HARTFORD, Conn. — Zoe Benjamin has extremely serious intellectual disabilities.

“My husband and I took care of her until three years ago when he died,” said her mother, Adrian Benjamin. “She’s nonverbal. She needs help with all aspects of personal hygiene. She’s very physically active. She runs around like a crazy girl, but she has no safety awareness. So she would run in the street, touch the hot stove. Can’t be safe alone in the bathroom, in the bathtub or anything.”

Zoe Benjamin is 27. Adrian Benjamin and Zoe’s father, Steven Horowitz, took care of her until Horowitz died three years ago. Then, Zoe Benjamin was able to get into a group home in Wethersfield run by Harc of Hartford, one of the social service agencies that receives money from the state Department of Developmental Services.

“We were suddenly designated to be an emergency after my husband died. He had cancer,” said Adrian Benjamin, who lives in New Britain. “And so she got an emergency group home placement.”

The Benjamins were fortunate. The waitlist for placement in group homes stood at 710 at the end of the 2023 fiscal year, according to Gov. Ned Lamont’s office. That number is a significant reduction from the 934 the previous year.

The number of families waiting for placements had been growing since 2019, when the waitlist stood at 759. The most recent high was 1,015 in 2017.

Low pay keeps beds empty

The CEOs of Harc and other agencies say a major problem in getting more people like Zoe Benjamin into group homes is the low pay for their staff, which stands at $17.25 an hour.

“I have four group homes that today are sitting vacant,” said Barry Simon, CEO of Oak Hill in Hartford, who has led such agencies for 32 years.

“I could be creating jobs and taking people off the waitlist if the state wanted to pay reasonable wages. But they don’t,” he said.

“To find employees for 17 bucks an hour, who are wanting and willing to do personal hygiene for people, change adult diapers, give people showers and bathing and do the food prep and understand the medical needs and the medications that are needed. These are tough jobs. They’re skilled jobs and people have to be dedicated to doing that.”

‘A very sad waiting list’

Zoe Benjamin was evaluated as a seven on the eight-point level-of-needs scale used by DDS to determine where someone falls on three waitlists: emergency, urgent and planning, Adrian Benjamin said. She said there are more than 100 people on the emergency list.

“The law mandates school for people with disabilities till they’re 21,” she said. “But there’s no mandate after someone turns 21 for any services at all. So that’s why there’s a huge waiting list, a very sad waiting list for people. I mean, if my husband hadn’t died, we’d still be waiting, even though I’m 71. So once you’re in a true emergency situation, like a desperate emergency situation, then you can get services.”

‘Dealing with human lives’

Tamara and Andrew Selinger have two children with fragile X syndrome and autism: Brian, 30, and Jodi, 33. Brian is in a group home run by the Jewish Association for Community Living of Bloomfield, but Jodi is not, and Andrew Selinger is no longer able to provide as much care since he had a heart attack three years ago.

Both of the Selingers’ children also are listed as seven of eight on the level-of-need scale.

“The care needed for our daughter is supervision 100%, for safety,” Andrew Selinger said. “She does not have safety awareness in the case that if there was an emergency, a fire, she would not know how to respond. She would freeze. She would not be able to communicate well. … She needs help with basically all of her daily living activities.

“After I had a heart attack and realized that I have some issues, we asked to be put on the urgent list,” he said. “That’s been three years since then. So it’s very concerning that there’s a moratorium on group homes when the need exists. The other issue, it’s not just the residential placement. It’s basically the funding for the providers for the people, our lifeline.

“We’re dealing with human lives. We’re dealing with people that will have trauma as a result of these decisions. And that’s what it’s all about to families.”

‘Human guardrails’

While the personal care aides in group homes make $17.25 an hour, compared with the state’s $15.69 minimum wage, and Lamont’s fiscal 2025 budget keeps their pay at that level, the governor recently negotiated a contract with the state’s largest health care union that will bring home health aides’ pay to $23 an hour in fiscal 2026.

The contract with New England Health Care Employees Union, SEIU 1199NE, brings a 26% increase over three years, as well as longevity bonuses, expanded paid time off and reduced health insurance costs.

“They are independent contractors doing the same work in people’s homes,” Simon said. “They take care of people with intellectual developmental disabilities, they take care of people who are aging, they take care of people who are medically fragile, but they do it as independent contractors.”

Adrian Benjamin said the aides in the group homes should be paid equally to the home health aides, but the governor’s frequently cited “fiscal guardrails” — mostly spending and borrowing caps — are hurting those in need of services.

“I consider the staff who take care of my daughter human guardrails,” she said. “They’re the ones that keep her from touching something hot on the stove. They’re the ones that keep her from walking outside and into the street. … So the state depends on the human guardrails to take care of people with disabilities, the homeless. There’s a lot of unmet needs.”

Limitations and constraints

In an email, Lamont spokesman Chris Collibee said, “Governor Lamont and the Department of Developmental Services (DDS) acknowledge that workforce limitations and real estate constraints within our provider community have indeed posed significant hurdles, slowing our efforts to match individuals with their appropriate and preferred residential settings at the rate supported in the enacted budget.

“However, it’s important to note that Governor Lamont and his administration are fully committed to improving the lives of the residents of our state and reducing the DDS residential waitlist through various initiatives. These measures, though faced with obstacles, have begun to yield positive results, showing a promising trend in waitlist management.

“The administration’s vision is to see all Connecticut residents we support as valued contributors to their communities being able to utilize their personal strengths, talents, and passions. Any increase in funding must fit in a balanced budget that adheres to all statutory and constitutional caps.”

Collibee also pointed out initiatives for placements with caregivers over 65, those requesting community companion homes, supportive housing and others, as well as an $85 million increase in wages for personal care assistants in fiscal 2023.

17,000 served by DDS

Jordan Scheff, commissioner of the Department of Developmental Services, who administers a $1.5 billion budget that serves 17,000 people, said, “There are certainly some areas where we struggle and have struggled, and one of those areas has been historically the waitlist. Although we have made some inroads there in the last couple of years, and are happy about that, certainly it’s not at the brisk pace families waiting for supports would like, and I certainly understand that.”

He said supportive housing and other ways to integrate people into the community have helped those who are able to live more independently, if not families like the Selingers and Benjamins.

But creating new group homes is a slow, expensive process, Scheff said.

“When the legislature generously supported House Bill 5001 last year, I said to them that they could dump buckets of money at my feet, and it wouldn’t allow me to just immediately eliminate the waitlist,” he said.

“Eliminating the waitlist is a multi-year process, in part because, even if we just assume there was this bucket of money to do so, we need the staff to provide the supports, we need the buildings to provide the facilities, the actual physical space for people to live, and … right now we’re in the midst of a nationwide workforce crisis in multiple sectors, but certainly impacting the (intellectual developmental disability) community.”

Building new group homes requires following local and state regulations, zoning issues, taking out loans and other issues, Scheff said.

“My agency and my staff, from top to bottom, work every day to try and improve the lives of people in this state with intellectual disability,” he said. “And they do so tirelessly and through the pandemic and now through this, the unwinding side. I’m thrilled with the work that they do. I know that it’s not always meeting the expectations of everyone involved. … but we are invested in trying to improve the situation for everybody currently receiving services.”

Equity and inclusion

Barry Simon at Oak Hill hears the families’ expectations daily and he questions the priorities of the governor and the General Assembly, which will be taking up Lamont’s midterm budget this session.

“It is really hard to have parents who desperately want services to not be able to access them, and this is absolutely an access issue when it comes to our policymakers prioritizing our services and the kinds of services that we provide,” he said.

“Having been at this for 32 years, there’s always some sort of reason why we’re not a priority for sustained rates that allow us and our employees, both for the services that we do and for the jobs that they have, to be a part of success in our economy.”

He said politicians talk about equity and inclusion for people, “and the people we serve have been fighting for years for equity and inclusion when it comes to embracing and enjoying all that society has to offer. … And yet the institutional discrimination that just continues to be perpetuated is something that they don’t hold themselves to be accountable for or to.”

He said agencies haven’t had rate increases for room and board for 10 years, in addition to the lack of pay increases for the personal care assistants.

“I can’t tell you how many elderly parents who still have kids living at home because they love their kids and they have wanted to be there but are now at a point where they can no longer lift them in or out of a bath or can’t help them to move out of a wheelchair into a bed,” Simon said.

“And yet, we’re creating waitlists for services because of the rates that are paid for those services,” he said.

Staff vacancies

Russell Coleman, CEO of Harc, said the waitlist could be shortened without building new homes. Raising staff pay would allow him to care for more residents.

“Here at Harc 24/7 group homes, we have a 45% vacancy rate for our staff, 45%,” he said. “That’s really hard. It’s very difficult because when you start talking about providing care, you’re short-falling people with recreation, with those fun activities, going out and doing things, and it’s really focusing on more of the health and safety at that point because you have limited staff.”

He said he relies on people working overtime and hiring contracted staff to fill the gaps who “just don’t know our individuals well because they’re only in and out. So it’s really difficult.”

Coleman said many people would rather work at a department store and make the same money with less responsibility.

“Our employees are just overworked. They’re working 60-85 hours a week and have a second job on top of that, just to make ends meet here in Connecticut. … It’s just a travesty,” he said.

“We should do so much more by them because it’s really a population that we serve,” Coleman said. “They are no different than anybody else. They just need extra assistance … just to have a meaningful day, and if we’re not able to provide that, I mean, it’s really disheartening.”

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