Friends,
Please take a moment to read through this email and maybe help us advocate for those with significant disabilities. Input on this issue is only being taken until January 23rd.
There are changes that are being made at many levels that are directly impacting families with loved ones with disabilities. Bill and I are asking you to consider providing input to one part of the changes that are going on. We just attended a meeting Saturday presented by mainly the Ohio Department of Developmental Disabilities. All states are required to provide transition plans to the federal government (Centers for Medicare and Medicaid Services (CMS)) to address people receiving “Home and Community Based Waiver (HCBS)” funding. There are 34,000 people on waivers in Ohio. Our son, Robby, is lucky enough to have one of those waivers. There is another real issue for those that don’t even have a waiver. Their options are even more limited.
Much of the wording we heard can sound OK on the surface such as, “CMS made the changes to support enhanced quality in HCBS programs, and to ensure that individuals have full access to the benefits of community living and participation.” The recommendations for implementation will drastically change the options that people with disabilities will have. The interpretation is that no waiver money can be used for any “segregated setting”. That can be applied to most of the current placements (day-programming and living settings). We totally support the idea of choice. Many of us with loved ones that have significant challenges feel that these “segregated settings” are more appropriately seen as “specialized settings” and are the best placements for our loved ones. Robby although having many wonderful strengths such as curiosity, tenacity, energy, a sometimes warm nature also has significant cognitive disabilities (severe MR, developmentally about 18 months), is non-verbal, ambulatory but unsteady, multiple daily seizures, potential anaphylactic food allergies, wears diapers, has no understanding of danger, can exhibit behaviors such as screaming, biting and throwing objects. Having him in a setting with people trained to address these challenges is paramount to his safety. How could we as Robby’s parents have him go to a place that is not knowledgeable of dealing with his challenges? There is no additional funding to provide an aide to be with him through the day in these “integrated settings”. If Robby does not have a safe place to go after he leaves the wonderful Hamilton County Developmental Disabilities’ (HCDDS) School in May of 2016 we will be forced to keep him at home. Robby wants to have something to do and a place to go. We are stepping back 30 or more years when people with disabilities didn’t have a place to go. This is happening for others now for other reasons.
There are other issues that are playing into changes for those with disabilities such as no increase in funding for HCDDS in over 12 years, the Department of Justice’s reaction to the “Olmstead Decision”, Ohio’s “Employment First”, and mandated minimum wage to name the one’s we are familiar with. This feedback is specific to the DoDD Transition Plan to CMS.
Please consider emailing:
HCBSfeedback@medicaid.ohio.gov
DoDD Website for more information:
There is a “share your feedback” link but It’s unclear whether that is to the same place as the email above
We would not want to see someone in a “specialized setting” that did not want to be in one but don’t take the option away from the many of those of us that want it.
Just some food for thought: most people support St. Rita’s School for the Deaf, Special Olympics, High Schools that require entrance testing such as St. Xavier or Walnut Hills. Please consider our “specialized” choices as acceptable.
Thank You and God Bless,
Elise and Bill Fessler
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