Trumbull resident Edna Borchetta wants for her 20-year-old daughter Carriella what most parents dream of for their children: the chance to go to college, work and explore new opportunities.
But since Carriella lives with intellectual disabilities, she needs extra support to reach her full potential. Her parents offer all that they can so Carriella can lead a fulfilling life. The Trumbull Public Schools system has also supported Carriella’s complex needs throughout her schooling years, her mom said.
“I want her to be seen as the incredible, dynamic young woman that she is,” Edna Borchetta said. “With the potential to be a fully functioning member of society with the right supports in place, and that’s the key right there.”
Carriella is currently in the school district’s transition program for students between the ages of 18 and 22 who graduated high school but aren’t yet ready for college. Through this, she has a job at a bookstore and interacts with her neurotypical peers at Fairfield University.
Borchetta said her daughter loves being around young adults her age, even if she isn’t enrolled as a university student. The experience also shows Carriella what she could potentially do with the right supports in place.
“She has asked about … college and going away,” Borchetta said. “That’s not something that Dad and I can do alone. We need support in order to provide you with that opportunity. And that’s what we’re looking for.”
Connecticut’s Department of Developmental Services offers a range of resources for people with intellectual disabilities through waiver programs. But it utilizes a strict eligibility standard.
In order to qualify, a person must have a so-called “full scale” score of 69 or below on an intelligence quotient, or IQ, test. That score is composed of several subtest scores in areas such as achievement, memory and executive function. To be eligible, participants must also have evidence of deficits in adaptive behavior. Both need to be documented before age 18.
Carriella has had profound adaptive deficiencies since birth, her mother said. She has been diagnosed with an intellectual disability and with Williams syndrome, a genetic neurodevelopmental disorder.
She took several intelligence tests as a child. Her full scale IQ results range from 67 to 76. DDS deemed Carriella ineligible for intellectual disability services – twice.
“There’s no greater wasted resource on this planet than human potential,” her mother said. “That’s what this statute is doing. It’s wasting human potential.”
Carriella is not the only person the state has turned away due to the strict IQ cutoff. She and three other Connecticut residents with disabilities are collectively suing the state for denying services based on their IQ scores.
The complaint, filed Aug. 10, asserts that the state law governing DDS’s eligibility process violates the constitutional right of people with physical or mental disabilities to be equally protected.
Connecticut is one of only a handful of states that still rely solely on IQ scores to determine eligibility for services, according to the plaintiffs. They argue its approach does not align with current medical diagnostic standards established by the American Psychiatric Association.
DDS declined to respond to questions about the ongoing case. In an email, a spokesperson said the agency acknowledges its eligibility process has serious ramifications for applicants.
“DDS recognizes that eligibility questions can be deeply personal and consequential for individuals and families,” the email reads. “We are committed to treating everyone with dignity, listening to individuals and their families, and making decisions with care and respect.”
Edna Borchetta said not only was the extensive application process traumatic, but it was extremely disappointing to see the life-changing decision boil down to a test score.
“It’s so frustrating because my daughter is more than a number,” Borchetta said. “She is a beautiful human being who deserves to be looked at holistically.”
What the state offers to those eligible
The federal government offers several waiver programs to reimburse states for half of the cost of providing disability services and supports.
Available resources include access to case managers, paid family caregivers, jobs, day programs and supportive housing.
Connecticut requires residents to enroll and be found eligible. But being diagnosed with an intellectual disability is not enough; applicants must meet the state’s strict legal definition of the term.
To meet that criteria, a person’s IQ score must be at or below 69, which is two standard deviations below the average. This score must be recorded before the age of 18 to prove that deficits manifested during the developmental period.
If the score is above that cutoff, it doesn’t matter what other behavior deficits the person exhibits. If someone takes multiple tests and most full scores are within range, but one test returns a score above 69, they are still ineligible.
Jennifer Wheeler, an attorney with the Center for Children’s Advocacy who is representing the four residents in the lawsuit, said many people with intellectual disabilities are unable to receive services the state created specifically for them.
“These families go to DDS, they’re expecting to be eligible and DDS says no based on a very arbitrary and outdated definition of intellectual disability,” Wheeler said. “They say no despite a clinical diagnosis.”
How CT compares to other states
Most other states no longer consider IQ at all, or use the score as only one factor for consideration.
Luke Reynolds, another attorney on the case from the firm Koskoff Koskoff & Bieder, said in reviewing how other states determine eligibility, the legal team found it was common to permit higher IQ scores.
“They don’t rely on it as the gatekeeper to whether you’re eligible for services or not,” Reynolds said.
That approach more closely aligns with medical standards set by the American Psychiatric Association, Reynolds said.
The association’s Diagnostic and Statistical Manual of Mental Disorders is widely seen by clinicians and researchers as an authoritative source on classifying mental disorders.
In 2013, the association overhauled its classification for intellectual disability in the manual’s fifth edition. Not only did the official diagnosis change from “mental retardation” to intellectual disability (intellectual developmental disorder), it also defined three domains of adaptive functioning that should be analysed for deficits.
More recent revisions lay out that a full-scale IQ test score is no longer required for diagnosis, and may not accurately encompass a person’s intellectual functioning. Instead, it should represent one aspect of diagnosing intellectual disability, along with a person’s conceptual, social and practical skills, the manual notes.
“This was studied for decades to come up with better protocols for assessing and diagnosing intellectual disability,” Wheeler said, adding it’s “embarrassing” Connecticut hasn’t updated its criteria, given how long ago the changes were made.
Dr. Carol Weitzman, co-director of the Autism Spectrum Center at Boston Children’s Hospital, and an attending physician in the hospital’s Division of Developmental Medicine, said diagnosing intellectual disability requires documenting onset during childhood and evaluating three main aspects: intellectual, cognitive and adaptive functioning.
An IQ test can measure intellectual functioning, but testing well in that aspect does not determine whether someone can manage day-to-day tasks, said Weitzman, who is also a partner at the Connecticut Center for Developmental Pediatrics.
Examples include social and practical skills, literacy, self direction, personal care and managing schedules and transportation, she said. Connecticut’s strict cutoff pulls attention away from understanding a person’s functional impairment and support needs, Weitzman said.
“And that’s the whole purpose of this, isn’t it?” she said. “Figuring out who are the people who really need the DDS support to function in life.”
A touch-and-go effort by CT lawmakers
That systematic shift is not lost on DDS officials or state legislators. However, stakeholders point out that any change will come with a high cost, which some believe the state seems unwilling to pay.
Andrew Feinstein, another of the lawyers for the plaintiffs, is a long-time special education lawyer based in Mystic. He is also co-founder and legislative chair of the advocacy group Special Education Equity for Kids in Connecticut, known as SEEK.
“The current system is already underfunded,” Feinstein said. “An increase in eligibility is going to put more pressure on the governor and the legislature to appropriate more money for human services, and that’s not a bad thing.”
State Rep. Jay Case, ranking member of the Human Services Committee, has pushed for years to remove the IQ cutoff from state statute.
“People come in year after year and tell us how antiquated we are by just labeling somebody with an IQ,” Case said. “It shouldn’t come down to money when it’s somebody who needs something.”
But the state keeps hesitating due to the high cost of change, he said.
A law adopted in 2023 called on the Office of Policy and Management and several other state agencies to recommend a new statutory definition for intellectual disability and determine whether IQ should be used as a factor.
As part of the effort, the University of Connecticut examined the eligibility criteria used in every state and the District of Columbia. The study found that eight states, including Connecticut, relied on a singular score. Nineteen states factored in IQ as one aspect of eligibility, while 24 states did not use IQ scores at all.
OPM also hired a nonprofit organization called Altarum to fulfill the statutory requirements. Its November 2024 report offered two options for the state to revise the statute: removing the IQ score requirement; or reclassifying intellectual disability under the broader umbrella of developmental disabilities, which encompasses people with higher IQ scores.
Its report noted the change would have significant impacts on budget, eligibility workflows, enrollment processes and workforce, and recommended additional research and support to address each of them.
Lawmakers continued to debate the issue in 2025 and 2026, but stopped short of revising the state’s definition, instead passing a bill this year that calls on the DDS commissioner to create recommendations for a standard definition of intellectual disability that does not rely on a single test score or measure and aligns with medical standards.
Case said the amendment was made because there wasn’t any funding available.
“So they want to do more studying and find out what DDS can do. That’s the bottom line,” he said. “The definition should be changed.”
The legislative report is due on Jan. 1, 2027.
DDS confirmed in an email that it is talking with stakeholders about redefining the term.
Weitzman, the doctor who specializes in developmental pediatrics, said initial costs may be daunting, but leaving people without the ability to work or live independently will cost the state more in the end.
“Where do you want to pay for it?” she asked.
Feinstein, the lawyer, said Carriella Borchetta and the other plaintiffs shouldn’t be forced to wait for new recommendations to come. The state has been “admiring” the problem long enough, he said.
“Bringing this lawsuit puts more pressure on the legislature to do something,” he said. “We hope that this pressure is enough to get them to move beyond admiration to actual action.”
Carriella has two more years until she ages out of the transition program. Edna Borchetta worries that without access to state services, her daughter will end up sitting idly at home, like so many other children who have been denied.
“This is bigger than Carriella. It’s bigger than the four plaintiffs in this case,” she said. “It is really about all of those kids and all of those young adults who are being denied services that they really need to flourish.”
This story was first published Oct. 26, 2026 by Connecticut Public.