<\/p>\n
A raised red oval, a couple of inches in diameter, sits at the top of Alex Meredith\u2019s forehead.<\/p>\n
It is the physical mark of a besieged mind.<\/p>\n
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 Meredith\u2019s high-pitched squeal, his wrists colliding. Once he starts hitting himself, there\u2019s nothing to do but freeze and wait for it to pass.<\/p>\n
Meredith was diagnosed with autism when he was very young. Later, his parents were told he also displayed symptoms of mental illness \u2013 obsessive-compulsive disorder, anxiety, psychosis and depression.<\/p>\n
For Carol and John Meredith, Alex\u2019s 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 Meredith 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.<\/p>\n
Still, nobody seems to know exactly what to do with Alex.<\/p>\n
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 \u2013 which can range from Down syndrome to autism to cerebral palsy \u2013 and mental illness, getting treatment means navigating a fragmented system, the study has found.<\/p>\n
Funding quirks have created huge gaps in care. As a result, family members find themselves alone \u2013 and often isolated \u2013 in trying to manage complex problems that need professional support.<\/p>\n
The number of Coloradans affected isn\u2019t small. Nationally, around 1 in 3 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.<\/p>\n
That would translate to around 35,000 people in the state with dual diagnoses, based on common estimates of the prevalence of developmental disabilities.<\/p>\n
Many are left without adequate care and some without any care at all. Expensive visits to the emergency room \u2013 which often provide little help except for short-term stabilization \u2013 have become a primary line of defense.<\/p>\n
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\u2019s 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.<\/p>\n
But any solutions remain a few years off at best, leaving families in this situation to seek each other out for ideas and support.<\/p>\n
The current system in Colorado \u201cdivides people up into their different diagnoses,\u201d says JFK Partners Director Cordelia Robinson Rosenberg. \u201cBut care has to treat people holistically.\u201d<\/p>\n
Most people with 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 \u2013 the first as fee-for-service and the second as managed care.<\/p>\n
Carl Clark, who heads the Mental Health Center of Denver, says that while health-care providers often try to work together to treat people who fall into both categories, the divide in payment models is explicit.<\/p>\n
\u201cOur funding from the state (for Medicaid enrollees) says you do not use this for people with developmental disability,\u201d Clark says.<\/p>\n
As a result, mental-health centers are often ill-equipped to offer some of the services \u2013 like long-term housing support \u2013 that people with developmental disabilities need.<\/p>\n
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 \u2013 which can include fetal alcohol syndrome, a notoriously hard thing to pinpoint \u2013 and complex mental illnesses. And even experienced psychiatrists may have trouble attributing behaviors to one diagnosis or another.<\/p>\n
\u201cUnfortunately,\u201d Clark says, \u201cthe science does not divide the brain up as clearly as funding sources do.\u201d<\/p>\n
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\u2019t been paid since October.<\/p>\n
Nobody \u2013 including the psychologist \u2013 could figure out who was responsible for paying her.<\/p>\n
Worse, research from the University of Colorado has found that a significant number of Coloradans are excluded from treatment entirely, Rosenberg says.<\/p>\n
Medicaid establishes an IQ threshold for developmental disabilities, excluding people who surpass that bar but who still suffer from severe social or intellectual limitations.<\/p>\n
Surveys conducted by JFK Partners found that for every one person who is receiving services for developmental disabilities under Medicaid, Rosenberg says, there\u2019s another person who isn\u2019t being served. That includes people who have unmet mental-health needs.<\/p>\n
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.<\/p>\n
\u201cWhen their children are hurting themselves, or hurting them, and they don\u2019t know what to do,\u201d Rymer says, \u201cwe will advise people to call 911.\u201d<\/p>\n
Doing so repeatedly can help build a case for the kind of sustained long-term services that people with dual diagnoses need.<\/p>\n
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 \u2013 often the most disruptive way and least effective way to treat someone who needs consistent care.<\/p>\n
Valerie Saiz and her husband Richard waited four days and four nights in an emergency room in 2010 \u2013 and again in 2011 \u2013 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.<\/p>\n
\u201cWe noticed that the other kids getting admitted to the ER, if they were aggressive to others, they\u2019d restrain them,\u201d Saiz says. \u201cIf they were self-abusive, we\u2019d have to do it ourselves.\u201d<\/p>\n
Each time he was admitted, Graham was discharged without a plan for treatment, Saiz says. 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.<\/p>\n
\u201cIf we\u2019re locking Graham in his room for safety, I\u2019m sure other people are. Other people just call 911 left and right. People have to do what they can to survive,\u201d Saiz says. \u201cBut it shouldn\u2019t be about survival.\u201d<\/p>\n