In New Hampshire, people with disabilities face challenges hiring the help they need

Yahoo

27-05-2025

Jim and Pat Piet pose for a photo in their Concord home. The couple said that hiring aides to help Jim with everyday tasks in light of his cerebral palsy is 'damn near impossible.' (Photo by William Skipworth/New Hampshire Bulletin)
Last time Jim Piet, who has cerebral palsy, needed to hire a new personal care assistant to help him complete daily tasks, it took four months.
Amid New Hampshire's tight labor market and low Medicaid reimbursement rates, people with disabilities, like Piet, face challenges hiring the help they need. And for people with unique needs, this can be difficult, isolating, and exhausting.
'I need help for everything,' Piet said.
Piet, who uses a motorized wheelchair, has a personal care assistant, or PCA, to help him get out of bed, shower, and get dressed, and to prepare meals and drive him places. Those everyday services, among others, are paid for through Medicaid.
Piet worked for 29 years, first with the University of New Hampshire's Institute on Disability, then for New Hampshire's vocational rehabilitation program as a public relations specialist. He also holds a bachelor's degree from Southern New Hampshire University and a master's degree from Springfield College. He lives in Concord with his wife, Pat, who also has cerebral palsy.
'Finding warm bodies is hard,' Pat Piet said. 'Finding warm bodies that can actually do the job is nearly impossible.'
Cerebral palsy can manifest differently for different people. For example, Piet uses a wheelchair while his wife doesn't. For some, cerebral palsy causes developmental delay and intellectual disability. For Piet, it's just physical. That's why he hires PCAs as opposed to direct support professionals, or DSPs, another common type of aide who, instead of simply assisting their client with tasks, also guides them, attempts to teach them how to do things for themself, and seeks to assist them with tasks they can't do for cognitive or developmental reasons. The Piets said there's a lot of overlap between the two professions.
'A lot of times, especially if we get someone who worked as a DSP, they're used to being the one who prompts, the one who directs,' Pat Piet said. 'They come in to help Jim and Jim's just throwing out orders one after another. They do not know how to deal with that.'
'Most people are not used to working with someone with a master's degree,' he added.
They said part of the challenge in finding aides is the job's difficulty. It requires physical strength to lift clients out of bed, into wheelchairs, and throughout their homes, but Pat Piet noted it also requires 'soft skills.'
'I think DSPs and PCAs are some of the most difficult jobs,' she said. 'They almost require a degree in psychology. They require you to be able to read people, to be able to prompt someone effectively, to understand Jim is not someone with an intellectual disability, so it's a different approach.'
Despite this, the jobs pay relatively low wages. Granite State Independent Living, one of the state's largest agencies hiring DSPs and PCAs, has job postings with wages from $18 to $22 per hour. Those jobs do not require a high school diploma or nursing license.
'You can make almost as much money working retail,' Pat Piet said. 'And retail does not require the same amounts of soft skills and emotional and physical investment.'
Jim Piet has two vendors who help him hire his aides: Granite State Independent Living and GT Independence. He said GT Independence pays aides better, but Granite State Independent Living provides better support.
'It's a double-edged sword,' he said.
He said they often get people incapable of doing the job or who 'bring (their) own baggage.' Sometimes caretakers don't act appropriately when he's in the community, he said, and treat him like 'a charity case.'
'I always cringe when people talk about how emotionally satisfying the job is,' Pat Piet said. 'You want to enjoy going to work. You want to get something emotionally out of it. But I feel like when we advertise that, we tend to get people who are emotionally needy and are looking to the person they're caring for to fill that gap. … This is a job. You get your emotional needs met from friends and family, not at your job.'
They also feel frustrated that people often ask why Pat can't simply take care of Jim. They note that she has had a career of her own that has required her to go into the office at times he needs help. Jim also said he wants Pat to just be his wife and not rely on her constantly. Still she helps him with his tasks when they absolutely can't find an aide.
All of these factors make recruiting and retaining good aides 'damn near impossible,' Pat Piet said.
Louis Esposito is the executive director of ABLE NH, an advocacy and support group for people with disabilities. He said the struggles the Piets face are common in the disability community.
'They are making below what you would make at Dunkin' Donuts or Target with the exceptionally high skill level that's required, and patience that's needed,' he said. 'It's been very challenging to find anybody.'
Esposito said he's heard from people with disabilities that they've resorted to paying aides out of pocket to supplement low wages. This presents financial hardship and is only possible for wealthier families.
'If you hire somebody at $14, $15 an hour and they're there for a couple of years, you want to be able to give them a raise or more income or you lose them,' he said.
Part of the reason wages are so low for these roles centers around Medicaid reimbursement rates. Medicaid covers this care by reimbursing agencies who provide it. However, the rate at which they reimburse is determined by the state and federal governments and it can vary greatly depending on the type of care provided.
However, Esposito feels it's more than just financials. He believes the role deserves more respect and 'should be treated as a profession.'
'Right now, it's kind of a job,' he said. 'It has to be treated as something more powerful, and it's not really respected as a long-term profession.'
Esposito formerly worked with Opportunity Networks, which provides services to people with disabilities.
'We would hire and support DSPs,' he said. 'They would get trained, you'd put a lot of energy and effort, and they would be fantastic. And then they want to start a family, or they want to proceed with their education. They want to advance. And there's not a lot of room for growth. So I think until we start respecting this as a field that needs to be given the right respect, I think we're gonna keep seeing this.'
North Country Independent Living, based in North Conway, operates several homes for people with developmental disabilities and those dealing with the effects of traumatic brain injuries. Patsy Sherry owns and operates the agency with her husband, and they hire DSPs to care for their residents.
'I spend all this money on Indeed,' she said, referring to the job-listing website. 'And I'll schedule interviews, and a lot of times people don't even show up. They don't even bother to call to say they're not coming.'
Gov. Ayotte, the budget, and Medicaid reimbursement rates
Gov. Kelly Ayotte has made services for people with disabilities a key aspect of her agenda during the state's ongoing budget process. Her budget proposal included $1 billion over two years to ensure there's no waitlist for anyone trying to receive services for developmental disabilities at facilities like North Country Independent Living or Opportunity Networks.
However, when it became their turn to amend the budget, state lawmakers in the House made significant cuts to that and included a provision that reduced Medicaid reimbursement rates by 3%, which could lower DSP and PCA wages. After public outcry and Ayotte's urging, the Senate Finance Committee reversed those cuts. Once the full Senate approves its version of the budget, the two chambers will enter committees of conference to hash out the differences between their budgets, including this Medicaid cut. It's unclear whether the House will agree to reverse this cut during that process.
While she disagreed with the House's cuts to the reimbursement rate, Ayotte said she doesn't think a rate increase is on the table for this budget cycle. She said her priority, during this difficult fiscal environment for the state, 'was to protect eligibility, to make sure that we don't have a disability wait list.' She said the current rates are based on a rate study, and said that she wants to reevaluate those rates in the next budget cycle for state fiscal years 2028-29.
'People with disabilities was one of the priorities in my budget,' she said. 'And it will continue to be a priority of mine.'
Operating in rural northern New Hampshire means there's a smaller population to pull from when hiring, she explained. She said they've recently increased their starting pay to around $19 an hour. A couple years ago they were paying between $13 and $14 per hour. They now have about 75 employees and are short four full-timers.
'The people that we do get, unfortunately, aren't — I don't know how to really say this — they're not up to par as what we were used to,' she said. 'I'm interviewing people that don't even have GEDs. … Some people that we've had come in don't even have computer skills, and they're struggling to get through the basic training.'
Fortunately, she has employees who appreciate overtime pay so they help cover gaps left by vacancies. She and the rest of management also step in sometimes.
George Barrett is the associate director at Opportunity Networks, which offers day programming for people with developmental disabilities in Nashua, Bedford, and Amherst.
'Forty years I've been doing this, there's always been a workforce issue,' Barrett said. 'It's never been as bad as it has been since COVID.'
These challenges, which he also attributed to low pay and the challenging nature of the job, mean they sometimes don't have the staff to accept new participants, he explained. This means families remain on their waitlist. He noted the majority of their families are middle class, and by not having their loved ones in services, they often must forgo work opportunities to care for them.
'We've had staff that have started and have lasted two weeks, and then, due to the demand, have left,' he said, 'because they're seeing the stress and duress that they're under.'
Barrett said Medicaid comprises nearly 100% of their income, and around 80% of the Medicaid dollars they receive goes directly to staff. In January 2024, when they received a 7% increase, the last time they did, the entirety of that money went to DSPs' paychecks, he said. Still, that hasn't kept up with inflation or market changes. He said he's reached out to state and federal leaders urging them to approve more rate increases, because their current rate — which he called 'not even a livable wage' — makes it challenging to compete with other industries for workers.
'In many cases, it's almost desperation,' he said. 'You look at who can you take?'
He said this leads to lower-quality candidates, which 'opens the door' for abuse and neglect.
'We haven't seen that here,' he said. 'But, yes, it does. The individuals we work with are, in my opinion, the most vulnerable citizens in the state of New Hampshire. Exploitation is there, because in a lot of cases, they can't speak up for themselves or defend themselves.'
Barrett called it 'a catch-22.'
'You try your best to vet individuals,' he said. 'But at the same time, too many vendors are kind of desperate to get staff, to get individuals in service.'
Still, Barrett praised the staff he does have.
'Without them, services like ours do not exist because they do 100% of the work in terms of working with the individuals,' he said. 'In essence, individual lives with disabilities are more so in the hands of our direct support professionals. So I can't give enough credit. And again, I will say they are definitely underpaid.'
While people report struggling to hire DSPs and PCAs nationwide, New Hampshire's tight labor market makes the problem especially acute. The U.S. Chamber of Commerce ranks New Hampshire as having the most severe worker shortage in the country. As of 2023, the most recent data available, there were only 28 available workers for every 100 open jobs in the state.
Phil Sletten, an economist and research director at the New Hampshire Fiscal Policy Institute, pointed out that the size of the labor force — the number of people working or looking for work — still hasn't recovered from the COVID-19 pandemic. In 2019, the labor force was about 777,300 people, but in 2024 it was roughly 771,600.
'So there has been some labor force recovery from the low point after the pandemic, which was in 2021, but that labor force recovery has not been complete,' Sletten said.
This makes it difficult to hire for any job in New Hampshire. As for DSPs and PCAs specifically, Sletten concurred that low pay was hurting the ability to hire.
As of June 2024, home health and personal care aides — which includes people who take care of anyone, not just those with disabilities — in New Hampshire earn a median hourly wage of $17.27, according to New Hampshire Employment Security. Across all professions, the median wage is $25.01.
'Home health and care aides who may be facing either a financial constraint at home or a more complex environment relative to their own position may be looking for other opportunities,' Sletten said. 'And with a higher median wage among all occupations in the state, there may be other opportunities that offer them more compensation.'
Kathy Bates, who lives in her own house in Somersworth and has cerebral palsy, is another who struggles to hire DSPs, which are vital to her day-to-day life.
'Without them, I couldn't work,' Bates said. 'I couldn't even get out of bed.'
Bates has DSPs come help her a few times a day. They come in the morning to help her get out of bed, shower, dress, get into her wheelchair, and do other tasks. They come again in the afternoon and at night as well. They keep her 'connected to the community' by allowing her to get out of her house.
'I really couldn't live a good life without them,' she said. 'I'm not saying I need help with everything, but I need to get out of bed, I need to get my day started before I can make anything happen.'
Bates arranges to hire these aides herself, which takes a long time. She often has people call out sick at the last minute, she said, and has to find coverage when they want to take time off. She keeps a list on her bedside table with names of people to contact if someone calls out the morning of.
'Managing personal care is a full-time job sometimes,' she said. 'You want to be a good boss, but I have to bug people. I don't like bugging people.'
She said this inconsistency means many people with disabilities are afraid to get jobs because they worry they won't be able to get out of bed every day and have someone to drive them to work.
'There's this huge untapped workforce out there,' she said.
Bates has a few methods of hiring aides. Sometimes she puts ads on Craig's List. Sometimes she uses agencies like Granite State Independent Living and GT Independence.
'Coming through the door is like 50% of the interview,' she said.
She often sets up interviews and they never show up. Additionally, many of the candidates who inquire are elderly, which is a problem because it's a physically demanding job. After someone is hired, there's a weekslong process of paperwork for Medicaid, background checks, and other administration. Still, she's grateful for her aides.
'I'm glad I do have the women that work for me,' she said. 'I'm really glad that they're as flexible as they are.'
Bates is also active in advocacy within the disability community. She grew up before the Americans with Disabilities Act, so she remembers what it was like to have a disability before ADA protections, and she wants to continue making the world a better place for people with disabilities. To do so, she leads trainings for medical professionals about working with people with disabilities at the UNH Institute on Disability. She also writes a blog on disability called 'From Where I Sit.' And she's an accessibility and inclusion specialist on the Self Advocacy Leadership Team, a task force within the New Hampshire Council on Developmental Disabilities that seeks to find solutions for problems facing the disability community.
The work gives Bates a lot of joy and fulfillment. She emphasized how none of it is possible without her caretakers.
'I can't change the world if I can't get out of bed,' she said.