Barriers to Inclusion Part 2: Caregivers

The system is stuck! Why aren’t Consumer Directed Community Supports (CDCS) options on a level playing field with traditional Personal Care Attendant (PCA) Services? We need to rethink the model and provide real options and choices without being penalized for choosing CDCS, even though that’s the choice that provides more flexibility and choice for the consumer. And why are these the only 2 options for staffing that I know of? What about cooperative staffing models where people with disabilities are the ones making the choices and decisions?

How am I penalized?

Having me become a small business to use the CDCS program still seems crazy to me and my parents. Even with the assurances from MN Department of Human Services (DHS) that simply having unemployment and worker’s comp insurance protects me, we think there is greater liability for me now with this program. If anyone claims worker’s comp or unemployment, I will have to pay a higher percentage rate as a small employer because it’s no longer shared and spread out among a large pool of employees.

We have been told that if we switch to traditional PCA services I would receive 25% more in my annual budget. We wouldn’t be able to set the pay for my staff using this option, though, and would lose some of the control and options for managing my staff. I don’t want to risk losing great staff because they’d get a pay cut going to this model.

I am approved for 24-hour care and under CDCS, I only receive enough budget for about 1/2 of that care. How am I supposed to live independently when I don’t have a caregiver budget that covers the 24-hours of care I need? No nursing home or group home, please!

Why do I stay with CDCS?

  • I am able to pay my staff better wages than they would receive under traditional PCA services.
  • I get to choose who works with me. I am able to hire people who are tech-savvy and can help out with all of the assistive technology that helps me do what I need to do.
  • Because of this, my caregivers work with me for a long time. I have one caregiver who has been with me for 15 years. And another for over 10 years. I’m fun to work with!

Creativity, anyone?

I need and am approved for 24-hour care, but get funding for half of that. We need to rethink models for this. I’d love to partner with others who live nearby – kind of like a staffing cooperative, where we, the ones with disabilities, are still able to select our own primary staff and share our overnight staff. And then hire a coordinator to help with scheduling, payroll, share overnight staff, and provide on-call backup staff in case anyone is sick.

Co-housing options seem like they’d be a great idea for having people with and without disabilities living together. We could have community gatherings so that I’m connected to a larger network of people. It’s very important to me, that I don’t live in segregated housing. I do NOT CHOOSE to live in a group home. Lots of people with disabilities use housing assistance and Supplemental Security Income (SSI), so co-housing would need to be okay with that. I don’t know how any of this would work, but there are probably people out there who do.

If there are several others living in a co-housing community who have caregivers, we could form a staffing cooperative to share in overnight staffing and have back-up on-call staff. That’s one of the scariest things, is knowing that at any time, someone can call in sick or not be able to work. If there’s not a backup, then what? I don’t get out bed, go the bathroom, or eat or drink that day? Right now, my parents are there, but what about when they aren’t? I really want to live independently within the next 4-5 years, just like any other young adult.

Interested in figuring this out? Or exploring co-housing or cooperative staffing models? Contact me on my Contact page  and lets start a movement! This is our next step, figuring out how we can do something like this.

Minnesotans with disabilities Star Tribune article

Read the article Minnesotans with disabilities fight barriers to inclusion, unfilled promises by Chris Serres. Really, read it right now! And share with all of your friends, family and random strangers!

Disability rights are human rights! Inclusion matters!

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