Frontline Initiative Changing Roles

 My dream is to go to college, get a decent paying job, own a car and be able to drive it, and eventually have a house and raise a family. At many times over the years, it didn’t look like dreams would ever come to be. But I kept saying, “It can be done. It can be done. IT CAN BE DONE. PERIOD.”

The main support I need is in getting integrated into the community. Ever since I can remember I had a provider agency providing DSPs to do this. There were lots of things that frustrated me about this arrangement. I had to deal with no shows and excuses for reasons things were not getting done. Everyone admitted that there were things not being done, but there seemed to be nothing happening to change things. It was a constant frustration with support staff and the agency itself to support and encourage activities that I wanted to do. They would decide what activities I “should” participate in. I wanted to meet people, to begin dating, and get my driver’s license. But they wanted to dictate who I should date and where I should be meeting them. They didn’t want to support me in getting a driver’s license because of liability issues.

I was on the waiting list [for a Home and Community Based Services Waiver] for a long time, but not as long as some people. I was nervous I wouldn’t get approved. Some people have been waiting on the list for 17 years and still didn’t get approved! But, this past June I heard the news — I was approved! I was now on my way to really living my life the way I wanted.

It didn’t happen exactly that quickly though. We had several large meetings to work out what we have to do to participate in the Waiver program. Then we had to make a yearly budget stating what the services would be and where the funds would be going to. Then we had to send it into the state of Minnesota to get approved. Almost everything was approved. Again, another step towards living my life the way I wanted to.

Right now we are trying to get good people to work for me. I still work with a provider agency. The waiver money still goes through an agency and then is paid to employees, but I get to decide who works for me and who doesn’t. I also get to develop the goals and say what I want to do.

One of the biggest things that I have done is attempt to hire new people and fire the bad ones. I hope that I can find DSPs who will support me in my own life and how I want to live it. I’m looking for the basics: trust, loyalty, someone who shows up when they say they are going to, and someone who has an interest in what I am doing. It’s a lot of work to interview and decide who to trust. I also get to pay people a decent wage and they get a bonus if they do what they’re supposed to do. But no matter how hard it might be, it’s worth it because I am the one who is doing the deciding!

I am privileged that I am now the decision-maker; however, a lot of people don’t have that option. It really is a civil right for people to be able to make their own decisions. The only time that it is acceptable to intrude on that is if someone is in danger. The best way to understand this is to put yourself in your clients’ shoes. Is this what you would like your life to be? And work from there. Eventually, these things will work out. We have come a long way in the disability rights movement. I look forward to a time when my dreams are being fulfilled, when agencies improve, when funding and training improve, when policies protect DSPs that take risks. I look forward when we all don’t have to wait for agencies, but can make changes and obtain our goals on our own schedule, instead of waiting for an agency to okay it. I look forward to when all people with disabilities are recognized as equal citizens with the same rights as anyone else in this country. It Can Be Done. It Can Be Done. It Can Be Done. Period.