East Peoria family lobbies in Washington, D.C. to support those with Down syndrome

Jeanette Kendall TimesNewspapers
Alex Tucker sits with his mother, Meri Tucker, in their East Peoria home. Alex Tucker was born with Down syndrome. The family is active with the Heart of Illinois Down Syndrome Association located in Morton.

Meri and Chuck Tucker of East Peoria are passionate about the Heart of Illinois Down Syndrome Association and those positive changes that can help people with Down syndrome, a genetic disorder.

Their son, Alexander Tucker, 23, was born with Down syndrome.

The association is located inside Bethel Lutheran Church, 425 N. Missouri Ave., Morton.

“We got involved when Alex was born. The association has been around since the early ’80s,” Meri Tucker, who is currently the organization’s vice president, said.

According to the group’s website, the organization is committed to “improving the quality of life of persons with Down syndrome, as well as those with other disabilities, by sponsoring local workshops and conferences on topics such as health, inclusive education and behavioral support strategies.”

About 400 families in the tri-county area utilize the services at the association for free. Services include support and advocacy, resource library, conference stipends, recreational scholarships, family networking opportunities, speakers on disability issues and biannual workshops.

Meri Tucker said at one time or another, her entire family, which also includes her daughter, Camille, and son, Gabriel, have been involved with HOIDSA.

“Our family has benefited so much in so many ways by connecting with 

the Heart of Illinois Down Syndrome Association. I really want other people to have that experience,” she said. “I also want people to know, it’s so vital once you get that diagnosis that there is support. You don’t have to do it all by yourself.”

“It’s our goal to kind of be a catalyst,” Meri Tucker said. “We want that exchange of knowledge to go on. Professionals learn from us and we learn from them.”

Progress has been made over the years concerning those with Down syndrome.

“In the educational setting, it’s really nice. It’s not so bad now, but when Alex was younger, if you had a child who learned differently, they immediately wanted to send you through the special education program, which may or may not have been the best choice — that’s just what everyone did,” Meri Tucker said.

Now, Tucker said through the efforts of groups like HOIDSA, learning is more individualized.

HOIDSA officials also visited schools to better educate children about Down syndrome.

“We kind of break down some of the myths that surround it. We just say Down syndrome is a genetic disorder. You cannot catch it. You cannot develop it. It’s not a disease,” Meri Tucker said. “It just makes doing things a little more difficult, but there are very few things a person with Down syndrome cannot do.”

Alex Tucker is proof of that. He currently attends Illinois Central College part-time. Someday, he would like to live on his own.

“I’m studying to be a personal trainer for my friends with Down syndrome and with all disabilities and an artist,” Alex Tucker said. 

Alex Tucker said he likes to draw and paint. He also likes basketball, swimming and theater. He has his own business card that says he is a self advocate for the HOIDSA.

“He’d like to eventually be on the board for one of the national Down syndrome associations,” Meri Tucker said.

In the past, Alex Tucker was involved with the Penguin Project, a program that allows youth with disabilities to perform in a play with a mentor at Eastlight Theatre in East Peoria. Since he’s reached an age where he can no longer do those productions, he is now part of the Penguin Project’s Troop, the graduates.

“They still perform and do entertainment at different venues,” Meri Tucker said.

The Tuckers recently returned from Washington, D.C., where they participated in a Buddy Walk and met with legislators to lobby for the ABLE Act. The act stands for Achieving a Better Life Experience.

“We all congregate from throughout the entire United States ... and it comes through the local affiliates, and it’s called the Buddy Walk, and we walk on Washington,” Meri Tucker said.

About 300 plus people participated in the Buddy Walk, which is a planned event in which legislators set up for those coming.

“We get started at 6 a.m. and come back close to 7 p.m.,” Meri Tucker said.

The ABLE Act, according to the National Down Syndrome Society, would create tax-free savings accounts for individuals with disabilities. 

“The key points of the ABLE Act are that it would enable individuals who receive Social Security insurance and supplemental insurance, SSI, to be able to save money in a program, ... they could put money away. It would be tax free up to $100,000,” Meri Tucker said. “Currently, as it stands, anyone who receives government benefits, SSI, they can’t have a penny more than $2,000 ever because the moment they go over $2,000, they are disqualified and booted out of the system.”

Alex Tucker explained the act in his own way: “It would help people with disabilities save money. I told them what it means to me, which is to save money for a house, for a car and living independently. I don’t want to live in poverty.”

While in Washington, D.C., the Tuckers met with U.S. Rep. Aaron Schock, R-Peoria.

“I am proud to say that every congressperson from Illinois has signed on,” Meri Tucker said. “We have 63 senators who have signed on and 338 congressmen and women, representatives who have signed on, so it’s going to pass because that’s just unheard of. Nobody gets that much support.”

With the passing of the ABLE Act, Meri Tucker said her son will be able to be more independent.

“It gives him some say. It gives him a sense of pride. He’s not relegated to working at a job he wouldn’t like. Now he could have a little bit of freedom,” Meri Tucker said. “Plus now you become an active part of your community instead of always being the recipient. I mean the pride involved in saving and planning for something, we all know what that feels like.”

Also, while in Washington, D.C., Meri Tucker said the group lobbied for more funding for research for Down syndrome.

“Even though it’s the most common birth defect — we have the largest numbers throughout the United States — we get the smallest amount of funding,” she said.

For more information about the HOIDSA, call 712-4852 or visit http://www.hoidsa.org/