Frontline Initiative Legislative Advocacy

I’ve been going to the legislature for 30 years. It began when I was living at a “mini-institution.” The agency that ran it wanted to open a group home. Although ARC was behind us and the state supported it, the agency still wanted me to testify to say that I wanted the group home to open. It was scary at first, but the DSPs that worked with me helped me prepare what to say and calm my nerves. 

After the group home opened, there were about ten of us who would go around and talk at town meetings, trying to get support for opening more group homes. Back then, people didn’t want group homes in their neighborhoods and this was one of the greatest barriers.

In 1973, Senator Kennedy heard about our group and asked me to come to Washington D.C. The director of the agency that ran the group home helped me prepare three pages of testimony. Many people didn’t want me to say the things that I said because it was seen as “rocking the boat.” But I spoke in front of all those people, and I’ve been speaking ever since.

I have worked on legislation that provided funding to put names on the graves of all of those people who died in the institutions that have only been marked by their case number. I have lobbied for a public apology for the treatment people with disabilities received in the institutions. Right now we are working for getting a $2000 bonus for DSPs who stay more than a year and continue their education. I look forward to working on legislation that will speed up background checks on DSPs so they aren’t working for 6 weeks before the background check is cleared. The Individuals with Disabilities Education Act (IDEA) is up for re-authorization and the family opportunity act is very important in helping families get in-home support.

Some of this has not been easy, but it is so gratifying to see DSPs along with self-advocates make such a big difference in so many of these issues. We can talk about our personal experience, things that they may know nothing about. They hear from the Department of Human Services, the providers, and the state, but they need to hear from the experts: DSPs, self-advocates, and family members. We are the only ones who can determine if the money is being spent appropriately and if people have what they need.

So, I encourage all of you to get out there and tell the legislators what you need: pay, benefits, time off, education, and certification. If you do decide to advocate for yourself and the individuals you support, here are a few simple tips —

• Take time to prepare with other self-advocates, decide what you are going to say, and practice, practice, practice.
• Give the legislators good information. If you don’t have the information that they ask for, tell them you will be able to find someone who does.
• Always be neat and wear clean clothes. • Make sure to keep your appointment when you have one with a legislator.
• It would be good to join the local Arc. They usually have a handle on what is going on at the local legislature.
• Be on time. Good luck, and see you at the capitol!!!