A raised red oval, a couple of inches in diameter, sits at the top of Alex Meredith’s forehead.
It is the physical mark of a besieged mind.
Meredith, who is 29, started bashing himself in the head when he was in his teens. Now, his parents can see it coming. A tranquil moment of drawing at the kitchen table cedes to Alex’s high-pitched squeal, his wrists colliding. Once he starts hitting himself, there’s nothing to do but freeze and wait for it to pass.
Meredith was diagnosed with autism when he was very young. Later, his parents were told he also displayed symptoms of mental illness — obsessive-compulsive disorder, anxiety, psychosis and depression.
For Carol and John Meredith, Alex’s parents, the search for treatment has brought them to psychiatrists and psychologists, to mental health centers and the community-centered boards that serve people with autism and other developmental disabilities. Carol heads The Arc of Arapahoe and Douglas Counties, an organization that advocates for people with disabilities, and has access to more than the usual range of leads and contacts.
Still, nobody seems to know exactly what to do with Alex.
The Merediths are not alone in their frustration, according to an ongoing study by JFK Partners, a program that does research on developmental disabilities at the University of Colorado School of Medicine. For people with the dual diagnoses of developmental disability — which can range from Down syndrome to autism to cerebral palsy — and mental illness, getting treatment means navigating a fragmented system, the study has found.
Funding quirks have created huge gaps in care. As a result, family members find themselves alone — and often isolated — in trying to manage complex problems that need professional support.
In the worst cases, the repercussions across society can be extreme.
In a recent interview with The New Yorker, the father of Newtown school killer Adam Lanza described trying and failing to find adequate treatment for his son, whose world slowly shrank to contain only his mother and his video games. Lanza was diagnosed with Asperger’s syndrome, considered a mild form of autism, when he was 13. A psychiatrist at Yale’s Child Study Center later noted symptoms of obsessive-compulsive disorder as well, and his father now believes his autism may have masked schizophrenia.
“Asperger’s makes people unusual, but it doesn’t make people like this,” Peter Lanza told The New Yorker.
The number of Coloradans affected isn’t small. Nationally, around one in three people with a developmental disability also has a diagnosis of some form of mental illness, according to a frequently-cited study by the National Association of State directors of Developmental Disabilities Services.
That would translate to around 35,000 people in the state with dual diagnoses, based on common estimates of the prevalence of developmental disabilities.
Many are left without adequate care, and some without any care at all.
Expensive visits to the emergency room—which often provide little help except for short-term stabilization—have become a primary line of defense.
Advocates like Meredith are hoping that the latest state-commissioned study will lead to a change in the way that people with complex developmental and mental health diagnoses are treated. One option would be to model Colorado’s care after a program that began in New Hampshire and has since been adopted in other states, with the idea of providing crisis intervention and care coordinators for people who needed these services.
But any solutions remain a few years off at best, leaving families in this situation to seek each other out for ideas and support.
The current system in Colorado “divides people up into their different diagnoses,” says JFK Partners Director Cordelia Robinson Rosenberg. “But care has to treat people holistically.”
Most people with both developmental disabilities and behavioral health conditions are covered by Medicaid. But in Colorado, the public insurance treats the two diagnostic categories under incompatible payment systems – the first as fee-for-service, and the second as managed care.
Carl Clark, who heads the Mental Health Center of Denver, says that while healthcare providers often try to work together to treat people who fall into both categories, the divide in payment models is explicit.
“Our funding from the state (for Medicaid enrollees) says you do not use this for people with developmental disability,” Clark says.
As a result, mental health centers are often ill-equipped to offer some of the services—like long-term housing support—that people with developmental disabilities need.
At the same time, the two funding models have left little room to develop specialists who are skilled in diagnosing and treating both developmental disabilities—which can include fetal alcohol syndrome, a notoriously hard thing to pinpoint—and complex mental illnesses. And even experienced psychiatrists may have trouble attributing behaviors to one diagnosis or another.
“Unfortunately,” says Clark, “the science does not divide the brain up as clearly as funding sources do.”
The complexity of who pays for what can have real impacts on treatment. Carol Meredith recently discovered that a psychologist who was having some success in treating her son hadn’t been paid since October.
Nobody—including the psychologist herself—could figure out who was responsible for paying her.
Worse, research from the University of Colorado has found that a significant number of Coloradans are excluded from treatment entirely, Rosenberg says.
Medicaid establishes an IQ threshold for developmental disabilities, excluding people who surpass that bar but who still suffer from severe social or intellectual limitations.
Surveys conducted by JFK Partners found that for every one person who is receiving services for developmental disabilities under Medicaid, Rosenberg says, there’s another person who isn’t being served. That includes people who have unmet mental health needs.
Marijo Rymer, who heads The Arc of Colorado, says parents of children with dual diagnoses call her in frustration after failing to find any help for their children. Too frequently, the only option is the emergency room.
“When their children are hurting themselves, or hurting them, and they don’t know what to do,” says Rymer, “we will advise people to call 911.”
Doing so repeatedly can help build a case for the kind of sustained long-term services that people with dual diagnoses need.
But encounters with police and emergency rooms can cost patients, hospitals and taxpayers a huge amount of money. And ERs are geared toward crisis management—often the most disruptive way and least effective way to treat someone who needs consistent care.
Valerie Saiz and her husband Richard waited four days and four nights in an emergency room in 2010—and again in 2011—in an effort to get treatment for their now 16-year-old son. Graham, who has autism and bipolar disorder, had been hitting himself violently. His parents took turns restraining him.
“We noticed that the other kids getting admitted to the ER, if they were aggressive to others, they’d restrain them,” said Saiz. “If they were self-abusive, we’d have to do it ourselves.”
Each time he was admitted, Graham was discharged without a plan for treatment, says Saiz. The family was forced to craft their own solution, putting a helmet and mitts on Graham to protect him from himself, and sometimes locking him in his room to protect the rest of the family.
“If we’re locking Graham in his room for safety, I’m sure other people are. Other people just call 911 left and right. People have to do what they can to survive,” Saiz says. “But it shouldn’t be about survival.”