美国国家公共电台 NPR Teaching Parents Of Kids With Disabilities To Fight Back

 

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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.

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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.

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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.

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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.

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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.