Ledyard advocate for those with developmental disabilities helps target reliance on IQ score
Apr. 15—For decades, the state Department of Developmental Services and its predecessor, the Department of Mental Retardation, have relied on IQ scores in determining whether people have an intellectual disability that qualifies them for assistance.
People with a score of 69 or lower are eligible for services; those with a score of 70 or higher are not.
Increasingly, advocates for those with disabilities have targeted the IQ standard as a poor way to determine eligibility. They say many people with high IQ scores have a profound need for DDS services, which include transportation, housing, home care, help finding and keeping jobs, and mentoring.
Now, they're hopeful a bill before the state legislature's Appropriations Committee will lead to the eventual elimination of the IQ standard.
A Ledyard woman, Kathryn Strout, has been instrumental in bringing the matter to the attention of state officials and lawmakers. Strout, whose son, Patrick, has autism spectrum disorder and is ineligible for DDS benefits because of his high IQ score, first approached Walter Glomb, executive director of the Connecticut Council on Developmental Disabilities, a couple of years ago.
"It's kind of an important bill," Strout said of House Bill 5001. "In Connecticut, there are thousands of people who are not getting services. If you've got a 70, not a 69 but can't take care of yourself, you get nothing."
Passed unanimously by the Human Services Committee, the bill calls for the secretary of the state Office of Policy and Management, in consultation with the commissioners of Education, Social Services, Developmental Services and Public Health, as well as the Connecticut Council on Developmental Disabilities, to develop and recommend new statutory definitions for intellectual and developmental disabilities.
The OPM secretary also would be required to recommend changes in the qualifying criteria for services, "including the removal of consideration of a qualifying intelligence quotient."
HB 5001, "An Act Concerning Resources and Support Services for Persons with an Intellectual or Developmental Disability," considered the "speaker's bill" because it reflects the top priority of House Speaker Matt Ritter, D-Hartford, is expected to gain the legislature's approval.
Glomb, in a January memo to the executive committee of the council he heads, wrote that the existing state statute, which limits eligibility for services to those with an intellectual disability as well as to relatively few who are diagnosed with Prader-Willi syndrome, a rare genetic disorder, "excludes many individuals who live with developmental disabilities in Connecticut."
"According to the federal Administration for Community Living, 46% of individuals with developmental disabilities do not have intellectual disabilities," Glomb wrote.
Connecticut is among a handful of states that consider IQ scores in determining whether someone is intellectually disabled, Glomb said in a phone interview this week. Fewer still, perhaps only one or two, use it as a criterion for determining whether people are eligible for services, he said.
"... Intelligence quotient is a dubious predictor of need," Glomb said in testifying during a public hearing on 5001.
Instead, he said, most states employ a functional definition of disability that doesn't involve diagnoses or IQ scores but is based on how well a person performs everyday tasks.
"It's a much better tool for determining who should get services," Glomb said. "My assertion is that if you were to apply level-of-need to those with an IQ score over 69, you'd find a significant number with need."
He estimated changing "intellectual disability" to "developmental disability" in the statutory language, thereby eliminating the IQ standard, would benefit about 2,000 people in Connecticut.
Patrick Strout, a student at Three Rivers College in Norwich, would be among them.
"My son has gifts that I can't even hope to have," Kathryn Strout told the Human Services Committee in March. "He is extraordinary in many ways. His intellectual capabilities and his gift of singing put him in a class by himself but he needs help utilizing those gifts ..."
Patrick also testified, describing his struggles with social interaction despite academic success in middle school and his subsequent attendance at schools for those with special needs.
"...IQ numbers do not seem to correlate with the amount of services that people need," he told told the committee. "I think that eliminating the IQ and assessing need independently would be a good starting point to providing services to those who need it regardless of a number."
