This post is divided into two parts. I started writing Part I last week and after this work week I added the epilogue.
In New York State we have “The Office Of Mental Health” and “The Office of People with Developmental Disabilities.” These state entities contract for services in the public and non-profit sector. Depending on the severity of the diagnosis and impairment, they offer a different array of services beyond clinic level of care.
I currently have 3 youth on my caseload that need both. Guess what….you can’t have both. This applies mainly to youth affected by autism spectrum disorders. From the clinical case management perspective there is a lot of debate about which diagnosis is “winning out.” This will have a bearing on what services they access especially as they approach age 16 and beyond. Both systems are saturated and have differing philosophies. I find that it is the children and families caught in this debate that are losing. The “mental health” system presumes that they will “recover,” however developmental disability services will be more lifelong. I find that these philosophies must meet somewhere.
Mental health services appear better for these children when they are below 16 but The Office of Developmental Disabilities appears to have more options for youth transitioning to adulthood. So what we “call them” affects who pays and for how long. This is crazy thinking but let’s put that aside and try to determine “what” they need rather than who provides it and for how long. There is a lot of talk of substance abuse and mental illness but not of what I would call “the other dual diagnosis.” How do other states/countries reconcile mental illness versus development disability/autism spectrum disorders? Are there service barriers based on this and if so how are they overcome?
So last week the three of my clients with comorbid mental health and autism spectrum disorders were in some form of crisis. This sent the parents I work with (and myself) into a spiral about not only the current crisis but the future of these young people. Since then things have calmed down and these are some of the things that have helped.
With one client, I got some results on psychological testing that better clarified his diagnosis. The adaptive behavioral scale is a key test to rule out which diagnosis is “winning.” Also consulting with colleagues to discuss WHAT they need rather than who provides it was helpful. Good consultation with therapist, psychologist, psychiatrist, and school psychologist helped reconcile a lot of the current concerns and future worries. Currently we need to offer as much structure and predictability as possible. We can advocate that they stay in their current educational programs. One client’s safety was such a significant concern my worries about “who pays” and the future should have become insignificant.
My nervousness lies with the transition to adulthood for these young people (ages 12-16). They need an incredible amount of support now and that will probably continue. The parents of the 12 year old ask me, “Will he grow out of this?” The parents of the 15 year old asked me, “How is he going to get a job?” My answer is to stay in the present but plan for the future. How can the schools plan for their transition? What external resources are available to help the family with transition?
Slow down, focus on the present needs, and move on from there. I was almost frozen by questions about the future that I forgot to focus on the strengths, needs, and abilities. I still am curious about other how systems of care reconcile services for concurrent Autism Spectrum Disorders, mental health, and developmental disability services.