Time to Act in Minnesota

According to the Arc Minnesota “the 2% provider tax on health care services is the main source of funding for the Health Care Access Fund, which contributes nearly $450 million to Medical Assistance in Minnesota. The provider tax is scheduled to expire or “sunset” at the end of 2019, which would leave a hole of more than $900 million in our state budget – placing health & human services and education funding at risk.”

This is a very real risk for me and others with disabilities who depend on Medical Assistance to help cover medical costs, that in my case aren’t covered by my family’s private health insurance. Medical Assistance and the waiver program that I’m on cover the expense for needed personal care support staff. Taking $900 million from the Minnesota state budget and not having a plan to fill that gap is short-sighted. Even me as a 20-year-old can SEE that it’s short-sighted!

My medical costs and need for care are not going to go away when funding gets decreased or goes away. It just means that those of us with disabilities and our families will struggle more than we already do. There will be very real people with disabilities who will end up going without needed care or will start getting denials for needed equipment. My Republican state senator will say not to worry, that I will get everything I need. But, it’s not true. You don’t get the medical care, support staff, or needed medical equipment you need, when there isn’t money to pay for it. I depend on Medical Assistance services and medical care to live in my community and do what I do to make the world a better place.

So, to legislators who are not in support of continuing the provider tax, think of your constituents with disabilities and their families. Think of me – would you say no to my power wheelchair? My support staff? My surgery to correct my messed up toes? My deep brain stimulation surgeries? My communication device or hearing aids? My physical, occupational and speech therapies over the years. My care costs a lot. Don’t cut funding for this care unless you address how you’re cutting the costs of medical care in this country. Don’t leave me hanging.

Contact your Minnesota state senators and tell them to NOT let the sun set on the provider tax in Minnesota! Not sure who represents you? Enter your address into this Legislative District Finder to find the contact information for your State Senator.

#DontLetTheSunset

5/26/2019 Update

Relieved that the Provider Tax was agreed to as part of the final budget negotiations with Governor Walz, Senate and House! Consistent and stable funding is so important for me and others with disabilities. Thanks to Governor Walz for his support of the Provider Tax! And thanks to my Representative Ami Wazlawik for supporting issues that matter to me and make a positive difference in my life and others with disabilities.

Hello 2019

In 2019 I want to write more about the challenges in front of me to keep moving towards independent living. It’s not easy to figure all this out and I’ll share what I find out in case it helps others in their own lives or just so everyone has a better idea of what’s involved. And, of course I’ll also be blogging about political issues impacting disability rights, weird random stuff and my experiences with accessibility.

As you know, I took a break from Twitter and Facebook to work on my book, mainly. It has been a couple of weeks since I started my break. I probably wrote about the same amount in my book than if I had been on Twitter and Facebook. So, maybe social media isn’t as distracting for me as I thought. I’m okay with not being sucked into the non-stop drama of our current political reality. But, think instead of a total blackout, I’m going to just limit my time on social media – maybe 15 minutes in the morning and 15 minutes in the afternoon.

Here is what I will be focusing on over the next several months because all of these things need to be in place for me to live independently. I love my parents but like any young adult, I really would love to live in my own place in the next couple of years. So, how do I get from here to there?

My first step is that I need to get my Consumer Directed Community Supports (CDCS) Medicaid/Medical Assistance waiver figured out. This is the funding that helps pay for my support staff, adaptive equipment not covered by insurance, etc. I mentioned this in a previous post, Minnesota Department of Human Services is now requiring me to create my own small business to hire and manage my support staff. My parents and I will be meeting with several different providers over the next several weeks to decide if we’ll stay with our current provider or switch to a new one. Then I’ll need to complete all of the paperwork to become a small business and rehire all of my current staff and have them go through background checks again. The provider I choose will handle the payroll but we also need to figure out how to protect me from liability as a small business (this is more than just worker’s comp and unemployment insurance!). There’s a lot to figure out and it has to be done and in place by March in order to keep having the choice and flexibility for me to hire my own staff. This may all sound confusing. That’s because it is. Thanks very much DHS for making my life more complicated than it already was.

Along with figuring out support services, I’m also trying out new ways to continue growing as a writer. I’m going to try finding a class to take either through someplace like the Loft Literary Center, White Bear Center for the Arts or an edX online class. This could be a fun way to stay connected with other writers and improve as a writer.

And, guess what? It’s almost time for the new legislative session in MN! I’m going to try to get to more of the Disability Days at the Capitol to continue my advocacy for disability rights. Just got my tickets to the Walz-Flanagan Inaugural event at the Orpheum. I’ve heard back about wheelchair accessibility and also have asked if there would be CART captioning.

And, I have a whole lot of doctor and therapy appointments coming up this month – one or two a week. I’m getting botox on my lower leg and foot that’s been so painful on January 9th. Hoping it works.

I’m also going to keep having fun listening to music, watching AFC Wimbledon football (soccer) matches, going to concerts, and hanging out with my family. My younger brother is graduating from high school this spring so life is going to have a lot of changes this year for all of us.

Happy New Year everyone!

Too much social media

Social media is getting too many hours of my life, time that I could be using to read, write and get work done. Because of this, for the next couple of months I’m going to cut back my time on social media so I can focus on writing my first draft of my book and my blog.

I also need to learn more about changes to how my staffing will work with my Consumer Directed Community Supports (CDCS) waiver funding which is how I pay for support staff and other adaptive equipment costs not covered by health insurance or Medical Assistance. Minnesota Department of Human Services (DHS) is now requiring that I become my own small business to continue hiring my own support staff. Up until now, an agency had been the employer of record for my staff. There’s a lot to learn and lots of paperwork for my parents and me to wade through. I’ll still be here, but I won’t be on Facebook or Twitter as much.

Here are three reasons why I am putting some limits on my social media:

Experience: In my book, my two main characters are on the run. They can’t exactly use social media to contact anyone. So I plan to experience what my two characters are going through, to give a better description.
It is time to shut down: After reading An Absolutely Remarkable Thing by Hank Green (absolutely amazing book!), I have been doing some rethinking about how I use social media. Sometimes it doesn’t feel like a very healthy reality.
I have too much other work to get done and there’s lots of other fun stuff to do. Like on Monday afternoon, I’m going to the Minnesota Council on Disability’s Legislative Forum on Disability. Being a disability rights and inclusion advocate means I need to stay informed about legislation that impacts my world.

Starting next week, I’m taking a break for at least the next several weeks, and then will be checking infrequently. You can message me through my blog and my mom will be keeping an eye on my Facebook @JustinSmithWrites page if you are trying to reach me. My mom will tag me in any of her Facebook or Twitter posts if anything cool is happening with me.

Have you ever had a social media blackout? Any tips on how to survive it? Wish there were some football (as in SOCCER) matches to go to! At least I have AFC Wimbledon to watch online and FIFA 19 to play on my PC. GOAL!

Another typical week

Just a reminder – my typical weeks are why we need to protect Medicaid and make sure we have access to good, affordable healthcare!

Speech therapy on Tuesday. Communication device fell off my chair but fortunately seems to be working just fine. My speech therapist made some brilliant changes so that I can’t accidentally hit the speak bar when selecting a word-prediction choice. And, I can more easily program my own buttons now on my Quick Stuff page. Watch out world!

Also, got my thigh strap contraption repaired while I was speech appointing. It broke last week.

Appointment with my complex movement team doctors on Thursday. Trying some new Deep Brain Stimulation settings. 4.5 volts seemed to be too high and ended up making my movement even weirder so went back to 4.0 volts. In a couple weeks, dad will sneakily without my knowing switch to a 3^rd new setting that turns on 2 different leads that are deep in my brain. One of the coolest things, was that my neurologist did a “software update” on my stimulator implanted in my chest and now the stimulator should last for another decade before having to be replaced. We had thought that it would need replacement after 7 years which would have been in about another 4 years. The fewer surgeries the better since I have had issues with staph infections. The grand experiment of Deep Brain Stimulation (DBS) continues.

Friday night was Dead Pool 2 night while charging my DBS. It takes about 1-2 movies a week to charge my DBS.

Upcoming surgery on November 9^th to remove my lower braces – and an out-of-whack lower tooth. YAY!!!!!!!

Had an awesome end of the week when I went door-knocking for Ami Wazlawik who is running for MN State House Representative for 38B. She’s awesome! Made my dad come along and help out this time!

(P.S. I’m actually at my pre-op physical when this is being posted on my blog. The magic of scheduling blog posts on WordPress!)

Midterms on Nov 6: Clear choice for me in Minnesota

The DFL candidates all are more supportive of disability rights and issues that impact my ability to choose where I live with the supports that I need to be included in my community. Social services that support people with disabilities to be able to live in their communities are critical. This means fighting for:

Affordable healthcare and Medicaid (Medical Assistance in MN)
Affordable, wheelchair accessible housing
Inclusive job opportunities and education

Tim Walz has gone out of his way to come and talk to me from the first time I met him at the Organizing District and State DFL Conventions. He has made me feel that I do have a seat at the table. He supports the very services that I depend on to help me live and participate fully in my community. I am included as part of #OneMinnesota.

I also stand with Senators Amy Klobuchar and Tina Smith and Representative Betty McCollum in bringing their voices to the US Senate and House. They will help defend Medicaid which is so critical to those of us with disabilities. Cuts to Medicaid will impact me and others you may know who depend on Medicaid for support staff, medical care and equipment. They also speak up for fairness, respect, and decency for all.

My family has received countless negative attack flyers against Ami Wazlawik, who I support for State House District 38B. She is an awesome candidate who listens to people in her community and has done nothing but run a positive campaign. I’m signed up to help with door-knocking again next weekend! I know she will be there to listen to my concerns or about issues that are important to me when she’s elected to the State House. Because she is doing that now!

Issues that impact the disability community matter. Who is listening to those of us with disabilities? Who is going to fight for issues that matter to us? My vote is with Walz/Flanagan, Klobuchar, Smith, and Wazlawik.

You can learn more about the candidates and make your own choices from MPR Voter Guide or Star Tribune Election Guide.

GOTV and CHVRCHES

GOTV

Busy week this week. For the first time ever, I went door-knocking with my mom. I’m hoping to get out more in the next month for Ami Wazlawik for MN State House 38B and my other favorites like Tim Walz for Governor, Amy Klobuchar, and Tina Smith for US Senate. Each of these candidates support disability rights and issues that are important to me, like affordable health care for all and protecting Medicaid.

So, get out and vote! Make your voice heard!

Chvrches

Another awesome concert at the Palace Theater in St. Paul. Chvrches was amazing and energetic! The wheelchair accessible seats at the Palace are great – no one can stand in front of me and block my view.

As we get closer to winter, it’d be nice if they’d let those of us using wheelchairs enter by the shorter will-call line. There were really long lines and it’s easier for people in wheelchairs to get their spots before it gets too packed.

By the way, my Mom loves being able to type messages back and forth with each other on my communication device because it’s super loud and hard to hear when you’re at awesome concerts.

Best thing about going to loud concerts with #aac user is that @JustinDFTBA can type sarcastic messages to his mom who would otherwise not be able to hear him #accessibility #a11y pic.twitter.com/1KcY6v1B2L

— Kris Schulze (@kris_schulze) October 3, 2018

Governor’s Forum on 9/13 cancelled

I just got this cancellation yesterday for the Governor’s Forum that I was looking forward to going to on Thursday.

“Unfortunately, event cosponsors have had to cancel the event due to lack of confirmation from the candidates. We are still working to ensure that candidates for Minnesota Governor address and prioritize issues of importance to members of the disability community, and hope all of you will connect with candidates to share your personal stories as well.”

I feel disappointed that I won’t be able to hear from the candidates about where they stand on issues that truly matter to me as a young adult who depends on support services and Medical Assistance to live in my community.

As I said in my last post, we need a Governor and legislature that will do everything they can to protect services so that people with disabilities receive the care and services they depend on. Ask candidates what they will do to protect health care, Medicaid, and support services for people with disabilities.

We need to make our voices heard so that candidates know how important these issues are to the disability community!

I’m excited to read former Senator Dave Durenberger’s new book, When Republicans Were Progressive. He was most proud of the bi-partisan work to pass the Americans with Disabilities Act (ADA). I was so honored to meet him and present with him at last year’s MN Capitol Grand Opening Celebration (YouTube: my speech and Senator Durenberger’s speech). Listen to the Minnesota Public Radio interview with Dave Durenberger. It is a bipartisan book! Launch party is on October 16th!