Q: What is important to you about your life right now?  

A: “Well, I just moved to my own place, so I’m getting everything set up. Financial literacy has been on my mind lately so I can be successful living on my own in the future.” 

Q: What is something you’ve done that you’re proud of?

A: “I was on the committee who fought for people to be given community living options outside of group and foster homes. I am really proud of being on that committee and getting to work with politicians. It’s probably one of the most important things I’ve done in my advocacy. Now people hear all the options every year during their ISP.”

Q: What dreams or goals do you have for the future?  

A: “Moving into my own basement apartment or my own housing. That’s my goal for the next 3-5 years. Then I hope to get people receiving services a proper menu of the services they can receive. I know that it can be helpful, a headache for providers, but it would be beneficial to me so I could see a menu of what is available. As an advocate I hope to see that done in a proper fashion because it would be helpful for less experienced [Personal Agents] as well.”

Q: Do you think planning is important?

A: Yes, I do think planning is important, but over planning can also happen which isn’t good. One of my main goals with [the ISP] is to not bite off more than we can chew. When you over plan things can slip through the cracks and not get done properly.” 

Q: When you’re planning with someone- what is the most important thing that person can do?

A: “Well, they have to see their perspective then react according to the person’s perspective. Each advocate is going to be different in how they approach things, and their needs are going to be different. They need to view you as the representative. I think that is the best advice I can give someone in the planning stage.”

Q: When you’ve planned in the past- what worked well?

A: “I think people appreciate my realism when I’m planning, and my realistic nature about what works and doesn’t work. Some people may not appreciate it, but in terms of advocacy planning, I bring my ‘call it like it is’ approach.”

Q: What do you like about your SC/PA/Case Manager? What do they do well?

A: “I just got a new one, but I can speak about my previous experience. I think case managers and PA’s do a good job of getting people together for social outings in their community. They are good at getting advocacy groups together. My PA was really good about that.”

Q: What advice would you give to SC/PA/Case Managers around the state?

A: “Learn how to network with your lead PA or case manager over you and learn how to network with your higher ups. Sometimes people will come to you with a problem that is hard to solve, so you need to work with your higher ups so you can problem solve. Learn how to network with your fellow employees and higher ups and solve problems together, such as housing.” 

Q: What do you like about your provider? What do they do well?

A: “I think I moved to a very flexible group home. They are very accommodating and help me with problems and I think they have hired good staff. I had a lot of trepidation moving into a group home due to my advocacy work, but here we are.”

Q: What advice would you give to providers around the state?

A: “I can speak to group homes and adult foster homes. I would have assistive technology, typing devices, and internet to be on point if they are taking in a resident with a wheelchair. They would need a wheel-in shower. Don’t talk to every resident the same way. Give them a healthy amount of respect in how you talk to them, be flexible, be open to advice and to employment providers. If you are dealing with someone in a wheelchair, you’ll have to get really creative in terms of support.”

Q: What do you like about getting support from your family/friend? What do they do well?

A: “I am highly blessed in that area. I have a pastor who advocates for me, a mom who advocates for me. I make sure I give and take a bit. They tend to pound the table harder for me than I do myself and that is a blessing for me. I tend to say I can give that up, let’s just give that up for the sake of not being demanding. I have a really great group of advocates that will fight for me tooth and nail and my heart goes out to people who don’t have that because I don’t know what I would do. I couldn’t do this by myself, it’s too much work so it’s helpful to have their perspective.”

Q: What advice would you give to families and friends who support people around the state?

A: “Just keep pushing. Keep chugging along, feeding the engine because it’s going to get really taxing and you’re going to come across a lot of roadblocks. Just keep trying and realize that sometimes it takes the right PA, person, worker, advocate to keep pushing. Keep fighting for yourself, your loved one and try your best. That’s the best advice I can give to family and friends.”

Q: What is something important you’ve learned as a self-advocate?

A: “I’ve learned how much language matters in this state. I’ve learned that they put way too much pressure on community support. The state, brokerages, providers put too much pressure on you and your supports to get stuff done. I’ve learned how much language matters to get stuff done. I feel like a lawyer, it takes the right word until the door gets opened. That’s what I’ve learned during my years of advocacy. They put too much pressure on the individual and you have to know the right lingo to get things done. I feel bad for the people that can’t learn the lingo, it’s not their fault, and they should be better served.”

Q: What advice would you give to other self-advocates across the state?  

A: “Learn the lingo, don’t be afraid to push back, you’re not being too overbearing. Don’t be afraid to ask to switch case managers if you need to, and just persevere!”