Young man in wheelchair in front of quote painted on wall by Soren Kierkegaard, 1849, "Once you label me you negate me."
Advocacy, Political, travel

Part 2: Mr. Smith Goes to Washington

Hi – here’s part 2 of my trip to Washington DC, Baltimore and Philadelphia. Oh, by the way, I just got denied for the Section 8 housing voucher for the 4th time so might be a little distracted.

The barriers I’m running into is why my advocacy and opportunities to meet with my US Representative Betty McCollum and US Senator Tina Smith are even more important. It’s important for us to let our elected officials know what we’re facing when trying to navigate these services and this broken system. Because, it is NOT working. It’s not working for me trying to live independently. I am frustrated. My parents are frustrated. My friends are frustrated. You are probably frustrated.

Anyway, one of the highlights of my trip was to have the opportunity to meet with Senator Smith and Representative McCollum and share my story. This is what I talked about with each of them.

What I had to say to my Senator and Representative

About Housing

I moved into my first apartment last February. Independent living in and of itself, is cool. It’s the systems that I need for support, that I’m finding incredibly frustrating and are NOT coming together. It should NOT be this hard to try to live an independent life.

Here’s the thing, I do not want to live in a group home or segregated apartment building where everyone has a disability. I want to be part of an inclusive community or building with people of all ages, abilities, and backgrounds. The first issue I ran into was trying to find an affordable, accessible apartment.

The Americans with Disabilities Act (ADA) doesn’t have guidelines for how many apartments in a building are accessible or what qualifies as an accessible apartment. What we’re seeing so far is that a tub with grab bars and a handheld sprayer or grab bars near a toilet are what some developers consider accessible enough. It took me about a year of actively looking, to finally find a place that would work okay.

The next issue with housing is affordability. My SSI income is too low to meet the minimum threshold for a Section 42 income-restricted apartment. The only reason I’m in my apartment is because my parents are able to help me out. Many aren’t that lucky.

I’m working with the housing stabilization services from the Arc of Minnesota, who told me I could get a Section 8 housing voucher last Christmas. I AM STILL WAITING.  

About Direct Support Staffing Crisis

The next huge issue, I’m facing is finding direct support staff and having a self-directed waiver budget that actually covers the care that I need. The direct support staff crisis is REAL and is impacting me, and my friends with disabilities. Right now, I have direct support staff for about 40 of the 168 hours of care a week that I need. Without staff, I will not, be able to continue living independently. Unless my parents providea lot of unpaid care, I will be forced to move to more costly provider services. I do NOT want that.

It is getting more and more difficult to find caregivers willing to work for $17/hour with no benefits. I can’t compete for the staff I need to be able to live independently.

About SSI

The third challenge with living independently is the math. I receive $841/month from SSI. I can have $2,000 in assets. Remember how I mentioned that this isn’t even high enough to qualify for the income-restricted apartment that I’m currently living in? SSI needs to be reformed and SSI income and assets need to be increased! It’s past overdue.

About why living independently is worth it

I know I just spoke about the challenges to living independently. Here’s why it’s worth making the system work better. I’m living in my community. I have reconnected with old friends. I choose to live independently so that I can write, work on my books and blog, go listen to live music at First Avenue. I choose to live independently, and I can, if I have the support I need. Thank you.

Some pictures

Images below are me riding the subway to my meeting with Senator Smith, meeting with Senator Smith, meeting with Representative McCollum, and contemplative me at happy hour/dinner at the Commissary after meeting with the Senator. This was all pretty exciting and I was honored that they each carved out the time for me!

Thanks also to Senator Smith’s office for arranging the Capitol Tour for us! If you’re ever going to D.C., remember to connect with your Senators or Representative 1-3 months ahead of time to arrange for meetings with your elected representatives and tours of places such as the White House, Capitol, Library of Congress, etc.

5 thoughts on “Part 2: Mr. Smith Goes to Washington”

  1. I’m so glad you were able to make this trip and meet with lawmakers. You are making a difference! As an aside, my family and I saw some of these same amazing places this past summer.

    Liked by 1 person

  2. Justin, fabulous trip. So happy you all got to go, see so much, do so much and meet your important MN/US politicians while there!
    Keep up the good work for the good fight!

    Liked by 1 person

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