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.

Justin in wheelchair, dad holding Justin's footJustin sitting on Mom's lap in chair next to hospital bedSmiling Justin laying on bed with casts on each leg propped up on pillows

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.

Justin shaking hands with Tim Walz with Peggy Flanagan smiling

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!

Ami Wazlawic and Justin Smith smiling

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.

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!

Justin reaching out to air-fist bump with Senator DurenbergerI’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!

Vote! My letter to the editor

My First Letter to the Editor published in White Bear/Vadnais Heights Press, August 8, 2018

This coming Tuesday, August 14th, is the primary election for governor in Minnesota. As a young person living with a severe disability, I know that the next election can have a huge impact on the disability community. I am supporting Congressman Tim Walz in the DFL Primary for Governor because I believe he will be able to pull people from across the state to protect Medicaid and improve education for all students across the state.

We need a Governor and Legislature that will do everything they can to protect Medicaid services that people with disabilities depend on to live in their communities. I’ll be voting for Tim Walz and Peggy Flanagan because they will work together to keep our state moving in the right direction even when faced with threats to Medicaid and other services that people with disabilities need.

Tim Walz was a teacher and knows the importance of making sure that education is inclusive and accessible for students with disabilities. Funding education, special education, and making college more affordable are important in making sure that all students are ready for the jobs of the future.

We need to elect a governor who can work productively with either party to get stuff done. The needs of the disability community do not change depending on what party is in control. Tim Walz will keep moving our Minnesota forward and make sure that those of us with disabilities are not left behind.

 

 

 

 

 

Marijuana, college, and more

Medical Marijuana

Recently, I have been trying medical marijuana and it has worked better than most medications that I tried. One of the components, CBD, is a pain-killer and has worked on the joint pain in my knees and hips.

Screenshot of Medical Cannabis page of MN Department of Health website

College

Recently, I toured a local private college and I decided that I am probably not going to pursue a private liberal arts college at this point. Right now, I’m still working on communicating more quickly, which is what I would need to do if taking more college courses. Even taking one class at a time at my community college, takes up most of my time because of how long it takes me to type on my communication device and even on my computer.

The time and energy it takes to do more than that, would mean my life would feel pretty crazy. I want to also do other things, like stay involved in helping get my favorite candidates elected this fall, explore other work opportunities, continue public speaking, blogging, and creative writing.

So, my search is for creative paths besides college, where I can do what I love to do, continue to learn, and make a difference in the world while balancing that with the time and energy it takes just being me.

Politics

Justin with I voted sticker on next to Vote Here sign and US Flag

On August 14th, don’t forget to vote in the primaries, if you live in Connecticut, Vermont, Wisconsin or my home state of Minnesota. Early voting in Minnesota is underway if you can’t make it to the polls. If you are voting in MN, you can request your early voting absentee ballot from the MN Secretary of State’s Office website.

I’m going to go vote in person because it’s cool to go to the polls on election days. I’ve loved being more involved in the political process where I can make my voice heard about issues that matter to people with disabilities. So, show up and get involved! Vote! Elect candidates that will support the issues that matter to you. Show up!

Next blog post

A review of the brilliantly written young adult novel, An Authentic Experience, by Kelly Wittmann.

Question for you

I want to ask you something. What do you want to see me write about in future blogposts? Comment or send a message with your ideas.

 

Happy summer

I’m having a pretty low-key summer. My mom and younger brother are ditching me and my dad to go spend almost 3 weeks in Germany. My brother’s been studying German since 6th grade and my mom studied for a semester in Germany a really, really, long, long time ago. Mom, could you please bring me back some World Cup Germany Futbol socks!

Other stuff happening this summer

Some Sports

FIFA World Cup Russia 2018 logo

I’m having an awesome time watching the World Cup. Thrilling. Exciting. Nail-biting.

I am a huge fan of AFC Wimbledon so have been following them online. They are a fan-owned team.

Some Medical Stuff

I just started trying out medical marijuana and will let folks know how it’s going in a month or two. The hope is to reduce pain in my knees, hamstrings, and hips and calm involuntary, jerky movement and muscle spasms. Minnesota has approved the use of medical marijuana.

Some Writing

Continuing to write my action-packed, mystery, romance novel. I’m on page 86. I’m going to get a bunch done when my mom and brother are on vacation.

Some Politics

The Minnesota Primary is coming up on August 14. I am going to volunteer for the candidates I support. If you live in Minnesota, remember to go VOTE! It’s important! If you’re not around on August 14, you can vote by mail or in person through August 13. Check out more information about voting at the Secretary of State’s website.

Some Ideas for the Future

My dad and I are going to go tour Augsburg University on Wednesday. I have been taking classes at Century College, a community college near where I live. I’ve heard really good things about Augsburg and would like to see if it might be a good fit.

Don’t forget to be awesome!

Thank you, Dad!

People may not always realize that family life might look a little different when someone in the family has a disability. My dad has been there for me from day one and is not only my dad, but also my main caregiver. He has been home full-time for the past 2 years. During that time, we’ve been figuring out how and what I need to live as an independent adult. He was there with me through every weekend of Partners in Policymaking. He even got to be my helper at college when we couldn’t find a daytime personal care attendant.

Justin in wheelchair, dad holding Justin's foot

My dad fixes and troubleshoots issues with all of my equipment – from wheelchair, to communication device, to shower chair, to wheelchair lifts and ramps. He’s the best cook ever. Seriously, his homemade pizza is amazing! He is there for me for all medical appointments and holding tight during some of my scarier and more painful stays in the hospital. Over the years, he has carried me to the tops of fire towers, lighthouses, onto sandy beaches, swimming in oceans, to wheelchair-impossible corners of Yellowstone and other parks to see waterfalls or other natural wonders – he would make sure I got to experience everything I wanted to experience even when there were barriers in the way.

Dad holding Justin on beach by young boy

I think sometimes people assume that moms are doing everything… in our family, it’s always been both of my parents working together and holding on tight as we go through all the curve balls that life throws at us. I am so lucky to have such loving parents.

Justin in gait trainer giving high five to his dad on accessible baseball field

On this Father’s Day, I am holding on to love and letting my dad know that even though it’s not always very easy, and it may not be the path he had expected, that what he does each and every day rocks. I am who I am today, because he has been there for me through all the crappy times and through the awesome times. I love you, dad!