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Note to the New York State Legislature

Note to the New York State Legislature

by Dan Lukens

Comments on the 2015 Executive Budget:

Our system of care and supports for our citizens with intellectual and developmental disabilities is undergoing some of its most sweeping changes in a generation. We are looking at an immanent conversion to managed care, a Transformational Agenda driven by federal mandates and Olmstead compliance, the implementation of an acuity assessment system that will drive rates is due within two years and, most recently, a rate rationalization system has just been put into place. All of these changes will fundamentally alter the care and support we offer to this vulnerable population. And, I might add, all are being implementing without a Commissioner at the Office for People With Developmental Disabilities, with a permanent appointment.

Everything we are doing is changing and, I have to ask, do we know where we are going? Do I know with certainty, for example, how I will meet my obligation to support the over 200 people in the homes operated by Camp Venture, people for whom I am accountable for a lifetime of care? I am not sure that I do. And, were I to be asked by a younger parent about a life plan for their vulnerable child and whether there will be a real safety net for them in the years ahead, how would I answer them?

Our state is engaged in a transformational agenda the goal of which is to offer independence and a more community integrated life to people with developmental disabilities. It is a laudable goal, one that I would fully embrace if only I had a better sense of how this agenda would be realized.

This year’s Executive budget for the OPWDD includes $30M for new services for 6 months. Is that enough for the state to return a class of students graduating from residential schools for whom the state is obliged to provide residential supports, that class being twice as large as last year’s? Is there enough there to meet the federal requirements to move people out of state institutions? Is it enough to cover day supports to Special Education students graduating this year from local special education programs for day, employment and other supports? And, what about the estimated nearly 4K people with developmental disabilities living at home with their families who will need a 24 hr support within the next year? Is that in there too?

Then there is the matter of the ICF residences that are are mandated by the Centers for Medicaid and Medicare to be converted or closed and especially the ones that are larger than 14 beds that can not convert, is there a sufficient appropriation there to pay for additional housing and the added cost of care that would be required for a provider to care for these high-needs people in a smaller and more community integrated setting? Again, is that in there?

And, finally, we are talking about putting more people into non-certified residences, apartments with less than 24 hour supervisions and into employment. Is there enough in this budget for enhanced Supported Employment Services? Are we developing the financial models for this non-certified housing? More importantly, what is our plan to teach the next generation of people with developmental disabilities about how to be more independent?

The expectation in the transformational agenda, with Olmstead mandates and from the federal government is that we make a dramatic change in our reliance on long term supports. What are we doing to achieve that? More importantly though we need to ask ourselves, what is the goal really? Are we planning on actually helping people to live better lives and indeed, if our people succeed in becoming more independent, they will be better lives. Or, are we just going to push them out into the world without a safety net? Are we simply going to shift the burden back on families or dump them on local communities?

The goal in closing workshop programs , institution beds and ICF residences is to finally put an end to institutions. That’s fine but as we embark on that endeavor I would respectfully suggest that we need to fully understand what an institution really is. You see, as a family member and someone who has spent most of his working life with people with developmental disabilities, I’ve come to believe that institutions are not so much a place or a facility as they are a state of mind. They are the limits we place on our understanding and appreciation of our common humanity manifest as an idea about “fiscal reality”. Make no mistake, these changes, this transformational agenda, managed care, rate rationalization; it’s all about “fiscal reality.”

I would close with this thought: I am an agency director and my job is to serve people with developmental disabilities. My brother is a service recipient who lives in a certified residence. My brother receives his health care from the Medicaid program and I have private insurance. If we are going into managed care, if we are advancing the position in society of our citizens with developmental disabilities, then maybe the first place we should go with managed care is to put people like me who work in service into the same health care as the people we serve. And, of course, while we are at it, maybe our friends from CMS might join us too. The fact that this is something that apparently would not even occur to the purveyors of this policy, that’s your institution.

Note: Opinions expressed are those of the author and do not necessarily reflect the position of Camp Venture agency.

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