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?
