Most people know I am not a complainer and that I always, always look for the good in most situations.
And I’m sure one day, I will find the good in this, too. Today, it feels anything but that.
Sure, I put on a smile and do my work. But the heaviness in my heart is ginormous.
Some of my closest friends know the recent unfolding of some devastating news. As a private person I intended to be quiet about this, too. But after thinking long and hard I realized that maybe by speaking it, someone will be inspired to see the need for serious changes in our world.
Since my daughter was 10 years old (she is 26), I have been her certified nurses aide. This allows her to have the help she requires and me to be paid for providing. I also receive health insurance through the home health care employer I work for.
Last week I learned that the state of colroado and the resource exchange has determined that she is no longer eligible to receive services.
What does that mean?
There are layers to implications to this. It means most importantly that if I were to die, she would NOT have the services in place for her to receive the care she needs, except in a completely inappropriate placement like a long term care center. Secondly, it means that this incredibly hard working woman now loses an income and worse, health insurance. And finally, it means she doesn’t get the services she needs and is eligible for. It is all handed back to the parents to do, and the state must think parents of special needs people live forever.
I have a much needed surgery scheduled in three weeks. I have multiple preexisting conditions that prevent me from getting AFFORDABLE insurance which leaves me to have to pay for incredibly expensive, limited, and costly out of pocket insurance that covers the minimum of what I need. And deserve.
For the pencil pusher at the state level and at the agency who oversees funding—how dare you.
I’m not sure what my next steps are. Perhaps get a j.o.b. and release my dream of what I’ve created. Perhaps I sit and do nothing but pay the premium and put off surgery until something better comes along.
Mostly I pray that one day people with disabilities will have the protests, rallies and out spoken support that other groups seem to get. Until then, this most vulnerable population gets swept under the rug, forgotten about except for their very tired family to deal with.
