Isn't it amazing the way our lives take twists and turns?? This last week has been totally strange and unexpected. Here in Virginia we have a new governor. As all politicians must do, Governor McDonnell has been given the unenviable job of balancing the budget for our state; a budget which dare I say is horrendously out of control. In seeking to make the changes that are required to make the state finances more equitable, he decided to make some cuts to Medicaid waivers. For those of you who are unaware (and to be honest, I was unaware just over a year ago) these waivers provide opportunities for individuals with disabilities to have care provided in their own communities; allows them freedom, independence and support. As well, for families with disabled children the waivers provide assistive care (attendants) in the home. For us this has given me the chance to spend more time with my older kids, my husband, and take some personal time. It is also providing Aiden with a special helper; someone who works with us in reaching Aiden's goals in speech, physical and occupational therapies.
The proposition was to remove what is called the "consumer directed option" from the waiver provided services. For us this would mean that we would no longer have the choice of attendants; we would have to accept any person who was sent to us by an agency. We would not be able to interview the attendant; not be able to asked questions concerning the person's background; not be able to fire the attendant if the fit was not right (or if heaven forbid something terrible were to happen). I am not willing to give up that much power to anyone; especially a stranger and especially with my littlest baby. This cut would effect not only children with disabilities, but also disabled adults and elderly.
So how have Governor McDonnell's proposed budget cuts caused twists and turns in my life's road? Well, as you can imagine I was a little shocked and lots concerned. I appreciate the help that we receive. I have seen improvements in not only Aiden, but in my older kids as well. I knew that they were in need of my time, but I have had so little to give them until the waiver gave us help. I was also angry....Why should the people who have so little be responsible for carrying so much of the burden? So when I was asked to contact some people about the cuts I jumped in with both feet.
Let me start by saying that I have never seen myself as a crusader. Although I chose a career in a field with children who usually lacked care or who were shuffled around because they were unwanted, I did not see my advocating for them as a crusade. I also thought that I understood the importance of the parent advocate. Now I truly understand; if I don't stand up for Aiden and those like him; if I don't encourage others to do the same; if I do not try to change the system so that things are better than I have no one to blame but myself. Conversely, my children would have no one else to blame but me.
So I made call after call, forwarded every email I received, printed multiple letters to as many politicians as I could. How did it turn out? Yesterday we heard that the Senate and House here in Virginia decided to remove the consumer directed options from the chopping block....for now. The actual budget in it's final form will not be looked at until the end of April so I will continue to work towards better treatment, better care, better options for children with disabilities.
I had no idea that some day I would be called on to "rally the troops" (small though they be), or that I would be interviewed by television reporters as if I was someone with a worthwhile opinion. On some level, I believe that I had something to do with the decision to leave funding in the budget for these services. Could it be that this is a new path for me; that I might be in the right place at the right time? Maybe it is just that I want to feel that I am destined for greatness; or maybe I just need to think that something not just good, but great will come from the struggles that we've encountered with Aiden, or maybe I just want to feel like the dreams that I had for Aiden won't go to waste. Maybe it is all of the options. I will wait and see. I hope that you will wait with me.
I will keep you posted as to how this works out, and if you can be helpful by contacting your delegates. As well, I cherish your prayers.
Blessings to you all,
Christa
To see Aiden's interview go to
www.whsv.com/video/?autoStart=true&topVideoCatNo=default&clipld=4560206&flvUri=&partnerclipid
(Ok, so if that doesn't work you can go to whsv.com. When the home page comes up go to the video search engine and type in medicaid waiver. The search engine should give you several options. The picture w/a little boy wearing a blue pullover is Aiden. ) :)
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