Saturday, November 1, 2014

Dear Governor Kasich of Ohio...

John Kasich, Governor
Riffe Center
77 South High Street, 30th Floor
Columbus, OH 43215

Dear Governor Kasich,

I am a parent advocate for my daughter who is 20 years old and severely impacted by spastic quadriplegia, agenesis of the corpus callosum, scoliosis, and cortical visual impairments.  Since birth, she has had global delays in motor, speech, and cognitive development.  She is non-verbal.  She needs 24 hour care.  She's in diapers.  She cannot chew her food. She has been on the Ohio waivers waiting list since 2009.  She cannot “self-determine” or plan her life. Her two advocates and caregivers are her parents.  She requires specialized school services through Hamilton County DDS’s Bobbie B. Fairfax for all of her education needs.  After graduation in 2016, she will have no place to go because she’s on a waiver waiting list that hasn’t moved  and there is no funding available through the one agency, HCDDS, that once provided specialized services for adults like her with disabilities. 

While I applaud you for believing everyone has something to contribute according to their ability with “Employment First,” our daughter is not employable. In fact,  her life after graduation in 2016 looks grim because "Employment First" and Olmsted Act are working against each other.  The “Employment First” values her only if she is employable and if she is “self-determined.”  Given her medical documents, school records, IEPs, and other important assessments, our daughter requires 24 hour care for assistance, communication, mobility, feeding, bathing, and toileting which is currently being met at school and home.  How can she be included if there is no specialized program or service to help her?

As for the Olmsted Act, specialized services that allow our daughter and young adults like her to be included in Hamilton County have pretty much dried up.  I read the interpretation of the Olmsted Act submitted to your office by Disability Rights of Ohio in July 2014 suggesting to close more respite and daycare facilities because it violates the Olmsted Act. If the programs are closed because they are viewed as "segregating" a population from the community, then how will those people be served in their community locally? Most places here in Hamilton County have waiting lists and isn’t that what drove parent advocates to look for specialized services?  And is “segregation” really the right word here? Most services are “segregated” in the medical field. For example, sports medicine. Athletes receive separate services for therapy and rehab. Why are people with disabilities not given the same options for specialized care as athletes? Not everyone is qualified or specialized to work with this population of adults whose “self-determination” is advocated by their parents and guardians.   It has never been clear to me why Supreme Court rulings are used to take away “specialized” services rather than preserving “specialized” services. 

The reason I understood parent advocates like me had options for specialized care was because there was no single template under which all our family and friends with disabilities fit.  I agree, some people probably don’t belong in the shelters and can contribute something. But how are we going to transition this population if there is no funding? The letter also suggested closing the ICF/IID, sheltered workshops, and day centers to open the waiver list.   I call this "robbing Peter to pay Paul” even though our daughter has been on a waiver waiting list since 2009 when we first found out about waivers.  Without a waiver, there is no opportunity for her to transition into the community through recreation services unless it she pays for it. How can she do that if she’s disabled and unable to work?
For the last ten years, I have been watching in disbelief the funding and resources from the federal and state disappear putting pressure in Hamilton County to serve more people with less funding and less direct services.  Why wasn’t the Olmsted Act ruling used to promote funding for specialized services? Before we take away, shouldn’t we look to make sure there is a safety net?  If  Hamilton  County Commissioners understood the impact of the ruling, I’m sure they would have been more supportive of HCDDS that traditionally integrated millions of adults with disabilities  into the community through housing, job training, and recreation rehab.  It is unbelievable that anyone would challenge parent advocates like me, scrutinize agencies like HCDDS and support organizations currently serving the population of aging adults with disabilities with the little funding they have left after all the federal and state funding cuts.  It’s hard to believe that anyone working for the federal or state government cannot see the pressure mounting on an area like Cincinnati where the HCDDS-operated adult centers closed their doors to our daughter and others like her due to millions of dollars cut in funding.  Can you not see the irony here?  

Every politician from Washington DC to Ohio to Hamilton County appears to be making decisions on my daughter's behalf believing she can “self-determine” her life and choices.  I have medical documentation that proves she needs advocates – the people who know her ability.  Will you advocate for her?  Will you please convince the representatives and legislators that they cannot rely on local government  to continue providing quality specialized care for constituents who are severely disabled, cannot work, and need 24 hour assistance for basic needs? 

1 comment:

walkersvillemom said...

Thank you for sharing this letter with us. At The Road We've Shared, we support #MoreChoices for parents and caregivers. Your letter puts the situation in regards to sheltered workshops into perspective.

We hope the Governor hears you and we'll help spread the word of your work.