Family caregivers are overwhelmed, usually untrained, and often under enormous financial stress. If they are lucky, they have a community to help support them. But unless those receiving care are on Medicaid, they get little help from government.
Now, Maine has begun a program aimed at helping family members care for aging or disabled relatives and help themselves. Called “Respite for ME” it reimburses up to $2,000 annually for support families need as they care for loved ones living at home.
Caregivers can use the funds for a wide range of services, including information and assistance, personal counseling, caregiver training, support groups, adult day, and hiring homemakers and personal care aides.
Those already receiving Medicaid long-term care benefits are not eligible since they already get similar benefits. But any other qualified family caregiver is eligible to participate, regardless of income. They must be caring for a frail relative over age 60, someone with dementia, or a family member with other disabilities regardless of age. People over age 55 who are caring for young children of others also are eligible. For example, a grandparent.
Since the $5.1 million program is funded by a Covid-19 relief law called the American Rescue Plan Act, beneficiaries have to show they were hurt in some way by the pandemic to qualify. But these eligibility rules are quite liberal. It can mean they lost a job or had their work hours cut, lost income in other ways, or suffered increased costs of care.
Because it has only temporary two-year funding, Respite for ME is designated as a pilot program that will end in 2024. Here is a nice short summary from the National Academy for State Health Policy, which brought the model to my attention.
Respite for ME could be thought of as a small step towards public long-term care insurance. It is different in key ways, of course. The benefit is very small and (for now) only temporary. It goes to family caregivers and not to the person with the need. And, crucially, it is funded by federal taxpayers and not primarily by those who benefit.
That is in contrast to, for example, Washington State’s public long-term care insurance program which is social insurance explicitly funded through a small payroll tax. Still, Maine’s effort is an example of a state dipping its toe in the waters of a public program that is available to all family caregivers and not aimed only at the very poor, as Medicaid is.
Maine is an interesting case. It tilts Democratic, with a Democratic governor and legislature, one Republican senator and one senator who describes himself as an Independent. Almost 22 percent of its residents are aged 65 or older, the largest percentage of any state (even Florida).
It also is the most rural state in the country, with almost two-thirds of its population living outside of cities and suburbs. Combine that with shortages of home care aides and challenging winter weather that makes it hard for aides to travel and the burden on family caregivers is great.
The state also is working to improve the supply of paid aides. A related program called “Caring for ME” provides additional training and support for aides, and even a web link that shows job openings, all aimed at increasing the number of aides. This program not only can help support frail older adults and younger people with disabilities, it also can provide a career path in a state where many residents have limited skills and need good jobs.
The federal government has its own respite care program for family caregivers. While it provides grants to states for these services, it is woefully underfunded, generally is available only for low-income families, and often has long waiting lists.
Congress is unlikely to adopt any significant reform in long-term care before at least 2025. For example, paid family leave is dead in the water. And with little chance it will increase funding for existing programs, it will be up to the states to develop creative new programs to help older adults and their families. Maine’s initiative is a relatively low-cost model that has the potential to significantly help family caregivers.
It will be fascinating to see how it works and whether the state will be willing to renew it with its own money in two years.