Community Living - Your Life, Your Way

A compilation of stories of individuals with developmental disabilities who are living in the community, where and with whom they choose to live.

Sarah is powerful. She is smart, she is funny, and there is pretty much nothing she can't do.

Sarah and Katelyn attended high school together and spent two years in National Honor Society.

And we were all just dying bored. And we think we're about done, we're all excited, and then they go, "Oh, by the way, here's another page of stuff we have to do," and Sarah just goes, "Uhhhh." And Amanda and I are sitting there dying laughing, like tears rolling down our cheeks, hoping that people don't hear us because we're laughing so hard. And I just turned to Sarah, and I go, "Sarah, I couldn't have said it better myself." [Laughs.]

While in high school, Sarah did very well in academics, but she also thrived in the athletic arena, as well. She loved sports, especially wheelchair hockey and soccer. And her mom remembers one time when...

She even tried sled...sled hockey in the sled where she had... somebody has to turn her around and she has to try to hit the puck. So, yeah, she's... Of the three children, she is the most prone to try any kind of athletics she could.

Sarah's competitive nature has now spilled over into a different kind of competition, competing for what's right and what's just. She now teaches classes to direct care staff on how to work with people with disabilities.

Every person who has a disability is different. A team has to make an attempt to have an understanding of what the individual's disability is.

Sarah's parents have been great advocates and supporters and knew that whatever she wanted to achieve, she would.

Just because I smoke marijuana and I know a lot of people that drink and drive.

[Inaudible]

Dan Perry doesn't like to make people cry, but sometimes that's the reaction he gets when he tells people his story.

When I was 19 years old, I was out at friend's house drinking beer and smoking marijuana, and I felt fine. So I decided to drive home. At some point, I lost control of the car and hit a telephone pole. In that one second, my life was changed forever.

Dan has traveled a lot this year, taking his anti-drinking and driving message to schools and conferences all over the state. He's been featured in the local newspaper and was even honored by the Detroit Pistons for his outstanding achievements. But the one thing he values most are the hundreds of cards and letters that children send him telling him how his message has impacted their lives.

It is my sincere desire to prevent what happened to me from happening to someone else.

Dan says he'll continue traveling and spreading his message and is grateful to everyone who has helped him achieve his goals.

Oh sometimes days at the institution, I'd sit back and look out the window and say, "Lord, I want my own place," and maybe I made that happen and the man above me too gave me the strength. Everything that is freedom is freedom of speech, freedom of movement, freedom of coming home to your home with your own keys. Going to work. Paying your bills. Listen to music.

Small business owner John Toppi gave the title of Business Manager to one of his support people. Part of her job requires her to help John find new places to sell his candy sundaes, which are popular gift ideas. The two of them have drummed up so much business, it seems they're always running to the store.

It's grown. Every time people ordered the sundae, it gets bigger and so much... We'd sell so much, we got to go buy more supplies.

Kathy Nowacky is able to manage her business and take care of her 93-year-old mom with the help of a long-term care waiver that pays for full-time in-home support. Kathy says Self-Determination has allowed her the freedom to hire support for her mom and keep her at home where she's familiar with her surroundings and where she's loved.

We were with an agency at one time. In the course of a 24-hour period when my mother lived up north, sometimes there were three different people through there on a day. My mom's 93 and a half, and it just led to confusion for her.

The quality of care was not what Jen... Jen treats my mom like it's her gram. And my mom treats her like she were her granddaughter.

Jay, can you a... Can you give me information so I can get the information and stuff? Because I got to train on that thing.

This is a typical day in the life of Mr. Andre Robinson. Conference calls, meetings, agendas, presentations the list is endless.

Andre is a businessman, an advocate, self-starter, and refers to himself as having a lot of spunk. And that is definitely the truth. The disability community has to have a voice.

So a lot of times, they... A lot of times people don't want to speak up because they don't want to lose their entitlements, the stuff that's connected with Social Security because they're scared. And who better than me to have a voice? Because I've got a big mouth.

Andre's passion and drive has fueled his desire to help others as long as he can remember. As the youngest of three, Andre had to really speak up to get the correct support and things he needed while growing up at a time when there were limited resources for people with disabilities. This year, everything he has learned is paying off. Not only has Andre advocated for himself and many others while being the Chairman of the Developmental Disability Council in Lansing, his role as an advocate has never been more important as he now speaks up for his elderly mom.

Because I'm in the situation that I'm in, I'm able to get some things for her. But the system for seniors, that's what...I think that's going to be some of my life... he rest of my life's work because the system is fractured. It needs to be fixed. Andre has seen how difficult it is to maneuver through the system, so he wants to dedicate more time to finding better resources for seniors yet another new avenue for advocacy for him to pursue.

He takes this new path in stride, and to the many people that tell him he has a heavy burden to carry, he says he has broad shoulders and can handle it.

The most important thing for me is when somebody come up to me and say, "Andre... Mr. Andre, that worked... that worked out for me." That's the most joyous thing that I could ever do in my life. That's the great thing about Self-Determination. Make my own decisions, and I'm the boss. In the future, I want to run for office so I can make some new laws. Kids with disabilities being in general ed with all the other kids in high school and all that.

And when we interview, we just watch how Gary acts around them. And he really is the one that makes the decision, because we can tell if they... if he is interested in them and they're interested in him. Gary is a wise man. He has a keen sense of how to read people and tell if he'll get along with them.

That was the case when he met his live-in staff Jerry and his newest support person John Balkum.

I'm friendly and I'm... I kind of like to really pay attention to him, especially right when I start working with him because he can't speak and he can't really... He doesn't have any signs or anything unless you really pay attention then you can kind of get how he is, his mood. If he wants something, he'll kind of pull your arm, but he doesn't really direct you to what he wants, so it took a little bit of time, like, learning that, and I think I kind of caught on to that pretty quick.

Gary enjoys being outside as much as possible and enjoys visiting various places in his community. He and John are well known in many restaurants in their neighborhood, and they enjoy their connection. Self-Determination has given Nancy and Gary the freedom to live their lives in a unique situation that fits their lives perfectly. Gary hires his own staff and his mom helps with the scheduling and the budgeting.

What's important is that you got an outline of the budget back so that you can see what you've spent. Because the whole...the whole beauty of Self-Determination is that you can flex those items from one line to the other.

Implementing the principles and tools of Self-Determination was easy for Nancy, who at first thought it's just another gimmick. It can work, no matter, no matter how scary it is. And you know, when they first started Self-Determination, I said, "Oh, it's just another program." You know, we've been in the system for 36 years, and okay, just whatever you want to call it, let's just do it. I'll do it. But I'm sold on it, and I wouldn't ever go back. And I'm trying to get other people to do it as well.

So it's... It's wonderful for Gary. It's made a big difference in our lives.

Jeff Guthrie has an individual budget. He understands the concept of balancing a checkbook and knows when his bills need to be paid and how they get paid. He says he's glad that he knows now where the dollars are being spent. Did not know what was being spent or how it was being spent

Now I know. And I do keep track of that as much as I can.

Jeff's mom says she's seen a remarkable improvement in his self-esteem and ability to manage his finances, which has become a little more difficult now that he has three jobs.

Now he's not being told what's available. He's being... He has has been given the opportunity to look in all the directions and say, "No, this isn't what I want. This is what I want. This is where I want to go, and I need you to help me get there." It's made him feel like he's directing his life. And that's what everybody should be able to do.