What Trickles Down ...

Yesterday, I had a major breakthrough in the principal's office at my daughter's school. It was the first time I cried in a very long time. I actually wailed.  My fears, worries, and anxieties about being the primary caregiver  for my daughter for the rest of her life finally sank in over the summer.    I say this because after spending the last 15 years attached to my daughter relying on me physically, emotionally, and socially, I saw no real independence for her.

 This reality hit me like a ton of bricks as we are approaching her last year of school. She is aging out of the school district and will lose  community connection through services we received through the school district.   In exactly 10 months from now, 180 days, she will be graduating from school with no future except to spend the rest of her life doing what we've been doing the last 15 years without the benefit of a school community which at least gave her a break from me. Although we have a transition team in place and community advocates at the table, we  don't have a real clear vision for what Elisabeth's life will look like after graduation.  We don't have a destination.  We don't have enough funding to support her with purposeful, quality, and dignified  care.

In Ohio, most of the funding has dried up for waivers and federally protected, state certified adult daycare and recreation/rehab workshops due to a ruling on the Olmsted Act of 1999 guaranteeing community integration for all adults with disabilities.  Waivers are additional funding for families who keep their adults at home but need community integration.  Waivers have been unavailable for the  Ohio families because there is no state, federal, or levy funding except in extreme emergencies.

Recreation/rehab day centers/respite care centers, for example, also  rely upon waivers to keep their organization going because most people can't afford to pay privately.  Weekly cost for most rehab/recreation daycare centers is estimated to be more than what most people make in a week at job so many families without waivers keep their adults at home.

 Disability Rights of Ohio is also  threatening lawsuits for any agencies or services that appear to isolate or segregate people from the community. As a result, many agencies and organization are being forced to turn away waiver funding unless it complies with the ruling.  What Disability Rights of Ohio fail to recognize is that local communities are not equipped with sufficient resources to integrate all of our adults with severe disability labels into the community.  It took at least 40 years to develop and implement programs helping people integrate into community life according to their ability and now they want to close everything down and redirect this population directly into the community.

 It's the trickle-down effect in action.  Local recreation and rehab workshops that were designed to help integrate people into community life lost federal and state funding over the years and had to close or limit enrollment to adults with special waivers.  As funding declines over the years, so does participation and enrollment.   And declining enrollment gives  politicians an excuse to defund more services and agencies because it looks like there is no need for it.  It's a vicious circle.  Caught in the middle are caregivers, advocates, agencies, and related services  struggling to find placement for their adults in the community.


Caught in the middle of this very messy business are caregivers like myself who have no option but to keep their adults with severe disabilities at home.  I remember what it was like in 1972 for people with severe disabilities without a destination or  resources to be fully integrated into their  community so that's why I was crying in the principal's office. I was crying because I knew that's the direction in which she was heading.