Healey seeks controls as home care costs soar for personal care assistants

Gov. Maura Healey is proposing to limit spending on a rapidly growing home care program that is popular among the state’s expanding senior population but has become one of the state’s most expensive budget items.

The program, which provides personal care assistants (PCAs) for seniors and people with disabilities, has seen its costs soar from $1.2 billion in fiscal 2020, to an estimated $2 billion by fiscal 2027.

PCAs help individuals with daily tasks like bathing, dressing, meal preparation, and grocery shopping, allowing them to remain independent in their own homes rather than moving to nursing facilities. Providers warn that spending limits could affect this critical service for a high-needs population.

Program costs have risen by 67% over the past seven years, the Healey administration says, with state health officials projecting it could become the highest per capita cost for home care services in the nation by 2027.

In response, Healey’s annual budget proposes tying PCA spending to health care spending benchmarks from the Health Policy Commission to “ensure the program can sustainably serve its most complex consumers,” according to administration budget materials.

The governor recommended level-funding the program this budget year, after causing waves of protests last year when she proposed cuts to the program.

The proposal to tie program growth to benchmarks would cap MassHealth’s PCA spending at the HPC’s health care cost growth benchmark -- a significant reduction in growth for the home care program.

The HPC set the cost growth benchmark at 3.6% this year, meaning health care spending is not supposed to exceed that increase over calendar year 2025. The PCA program grew from $1.2 billion in fiscal year 2020 to $1.6 billion in fiscal year 2023 -- a 33% increase over three years.

Under Healey’s plan, any future growth to the PCA program would be subject to the HPC’s rulemaking process, including public feedback on proposed increases, according to the Executive Office of Health and Human Services.

“MassHealth is proud to have one of the most comprehensive Personal Care Attendant (PCA) programs in the country,” a MassHealth spokesperson said. “Spending on this important program continues to grow at an unsustainable rate and is on track to reach approximately $2 billion by FY27. Our proposal would align the program with other areas of health care spending. Our main goal is to ensure sustainable growth in the PCA program’s spending so that members can continue to rely on it.”

However, providers and advocates say that capping spending growth will cut off a rising number of people who need these services.

“All I can see is the need for the program to grow,” said Maura Sullivan, CEO of The Arc of Massachusetts, a nonprofit that advocates for people with intellectual and developmental disabilities.

Sullivan argued that with the state’s aging population and a growing number of adults with disabilities, there’s more need than ever for the state to invest in independent living programs.

In 2020, 14% of Massachusetts residents were aged 65 or older, and projections from the UMass Donahue Institute predict that number will reach 27% by 2050.

“We have an aging population. We have an aging disability population. We have more babies and young people living with disabilities who maybe would not have been saved just a decade ago, and now they’re thriving and living and deserve to live in their communities,” Sullivan said. “So all I see right now is a need to grow this wonderful program that allows people to access their community and thrive.”

Last year, the budget cuts Healey proposed would have saved $57 million, but disability advocates said 6,000 people would have lost services they needed to live at home. Healey recommended cutting off services for adults who received less than 10 hours of Activities of Daily Living (ADL) support from PCAs, and capping the hours that assisted living providers could do meal prep from 13 hours per week to seven.

The Legislature disagreed with Healey’s proposal and made no cuts to the program in fiscal 2025.

Sullivan said she worries similar service cuts would have to be considered with a spending benchmarks model.

“People with disabilities need this investment, and ultimately, we’ll all need this investment, because we’re all aging,” she said.

Sullivan serves on a commission convened by Healey to recommend ways to rein in program costs. She said she couldn’t say much about that commission’s work as they are not ready to release their recommendations, but they are “working hard with the administration to come up with a plan for sustainability.”

Commission member Rebecca Gutman, vice president of 1199 SEIU, the union that represents PCAs, said a report would be released in March with some of their ideas.

“Ultimately, that group is made up of advocates, and so as you can imagine, the advocates want to make sure that everybody’s getting the services they need, but we’re also very willing to engage if there’s efficiency to be made,” she said.

1199SEIU reached a contract with the state in 2023 that has gradually increased pay for PCAs, going from a flat rate of $18 per hour to a wage scale that goes up to $25 per hour based on experience. The union said the changes were necessary, as there’s a shortage of the workers -- the majority of whom are women of color.

They negotiate a new contract in 2026.

“We don’t want to see people receiving care on the backs of women of color, we want to make sure that all of our members and all of our workers are paid fairly,” Gutman said. “But really, our primary focus is making sure that people with disabilities and elders get the care that they need, and the only way that will happen is if the program is funded and if there are decent jobs for the folks providing the care.”

Asked if she thought the projected $2 billion cost in fiscal 2027 was unsustainable and whether cuts were necessary, Gutman said the focus should be on improving efficiency rather than drastic reductions.

“Our budget should reflect our values,” she said. “And I think our values should show that we value the lives of people with disabilities and others, and we’re all going to be in that situation someday, if we’re so lucky.”