This has been a mixed couple of weeks with some disappointment, excitement, and frustration with the unknown.

CDCS Legislation

The Consumer Directed Community Supports (CDCS) legislation I had testified for about a month ago in the House was added as an amendment to the Human Services Omnibus Bill in the Minnesota Senate Human Services Committee last week. It will help provide more consistency in what’s covered or not across the state. But, I am disappointed that the part of this legislation that would have made the most self-directed option work for me was removed from the amendment. They removed the part that would have addressed the budget disparity between CDCS and more traditional services.  I wasn’t able to testify in support of the bill but was able to include written testimony. Here was my testimony at the MN House Human Services Policy Committee hearing if you want to learn more about this legislation: Time for change – Justin Smith Writes

Why does this matter?

I am now going to have to switch from CDCS to In-Home Support with Training and Nighttime Supervision services through more traditional providers. This means that the state of MN will now be paying almost twice as much as they would have had they just provided me with the budget amount that would have fully covered the staffing I need to continue living independently. Let me repeat that – this is going to cost the state MORE for me to be on traditional services and I’ll have less flexibility and choice than if they would have simply covered the staffing I needed under CDCS.

Not only that, since my parents started contacting providers 2 weeks ago, so far we haven’t heard anything back. This may be a long process and, in the meantime, my current CDCS budget is too low, and I am having to go home every weekend and cutting staffing hours for my remaining staff. This means that my mom and dad, old backs and all, are having to provide more of my care than I would like. I think I always expected that as an adult living in my own apartment, that my parents would be able to step back and just be my parents instead of my primary caregivers at this point.

Moving on

Of course, when policies and systems aren’t working how they should, then it’s even more important to be involved in the political process. This is where I can make my voice heard and where I can support candidates that I believe in. So, yes, I raised my hand again to be a delegate to the state convention. More from Duluth at the end of May! I know we don’t all agree on politics, parties, and whatever, but the important part is to show up and get involved to create positive change. That’s what I choose to do.

About that knee

My knee is improving. An interesting thing happened on the way to the MRI a couple weeks ago. My deep brain stimulation leads in my brain have an open circuit. This means absolutely no MRIs and I’m meeting with my movement disorder team this week to find out if there are any next steps as far as an open circuit is concerned. On the plus side, my knee has started feeling better with the extra help of Lidocaine ointment. I was even able to make it through over 6 hours of a convention last weekend! And then went to half of a MN United match that night. Yay!