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By Micki Edelsohn
On a lovely spring day in 1972, I held my youngest son Robert for the first time not knowing that this little baby would change the trajectory of my life. Birth injuries that occurred during that difficult delivery resulted in Robert suffering significant intellectual disabilities. As the extent of these disabilities slowly unfolded, I knew that Robert’s challenges would be different from his older brother and yet my goals for him were the same. Robert would get the best education possible to reach his full potential and someday hold a job, live in his own home and enjoy life in his community.
In 1989 I had a small dream. I would find a way to raise the funds to build a group home where Robert could live with his peers when he completed his schooling. There were a few group homes in Delaware; but my vision of what a group home should look like was quite different! It should be in a beautiful, safe community near all appropriate amenities. When my first group home was completed other families liked what they saw, and the State of Delaware asked for more. My husband Lanny and I then established Homes For Life Foundation and, thanks to the generous and ongoing support of the Delaware community and friends around the country as well as corporations and foundations, we have built and furnished 25 debt free group homes and purchased two condos. Today one hundred and four deserving men and women now have a safe and comfortable place to live and enjoy life. Their intellectual disabilities range from high functioning with drop-in support to high needs with 24/7 awake staff.
It didn’t take long to appreciate that building the homes was the easy part. Finding caring, dedicated and competent staff would turn out to be the difficult part. Ironically in the 1990’s, as I was fundraising and building four-person group homes, the State of Delaware approached The Arc of Delaware requesting that they become a landlord by providing homes for those with IDD. I was a board member of the Arc of Delaware at the time. When the Homes For Life homes began to multiply we recognized that as an all-volunteer non-profit organization with no staff to provide property management, we voted to deed each property to The Arc of Delaware for $1.00. The organizational arrangement was as follows:
- Homes For Life would build and furnish the homes.
- Homes For Life then deeded the homes to the Arc of Delaware for $1. The Arc became the landlord responsible for upkeep of the homes, including a maintenance reserve fund.
- The State of Delaware contracted with provider agencies to support the residents living in the homes and compensate the agencies according to the acuity of the disability of the residents in the homes.
- The residents in the homes would always have the right to change provider agencies if they felt that their needs were not met.
When the last home was donated in 2009 the value of the homes was approximately 10 million dollars. Each home was HCBS waivered. Little by little I began to understand CMS and the Medicaid system. The Medicaid funds are the “lion’s share” of lifetime support due to the costs of direct care for persons with IDD. Each home is only as good as the Direct Support Professionals and the managers who, despite inadequate wages, make a house a home.
It was during this time, that I met many other Delawareans whose adult family members were longing for a more independent life. I also became acquainted with The Mary Campbell Center in Wilmington, a 55 bed ICF with amazing amenities for those with higher needs and medical complexities. I found others online like VOR members Tamie Hopp and Jill Barker, and I met people from across the country who shared my views that a “one size fits all” solution would not be sustainable.
In 2011, I was appointed to the President’s Committee for People with Intellectual Disabilities (PCPID). This position gave me more insight into the way services were being allocated, and the ideological direction the agencies administering DD services were taking. At that time CMS began reviewing and changing HCBS regulations. The Administration on Aging and the Administration on Disabilities were combined into the Administration for Community Living (ACL), taking the focus from the needs of the individual to a determination to support a single service model of “community living.” The push to move people from ICFs was well underway, and now various government agencies were shifting again and urging families to keep their loved ones in the family home as a new “alternative.”
I had to accept the sad reality that not only were ICF’s no longer being presented as an option by most states’ departments of disability services, but HCBS waiver models were also being deemed congregate, even 4 person homes. By 2010 our Delaware DDS director was no longer requesting the group home model from Homes For Life. Our group homes were now referred to as “mini-institutions.”
So today, as Robert turns 48, I am no longer a “home builder” but an activist working to ensure that all voices are heard and all housing and work opportunities are valued and receive the funding streams needed to meet all people with IDD, especially those with the highest needs. Those with IDD, regardless of severity, have the right to choose where and with whom they would like to live whether it be in an ICF, a group home, an intentional community, an apartment, a farmstead or in their own home with their family members.
When I first started this journey, I never imagined where it would take me or what wonderful people I would meet along the way. For me, life’s great irony is learning that, although we start out by simply wanting to care and provide for our own very special children, we discover that to do so we must embrace every child.
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