OpEd
Home care is what people want when they are offered a choice. You remain in a familiar neighborhood with people who respect you. Friends, neighbors, and other people are likely to help in an emergency—the mail carrier, the dog-walkers, the crossing guards—and of course there is the home itself. There, you decide: when to get up, eat, dress, go out. There, you can lock the door. There is dignity, autonomy and pleasure in living in your own home and community as you grow older.
Maintaining home care is now, suddenly, a bigger national challenge. States’ budgets are being squeezed by the Trump administrations’ existing, proposed, or potential public-health cuts. Unfortunately, under federal Medicaid rules, Home and Community-Based Services (HCBS) are considered optional benefits. In 2025, 41 states reported waiting lists for HCBS programs. Across the country, states ought to do whatever it takes to fund the system that allows low-income older adults and people with disabilities to remain at home, instead of being forced into nursing facilities.
Massachusetts, a progressive state with a solid tax base, has one small program that helps low-income people with new disabilities stay at home, by providing money for ramps and other useful accommodations.
The main method to help people age in place is the state’s Enhanced Community Options Program (ECOP), which serves low-income older adults, if they clinically qualify for MassHealth–funded nursing-home care. These individuals are most often in the process of reducing their assets to become eligible for the Frail Elder Waiver program. In other words, they are eligible for nursing facilities but could stay in their own homes—where they prefer to be—if they could get some small amount of help for bathing, shopping, or cleaning. No one gets more than 7.5 hours per week of assistance.
What happens when a state home-care program cuts slots? The discarded clients have the fewest options—and the least time to waste.
The state has proudly recorded a long-standing commitment to funding ECOP. Nursing facilities—most of which are understaffed and many of which are closing—may prove unsafe. The state should examine its implicit bias toward institutionalization. Because keeping people out of nursing facilities is both cheaper and kinder. In this crisis, Massachusetts should want to maintain, and beef up, any programs that help people remain in their home communities.
Soon after Trump was inaugurated for the second time, however, long before anyone knew how his Medicaid cuts would affect any state, the first notice appeared of cuts to the ECOP home care program. Paul Lanzikos, cofounder of Dignity Alliance Massachusetts, wrote to Gov. Maura Healey (D-Mass.) and Secretary Robin Lipson, Executive Office of Aging & Independence (AGE), to suggest other ways to respond.
“we cannot understate our distress [that. . . ] in appearance, the first cost-containment measure being taken is the restriction of services to consumers. We offer that there are numerous program reforms, payment reforms, and revenue maximization initiatives that should be exhaustively explored prior to taking this most serious action of limiting the number of individuals to be served, or the volume of services that they may receive..”
The restriction of services was not just an appearance of excluding needy people. Over the course of 2025, the Executive Office of Aging & Independence (formerly Elder Affairs) went about lowering the number of eligible consumers entitled to services by about 2,000, to a monthly statewide average of 5,679.
It has been 13 years since openings in the Enhanced Community Options Program were set this low. The experience of having to contain costs during the Great Recession of 2008 and beyond, by implementing Home Care Program waitlists, led to the admission that the ECOP program should not be restricted. Capping the ECOP program was considered undesirable public policy.
Accordingly, former Gov. Deval Patrick’s (D-Mass.) administration adopted the maxim that every Home Care Program participant who is assessed to be at a nursing-facility level-of-care need should have access to the service offerings of ECOP. In fiscal year 2013, the home-care service-capacity program under Gov. Patrick was designed to serve all ECOP demand (data from Peter Tiernan, received in response to his public records request 2025.8.2, dated Sept. 12, 2025). Former Gov. Charlie Baker’s (R-Mass.) administration also embraced this outlook. The need was accepted as a bipartisan duty of care. In the past, few states offered non-Medicaid elder care services at a scale anywhere near those of Massachusetts.
‘Other states are in worse shape. As Vermont Sen. Bernie Sanders writes, tersely, “The home health care situation is a disaster.” ’
Many home- and community-based services programs were enacted or expanded in response to the Olmstead decision, a court ruling that found that unjustified institutionalization of people with disabilities is illegal discrimination. As the 25th anniversary of that decision nears, Kaiser Family Fund notes, “waiting lists are sometimes described as contributing to the risk of unnecessary institutionalization for people with disabilities.”
At the same time, a surge in residents older than age 85 is widely anticipated. In this crisis, the Healey administration should recognize an “affirmative duty of care” as an obligation, whether the statute that created ECOP explicitly requires it or not. Gov. Healey heads a rich state, whose Millionaire’s Tax has made possible some of her goals: free community colleges, free lunches for public school students, and other visionary expansions we can be proud of.
Other states are in worse shape. As Vermont Sen. Bernie Sanders writes, tersely, “The home health care situation is a disaster.”
The immediate questions are: What will happen to the excluded clients? And, will they be forced into nursing homes? Recent analysis demonstrates that Medicaid beneficiaries who need nursing home levels of care and did not receive home care were five times more likely to be admitted to a nursing home than those who did receive services.
AGE (which should be renamed the Executive Office of Elderly Dependence) has promised to create a waiting list for indigent people who are currently refused access to the home-based program. AGE should be required to publicly post actual home-care program waitlist information on a monthly basis, and the projected monthly waitlists that accompany their Fiscal Year ’27 funding recommendation.
The discarded clients, being old or disabled or both, have the fewest options and the least time to waste.
What is worse for the clients and their families than not being on such a list (and waiting years for a placement when you are already old)? There being no waiting list at all. Then hope dies too.
Margaret Morganroth Gullette is the author, most recently, of American Eldercide: How It Happened, How to Prevent It (University of Chicago Press, 2024). She is a scholar at the Women’s Studies Research Center, Brandeis University.
Photo caption: People enjoy the porch of a historic inn in Stockbridge, Mass.
