When Wheelchairs Are Not a Cross to Bear in life ...

Yes, I can understand when a person's life has been altered after an accident or surgery or a disease attacks their  body, it can be a game changer.  Ask anyone who had to use one while recovering from surgery or car accident or illness and they'll give you an earful. It is a navigational nightmare using one in a home and out in the community and I can totally empathize with their woes and challenges getting to and from places.  I don't exactly enjoy lugging a wheelchair  in and out of the car or transferring my daughter into the car in the middle of a thunderstorm, but it's what we do.  So let's try to do it with dignity and respect on behalf of the person who needs help regardless if their condition is permanent or temporary.

For my daughter and other children who have conditions that are permanent, it is not a "cross to bear" or a "death sentence" to be stuck in a chair.  The only real burden here for  families without financial means for a wheelchair lift, respite, nurses aides, etc., is that not having these things creates barriers. It prevents them from being the family they want to be.  It prevents the person in the wheelchair from being the person they were meant to be.   Since wheelchairs are  their only path to their independence, we must learn to how to make life more accessible for them.  Wheelchairs give our family and friends dignity and quality life.  It gives them purpose. It doesn't define who they are, it defines what they are capable of being. Without a wheelchair, my daughter would not be able to attend school, cheer-leading, or become involved in the community.

So the next time you see me with my daughter, please feel free to offer to help her.    Somedays I can manage fine, but it's okay if you ask her if SHE needs help.  There are other days you will find her appreciating your offer to help.  She may even smile and reach out to say hello.  And afterward, I hope you feel good about reaching out to help another person continue living their life with  dignity and respect they deserve.

Happy Holidays.

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.

Making Spirits Bright!

I look forward to the holiday sensory overload to stimulate our daughter, who is now 20, and what better time of year than the holiday festival of lights season to do this? Our society certainly is not at any loss for how we celebrate this season of hope throughout December so we just bundle her up, load her wheelchair into the car, and set out to go on an adventure. Of course, not all children and adults with special needs can tolerate overloading the senses throughout the holidays.  For some parents it's an absolute nightmare to take their children out into the community or places of worship due to some pretty heavy sensory issues.

There is a whole host of holidays beginning with Advent which is a celebration of spiritual renewal and preparation. Some of Elisabeth's friends celebrate Diwali, Hanukkah, and Kwanzaa. Hanukkah we know begins December 16th this year which is a big festival of lights, hope and renewal, jelly donuts, bread, and potato pancakes.   For Elisabeth, it's that one time of year guaranteed to take her on a journey through the senses beginning with the lights on the houses and candles on advent wreath and menorah. There is the overwhelming smell of cookies and bread baking, candy canes dipped in hot cocoa, and whatever recipes we can rustle up together as a family.   She loves the sound from the carols and bells ringing and the warm and cold feeling from the hustle and bustle of people she loves coming in and out of her life wherever we go. She loves to visit her neighbors bringing cookies, preserves, and whatever canning specialties we have in storage.

It's the one time of year I really enjoy taking her to shopping malls, skating rinks, and concerts because people are so responsive to her needs.  She is usually greeted with cheery hellos and laughing (sometime crying) children.  Sometimes, people come up to us and ask, "Aren't you concerned she's cold?"  One time, a very concerned ice rink employee skated passed us motioning to take the wheelchair off the rink. Calmly, I explained that this was the only way she could enjoy skating and I would be willing to sign a release not holding them responsible for any accident we might incur. I also pointed out that little kids see her as a "safety" feature since they like to use her wheelchair to balance out when they feel like they are going to fall. It also keeps me from embarrassing myself from falling on the ice which I am more likely to do without Elisabeth's support!

It’s the one time of year guaranteed to lift her spirits by the way she physically and emotionally responds to all the winter  traditions and festivities that most of us take for granted. She knows there is something very special  about this time of year and we truly enjoy watching her moving through this wonderful awakening sensory experience.   Even when we had to be in the hospital over the holidays when she was younger for her surgeries, she tolerated being there because it was full of decorations, music, and holiday cheer.

Happy Holidays!