Integration and Self-Direction

Integration and Self-Direction

We must promote—to the best of our ability and by all possible and appropriate means—the mental and physical health of all our citizens.
— President John Fitzgerald Kennedy, February 1963
   President Kennedy hands signing pen to Eunice Kennedy Shriver after signing the Maternal and Child Health and Mental Retardation Planning Amendments of 1963.

President Kennedy hands signing pen to Eunice Kennedy Shriver after signing the Maternal and Child Health and Mental Retardation Planning Amendments of 1963.

This past summer, I completed the "New York State Housing Navigator Course" with John Maltby of the Westchester Institute for Human Development and Carol Napierski of NYSACRA (NY State Association of Community and Residential Agencies). John is a very engaging instructor and he has an enormous amount of professional knowledge on the topic of housing for the developmentally disabled in New York State. John Maltby is also the father of a 40+ year old developmentally disabled son, and John has the real world experience of navigating a complex and ever changing system as a parent first and professional second. 

  John Maltby - Father and DD Housing Thought Leader

John Maltby - Father and DD Housing Thought Leader

My Goals taking the Housing Navigator Course were:

  • Learn about the existing system in New York State so as to eventually place Dustin Sweeney, my 19 year old autistic son, in the best possible community that will support and provide his long term needs as an adult. 
  • Provide/build/support/grow existing and new communities for the developmentally disabled community in New York State. 

Reframing the Conversation of Housing for the Developmentally Disabled (DD):

  • We studied the history of the developmentally disabled in New York, including the antecedents and aftermath of Willowbrook.

  • The Housing Navigator course provided us exposure to the complexities of writing laws and guidelines in Washington D.C. at the Federal level for the complex DD population. 

  • The 2016/17 New York State budget for OPWDD (Office for People with Developmental Disabilities) is $4.7 billion. That $4.7 billion is matched at the Federal level by CMS (Centers for Medicare & Medicaid Services), so the functional budget for the NY State DD population is $9.4 billion for 2016-17. 

  • For years I have been hearing about the battle between the NY State OPWDD  and the Washington D.C. based CMS. Reading the Affordable Care Act section(s) on the developmentally disabled offered me:

    • An understanding as to why NY State is at odds with Washington; and

    • A perspective that Washington wrote a very thoughtful section in the Affordable Care Act for our population. It is impossible to address the specifics of any individual case, but they started a huge shift towards "Inclusion/Integration".

  • "Inclusion/Integration" - The biggest concern in the DD community has always been, "What happens when we (parents) are gone?" Moving forward, it is going to be a complex question of how to "integrate" the developmentally disabled community into "mainstream" populations, but that is what is being mandated out of Washington D.C. 

    • Cost will be reduced with the integration model as many of our population will need to adapt and adjust from the more focused attention that is often received in their school-age years.

    • I believe the integration model will be good for our population, and I dare to say for society at large. 

Summary:

Housing and communities for the developmentally disabled community is an evolving conversation and the Housing Navigator course was a good first step.