Advocacy, Political

Really?!?

Remember how I’ve been writing about the direct support staffing crisis? That we’re not paying caregivers enough so are having a really hard time trying to find or hire anyone? This story by Kirsten Swanson of KSTP, is more about the direct support crisis impact on group homes: From Group Home to Senior Living Staffing… Continue reading Really?!?

Justin in MN Senate Hearing Room
Advocacy, Political

Bureaucracy + budget + staffing = nightmare

Enough with the waiting around for the “all about staffing” blog. I did have some health stuff I was dealing with and ended up in the emergency room a week ago. I’m doing fine now, but it seems like a good excuse for not getting this post done last week. Recap #1: The first hurdle… Continue reading Bureaucracy + budget + staffing = nightmare

Tie-dye Vans shoes strapped on wheelchair footplates
Advocacy, Health

Tie-dyed hope

What a couple of weeks! Two weeks ago I was driving around a Vaccinate the Vulnerable rally and now I'm cautiously hopeful. All of my direct support staff, including my parents, received their first COVID vaccine shots within the past couple weeks. On Wednesday, rare diseases and other disabilities were added to the eligibility list… Continue reading Tie-dyed hope

T-shirt that says Democrat
Advocacy, Political

Another Sunday

Remember the three issues that I care about: disability rights, health care and Medicaid. I know that they are divisive issues in politics and they should not be. I want to be straight with you with what’s at stake in this election for me. You’ve heard me say it before, Medicaid services for people with… Continue reading Another Sunday

Accessibility (#A11y), Advocacy

My 100th post! #ADA30

It is my 100th post. And it is the thirtieth anniversary of President George HW Bush’s signing of the American with Disabilities Act or ADA. I am going to explain why the ADA matters to me. Why does the ADA matter? I’m going to quote from my speech at the Minnesota State Capitol Grand Opening… Continue reading My 100th post! #ADA30

Kris and Justin smiling
Advocacy, Political

Why it matters

Voting by mail this year Last week, I voted absentee for our primary election in Minnesota. That’s one way I make my voice heard and hope that you all do the same. It’s pretty simple – register to vote, request your vote-by-mail ballot for your upcoming elections, and then follow the instructions on the mail-in… Continue reading Why it matters

Dad holding Justin in hospital bed
Uncategorized

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… Continue reading Time to Act in Minnesota

Portrait of Justin, his brother, mom, and dad
Uncategorized

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.… Continue reading Hello 2019

Uncategorized

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… Continue reading Too much social media

Medtronic DBS programmer and charger device
Uncategorized

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… Continue reading Another typical week