Disability advocates say Healey budget plan will lead to lost access to services

As top Democrats struggle to reconcile floundering tax collections with ambitious spending plans, they are weighing whether to go along with $100 million in cuts proposed by Gov. Maura Healey to care for the elderly and people with disabilities.

Disability advocates are raising the alarm as House Democrats redraft the governor's spending plan, saying that under Healey's budget 6,000 people will lose access to services they need to live at home and maintain their independence.

"This is a matter of living a life of dignity," said Chris Hoeh, vice chair of the Personal Care Assistant Workforce Council and wheelchair user.

The state's public insurance program, MassHealth, is facing a $950 million budget shortfall in fiscal 2025 due to federal revenue decline and non-discretionary cost growth, a spokesperson for the Executive Office of Health and Human Services told the News Service this week. As tax collections dry up and pandemic-related support from the federal government is running out, budget writers are having to make hard cuts for the first time after several years of significant revenue growth.

The agency has proposed a "savings initiative" that would change MassHealth's Personal Care Attendant (PCA) program. These home care workers assist people with disabilities with everything they need to live at home, including bathing and dressing, meal preparation and feeding, help using the bathroom, housekeeping and grocery shopping and other day-to-day tasks.

MassHealth's plan to cut back on these workers is to cut off services for people with the least amount of need.

"MassHealth is proud to have one of the most comprehensive Personal Care Attendant programs in the country. Spending on this important program has grown significantly in recent years and is on track to reach $2 billion by FY27," a MassHealth spokesperson said. "Our proposed FY25 budget takes steps to set the program on a more sustainable trajectory. The targeted adjustments have been carefully considered to minimize the impact on members and healthcare providers and ensure the program can sustainably serve its consumers with the most complex needs."

Under Healey's proposal, adults who receive less than 10 hours of Activities of Daily Living (or ADL) support from PCAs would no longer be eligible for services. Additionally, MassHealth proposed a cap on the hours authorized for meal preparation from 13 hours per week to seven.

Advocates say this would cut from the service 6,000 individuals, who may need to move into expensive full-time assisted living, and lose the independence associated with living at home.

The administration says the PCA cuts are projected to reduce spending by $113 million. That's $57 million in state spending, but since the federal government matches state spending on PCAs, the total cost impact balloons to over $100 million.

"The PCA program is half funded by the federal government, so if you move people to other programs -- ones entirely paid for by the state -- we're worried there might not be enough funding," Hoeh said.

State health officials say the proposed changes would ensure that members with the most complex needs can still receive all the PCA services they need, and that the cap on meal preparation hours brings Massachusetts in line with other states.

MassHealth spending on these home care services has grown from $1.2 billion in fiscal year 2020 to $1.6 billion in fiscal 2023, and the administration said it is on track to reach $2 billion by fiscal 2027.

"We have probably the most comprehensive PCA program in the country, and with the recent contract negotiations that created a career pathway with dignity and thriveability for the people who choose to do this incredibly important work, it's on track to be over $2 billion a year by 2027, which is per capita more than any other state," Health and Human Services Secretary Kate Walsh said at a budget hearing on Monday in Burlington.

1199SEIU, the union that represents personal care attendants, reached a new contract with the state last fall after a bitter few months of negotiations. The three-year contract will gradually increase pay for PCAs, going from the current 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.

PCAs and those who need their assistance pressed the governor last summer to live up to a comment she made on the campaign trail that home health workers deserved to be making at least $25 per hour.

Now, however, after wages went up for workers, Walsh said her team had to look at "the rate of growth" in the program and "try and find the most effective and humane way to manage."

"It was really focused on making sure that the people who need this program the most to maintain their independence and resilience," Walsh said. "So unlike other states with very generous benefits -- pointing to California -- we chose not to cap the number of hours somebody needs. If somebody needs 80 hours a week to stay in their home and live their life and do their work, we will pay for that. Instead, we chose to look at the parts of the program that were unnecessarily legislatively prescriptive, how much time meal prep took, for example, and that was cut."

From 13 hours a week down to seven, Walsh said that allows for an hour of meal preparation a day.

PCA providers and advocates said some people need far more time, especially if they have dietary restrictions related to their disabilities.

"Some people need some real serious time with meal preparation," said Bill Henning, executive director of the Boston Center for Independent Living.

He continued, "If you have significant food allergies, if you have lost your teeth and need all your food blended, there's plenty of people who do that. We're talking about people with chronic health conditions, seniors, people with sodium restricted diets, people with all kinds of gastrointestinal swallowing issues who need pureed food. These are really serious, potentially dangerous cuts."

As for cutting off those receiving 10 hours or less of PCA service a week, advocates warned that those few hours of extra help may be what's keeping them safely at home.

"You don't get nine hours a week of help unless you're significantly disabled. If you need help toileting or anything like that, you're in a pretty serious category already," Henning said.

Cindy Purcell, a retired vocational rehab counselor and wheelchair user, said the cuts could especially hurt young adults who need extra help.

Some young adults, especially those with intellectual disabilities, need someone to help them grocery shop or cook safely, but may be able to use the restroom or shower alone. These folks may fall into the "lower-need" category and only use a PCA eight hours per week, but without that extra help, could have to go to a full-time living facility, she said.

Seniors who get cut off from the help PCAs provide could be eligible for other state-funded programs, Purcell said. But she worried about those who may not qualify for another form of assistance.

The administration pointed to a patchwork of other programs that seniors and people with disabilities could turn to if they are cut off from PCA services. People over the age of 60 would be eligible to be served through the Executive Office of Elder Affairs Home Care Program. Others may be eligible for adult foster care, adult day care or homemaker services, Walsh said.

"The thought was, if you only need one hour a week of services, there's a better way to get those services than this PCA program, because remember, we have a significant shortage of personal care attendants across the state," Walsh said. "And we wanted to make sure that people who were abled and skilled and expert enough to do this were available to those with high needs."

During her testimony at the budget hearing, Walsh was corrected by Hoeh, who attended as a member of the audience. Walsh said the cut would impact people who receive one hour of service a week. Hoeh interjected, saying the proposal would cut service to people who get up to 10 hours of help every week.

"I think they were thinking this wouldn't be that big of an impact," said Meg Coffin, CEO of PCA provider Center for Living and Working, Inc. in Worcester. "But a lot of these folks, these are the 10 hours that are keeping them in the community. We're doing a lot of help for them... I'm not sure the current administration totally understands home care, I'll be honest."

Purcell said the cuts may end up costing the state more, if people who rely on current services end up in full-time care facilities.

"Having these programs saves the state a lot of money. These people would be in nursing homes, and that's way more costly than 10 hours of week, with half paid for by the federal government," Purcell said. "I don't understand it. It's going to cost way more money. Way more money."

About a dozen lawmakers attended a legislative briefing this month where advocates led by the Disability Policy Consortium asked them to reconsider the cuts when redrafting Healey's budget. Sen. Jo Comerford of Northampton and Pat Jehlen of Somerville, who attended the briefing, were among those who questioned Walsh about the proposal on Monday.

"I'd like to think that they're doing the best they can with less funding," said Harry Weissman, director of advocacy at the DPC. "We know the state has to make cuts this year, in some way or another. But we're really just asking that none of those cuts go to the disability community that has already been pushed to the sidelines. These services are crucial."