Texas kids with autism or mental illness caught in services catch-22 because of their higher IQs

From The Texas Tribune:

Cameron Maedgen (pictured) knows he’s dangerous. The autistic, brain-damaged and often suicidal 19-year-old — turned over to the foster care system as a drug-addicted infant — has violent outbursts and a fascination with guns. He's been jailed three times and admitted to a San Angelo-area psychiatric hospital six times since January.

But his adoptive mother’s tireless effort to find her son structure — a group home or residential setting where he’ll be safe and well-treated — has been foiled by a single factor: his IQ score. The state calls Maedgen too high-functioning for a residential facility or for the in-home program it funds for people with disabilities. Karen Bartholomeo says her son is too low-functioning, and certainly too unstable, to go without them.

Maedgen isn’t the only one in this conundrum. Advocates say a rising number of autistic and mentally ill children are reaching adulthood without the prospect of services because their IQs are simply too high. The state limits admission to its state-supported living centers to disabled people with IQs under 70 — and generally caps community-based care at an IQ of 75. Just because an autistic person’s IQ averages out higher, these advocates say, doesn’t mean he or she can manage without care.

“There’s nothing for us,” Bartholomeo says, her voice tinged with desperation. “Right now, my only hope is that he doesn’t kill himself, that he doesn’t hurt anyone else, and that he stays out of the prison system.”

In the inverse situation, advocates say, are people with disabilities whose IQs are just low enough to keep them in state institutions, but who might be better served in the community. But if their IQs test above 75, they not only don't qualify for the state-supported living centers. They don't qualify for most community-based programs either.

IQ tests are designed to measure the mental ability of children and to identify people who have cognitive or developmental disabilities. They're one of several criteria state officials use to determine whether someone qualifies for services, either at home or in a residential setting. Though the tests and what they seek to measure are complex, "as degrees on a thermometer show a person's temperature, IQ tests measure intelligence calculated from questions or tasks found ... to reflect intellectual functioning," said Cecilia Fedorov, spokeswoman with the Department of Aging and Disability Services.

Though some experts question the veracity of IQ tests, of which there are a half dozen different varieties, they're recognized by national organizations like the American Psychiatric Association and the American Association of Intellectual and Developmental Disabilities — and so are used by state agencies that need some barometer for offering care.

Currently, 15 percent of the 4,300 residents in Texas’ state-supported living centers have “mild” mental retardation classifications, meaning they have IQs between 50 and 70. Fedorov said local mental retardation authorities perform the initial IQ test when a person applies for services. “Once an IQ determination is made, individuals are not required to be re-tested,” she said.

The cut-off gives institutionalized people and their guardians little incentive to get updated IQ assessments, for fear they’ll be left without any services, says Beth Mitchell, an attorney with the nonprofit disability rights group Advocacy Inc. “The real issue is why we have to tie services to a number — and it’s because of a lack of funding,” Mitchell says. “But if this kid ends up bringing a gun to a public place, ends up getting shot by a cop because we couldn’t spend a couple of extra dollars for care, what’s the cost to society?”

Vicki Hill Riedel’s 22-year-old son Ryan faces the same barrier. He has Asperger’s, schizoaffective disorder, and seizures — but his IQ is normal. Ryan didn’t last long at a psychiatric group home, which had no experience with autistic patients. He’s been taken to a Plano-area psychiatric hospital so many times that the local police called Texas’ Adult Protective Services division. Ryan faced the exact same hurdle at the local mental health/mental retardation authority — his IQ surpassed 80, so he didn’t qualify for care.

At home, Riedel says, Ryan sleeps half the day then plays video games, occasionally agreeing to do minor chores in return for a trip to a restaurant. Rather than enjoying their retirement, Riedel says, she and her husband are essentially forced to run an assisted living facility in their home. They have no alternative. And when they grow too old to care for Ryan, he won’t either. “My son,” she says, “is on the leading edge of a tremendous number of children with various levels of autism who will be reaching adulthood very soon.”

Bartholomeo, a social worker at San Angelo’s Goodfellow Air Force Base, became Maedgen’s foster parent when he was three weeks old and weighed just five pounds. Born addicted to cocaine, he required years of extensive rehabilitation to catch up developmentally. Maedgen’s behavioral problems presented early and only worsened. He was diagnosed with depression, ADHD, bipolar disorder, and then finally Asperger’s, a form of autism where language develops normally. He was on six different medications at once.

Maedgen thrived with structure, but Bartholomeo could only find it for him intermittently. She got him admitted to a youth residential treatment center and then a youth home, but both times he was too tough to handle. Back at home, he was bullied in school, and started stealing — jewelry from Bartholomeo, then BB guns from the local Academy story.

Bartholomeo turned Maedgen back over to state custody before he turned 18, hoping he’d have better access to services than she could provide. But when there were no foster homes to take him, and she learned he would be sleeping on the floor of state offices, she brought him back home. She visited private facilities she couldn’t afford. She begged and pleaded with disability officials to put him in a state-supported living center or to find him a group home. But averaged together, his performance IQ of 60 and his verbal IQ of 130 put him at a score of 95 — at the low end of “normal,” and well above the state’s cut-off.

In the last year, Maedgen stole a handgun “because it was pretty,” fired it in a local park, then called the police on himself, Bartholomeo says. He sometimes stops taking his medicine, repeatedly cuts himself, then calls authorities to tell them he’s suicidal. And he’s become violent with his mother.

Bartholomeo recently found a state Medicaid program that gives Maedgen 16 hours a week of cleaning, grocery shopping and laundry help — but not the psychiatric or developmental services he needs. “If I could find a way to get his IQ down to borderline, then he would qualify for a group home, for a little bit of structure,” Bartholomeo says. “He’s got a disability.”