When HB 5557 was first proposed last legislative session, it was intended to immediately replace Connecticut’s IQ-based definition of intellectual disability (ID) with a more comprehensive definition provided by the DSM-5. Before its passage, however, it was amended to give DDS officials another year to draft a report outlining recommendations for a new definition, an implementation timeline, and an estimate of the cost to the state.
“That’s disappointing,” said Kelly Glaze-Capuano, whose son, Alex, has been diagnosed with ID but denied DDS services. “DDS has been doing this for a long time, and if a lay person such as myself knows what the regulations are for the definition in other parts of the country, they should be well aware of the discrepancy between our state and others.”
At least 43 other states have statutory definitions of ID not predicated on IQ, while Connecticut’s current definition stipulates that a person must have an IQ of 69 or below to receive services. This means parents of disabled children can be denied eligibility based on a single IQ test, even if they have an overwhelming body of evidence that would otherwise show their child’s disability.
Jess Baylis is another mother whose son, Andrew, was denied eligibility due to a single IQ test score. Baylis and her husband, John, were denied eligibility, appealed it through DDS’s appeal process, and even appealed the determination through the Superior Court, to no avail. She described the process as “frustrating.”
“During our appeal, we had six different witnesses come up who’ve known him since he was six years old, with really compelling arguments, saying, ‘This is a young adult with an intellectual disability, who absolutely needs help,'” said Baylis. “It was a psychologist who’s known him since he was five or six years old, myself, a behavioralist who’s been with him for maybe six or seven years, his special education teacher for four years, his aide for four years, and his transition specialist for three years, and every single one of them said, ‘He absolutely has an intellectual disability and needs this’, and they just completely ignored it.”
Both Glaze-Capuano and the Baylises told Inside Investigator that there is zero doubt their children have ID, and that their diagnoses have been backed by years of assessments, testing, and psychological evaluations. Glaze-Capuano said that Alex has “significant cognitive disabilities,” and “limited to no ability to work a regular job.” She said that if one spoke to him for “five to ten minutes,” they would “probably begin to understand that he truly does have an intellectual disability.” Jess Baylis said Andrew has “about a third-grade level” of reading, writing, and math.
“He plays in a room with trucks and Play-Doh as a 22-year-old, and is very happy doing it,” said John Baylis. “It just seems crazy that the government thinks he can sustain himself with a job; he can’t.”
The issue of Connecticut’s statutory definition of ID has become an increasingly hot topic in recent years. In January 2024, a lawsuit was filed by Catherine Grant on behalf of her intellectually disabled granddaughter, Cathrine Mayo, who was denied DDS eligibility. Representing them was Special Education Attorney Andrew Feinstein, who also testified in support of the bill, calling Connecticut’s current definition “antiquated, [and] scientifically unsound.” The state ultimately agreed to a settlement in March 2026, but Feinstein told Inside Investigator that he is “fairly comfortable that the constitutional challenge” posed during the case is “valid.” Feinstein also said that the state has no shortage of other families who could be made future plaintiffs, and no shortage of opportunities for a court to render DDS’s current eligibility standards legally impermissible.
“We are working on rounding up additional plaintiffs for another lawsuit,” said Feinstein. “The idea of the lawsuit is to basically be able to continue to say to the legislature, the governor, or whoever, ‘You guys got to fix this!’ because otherwise, you know, a court’s going to tell you to do it.”
Feinstein and other advocates envision a future model by which services are provided based on levels of need, not by diagnosis. He argued that IQ is “a relatively good predictor of academic performance,” but that “academic performance is a terrible predictor of the ability to live and work independently.”
“So, why are we using that as the determinant?” said Feinstein. “It’s just insane the lack of connection between the two.”
Knowing the extent and immediacy of the issue, why did lawmakers choose to amend the bill? Feinstein, who communicated with other policy advocates and proponents of the bill, said that money is the primary issue.
“The state cannot fund the people now eligible,” said Feinstein. “There’s no doubt that changing the definition will substantially expand the eligible pool, and we’re not going to be able to serve all those people.”
During the bill’s public hearing, DDS Commissioner Jordan Scheff testified in opposition to the bill, saying DDS “cannot support revising the definition of intellectual disability at this time,” due to short staffing and an inability to project how it might increase service and budgetary demands. Despite DDS’s public opposition, Feinstein said he believed that the Office of Policy and Management (OPM) and the Governor’s Office sounded the original bill’s death knell.
“I also, in terms of litigation, got the really strong sense that the folks at DDS basically agree that the current system is flawed and would like to move to a better system,” said Feinstein. “I think our real adversary here is the Office of Policy and Management, and the Governor’s Office, who say, ‘If you move to a different system, it’s going to cost a boatload of money to do so’, and you know, depending on how you define a boatload, I’m not sure they’re wrong.”
The Office of Fiscal Analysis (OFA) reported that the original bill would result in “an indeterminate, but potentially significant” cost to the state and DDS, “contingent upon the interpretation and implementation,” of a new ID definition.
“For example, the new definition may allow DDS to include an extension of IQ scores based on the standard error of measurement in testing,” the OFA wrote. “This may allow DDS to identify eligible individuals with IQ scores up to 75, which would represent an additional 2.5% of the population, or a 132% increase in individuals eligible for DDS services and programs.”
DDS’ budget in 2025 was $226.18 million.
Feinstein said the issue goes beyond state-level funding, however, as the vast majority of state disability services are funded by Medicaid, through Home and Community-Based Service waivers granted by the federal government’s Center for Medicare and Medicaid Services (CMS). To get new programs approved by Medicaid, states have to negotiate agreements with CMS. If the eligibility is increased, so will the number of needed programs to provide to service recipients, programs that would require “the blessing of the feds,” as Feinstein put it.
“Frankly, what I’d like them to do is come back and say, ‘This is the type of proposal we have to make for the feds, we need legislative authorization to make this sort of proposal,'” said Feinstein. “Then, you know, we have to come back to the legislature to actually move forward what’s necessary to move forward, to amend the waiver.”
For parents like the Baylises or Glaze-Capuano, whose ID children are soon aging out of their public school districts, which are statutorily obligated to help provide them with disability services, the potential for a new definition to fiscally flummox the state is hardly reason enough to delay it any longer.
“It’s absurd,” said John Baylis. “The solution can’t be, ‘Let’s ignore it, let’s move on,’ because that doesn’t work.”
Both Glaze-Capuano and the Baylises explained that without DDS eligibility, their options are severely limited once their ID children become adults, as most job, life-skills, or day programs require applicants to have a DDS determination. Glaze-Capuano, who recently survived a stroke, said she wonders what might become of Alex when she and her husband pass if he can not receive eligibility. Her husband’s siblings, their closest family, are around the same age as them, and her other son, Max, is autistic as well, and she doesn’t think putting the responsibility on him would be fair.
“I have been recovering for the last two years, and I’m getting better every day, but you know, a time is going to come where I’m not going to be here anymore, nor will my husband,” said Glaze-Capuano. “When you start thinking long term about who’s going to take care of my child when we’re gone, it’s daunting. Absolutely daunting.”
Feinstein said that proponents of the bill went back and forth “working very closely” with Rep. Jillian Gilchrest (D-West Hartford), then-Chair of the Human Services Committee, on the bill, but that she told them there was “strong administration objection, particularly at the end of session.” Feinstein did not blame Gilchrest for the opposition she faced in getting the original form of the bill across, calling her a “bright and attuned, really first-class legislator.”
“So they came back with a proposal that was basically a nothingburger, and we wrote some sort of proposal that said, ‘Well, you have to do this you have to do these valuations, you have to do the study and report, and we had some deadlines in there, and they said, ‘Well, we can’t [include] the deadlines, but we can take the rest of it,’ and that’s that’s what we ended up with,” said Feinstein.
While the amended bill contains guidelines to ensure the DDS definition recommendations don’t rely upon a single IQ evaluation, it also empowers DDS to recommend its own implementation timeline, without any deadlines. The bill stipulates that the definition recommendations must “ensure no single test score or single measure” could determine eligibility, and that it be based on “the totality of relevant clinical, educational and functional evidence.” It also tasks the DDS Commissioner with recommending “a timeline for the transition to a new definition,” as well as “any approvals required by the federal government,” and estimates of both one-time and recurring costs of such a change.
Feinstein believes the change is only a matter of time, whether it comes through court order or new legislation. Feinstein said the legislature would “much rather, it seems to me, end up with a situation where they are part of the process of fixing it, rather than in a situation where some solution gets imposed upon them, and that’s always the risk with a court order.”
“There’s got to be a reason to make a change, and I’m not sure that the reason has been compelling enough till now,” said Feinstein. “That’s what we’re trying to do, make the reason compelling enough, so that change is gonna come.”
OPM Spokesperson Chris Collibee provided a statement on behalf of the agency. “The bill went through the legislative process, and we support its final passage as well as our agency, as they ultimately make recommendations for a thoughtful strategic implementation of any policy changes,” said Collibee.
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