What Bad News Bears...

Back in December of 2014, I sat in the Hamilton County Developmental Disabilities Service's (HCDDS) planning meeting overwhelmed with grief hearing about the change in direction of their mission serving children and adults with special needs.  I'm speaking of the population of adults and children who are severely disabled, delayed, unemployable, and  relying on "traditional specialized services" to live in quality, safety, and dignity.

 The reason why I was the only parent there, I suppose, is because the meeting took place when most family caregivers and community advocates are coming home from work -- caregivers who already have exceeded their personal and sick time at work meeting the challenges of raising children and adult with disabilities requiring 24/7 care. I can go. They can't.

I am a stay-at-home and full-time caregiver for my now 21 year old daughter. She is small enough to transfer so I can still lift her wheelchair in the car and take her places without facing the barriers that the majority of families and advocates face trying to advocate for their children and adults. I left the workplace in 2000 after my daughter aged out of Redwood Daycare  and could not find a  replacement after-school daycare in Ohio that had medical and therapy staff to meet her needs.

According to the new HCDDS  mission, to remain in compliance with the State of Ohio due to the interpretation of the "Olmsted Act 1999 and "Employment First Initiatives," HCDDS  can only help people who are employable.  Due to funding cuts and rerouting of funds from the State of Ohio, they can only help people who are able to undergo special training by the State of Ohio and their agencies.  They can  no longer provide traditional specialized services on-site that once safely bridged a medically fragile population into the community through daycare, recreational rehab, and workshops.  Their traditional support organizations and services will be no more.

It  all started with the Olmsted Act 1999 ruling guaranteeing our family and friends w/ disabilities to be fully integrated into their community. No one is quite sure who in Ohio has chosen to react to this ruling and why it's being used to take away traditional specialized services -- services that in many cases were identified through this thing parent caregivers and advocates  call "choice."  No one has seen any increase in federal, state, and local funding for how these changes will take place, either.

For the population of families and friends with severe disabilities requiring 24/7 care and  currently receiving specialized services appearing to "isolate" or "segregate" them from their community, the Olmsted Act is being interpreted as an excuse to de-fund current  support agencies and services that many families still rely upon.  So any program or service not meeting the  Olmsted Act ruling will go unfunded.  It is unfortunate that a ruling created to protect our family and friends, to help integrate them into community,  is being interpreted in Ohio to take away valuable funding and resources for those in need of specialized services for respite, daycare, overnight medical care, recreational rehab, transportation, and other important services that give purpose, quality, and dignity.

 It's  happening too quickly to feel the impact right now locally, but after attending the HCDDS Planning meeting early in December the writing on the wall was clear:

 1) Children and adults in Ohio are only valued if they are employable or if they can live without traditional specialized 24/7 care;

2) Parent and extended family caregivers, agencies like HCDDS, and service coordinator/advocates are not valued in the State of Ohio because they are never given time or additional budget to act,  prepare, and plan for the changes impacting this population of children and adults with special needs requiring 24/7 care.

What compounds this situation is that HCDDS  operates on a budget that has not increased in the past 11 years, yet their caseloads have increased by 80% creating longer waiting lists for many different services.  With no additional funding coming from the state or locally,  the waiting list for waivers, for example, for people requiring 24/7 care and specialized care has not budged since 2008. Ironically, children and adults on the HCDDS waiting lists, will be staying at home and not participating in the community which puts us right back where we were before the IDEA ACT 1973.

With every year, every email, and every meeting I've attended,  the bad news has been coming swift and steady from the State of Ohio and locally.  Even with the many spins I hear  "how this is really great news for Ohioans with disabilities," it's still means less funding locally.   Less funding locally means services dwindling locally which means there will be less options for people like my daughter who has been on a waiting list for services because there is no money. 

Just in the past 9 months, I have received a thousand email messages drawing my attention to meetings, workshops, bootcamps, resources, and other training programs that will help me be a better advocate for my daughter and help me find services.  For each one I attended, I learned that unless my daughter can take a bus independently and attend a special workshop for job training, count her change, and do the most menial task, she is not valued for being who she is -- a 21 year old with a smile that will light up the room if you say hello or give her a high five. A 21 year old who likes to be pushed in her wheelchair on a dance floor with disco lights and on a basketball court by her

Cheerleader buddies.

This summer, my mailbox is full with even more invites to meetings from which  experience means more bad news from the State of Ohio taking away more services that took over 30 years to create and put into action for children and adults with disabilities.  After 30 years developing  the agencies  offering specialized services, programs, and workshops, imagine what the lines will look like when those services are taken away.   Where will our adults and children go? According to the Olmsted Ruling, into the community -- a community where the big agency once perceived as the "go to place" for all things "disability" hasn't increased funding in 11 years.  A community where there is an 80% increase in caseloads and growing.    According to the Governor, into jobs due to his "Employment First Initiative."  An "Employment First Initiative" that means everybody means everybody, including my daughter because that's where the money is going -- job training.

Very recently I receive another invite to yet another workshop.  More bad news, I'm sure.  Notice that on the bottom is a disclaimer, "This session will not address county-specific concerns." Well, most of the issues here locally rest upon what is happening at the state level.  Most of the specialized services we relied upon over the years locally were provided in part through state funding. So why can't that be addressed? 

Ohio Families fight community-care plan

  In  Families fight community-care plan, we learn about how Ohio  is responding to CMS guidelines alleging that current services  are  "segregating" individuals from their community.

Considering our history segregating millions of people of color from economic mobility in their communities using inhumane and discriminating practices,  I think it's a very inappropriate use of the word. What our families and friends need is A DESTINATION that is safe,  dignified, and state-certified   SO THEY CAN be included in their community.

Ironically, we are forcing a population of severely disabled adults back into their  homes which segregates them from their community.  Many people with disabilities -- the ones who are going without resources, services, and waivers so they can participate in their community -- are already segregated from their community because all the state and locally certified workshops lost their funding.

I'm speaking about the people who cannot deliver commencement speeches on their communication devices and self-propel their wheelchairs  into college or the workplace.  The people who really need a safe place to go -- a place that was funded by both federal and state government.   Once again the federal and state government are relying on local governments to deal with the compliance issues they created so they can cut more taxes at the state and federal level.  If you live in a community where levies haven't increased in 11 years, it's called passing the buck.

Speaking Up About Changes in Ohio

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 23^rd.

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:

http://dodd.ohio.gov/OurFuture/Pages/default.aspx

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

The Writing on the Wall in Ohio is L'Arche Internationale

The writing is on the wall for our friends and families in Ohio.


The new "employment first" initiated by Ohio Governor Kasich, an Olmsted Act ruling from 1999, and changes in the mission of the Hamilton County Developmental Disabilities Services (formally MRDD) only value our family and friends if they are "employable" and can live without traditional specialized services.


What further compounds this is that funding for traditional specialized services that do not complty with Olmsted and "employment first" initiatives are losing funding from federal, state, and local level. So where will these people go when all the funding and support is gone?

In Hamilton County Ohio, you are only valued as a human being if you can work or do not require traditional specialized services.



We can do better  for this population of our family and friends.

Olmsted Act and Employment First Initiative is Bad News in Hamilton County Ohio

I sat in the Hamilton County Developmental Disabilities in Ohio Planning meeting last Monday and became overwhelmed by grief over the change in direction of their mission serving children and adults with special needs. I'm speaking of the population children who are severely disabled and delayed and unemployable. The population that relies on "traditional specialized services" because they cannot be fully mainstreamed into the community.  It appears our children and adults in Ohio are only valued if they are "employable" or if they can live without traditional specialized services due to changes that were introduced by Governor Kasich of Ohio with his "Employment First Initiative" and the Olmsted Act ruling.






It's all happening too quickly to really understand how all these changes will directly impact our family and friends with special needs. It is hoped it is explained why HCDDS was not permitted to increase their budget over the years even though their caseload increased by 80% particularly to prepare for this "employment first" mandate which has been further compounded by "Olmsted Act" ruling.






In Ohio, there is a population of families and friends who are losing specialized services due to a loss in funding at the federal and state level because of the Olmsted Act. This Olmsted Act 1999 ruling guarantees that our family and friends will have placement in their community. Unfortunately, it's being used to take away valuable resources from other people who really need specialized services to maintain their independence and quality life.


Currently federal and state are claiming they no longer have to fund specialized services because it "isolates" and "segregates" children and adults from the community. Basically they are placing that "one-size fits all" template over a very large population of children and adults with very different special needs and disabilities. However, there are many children and adults who required specialized services BECAUSE it is the only way they can participate in society. Some have needs that are so severe, they need highly specialized services.










Where will they go? In Hamilton County, clearly you are only valued if you are "employable" according to this new HCDDS mission. If you are not employable, ironically you cannot not be integrated into the community.

Dear Governor Kasich of Ohio...

John Kasich, Governor

Riffe Center

77 South High Street, 30^th 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?