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

Tearing at the seams

Perfect paradise, tearing at the seams.

– Imagine Dragons

One of my favorite bands, Imagine Dragons, has this line in Bad Liar. When the song came out, I was in a place of pain and this helped me forget. This was actually last fall and the pain has been at a steady 6 with jumps to 9 out of 10 for so long. Just to recap –have seen multiple specialists over the past 5 months figuring out what to do.

My surgery is now two weeks away on April 26th. I’ll have two months of pins in both of my big toes and recovery with lots of lying around in bed, watching Netflix, Amazon Prime and On Demand. For the next couple weeks, I’ll be putting together my playlist for the hospital – the music that makes me feel strong!

I am going to have my mom post as soon as she can after my surgery to let everyone know how I’m doing. Justin smiling with concert crowd behind

So look me in the eyes
Tell me what you see
Perfect paradise
Tearing at the seams
I wish I could escape it
I don’t want to fake it
I wish I could erase it
Make your heart believe

-Bad Liar by Imagine Dragons

 Bad Liar on YouTube How awesome that it’s captioned!

Previous posts about toe-mageddon

To Err is Human

I watched a documentary, To Err is Human, with my mom and dad last weekend. Like Cal Sheridan, who is featured in the film, I also have kernicterus because of a medical error. Did you know that medical errors are the 3rd largest leading cause of death in our country? There are as many as 440,000 preventable deaths every year. Far more than that are living with the long-term impacts or injuries from medical errors. For me, it means severe cerebral palsy, auditory neuropathy, visual tracking difficultiesBlack and white photo of dad holding baby Justin, and some messed up toes. Had my newborn jaundice been tested and treated in time, I may have had a very different life. But, it wasn’t – and I don’t have that different life.

Watch this documentary and find out more about what we can do to improve the medical system so that it’s safer for all of us. We NEED to do this!

Surgery

Speaking of medical stuff, my toes surgery is on April 29th  with a night or two in the hospital. My mom is going to write a guest post after to let everyone know how I’m doing. I’ll have surgery on both big toes with a couple months’ recovery. Hoping for relief from the toe-pocalypse although I also know that surgery and recovery will mean it’s going to get worse before it gets better. Foot xray showing bent big toe

Interrupters

Until then on to crazy fun April starting with Interrupters concert tomorrow night!!! Favorite songs: She’s Kerosene and Got Each Other (featuring Rancid)

We don’t have much but we’ve got each other! 

 

Discoveries

The toes report

Met with the orthopedic specialist on Friday. Surgery in the next month or two as soon as it can be scheduled. Basically, the muscle tone and uncontrolled muscle spasms in my feet have caused my big toes to be just shy of dislocated. I have really strong muscles! And as I’ve mentioned before, it’s as if all of my muscles have their own individual brains, none of which listen to the brain in my head.

Foot xray showing bent big toe

I’m going to have surgery on both of my big toes as the doctor thought it was just a matter of time until my right toe gets as bad as my left. I’ll be in the hospital for a night or two after the surgery. The whole thing involves cutting tendons to my big toes, shaving off some bone on the knuckle parts of my toes, pins for 6-8 weeks. And then I’ll have another quick sedated surgery to remove the pins.

What else to say? It’s going to probably be a long, painful couple of months. Hopefully, it’ll be less painful once I get through it all.

Which brings me to…

Auto-captions

I’ve discovered over the past several years that my auditory neuropathy (AN) and hearing loss makes it difficult to follow conversations. CART (real-time) captions and closed-captioning helps me better understand what’s being said. For every day conversations or doctor visits, that’s not really an option.

Google Live Transcribe icon

My mom’s coworker let her know about Google Live Transcribe app for Android and we’ve been trying that out for everyday conversations. We also used it at my visit to the orthopedic specialist on Friday. It is amazing.

What do I like about it?

  • The text size can be enlarged so I can see it. I have visual tracking issues so larger text helps me read more easily.
  • The auto-captioning with Live Transcribe is pretty accurate. My mom reads along and points out when something is inaccurate. Like when the doctor said 6 to 8 weeks but Live Transcribe wrote out 66 instead. 66 weeks of pins in my toes is very different than 6 to 8 weeks.
  • Being able to read what was being said helped me fill in the gaps for when the discussion was sounding like a statick-y radio, which is what happens often with my AN.

Which brings me to…

My Book

Editing is long, hard work!

 

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!

VOTE on 11/6 if you haven’t already

This will probably be my last political post until next year. Or not.

In last Tuesday’s blogpost, I said I was going to vote for Minnesota Democrats Tim Walz and Peggy Flanagan, Tina Smith, Amy Klobuchar, Betty McCollum, and Ami Wazlawik. But, I want to be clear that I am not voting for Democrats because I favor a political party over another. I am voting for Democrats because they tend to support issues that matter to me. They support protecting Medicaid, disability rights, and healthcare.

So, here’s your job. Find out where your polling place is, research who is running for office, get out and VOTE. In Minnesota, you can use the Polling Place Finder to find out where to vote. For other states, check out Rock the Vote to find your voter information.

Our votes matter!

Here are some more posts about the issues that matter to me:

Why it matters

Vote! My letter to the editor

Ready to convene

Tax Cuts and Jobs Act

On the Issue of Disability Rights: Healthcare

 

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 3rd 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 9th 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!Back of man and Justin in his wheelchair walking down street

(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!)