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Desi’s Desk: Desperately Seeking Accountability, Quality Care, and Loving Home Environments


I can’t believe that I am reading about another case of severe neglect and abuse leading to the death of a man with developmental disabilities– Robert Gensiak, another name to add to a growing list. The perpetrators, his mother and two sisters, are facing third-degree murder charges…but that offers no resolution. It doesn’t take away the pain of his starvation, his isolation, his fears, and the fact that no one noticed he was dying of scabies and malnourishment – or worse, that no one cared! A man does not become 69 lbs overnight …


I could go on a ranting about poor caregivers or “the system” at large, but blame does not bring Robert back or prevent others from this horrific fate. Raising awareness is the first step…


Please SHARE the following statistics and become aware of the desperate lack of accountability, support services, and home options available to people with autism, intellectual, and developmental disabilities nationwide:


  • In over 30 years of de-institutionalization, only 612,704 out-of-home residential placements have been developed and publically funded*

  • Currently, 850,000 individuals with I/DD and autism are living with family caregivers over 60 yrs old*

  • Only 13% of families are being assisted by state developmental disability agencies*

  • SSI payments average $726 a month or $8,714 annually- almost 30% below the 2012 federal poverty level**

  • For the first time in over 33 years, growth in I/DD support services funding went into the negative*


Robert, like so many others, needed a home, a place to feel valued and a place to grow through friendships with a loving community. Madison House is currently raising funds to finish the interactive Autism Housing Network, a tool that would list existing and developing residential and community projects, offer a directory of resources to empower grassroots initiatives, and offer the space to problem solve and share solutions. With limited state and federal funds, please support organizations and programs like the Madison House Autism Foundation that are actively taking steps to addressing the needs of adults with autism and other related disabilities.


Please share these statistics, not only to honor Robert, but to help our country become more aware of the disability housing crisis and consequences of human indifference. Do this in hopes that when there is an opportunity to share time or resources with a budding local supportive housing solution, the people will go for it!


*Research from a University Center for Excellence in Developmental Disabilities (UCEDD) released the latest data in the 2013 State of States in Developmental Disabilities Project.

**Technical Assistance Collaborative 2012 Priced Out Report

Desiree Kameka

Desi’s Desk is a blog post written periodically by Desiree Kameka, Director of Community Education & Advocacy

Desiree’s work focuses on researching housing issues, advocating for autistic adults and their issues, and presenting her work at local and national gatherings. She visits many residential communities and social enterprises across the USA and highlights their unique victories and learning curves while sharing stories of residents with autism and other developmental disabilities. Desiree is also the project lead for Madison House’s interactive Autism Housing Network, which is currently in BETA testing. Her passion is empowering autistic adults and parents to create a future that is exciting and life affirming by offering small group consultations for forming projects. 


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