Barriers to Inclusion Part 3: Employment

In the 2018 fiscal year, 16 percent of Minnesotans with disabilities who received state services worked in the community alongside people without disabilities.  Chris Serres, Star Tribune, 3/16/19

How is this real? That number needs to be a hell of a lot higher than 16%. I am NOT one of the 16% by the way… although I did get paid to be a keynote speaker a year ago. That was my first and only paid work.

We have to rethink what employment looks like and be open to a variety of work options for people with a wide variety of abilities. For example, I want a part-time job with the option to work from home. I love to write and advocate for disability rights and am good at public speaking. I love testing out assistive technology, applications, and pretty good at using WordPress. I have a lot to offer, it just takes me longer to do what I want to do.

I think it’s time to rethink traditional college and how some of us with disabilities can get our first jobs – especially those of us with severe physical disabilities. I’ve written about this before, but the amount of time and energy for me to take just 1 college course is a lot. One college course means that I have very little time for doing anything else like writing in my blog, getting out in the community, advocating for disability rights, or more importantly going to concerts. I’m not sure it’s the best use of my time and would take me about 8 years to get an Associate’s degree. So, what kid of job am I going to get without a degree? Or do I need to create my own kind of work because when I’m not a college student, I don’t get to do internships or have those other entry points into the writing or communications work I’d like to do.

Smiling Jennie Delisi, Jay Wyant, Kris Schulze and Justin Smith

Let’s all get more creative and figure out how we can connect people with jobs, especially those of us who aren’t following traditional paths.

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!

And read the first two parts of my Barriers to Inclusion blog post week. Really, read them right now! And share with all of your friends, family and random strangers!

Barriers to Inclusion Part 1: Inclusion

Barriers to Inclusion Part 2: Caregivers

Here are a couple of  posts from a younger me related to college and work:

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Inclusion in Action

Random Thoughts

Justin in wheelchair with movie lights, 2 men looking at him with video camera

 

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!

Hope. Grace. Kindness.

On Monday, I got to go hang out and volunteer with my young friend, Roa, who also has cerebral palsy. He’s in elementary school and reminds me of me when I was that age. I remember playing hide and seek in those same hallways during recess when I was his age. In the winter, when my wheelchair couldn’t get through the snow outside, several other kids would stay in and play hide-and-seek in the school hallways with me. I bet we disrupted lots of classrooms because I have a contagious laugh!Boy and young man driving power wheelchairs in school hallway

I didn’t really ever know anyone with CP or a physical disability when I was growing up. I think it would have been easier if I had had a mentor in elementary school. Just to know that I wasn’t alone. Thanks to my former therapists and teachers for connecting me with this amazing young man.

He has a grace in him that maybe people don’t always see. I see him. I see the boy who smiles, whose eyes light up, who is driving his chair faster and more independently than when I first met him two years ago and is getting so much better at using his communication device. He likes telling jokes which is something I loved to do in elementary school!

Sometimes we all need kindness and hope and grace. I find it when I get to hang out with Roa.

Happy holidays to you all. Wishing you all hope, grace, and kindness.Justin and Roa giving each other high five

I’m not asking for a miracle

One of the songs I like by CHRVCHES is Miracle. I’ve been listening to it over and over. And over. And over lately. I’m not asking for a miracle but I, and my parents, are struggling with what comes next. What does my adult life look like? Especially socially, because right now, I’m feeling kind of isolated.

I’ve had some great opportunities to speak at different conferences and speak out about disability rights. I’ve made some awesome professional connections. I’ve gotten involved politically and made some wonderful connections there, too.

But, day in and day out, I feel kind of lonely. I hang out with my support staff who are awesome. I don’t really have any friends that I hang out with, though. I read books and watch movies and shows about young people hanging out. That’s rarely been my world. The last time I had friends that I hung out with was with my church youth group – they all went off to college or on with their lives. How do you meet new friends when you’re not in college, you’re not working at a job, and you have a difficult time hearing and communicating?

Right now, I am not asking for a miracle. I just wish there were more opportunities for people with disabilities to meet people and feel more included.

“Ask me no questions, I will tell you no lies
Careful what you wish for
We’re looking for angels in the darkest of skies
Saying that we wanted more
I feel like I’m falling, but I’m trying to fly
Where does all the good go?
We’re looking for answers in the highest of highs
But will we ever, ever know?

And I need you to know I’m not asking for a miracle
But if love is enough, could you let it show?
If you feel it could you let me know?
(Oh, oh) if you feel it could you let me know?
(Oh, oh) I’m not asking for a miracle

Ask for forever when the end is in sight
Showing what you want to
We’re looking for light inside an ocean of night
But will we ever see it through?”

Songwriters: Lauren Mayberry / Martin Clifford Doherty / Iain Andrew Cook / Steve Mac

Miracle lyrics © Universal Music Publishing Group

20

I turned 20 years old this week. A couple years ago, I thought that after high school, I would go to college. Get my Associate’s or Bachelor’s degree. And then get a job as a writer or journalist. Here’s the thing, I’ve started taking some college classes. Two worked out pretty well – got A’s. I also tried to take an online class which didn’t work out as well and I ended up dropping. The amount of writing required for that online course would have taken me countless hours to keep up with. What would have taken many students a couple hours a day, probably would have meant 40-50 hours a week for me – for just one class.

I am now grappling with a dilemma. Do I go to college? Or do I look at other online courses like through Coursera or EdX to keep learning even though it wouldn’t be working towards a college degree? Or do I find a job or volunteer work to start getting work experience? This past 2 years, I’ve had fantastic opportunities as a public speaker. Would people want me as a public speaker, if I’m not also a college student? Was that part of my story that people were interested in?

My family and I are struggling with what are the options for me with what I love to do and what I’m able to do – because honestly it’s difficult for me to communicate quickly and often times people don’t take the time to wait for me to say what I want to say – so where are those opportunities to work or participate in my community like I’d like to when it’s this difficult to communicate? What does a job for me look like where I can interact with others to do the things I love to do? How do I work towards independence if I’m hanging out at home every day? Because, that’s what I’ve been doing lately, and it’s not working.

I really love public speaking about inclusion and accessibility. I love advocating for disability rights. I love writing even though it takes me a long time. I love to share my voice with the world. I love my volunteer work as a mentor to an elementary student who has cerebral palsy and is learning to use a communication device and power chair.

We know some of the next steps. I need to get connected with Vocation Rehab Services to find out what they can offer. I need to reach out to different advocacy organizations to see if there might be volunteer work or internships that might work for me. I need to meet with my social worker to make sure the supports I need are in place so that I can keep working towards my goals.

So, I’m 20 years old. I feel confused, floundering, like I’m trying to get to the top of a long flight of stairs in my wheelchair – not sure what’s at the top of the stairs or how to get there.