Idalia Villafañe’s intellectually disabled daughter regularly steals from stores, her mother says, forcing Villafañe to do all their shopping online. The 32-year-old will take the bus two towns over to watch the house of a young man she became obsessed with years ago. Medical records show that she’s on heavy psychiatric medication, that she’s ended up in emergency rooms numerous times, and has a history of aggressive behavior.
Yet despite this, Villafañe says she receives no assistance from the state Department of Developmental Services. The reason: her daughter’s IQ score is a few points too high.
The department’s use of IQ as a measure to determine whether or not a young adult will receive state disability services has recently come under scrutiny. Currently, a person must have an IQ of below 70 to qualify.
“It’s an arbitrary number, if you will,” State Rep. Lucy Dathan, D- New Canaan, told CT Examiner. “We are one of the only states in the country that have this 70 IQ limit. But I have heard from so many families that come and tell me ‘Hey, my son has a 140 IQ, but doesn’t know how to brush his teeth.’”
Dathan is one of the main authors of a law the state legislature passed last year that requires the state to study whether IQ should remain part of the definition of an intellectual disability.
A report is due to the state in January 2025. But in the meantime, parents like Villafañe are left without any services for their children, often forcing them to make significant financial or personal sacrifices.
Villafañe said that when her daughter was denied services, she wrote letters to the Commissioner of the Department of Developmental Services, to the governor and to U.S. Senator Richard Blumenthal, D-CT, asking for help, to no avail.
Villafañe said that she tried to get a job for her daughter through the Bureau of Rehabilitative Services, a state agency tasked with helping disabled adults find employment. But her daughter’s medication caused her to gain weight — over 150 pounds, Villafañe said, making it difficult for her to stand for long periods of time. She’s also resistant to the idea.
Instead, Villafañe said, her daughter has ended up in the hospital and in courts, where, according to Villafañe and court and medical records, the young woman was deemed mentally incompetent. Villafañe said her daughter needed to be in a secure group home, otherwise, she would leave and return to her mother.
“[My daughter] is going to get on the bus and she’ll be right back at my house, and God knows what she’s going to do for me putting her [in the facility],” said Villafane.
“It shut a lot of doors for him”
Villafañe is not the only parent who has struggled because their child is just above the IQ cutoff. Lisa Baker said she had a similar experience with her 23-year-old son, Frankie.
“I think he deserves to have DDS [services]. I think that could open up a whole new world for him. Instead, he’s home doing nothing. Happy as can be, don’t get me wrong, but it shut a lot of doors for us,” she said.
Baker said that after Frankie was determined to have too high of an IQ to qualify, the state referred him to the Bureau of Rehabilitative Services. He’d done some jobs during his transition program, like running the coffee cart at a Walgreens distribution center, but his severe anxiety prevented the bureau from getting him any type of employment.
John Flanders, a special education attorney and president of the advocacy organization SEEK, said he tells his clients whose children test at an IQ under 70 that they should do everything they can to hold onto that score.
“If I have a kid who’s got a 69 on one of those tests, part of [my] advice is clinging to that like grim death. Don’t ever let them take another test,” said Flanders. “Let’s face it: even the people who invented IQ say it’s a stupid measure for things like this.”
Kevin Bronson, director of communications, legislation and regulations for the Department of Developmental Services, told CT Examiner in an email that the agency determines eligibility for services “through a clinical review of various documentation relating to intellectual functioning and adaptive behavior,” including IQ test scores. Bronson also cited a Connecticut state law requiring that individuals receiving services from the department meet certain criteria, which includes an IQ at or below 69.
Kari Sassu, director of strategic initiatives for the Center of Excellence on Autism Spectrum Disorders at Southern Connecticut State University, said the use of IQ tests is also problematic for autistic people. She said that the original IQ test tends to be highly skewed toward verbal skills, and that people with autism often have trouble communicating in that way.
She also noted that autistic individuals have “spiky skills” — they may be very accomplished in some areas, but have serious limitations in others. This can translate into having a high IQ score, but it doesn’t take into account other challenges, like functioning in social environments and the ability to navigate unpredictability.
Similarly, Lisa Jones, the career and transition services director at Benhaven, a private nonprofit school and career transition program for young people with autism and developmental disabilities, said that the problem with the IQ test was that it doesn’t look at the “whole individual.”
“What they don’t take into consideration is behavioral issues, emotional, any of the mental illnesses — none of that gets factored into those decisions,” said Jones. “So while it may look like cognitively they’re higher, all those other factors make it debilitating for them.”
“It’s a travesty”
In the case of autistic children, the state is able to offer a waiver that will allow young people with autism to qualify for services regardless of IQ. But parents who have applied told CT Examiner that the waiver has an long waiting list and can wait years to get approval.
According to a report from the Department of Social Services, there were just over 2,000 people on the waitlist in December 2023. Between January 2022 and December 2023 — a period of just under two years — about 260 people were moved off the waitlist and assigned a case manager.
Carol Adducci, the parent of a 28-year-old on the autism spectrum, said that her son Matt, like Baker’s son, was right on the edge of the department’s IQ cutoff, although he also has a speech impediment and a communication disorder. But Adducci said that after she requested services twice and ended up at a hearing with the department, the department denied her son services.
When she wrote to the then-commissioner of the department, the commission suggested she apply for the waiver. At the time, Matt was 18 years old. By the time the waiver was accepted, he was 28.
Within the decade that Adducci waited, she and her husband paid for a day program out-of-pocket, at a rate of about $150 a day. Matt went once or twice a week, but the cost of the program became too much, and they began to bring her son only occasionally, on the days he wasn’t working. She said she fears he’ll lose his spot to someone who wants to attend full-time and has state funding to support it.
“It’s [a] travesty, because if they’re not working or they’re not doing something … you have to kind of fill in the gaps. You don’t want him sitting here all day doing things, and he doesn’t want to be home either,” said Adducci.
After looking on Indeed.com, Adducci was able to find Matt a job working 20 hours a week at Meadow Ridge, an assisted living and independent living facility for seniors in Redding. She said that working more hours would jeopardize Matt’s Medicaid and disability benefits. The day program was meant to serve as socialization on his days off.
“It’s hard to get into any kind of program or social activity unless you’re hooked up to DDS,” she said.
Transportation has also been a challenge — Adducci quit her job at a daycare center four or five years ago so she could drive her son back and forth to work. And having the autism waiver approved, she said, hasn’t helped with that.
So far, Adducci said, the waiver hasn’t done much. The department won’t provide housing, she said, and it won’t provide transportation. They have a community mentor who comes for four hours a week to go out with Matt, and she has been looking for someone to work on life skills with him, but it’s been difficult to find qualified workers. She said she often has to provide direction to the aides and make suggestions about activities, rather than them taking initiative.
“[DDS] kind of tell you [to] hire your own person, and that’s hard to do, too. It’s hard to find somebody qualified that knows about autism and doesn’t just kind of look to you to say ‘What do I do?’” she said.
Beth Katten, whose son, Gary, is on the autism spectrum, described a similar challenge trying to find help with her son.
“They could give me all the money in the world, the state of Connecticut, but it is a lot of work,” she said.
Katten said there was an in-home support program through DDS that she applied for, which provides a list of agencies that will help with staffing. But said she’d been refused for the program because “they [DDS] felt we weren’t urgent enough.”
Bronson said that the Department of Developmental Services contracts with a clearing house called Rewarding Work, which families can use to help them find staff. They also rolled out a program in May that allows parents and guardians to receive compensation for serving as caregivers.
Nancy Taylor, parent of a 22-year-old with disabilities, said she’d also struggled finding someone who could stay with her son during the daytime hours. She noted that it was difficult to bring strangers into her house, particularly since her son would not be able to tell her if something went wrong.
“So you’re really trusting someone that you don’t know at all is going to not steal stuff from your house or hurt your child. And that’s a huge leap to be able to take,” Taylor said.
“Glorified babysitting”
Parents also told CT Examiner that they were reluctant to place their children in day programs, and questioned their quality.
“In many cases, they’re glorified babysitting,” said Taylor. “I hate to say it, it’s sort of a dumping ground in many respects for people who don’t know what else to do with their adult child with disabilities. And a lot of parents I know are kind of settling for that, which they shouldn’t do because these kids really can have a much more fulfilling life and could really be much more productive members of society.”
Maggie Hunter, whose daughter is in her final year at the Farmington Transition Academy, said she wants her child to have the opportunity for meaningful employment, even if it’s just occasional clerical work.
“I’ve been out times where I’ve seen day programs at a Cumberland Farms or something, and I just sort of shake my head and I think, ‘Oh my God, I can never die,’” she said. “I want to see more than her just going into a Cumberland Farms and buying a piece of candy and acting like that was a big day out or something.”
Hunter said she wanted to see her daughter build skills and relationships.
“I want her to have a meaningful life and not just day by day waiting for the weekend,” she said.
A recent report by the state’s task force on special education underscored the “profound weakness of postsecondary adult programs in Connecticut and the lack of them.”
“Connecticut has a weak infrastructure to serve students as they age out of special education, which is why so many adult day programs have closed or have long wait lists,” the report read. “More and more families are being encouraged to plan and manage their child’s own individualized programming with resources they find after they graduate.”
Stephen Morris, the executive director at Favarh, which offers various programs for people with disabilities, said he believes the key for a good day program is to base it in the community.
“If you don’t have that as a primary focus, people do stay indoors in a building all day long. And I don’t think that’s good for anybody, including our staff,” said Morris.
Morris said Favarh’s day programs have a weekly or monthly schedule where they try to bring people outside on a daily basis. He said they also bring community providers — like pet therapists, horticulture therapists and music therapists — into the agency.
“I think by having that focus, we do a better job than many in terms of making the day program experience an engaging one,” he said.
But day programs like the ones Favarh runs are also struggling with a lack of staffing.
State data shows that 61 people are waiting on employment opportunities and day programs as of March 2024.
Lisa Jones of Benhaven said that a lack of funding from the state contributed to a shortage of slots.
“I think [funding for day programs] is going up a couple of dollars, but the problem is it’s so low that it still doesn’t make it worthwhile,” said Jones. “There’s been a lot [of day programs] that have closed because financially it’s hard to make it happen. And so then, therefore, the pool is smaller and smaller for people.”
“Not something that everybody can do”
A provision in the 2023 law that Dathan helped author requires a group of state agencies, headed by the Chief Workforce Officer, to create a Human Services Career Pipeline, with the goal of increasing the number of people going into careers in human services, and to recommend salaries and working conditions that would incentivize these workers to remain in their positions.
Morris said he thought being able to offer a higher starting salary would help attract more people. He said he’d like to raise Favarh’s starting salary – about $20/hr – to $25/hr. He also proposed a certification program for people who work directly with disabled clients, to give the job a more “professional stature.”
But Morris also said that despite being able to offer potential employees more money than they ever had before, it was nearly impossible to find people who were qualified to work at the organization.
“Qualified means some experience with the population that we work with — and, obviously, a real interest and enthusiasm and working with this population,” said Morris. “It’s not something everybody can do, or that everybody wants to do.”
Sassu said that in her work on the state’s autism spectrum advisory council, she’d been involved in discussions around training and a possible certificate program for people who work with disabled individuals.
“Even if someone has a bachelor’s, master’s degree, even if they have a doctorate, they don’t necessarily understand the uniqueness of this population and what it takes to be successful with them. And I will say the counterpoint to that is there are some people who have zero degrees and are incredibly adept at navigating through the challenges of this population,” said Sassu.
The goal, she said, would be a possible partnership with a university to create a low-cost program that would indicate to a parent or relative that someone had knowledge or skills specific to caring for people with disabilities.
State Rep. Jay Case, R-Winchester, who also worked on the law, said that it was difficult for the people who work in the human services field to find housing and transportation.
“It is so heart wrenching because some of the people that take care of our most vulnerable people are on the lowest pay scale,” said Case. “And they’re taking care of our most vulnerable people.”
Need for a “checklist”
The result of the lack of day program slots, questions about quality and difficulty finding qualified workers in or out of day programs is that the young people are often left to languish at home, unable to leave their parents’ house and without any activities. Parents feel the pressure of having to figure out for themselves how to find the necessary services to meet their child’s needs.
Most fret about what will happen when they die, and their child is left alone.
This is also true for young people who have severe physical disabilities, but don’t qualify for state services.
Lisa Allyn said her son Tyler, who is 27 and has spina bifida, began having spinal fusion surgeries when he was in 7th grade and remained home-bound for the rest of his school career. She said the district sent some home tutoring for him, but it was basic. When he was able to attend a post-high school transition program, he went once a week, and received only counseling.
“Tyler says, ‘I really didn’t graduate high school.’ He feels that he didn’t because they did not give him what everyone else gets,” Allyn said.
Allyn said that they did receive money through the Affordable Care Act for a Personal Care Assistant — a role she fills herself. But she’s aware that in the future, Tyler will need more assistance with independent living and finding appropriate caregivers.
“If I passed away, I told my other son, Christian, just move to another state because there wouldn’t be any services for [Tyler],” said Allyn.
What parents say they really want, ultimately, is guidance. Regardless of whether their child will or won’t qualify for state services, parents said they weren’t made aware of what would be available for their children after they graduated from the school system.
“There was never anybody that sat down and said, ‘Here’s a checklist,’” said Jeanne Buckley, who has a 28-year-old autistic son. “When a young person graduates at 22, they refer to the fact that they fall off a cliff. And I think there’d be a lot less falling off that cliff if there was kind of a checklist or a walk through with parents.”