89.1 WEMU

Teaching Parents Of Kids With Disabilities To Fight Back

Jun 29, 2018
Originally published on June 29, 2018 7:57 pm

Our Take A Number series is exploring problems around the world, and people solving them, through the lens of a single number.

At a graduation ceremony in a hotel ballroom outside Minneapolis, 28 men and women got their certificates — for learning how to raise a bit of hell.

Most graduates of the Partners in Policymaking class are the mothers of young children with developmental disabilities. They've been meeting at this hotel one weekend a month for eight months.

They learned how to fight for their child in school, and how to push for health care their child needs. But also, how to read a state budget, how to talk to a state lawmaker and how to testify before the school board or city council.

The class is free, paid for by the state of Minnesota. And today, in this class, is the program's 1,000th graduate.

"Do you know what that should translate to?" asks the day's graduation speaker, Shelley Madore. "We should have a thousand entries every week of people getting up and talking in businesses, in communities, in their local political environments, like your city councils, school boards. Talking about issues that relate to people with disabilities."

Madore knows about this because she is the mother of two grown, and now successful, children with disabilities. But 25 years ago, she says, she was confused and beat down — unsure of how to meet the needs of her kids. Things changed when she took the Partners in Policymaking class. She got the confidence to demand change with her kids' schools — and then to speak to school boards and lawmakers.

And when she felt one state legislator had been condescending to her — he said parents like her should just save up extra money for their disabled kids' medical costs, just like he saved to pay for his kid's ice hockey team — she decided to run for the state legislature.

She won.

"Let's get out there and make an impact," Madore tells the graduates.

And that's the point — to turn confused parents into effective and confident advocates.

For parents, when a child is born with a significant disability, their world is turned upside down. There will be lots of joy, just like there is with any child. But that parent enters a different world: Special education, health care, government benefits. To navigate it is confusing, difficult and exhausting.

There are 5.2 million children with developmental disabilities in America. That's according to Sheryl Larson, of the Institute on Community Integration at the University of Minnesota and the senior researcher of an annual report on services for people with developmental disabilities.

Partners in Policymaking is available not just in Minnesota. Currently, 29 states and the District of Columbia run classes. Since it started in 1987, the total number of graduates has grown to more than 27,000.

The graduates are the parents — almost always mothers — of a young child with a developmental disability. Or they're an adult with a disability. It's not unusual that a parent takes the class first, then the kid grows up and takes the class, too.

Here in Minnesota, the need for this class was clear on the day before the graduation ceremony, when the class members came together for one last training session and talked about the health care challenges they face.

It's hard to get access to care and it's often expensive. Doctors and other health care workers may give conflicting advice. And although many medical professionals are caring and helpful, some can seem dismissive of a child with a severe disability.

Erin Krohn and Kate Swenson bonded in class over the struggles of their 7-year-old sons with significant disabilities.

"The best advice I've ever gotten is from fellow parents," says Swenson. Doctors said her son Cooper, who has autism, would never talk to her. But he communicates — and is able to "speak," using a speech device with a keyboard.

"If you talk to a parent with an adult child with severe autism, it's always the same thing: 'Don't give up. They're lifelong learners. Never stop,'" she explains. "And once I realized that, it took me years, because I was down. I was sad. My kid's never going to talk."

But now, Swenson adds, "Cooper is fluent with the speech device. He can say full sentences. Today he said, 'Help me find my pictures.' That is talking. It's okay. It's okay."

Erin Krohn's son, Max, was just weeks old when he had what doctors thought was a severe seizure. "When Max almost died and he was in his comatose state, one neurologist told us: 'This is as good as it's going to get. He's never going to smile. He's never going to voluntarily do anything,'" she recalls.

Krohn, too, went through a period of feeling loss — and then got to see her son defy doctors' expectations: "You think this is it. He's never going to smile. He's never going to say my name. He's never going to do anything. And he smiles. All the time."

Now Max goes to school. He hits the buttons on a device to speak — and say Mom.

Those are stories Colleen Wieck wants parents to tell. She started Partners in Policymaking in 1987. At a Senate hearing in Washington on cuts to Medicaid, Wieck watched a parent struggle to tell her story — and got the idea to train parents. "One story can make a difference," says Wieck, who runs the Minnesota Governor's Council on Developmental Disabilities, which sponsors the program. "And we teach people, you owe it to the world to tell your story. You have a story. You tell it. It could change public policy."

Jillian Nelson is the first person parents talk to when they call the Autism Society of Minnesota, often because their child just got a diagnosis of autism. "The underlying message that I always give people is, 'You're going to be okay. ... Your kid's life may be different than you ever imagined, but it's still going to be a good life and everything's going to be okay."

Nelson is an adult with autism. But, she says, it was her "dirty little secret" — something she wouldn't admit — until her mother, a graduate of Partners, made her daughter sign up, too. Now she's doing advocacy on legislation, helping other adults with autism find work, and training police and prison guards on how to deal with someone with autism.

Bonnie Jean Smith tells the class how Partners taught her to study and learn the details of state laws and policies around disability. Then, when officials in education and health care denied services for her two sons with autism, she could cite those laws and policies and win what she needed.

"Never take no from someone who doesn't have the power to tell you yes," she tells this class. "Just learn what their policy states. Too many times, the very people you're trying to get services from do not understand or even know what the policies are that govern the work they are hired to do. "

Graduates may start with helping their own kid, then take on bigger projects. One mother raised money and built a playground that's accessible to kids with physical disabilities. A group of adults with developmental disabilities got funding to start a bullying-prevention program. They go into elementary schools and talk about how they'd been bullied as kids.

In Minnesota and around the country, the graduates are told to go back to their cities and towns and speak out at hearings, or volunteer — maybe on the advisory council for their local school board or for the mayor.

Maggie Hassan took the version of Partners in Policymaking in New Hampshire, called the New Hampshire Leadership Series. "And so one thing led to the next. And I first started advocating in our school and locally for Ben," she says.

Her son Ben, who has cerebral palsy, is 30 now.

"And then as state budget issues began to impact families like ours, I found myself advocating at the state level," Hassan says. "Which led me to interact with the legislature and my decision to run for office."

Hassan was elected to the New Hampshire state Senate, and then governor. Today, the Democrat is the junior U.S. Senator from New Hampshire.

Now she's the one who gets office visits from people trained by the program.

"The way I like to think of it is it's really teaching and empowering people to work democracy every single day," she says. "And that's what it takes to have a full and vibrant democracy."

Earlier this spring, in another Senate office, Pat Ehrle met with her senator, Louisiana Republican Bill Cassidy, to advocate for legislation to end an 80-year-old law that allows some workers with developmental disabilities to receive a sub-minimum wage.

Ehrle took the Partners in Policymaking class in Louisiana.

She says she has come a long way from when her son with Down syndrome was born almost 39 years ago.

"When Craig was born, the day after he was born, the doctor came into my room and told me when I was by myself: 'Your baby's mongoloid,'" Ehrle remembers the doctor using a word that was outdated even then and is considered offensive now.

"He walked out of the room, turned around and walked out of the room. And I was in a state of shock. I mean, I broke down and just sobbed, sobbed," she says. "And the first emotion I felt was fear, because I was so afraid of what life was going to hold for him."

On this day, Ehrle is lobbying with a group from the National Down Syndrome Society. And at the group's luncheon, in a large room in a Senate office building, Ehrle is honored as the group's advocate of the year.

She's introduced by her son, Craig Blackburn. "She's the greatest advocate we know," he tells the group. "We are very blessed to have her as our mom."

Blackburn has his own schedule of presentations to lawmakers today. He's a graduate of the Partners in Policymaking class, too.

"Partners helped me to launch a career," he says. "I am a motivational speaker."

He's spoken around the country — and the world, at a conference in Qatar.

"My message is that success comes in trying," he says.

Blackburn worked as a bagger at a grocery store. It was a good job with a good salary above minimum wage that helped him buy his own condo. But after 18 years, he wanted to try something new.

Inspired in part by his class at Partners, he decided to try to find his "dream" job. Now he works stocking equipment for the New Orleans Pelicans, the city's professional basketball team. Blackburn is married, too, to a woman with a disability who he met doing his activism.

And that's another goal of Partners in Policymaking: When parents are advocates, their kids with disabilities watch and then become advocates for themselves.

Copyright 2018 NPR. To see more, visit http://www.npr.org/.

AUDIE CORNISH, HOST:

For parents, when a child is born with a significant disability, their world is turned upside down. There's joy just as there is with any child, but that parent enters a different world - special education, health care, government benefits. And it can be confusing, difficult, exhausting. There are 5.2 million children with developmental disabilities in America, and that's the number we're looking at today in our Take A Number series exploring innovative programs addressing social issues, like the program that turns the often-overwhelmed parents of disabled children into powerful advocates. NPR's Joseph Shapiro explains.

(SOUNDBITE OF PERFORMANCE OF ELGAR'S "POMP AND CIRCUMSTANCE")

JOSEPH SHAPIRO, BYLINE: It's graduation day in a hotel ballroom outside of Minneapolis for 28 people who've come from across the state and learned how to be effective and competent advocates. They've been meeting at this hotel one weekend a month for eight months. They learned how to fight for their child in school but also how to read a state budget, how to talk to a state lawmaker or testify before the town's school board.

(SOUNDBITE OF PERFORMANCE OF ELGAR'S "POMP AND CIRCUMSTANCE")

SHAPIRO: The program is called Partners in Policymaking. It's free, paid for by the state of Minnesota and today in this class is the program's 1,000th graduate.

UNIDENTIFIED PERSON #1: So it's a great honor to introduce each member of Class 35.

SHAPIRO: This program is available not just in Minnesota. Since it started in 1987, it's been adopted by almost every state in the country. Across America, 27,000 people have graduated from a Partners in Policymaking class.

UNIDENTIFIED PERSON #2: And let's get out there and make an impact. So congratulations, class. I'm really proud of you.

(APPLAUSE)

SHAPIRO: The graduates are the parents, almost always mothers, of a young child with a developmental disability, or they're an adult with a disability. They're a big part of this class. The need for the class was clear on the day before the graduation ceremony when they came together for one last training session and talked about the health care challenges they face.

KATE SWENSON: After seven years, the best advice I've ever gotten has been from fellow parents.

SHAPIRO: Kate Swenson is the mother of a 7-year-old son with autism.

SWENSON: Like, if you talk to a parent with an adult child with severe autism, it's always the same thing. Don't give up. They're lifelong learners. Never stop. And, you know, once I realized that - it took me years 'cause I was down. I was sad. My kid's never going to talk. Cooper's fluent with a speech device. He can say full sentences. Today he said - (laughter) he's like, help me find my pictures. That is talking. It's OK. It's OK.

ERIN KROHN: When Max almost died and he was in his comatose state, one neurologist told us, this is as good as it's going to get.

SHAPIRO: That's Erin Krohn.

KROHN: He is never going to smile. He's never going to voluntarily do anything. You think that this is it. He's never going to smile. He's never going to say my name. He's never going to do anything. And he smiles all the time.

SHAPIRO: Her 7-year-old son, Max, goes to school. He touches a device to speak and say, Mom.

KROHN: You know, sometimes you just want to tell the doctors, you don't know what you're talking about.

COLLEEN WIECK: One story can make a difference.

SHAPIRO: That's Colleen Wieck, who started this program in 1987.

WIECK: We teach people, you owe it to the world to tell your story. You have a story. You tell it. It could change public policy.

SHAPIRO: Wieck runs the Minnesota Governor's Council on Developmental Disabilities. At a Senate hearing in Washington, she'd watched the parents struggle to tell her story and got the idea to train parents.

WIECK: We want Partners in Policymaking graduates to be agents of change.

SHAPIRO: Graduates may start with helping their own kid, then take on bigger projects. One mother raised money and built a playground that's accessible to kids with physical disabilities. A group of adults with developmental disabilities got funding to start a bullying prevention program. They go into elementary schools and talk about how they'd been bullied as kids. The graduates are told to go back to their cities and towns and testify at hearings or volunteer, maybe on the advisory council for their local school board or for the mayor. Maggie Hassan took the version of Partners in New Hampshire.

MAGGIE HASSAN: And so one thing led to the next, and I first started advocating in our school and locally for Ben.

SHAPIRO: Her son Ben, who has cerebral palsy, is 30 now.

HASSAN: And then as state budget issues began to impact families like ours, I found myself advocating at the state level, which led me to interact with the legislature and my decision to run for office.

SHAPIRO: She was elected to the state Senate, then governor. And now she's speaking from her office in Washington. Today the Democrat is the junior U.S. senator from New Hampshire. Now she's the one who gets office visits from people trained by the program.

HASSAN: The way I like to think of it is it's really teaching and empowering people to work democracy every single day, and that's what it takes to have a full and vibrant democracy.

SHAPIRO: Earlier this spring in another Senate office...

PAT EHRLE: Hi. How are you?

BILL CASSIDY: Hey - Bill Cassidy.

SHAPIRO: I met Pat Ehrle of Louisiana.

Pat?

EHRLE: Pat Ehrle.

SHAPIRO: Hello.

She was meeting with her senator, Republican Bill Cassidy, to advocate for legislation.

EHRLE: I'm not sure if you knew this or not, but there is an 80-year-old law which permits individuals with developmental disabilities to receive sub-minimum wage for producing productive, meaningful work.

SHAPIRO: She took the Partners in Policymaking class in Louisiana. She says she's come a long ways from when her son with Down syndrome was born almost 39 years ago.

EHRLE: When Craig was born - the day after he was born, the doctor came into my room and told me when I was by myself, your baby's mongoloid. He walked out of the room - turned around and walked out of the room. And I was in a state of shock. I mean, I just - I broke down and just sobbed, sobbed.

SHAPIRO: By the way, that word the doctor used, mongoloid - it was out of date back then, and it's certainly offensive now.

EHRLE: And the first emotion I felt was fear because I was so afraid of what life was going to hold for him.

SHAPIRO: On this day, Pat Ehrle goes to a luncheon on Capitol Hill for the National Down Syndrome Society. She is being honored as the group's advocate of the year.

(SOUNDBITE OF ARCHIVED RECORDING)

CRAIG BLACKBURN: Mom, I present to you with the Champion of Change Ambassador of the Year award.

SHAPIRO: That's her son, Craig Blackburn, introducing her.

EHRLE: Almost 39 years ago - I'm sorry to age you already - Craig was born, and my life took a new and immediate direction. I learned that if Craig was going to live to his greatest potential, I was going to have to be his voice.

SHAPIRO: Her son, Craig, has his own scheduled presentations to lawmakers today. He's a graduate of the Partners in Policymaking class, too.

BLACKBURN: Partners helped me to launch a career. I am a motivational speaker.

SHAPIRO: A motivational speaker - he's spoken around the country and the world.

BLACKBURN: My message is that success comes in trying.

SHAPIRO: And that's another goal of Partners in Policymaking. When parents are advocates, their kids with disabilities watch and then become advocates for themselves. Joseph Shapiro, NPR News. Transcript provided by NPR, Copyright NPR.