Lebanon, Pennsylvania
Fighting for her daughter's rights
by Bill Warner
September 4, 2010
Lebanon Daily News (Lebanon, PA)
Wendy Smith never considered herself a crusader or someone who would stick out in a crowd. But that all changed, she said, when the system failed her daughter, Heather Sholley, who was born with Mosaic Down Syndrome.
by Bill Warner
September 4, 2010
Lebanon Daily News (Lebanon, PA)
Wendy Smith never considered herself a crusader or someone who would stick out in a crowd. But that all changed, she said, when the system failed her daughter, Heather Sholley, who was born with Mosaic Down Syndrome.
Despite her disability, Heather, now 26, two years ago found herself in a very typical situation for a young adult - she wanted to leave the home she shared with her mother and go out on her own.
This presented a Catch-22 situation for Smith. Heather was legally old enough to get her own place, but wasn't ready to live alone. Studies have shown that people with Mosaic Down Syndrome (characterized by an extra 21st chromosome in some cells) have a higher IQ and more developed motor skills than people with typical Down Syndrome.
"Heather wanted to go to the next level," Smith said. "At age 24, she wanted to spread her wings a little.
"She can do everything for herself (household chores)," Smith said of her daughter, "but she's not mature enough to live on her own."
While some social-service agencies in Lebanon County provided help for certain aspects of Heather's condition, according to Smith, no one could provide the complete package she sought - a safe place for Heather to live and funding to help pay for it.
"I have found that, in advocating for my daughter, there are no resources available in this county (for someone in Heather's situation)," Smith said.
At the time, Heather insisted on moving out. She was placed in supervised facilities similar to a boarding house.
"I remember dropping her off at Mental Health/Mental Retardation," Smith said. "I cried. I felt like the worst mother in the world."
But Smith felt it was important to give Heather a chance to find independence. Many parents of a child with Down Syndrome or a mental disability keep the child at home until the parents get old and die, then the state steps in and decides where the child will live. Smith didn't want that to happen to her and Heather.
Sadly, the unthinkable happened after Heather moved into some of the facilities. She was abused.
Smith removed Heather from the situation, then got mad and decided to fight for her daughter's rights. And the rights of others in similar situations.
"She said to me, 'Mom, why does this stuff happen to me?' And I said, 'You know what, Heather? Why not? At least you have a voice,'" Smith recalled. "There's a lot of people who don't have anyone to speak out for them. But we had a voice, and we can speak out and do something about it."
Smith decided to go public with Heather's story. She spoke at a town-hall meeting and told her story to a local TV station. She also contacted local lawmakers to see if funding was available for Heather and people like her.
"You got to stand up above the crowd if you want to be heard," Smith said. "It's hard to do, but you got to do it. Everybody has a voice."
She put her story out there and pushed hard for help. And her efforts were rewarded.
State Sen. Mike Folmer and U.S. Rep. Tim Holden secured state and federal funding that enabled Heather to move into a quality facility in Berks County with one or two other housemates and 24/7 supervision. She also has a full-time job in Berks County. Smith talks to her daughter every day and visits often.
"I can't say enough good things about Congressman Holden and Senator Folmer," Smith said. "They listened to me, and they helped me to the best of their ability."
Her story has a happy ending, but Smith is not resting on her laurels. She hopes to start a support group - Divine Hope - and continue to advocate for people whose voice is not being heard.
"I didn't think I would do this because I fought my battle," she said. "But I felt it was my duty to do this. I want to help people because I know how to get through all the red tape and helping to make a difference in the lives of others."
This presented a Catch-22 situation for Smith. Heather was legally old enough to get her own place, but wasn't ready to live alone. Studies have shown that people with Mosaic Down Syndrome (characterized by an extra 21st chromosome in some cells) have a higher IQ and more developed motor skills than people with typical Down Syndrome.
"Heather wanted to go to the next level," Smith said. "At age 24, she wanted to spread her wings a little.
"She can do everything for herself (household chores)," Smith said of her daughter, "but she's not mature enough to live on her own."
While some social-service agencies in Lebanon County provided help for certain aspects of Heather's condition, according to Smith, no one could provide the complete package she sought - a safe place for Heather to live and funding to help pay for it.
"I have found that, in advocating for my daughter, there are no resources available in this county (for someone in Heather's situation)," Smith said.
At the time, Heather insisted on moving out. She was placed in supervised facilities similar to a boarding house.
"I remember dropping her off at Mental Health/Mental Retardation," Smith said. "I cried. I felt like the worst mother in the world."
But Smith felt it was important to give Heather a chance to find independence. Many parents of a child with Down Syndrome or a mental disability keep the child at home until the parents get old and die, then the state steps in and decides where the child will live. Smith didn't want that to happen to her and Heather.
Sadly, the unthinkable happened after Heather moved into some of the facilities. She was abused.
Smith removed Heather from the situation, then got mad and decided to fight for her daughter's rights. And the rights of others in similar situations.
"She said to me, 'Mom, why does this stuff happen to me?' And I said, 'You know what, Heather? Why not? At least you have a voice,'" Smith recalled. "There's a lot of people who don't have anyone to speak out for them. But we had a voice, and we can speak out and do something about it."
Smith decided to go public with Heather's story. She spoke at a town-hall meeting and told her story to a local TV station. She also contacted local lawmakers to see if funding was available for Heather and people like her.
"You got to stand up above the crowd if you want to be heard," Smith said. "It's hard to do, but you got to do it. Everybody has a voice."
She put her story out there and pushed hard for help. And her efforts were rewarded.
State Sen. Mike Folmer and U.S. Rep. Tim Holden secured state and federal funding that enabled Heather to move into a quality facility in Berks County with one or two other housemates and 24/7 supervision. She also has a full-time job in Berks County. Smith talks to her daughter every day and visits often.
"I can't say enough good things about Congressman Holden and Senator Folmer," Smith said. "They listened to me, and they helped me to the best of their ability."
Her story has a happy ending, but Smith is not resting on her laurels. She hopes to start a support group - Divine Hope - and continue to advocate for people whose voice is not being heard.
"I didn't think I would do this because I fought my battle," she said. "But I felt it was my duty to do this. I want to help people because I know how to get through all the red tape and helping to make a difference in the lives of others."
RSS Feed
