based care the state has allocated for the year.
A 2018 AARP survey of adults shows that 3 out of 4 adults age 50 and older want to stay in their homes and communities as they age. In the wake of the high percentage of COVID-19 deaths attributed to congregate care settings, people increasingly want to age at home rather than in a nursing home.
They deserve that choice.
We have a long way to go even in the language we use to have this conversation. “Slots’ is a term the state uses to allocate resources for care. I hesitate to use that language even in this column. People are not slots. They’re people. People with care needs who have a right to choose where to receive that care. Putting a face to the issue is key.
Each year, Area Agency on Aging coordinates home-based care for over 700 people in southwest Michigan who otherwise could reside in a nursing home. MI Choice Waiver staff, and a wide network of providers, get to see them every day and to hear their stories.
People like Angie*, a 50-year-old who moved to a nursing home when her physical condition became more than she could manage at home. But after two years of living in a facility, she was determined to find a way to move back home. She was able to enroll in the MI Choice Waiver program and says both her mental and physical health are better since getting care at home.
And David*, a 98-year-old who has been able to have his wife of more than 70 years with high care needs live at home with the help of the MI Choice Waiver. “It’s so important to have her home with me. We couldn’t bear to be apart. We’ve been married more than 70 years,” said David. “We are very comfortable in our own home; it just wouldn’t be the same if she were in a nursing home.”
There’s a strong institutional bias in the way Michigan funds Medicaid long-term care. The issues are complex but there are successful models that have been proven to work. “Rolling up”, or combining, the state long-term care budget items for nursing homes and home-based care is one tool other states have used to successfully give people real choice in where to receive care.
If a choice in where to receive long-term care matters to you, your state representative, senator and Michigan’s Governor are the folks who can make change happen. You can find their contact information at areaagencyonaging.org/advocacy.
*Names have been changed to protect client privacy.