BOSTON — Since the COVID-19 pandemic shut down day programs and other services for adults living with disabilities, there has been a backlog of people unable to get back into those programs that advocates say are necessary for their mental and physical well-being.
A large part of the problem is workforce shortages that have particularly affected home and health care settings.
Disability advocates have for years called for higher wages for those working with individuals with autism and intellectual disabilities, and Gov. Maura Healey moved to grant that request in her budget proposal for fiscal year 2025. But with declining tax collections, lawmakers will have to consider if they will continue the governor’s commitment to drastically increase funding for the workforce.
Healey recommended the biggest-ever bump to the line item that funds agencies contracted by the Executive Office of Health and Human Services, called Chapter 257. She would increase this investment by 70%, from $230,000 last year up to $390,000 in fiscal year 2025. Healey also proposed tapping $95 million in unspent funds from an economic development bill passed in 2023, according to The Arc of Massachusetts, a disability advocacy organization.
“The workforce crisis has had devastating consequences for people with autism and most especially adults who have high support needs. We’re talking about 3,000 adults, some going for years without programs,” The Arc’s deputy executive director, Maura Sullivan, said.
Healey’s Chapter 257 investment includes two recommendations to bring the median direct care salary benchmark to $20 per hour. This rate represents the median — meaning some newer home and health care workers would make below this rate, and those who had been working longer with agencies may be paid over this amount.
Advocates argue that the rate increase would bring these jobs closer to a living wage, and make them more appealing when there are other jobs available that pay more than what direct care workers are currently compensated.
“Don’t get me wrong, I used to work at a drug store, I get it. But the responsibilities for someone working in a home … that’s a whole different ballgame,” said Leo Sarkissian, executive director at The Arc.
More than 5,000 people with disabilities have turned 22 in the years since March 2020, aging out of special education and then needing to transition into the adult service system. The fiscal year 2025 transition age class, with over 1,400 graduates, is the largest in state history.
Without staff available to run adult service programs at their full capacities, advocates say some adults with severe disabilities are beginning to regress in their development.
Mona Roy, a Lexington resident and mom to autistic 23-year-old son Aloke, said she has seen it up close.
Aloke had received intensive one-on-one services as a live-in student at a school until he aged out of the program last year. While enrolled in school, he had been progressing academically and worked briefly for an insurance company, which Roy said gave him “a sense of purpose.”
Without being able to get the same one-on-one support after he aged out, Aloke has begun regressing in his development.
“This has led to frustration and the origins of new challenging behaviors, such as ripping off the threads and chewing on his clothes, taking off his seatbelt during van rides, attempting to throw objects out of the van window, bolting during medical appointments and refusing vaccinations,” Roy said.
She and her husband hired private staff to engage and support Aloke during the day when he cannot go to programming. What services he can get often feature one employee to six or seven adults with disabilities, she said.
Aloke’s doctor recently suggested antidepressants, Roy said, a common solution to the mental toll being without support takes on adults with disabilities.
“The contrast between how he had been doing and now serves as a stark reminder of the support systems that are sorely lacking due to the workforce crisis,” Roy said.
Advocates at The Arc pleaded with lawmakers and their staffs during a legislative briefing Wednesday to approve the governor’s funding request to invest $485 million in Chapter 257 as a way to raise rates for direct care providers.
But they also strongly opposed another component of the governor’s fiscal 2025 budget, and implored legislators to reject a proposed eligibility change for MassHealth’s personal care attendant (PCA) program.
Healey recommended “flat spending” for the PCA program, which helps people with permanent or chronic disabilities hire care attendants so they can stay in their homes and communities. Facing slumping tax revenues, Healey’s proposal would include capping the hours authorized for meal preparation and some eligibility changes related to Activities of Daily Living support.
This reduction would mean participants would be deemed ineligible for a PCA unless they had a weekly need of at least 10 hours of daily living activities assistance, The Arc said. Also proposed is limiting meal preparation to 7 hours weekly, down from the current 13 hours allowed.
The disability advocacy group estimated the proposed changes would eliminate an estimated 6,000 persons not meeting the 10-hour week threshold for assistance, and argue that cutting down on meal preparation time could harm people with disabilities who require special diets.