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!

Barriers to inclusion

Today, Chris Serres, reporter for the Minneapolis Star Tribune, wrote an excellent article about how Minnesotans with disabilities are fighting barriers to inclusion and unfilled promises. I love seeing Chris Serres’ articles because he gets it. He’s able to tell the world about what it’s like to try to navigate this system and what happens when the system fails people with disabilities.

This week, I’m going to be sharing my experiences and thoughts about inclusion, services, and moving towards independence, all in three action-packed posts. I am trying to navigate this system and learning as I go. It’s not easy to figure out a path towards independent living as the system is set up now. I am not an expert in all of these services and options but will offer my ideas on what I think would make sense for me as I, with the help of my parents, try to figure out my future.

Part 1: Inclusion

This is my definition of inclusion: a community of diverse backgrounds embracing each other in open minds and open hearts. I’ve written a lot about this in the previous posts. I want to live with as much choice and independence as possible. Isn’t this what anyone would want?

For inclusion to happen, I need to have services and supports in place that help me live the life I want to live in my community.

  • Caregivers are critical for me to live an independent life. I need 24-hour care and receive funding to cover about half of that care. We need to rethink models for care giving and independent living. I’d love to partner with others who live near me – kind of like a staffing cooperative. And what about inclusive co-housing options that include people with AND without disabilities?Do not miss Part 2 tomorrow!Man with arm around Justin, We belong in the community sign hanging on front of Justin's wheelchair
  • What is my path to employment or giving back to society? So far for me, that has meant taking some college courses, writing my blog and book, and having some amazing opportunities for public speaking. But, I have no idea what’s next in my path to an actual job. Read more about this in Part 3 later this week.

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!