Frontline Initiative: Direct Support Professionals Supporting People's Employment

Bob describes his experiences and difficulties in securing needed support at work. To solve this problem, Bob started his own business at home. This helped him overcome transportation barriers and gaps in the supports that he had when trying to work in a community business. Bob describes his experiences in this video.

Transcript

Hello. My name is Bob Peterson. I want to talk to you about working and having employment and getting a job for people with developmental disabilities who are in wheelchairs or otherwise need a job coach to help them on the job because of behavior or other reasons. Mine is because I need help going to the bathroom and eating and stuff like that.

And so my problem with all the job programs for people with developmental disabilities, and people with disabilities in general, is that when you get into the work program, the state gives you money for going to work. But once you get paid, they want you to pay them back, which is fine. But in my case, I need a DSP or PCA to stay with me while I'm at the job. But this and every other program that I can think of doesn't do that. So what I thought was that I needed to create my own business doing advocacy work so that I could make some money.

Because, like I said, all these programs, they're offering you work or giving you opportunities to work, but they don't work for me because they fade out the job coach. I need them to stay with me. So when they fade that out, they fade out that fact that I get to keep the job. So that doesn't work. So it's the same thing with continuing to work. How did they know that I was going to get the job and be able to do the job, preferably to give me enough money to pay for my own DSP?

So with these conditions, I need support on the job all the time to live my life and stuff. You know, no job can offer that and no program can offer that. No employer could offer that. I do know that under the ADA, you are entitled to other compensation, but that's only for certain things. That's for wider doors. Not to have someone come in to help you or to go to the bathroom or only to visit you. But I need someone who stays there.

So it's very hard for me to do that when I'm the one who has to pay them. Because when you're in these programs, they only pay for 90 days. And after 90 days, the job coach or PCA goes away. That's the first thing when it comes to someone with disabilities who wants to work, someone with a wheelchair, who relies on DSPs to help me with my daily care. And all these job programs… they said they will deal with it case by case. And every case is different. But the thing is, when they do that, it's complicated. Because when I tell them that, they do what they do. When you only had a DSP for 90 days like I did, and after 90 days, they re-evaluate and re-evaluate. There's no reason to re-evaluate.

The point is, I need a DSP or a PCA for daily care all the time. So my solution to that was to start my own advocacy business out of my house so that I work with an agency and they provide me with staff. And I can work from home doing advocacy work. The way I dealt with the problem is to have my own business. I earn money. I live in a community. And I have my job. And I earn money. And that was my way of solving the problem of people telling me I would be very hard to employ because of my physical needs. So I just decided to start my own business. And I did. I've been doing this for years now.

But what I can tell you is that it is very frustrating and hard to have different programs say that, "we could offer this, we can evaluate you," and still look forward. Or you fit in the jobs program, or you fit in the DSP program, but even that is for jobs in general. Even that has its own challenges.

So that is why I decided to do what I did, and to talk about it. It's been a tough road to get here, but I was lucky enough to have my own place. And I'm lucky enough to have my own business. The best thing is, I get to set my own hours and set my own schedule, which basically is the same thing. And earn money and go out and get my hair cut and do other essential things and then turn around and do fun things, too. So for me, it's all day.

But that is not to say that the programs won't work for other people. But it didn't work for me, and it doesn't work for people in wheelchairs. But sometimes it works for other people. But people with developmental disabilities of any type usually need support to go with them. And that support has to be provided by the agency that they're with or by someone. And, usually when you step out of the day program services and live out on your own, there are no transportation services. You have to find your own. You have to do it. You have find transportation. And hire someone. You have to figure out another way to do that. So it's a battle that you have to keep battling and doing something. That's why I did what I did. I was very fortunate be able to do that and have the set up that I have now. Okay. I think that I'm done with this wisdom. I hope you guys have a better understanding of what it takes for people with developmental disabilities to have a job and moreover people in wheelchairs who have more needs. That's all, thank you. Thanks for your time.