Wednesday, July 15, 2015

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? 


Vitually a Teacher said...

Very important to make some noise for our kids/adults. Although I have a few year before my boys reach adulthood, I think about it all the time. Good on you for speaking up!

Elisabeth's Mom said...

Thank you. You are a terrific resource for stay at home caregivers!