In The Politics of Autism, I write:
When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.
- The age cliff, where IDEA services cut off at the 22d birthday;
- The income cliff, where SSI and other benefits cut off if a person makes too much;
- The IQ cliff, where some states decline to provide certain services to autistic people with scores above a certain level.
Many middle-income families just outside the Medicaid financial requirements are never eligible to receive services from DSS and must carve out services and a path to independence on their own.
“Sometimes it’s a matter of points that separates who qualifies and who doesn’t qualify. And the person just over the cutoff still needs support, and the housing and the services aren’t necessarily available, so they fall into that vulnerable place,” Exum said.
In addition to financial requirements, Sharon Cable said finding services for her son is also made difficult by an unusual “IQ cutoff” enforced by state statute. Connecticut is one of the last states in the country that still uses the medical diagnosis of mental retardation, measured by having an IQ of 69 or lower, to determine whether people with autism are eligible for certain services.
Decades ago, the majority of people diagnosed on the spectrum were also considered intellectually disabled, however, the federal Department of Human Services reported to Congress in 2017 that 31.6 percent of children with ASD are intellectually disabled.
Under state law, an individual who scores an IQ of 69 or lower receive services from the Department of Developmental Services (DDS), while those with an IQ of 70 or higher receive services through the Department of Social Services (DSS).
This cutoff puts individuals with an IQ of 70 or above at a disadvantage because DDS generally offers more services and has shorter waitlists, advocates say, though they note even DDS still has wait times for services like day and residential programs and behavioral services.
“There are still hundreds of families that are upset about lack of what they would think would be appropriate services from DDS,” Macnab said.
Advocates, families, and medical professionals for years have lobbied the legislature to do away with the “IQ cut off” because they argue it’s not the best indicator of need and precludes many families from services.