Teaching kids with special needs to self-advocate

Raymond Jiggetts wants his own apartment. At 31, that should be a given, but because Jiggetts has an intellectual disability, the path to independence isn’t as straightforward.

Tips to teach self-advocacy

Leanne Roth has spent the past few years at SouthStar in Chicago
teaching people with a wide range of disabilities how to
self-advocate. She has a few tips for how parents can encourage
their children to speak up for themselves.

Listen. “One of the best things to do is listen
when they tell you they want to do something. We have people say
they want to go to a basketball game and staff or parents will
automatically think, ‘Bulls game, expensive,’ but they really may
be just thinking high school basketball.”
Ask why. “We had a boy who wanted to get married.
The case manager was smart enough to ask why,” Roth says. “He said
because he wanted to hold hands at the movies like his parents and
he thought you had to be married for that.”
Give them responsibility. Ask, “How can I help you
and what are you doing about this?” “We try to have conversations,
not like I’m a genie and, poof, your dreams will come true. The way
to teach it is to put it back and say, ‘what have you done, where
are you stuck, and how can I help you?'”
Start small. “Let’s say somebody wants to go to the
movies with their friends without a chaperone. The first step is
the parent sits somewhere else or goes to another theater and
checks back.”
Be prepared for bumps. “Know it’s not always going
to work, and be there. It’s like the old, you’ve gotta get back up
on the horse,” Roth says. “You don’t want a failure that someone
doesn’t get up from and they’re scared to do something.”
Parents interested in a free class at SouthStar
about teaching their child with disabilities to self-advocate can
contact Roth at lroth@southstarservices.org or (708) 747-0627 ext
117.

Leanne Roth has spent the past few years at SouthStar in Chicago
teaching people with a wide range of disabilities how to
self-advocate. She has a few tips for how parents can encourage
their children to speak up for themselves.

Listen. “One of the best things to do is listen
when they tell you they want to do something. We have people say
they want to go to a basketball game and staff or parents will
automatically think, ‘Bulls game, expensive,’ but they really may
be just thinking high school basketball.”

Ask why. “We had a boy who wanted to get
married. The case manager was smart enough to ask why,” Roth says.
“He said because he wanted to hold hands at the movies like his
parents and he thought you had to be married for that.”

Give them responsibility. Ask, “How can I help
you and what are you doing about this?” “We try to have
conversations, not like I’m a genie and, poof, your dreams will
come true. The way to teach it is to put it back and say, ‘what
have you done, where are you stuck, and how can I help you?'”

Start small. “Let’s say somebody wants to go to
the movies with their friends without a chaperone. The first step
is the parent sits somewhere else or goes to another theater and
checks back.”

Be prepared for bumps. “Know it’s not always
going to work, and be there. It’s like the old, you’ve gotta get
back up on the horse,” Roth says. “You don’t want a failure that
someone doesn’t get up from and they’re scared to do
something.”

But as a member of the Ray of Hope Self-Advocates at SouthStar Services in Chicago, one of the biggest things Jiggetts has learned is to speak up about his dreams.

“I say what I want to do in my life. I spoke up about moving to an apartment,” Jiggetts says. “They put me first on the list.”

As Jiggetts waits for his apartment to be assigned, he is continuing his efforts to advocate for himself and others with disabilities.

In recent years, the self-advocates have joined state committees in Springfield and spoken to local high school students about how to advocate for themselves.

“We try to promote personal, local, statewide and now national self-advocacy,” says Leanne Roth, director of employment and advocacy for SouthStar. “It gives them the power to have some control over their lives, with support and to the best of their ability. …Everyone involved has grown more independent and that’s because of what we do in self-advocacy.”

Part of SouthStar’s curriculum is Dare to Dream, which teaches people with disabilities how to get a vision for their lives, the first step to advocating toward that dream.

“When I was a kid, I wanted to be a nurse, so I got a little nurse’s kit,” Roth says. “When a child with disabilities says ‘I want to be a nurse,’ they have the whole IEP team sitting around talking about why they can’t. In Dare to Dream, we try to help them figure out what they want out of life and then how to advocate to get that.”

Roth says the advocacy group has completely changed the organization. “The self-advocates here are involved in decisions on every level,” Roth says. “They’re on the safety committee, staff development, anything we do we get input.”

And the self-advocacy has made a difference in the lives of the group members outside of SouthStar.

Melissa Regan travels around Illinois talking about advocacy and was chosen to be a quality analyst for the state of Illinois. She worked with two other advocates from the state to survey other people with disabilities and create a paper on the topic.

“I’ve become a lot stronger with this,” Regan says. “It’s important, so we can tell others about being a self-advocate.”

Another SouthStar advocate, Cindy Toll, found a lifelong wish realized once she learned to self-advocate.

“I have had one dream come true, to be in a movie. I put it on my collage that we did in Dare to Dream and then started working towards it,” Toll says. A local director of the film “Tower Phi” was filming in Frankfort and cast Toll as an extra after hearing about her dream.

Brian Denton, another member of the self-advocates, became a photographer after learning to tell others what he would like to do. He now works alongside a professional photographer taking pictures at SouthStar events. His goal is to encourage other people with disabilities to go after what they want as well.

“I speak up for myself to help other people do the same thing.”

Raymond Jiggetts wants his own apartment. At 31, that should be a given, but because Jiggetts has an intellectual disability, the path to independence isn’t as straightforward.

But as a member of the Ray of Hope Self-Advocates at SouthStar Services in Chicago, one of the biggest things Jiggetts has learned is to speak up about his dreams.

“I say what I want to do in my life. I spoke up about moving to an apartment,” Jiggetts says. “They put me first on the list.”

As Jiggetts waits for his apartment to be assigned, he is continuing his efforts to advocate for himself and others with disabilities.

In recent years, the self-advocates have joined state committees in Springfield and spoken to local high school students about how to advocate for themselves.

“We try to promote personal, local, statewide and now national self-advocacy,” says Leanne Roth, director of employment and advocacy for SouthStar. “It gives them the power to have some control over their lives, with support and to the best of their ability. …Everyone involved has grown more independent and that’s because of what we do in self-advocacy.”

Part of SouthStar’s curriculum is Dare to Dream, which teaches people with disabilities how to get a vision for their lives, the first step to advocating toward that dream.

“When I was a kid, I wanted to be a nurse, so I got a little nurse’s kit,” Roth says. “When a child with disabilities says ‘I want to be a nurse,’ they have the whole IEP team sitting around talking about why they can’t. In Dare to Dream, we try to help them figure out what they want out of life and then how to advocate to get that.”

Roth says the advocacy group has completely changed the organization. “The self-advocates here are involved in decisions on every level,” Roth says. “They’re on the safety committee, staff development, anything we do we get input.”

And the self-advocacy has made a difference in the lives of the group members outside of SouthStar.

Melissa Regan travels around Illinois talking about advocacy and was chosen to be a quality analyst for the state of Illinois. She worked with two other advocates from the state to survey other people with disabilities and create a paper on the topic.

“I’ve become a lot stronger with this,” Regan says. “It’s important, so we can tell others about being a self-advocate.”

Another SouthStar advocate, Cindy Toll, found a lifelong wish realized once she learned to self-advocate.

“I have had one dream come true, to be in a movie. I put it on my collage that we did in Dare to Dream and then started working towards it,” Toll says. A local director of the film “Tower Phi” was filming in Frankfort and cast Toll as an extra after hearing about her dream.

Brian Denton, another member of the self-advocates, became a photographer after learning to tell others what he would like to do. He now works alongside a professional photographer taking pictures at SouthStar events. His goal is to encourage other people with disabilities to go after what they want as well.

“I speak up for myself to help other people do the same thing.”

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