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:

  1. 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.
  2. 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.
  3. 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!

Smiling Justin sitting in wheelchair at soccer match in US Bank Stadium

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.

Why it matters

Governor Candidates’ Forum on 9/13

There are some key issues that impact people with disabilities that I think everyone should be thinking about as they decide who to vote for in the midterm elections. I’ve said this in previous posts and will say it again – SHOW UP! It’s important to show up now and find out more about where candidates stand on issues that impact people with disabilities. On September 13th, I will be going to the Governor Candidates’ Forum on Disability to support Tim Walz who I caucused for last winter and supported in the State DFL Convention (check out my Adjournment post to see the news report I was featured in!). I believe that he will support the issues that matter to the disability community.

2 in 5 people have disabilities and 1 in 10 have severe disabilities. We are your family. We are your friends. We are your neighbors. We are your constituents. We are you, at the moment when you get a life-changing diagnosis or are in a crash where you may end up with a permanent disability. In a blink of an eye your life may become one where you need Medicaid or social services to help live independently in your community.

 

Health care and support services

I know that I say this every time I write about this, but health care is freedom for people with disabilities. Cuts to health care and Medicaid means losing freedom. Medicaid, known as Medical Assistance in Minnesota, is my lifeline for medical care, support staff, medical equipment and assistive technology that help me live a full life in my community. 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. If they say that their goal is to cut human services – that means they’re trying to cut the very programs that I and others with disabilities depend on. Do you really want to vote for that person?

There are many other issues impacting people with disabilities, including affordable housing, transportation, employment, education, and finding qualified support staff. All of these issues are important to me as I carve out my adult life. These are the things that matter as I look at candidates and find which ones will also see their critical importance and impact on making sure that people with disabilities are not left behind.

SHOW UP Now!Justin shaking hands with Tim Walz with Peggy Flanagan smiling

If there are candidates you support, go volunteer for their campaigns. Put up some lawn signs. Write letters to the editor. Talk to your friends and family about why voting matters and what candidates you support. Go out and vote in November. SHOW UP!

Also, big shout out to my Aunt Kelly Smith who is running for State Representative in Kentucky. Proud of her and hope she wins! Kelly Smith For Kentucky website