Julia's Musings: DD Goes "Missing" In the Talk About MH/DD/SA System Reform

I have to admit that I am new to the discussion about health system reform in our state, but for the longest time I could have sworn that the law was titled Mental Health Reform. To my surprise the actual title is Mental Health, Developmental Disabilities, Substance Abuse System Reform. It was an honest mistake given that the majority of discussions in the media and the General Assembly have focused on Mental Health Reform.
Clearly there are many problems with the care of persons with mental illness in our state, from hospitals closing to lack the community based services. However, many of these same problems are being faced by the DD/MR population as developmental disability centers close, and more “sheltered workshops” are mainstreaming their clients. These changes are a positive step for persons with disabilities but the implementation of the “plan” is broken. The gaps are real for persons with developmental and cognitive disabilities. Our state has not stepped up to deal with these gaps from a best practices model of community services to a commitment to invest in supported employment, accessible transportation, inclusive and affordable housing options, and respite care for families.

In this year’s budget, Developmental Disabilities received no “new” money. All the money in the budget was realigned. Realignment is a cut. There was a struggle to get 300 “new” CAP/ MR-DD slots and we have a waiting list of over 4,000 people. Not that we officially keep waiting list information any more. To add to the burdens facing families with children who have cognitive and developmental disabilities a new Special Provision will allow DHHS to study the effectiveness of a co-pay for new CAP/MR-DD recipients. A Special Provision that may turn out to be anything but special. If legislators agree with this study then many families will have the financial burden of paying a co-pay for the CAP/MR-DD services they currently receive. Of course if their child was in an institution there would be no co-pay for the same services. Then there is the financial impact on families, the life span cost for a single child with Autism is close to 3.2 million dollars (Harvard School of Public Health). A difficult calculation when you consider the median income in Raleigh is only $60,000.00 (2000 Census) a year for a family of four.

Maybe the complicated issues facing people with cognitive or developmental disabilities is not as “marketable” as those for people with mental illness but the difficulties are just as burdensome for the families and the individuals trying to receive the supports needed to remain independent and engaged in their community. It’s time to take a look at the complete reform package and look at the inadequacies that are facing the multiple populations being affected by the Mental Health, Developmental Disabilities, Substance Abuse Service Reform initiatives. It’s time for the discussion to be inclusive of all people affected by the current Health Reform initiatives.


Additional Links:
Harvard School of Public Health - http://www.hsph.harvard.edu/news/press-releases/2006-releases/press04252006.html