by Cathy McMorris Rodgers from Forbes:
Seven years ago, just hours after giving birth to our son Cole, I learned how a single diagnosis can change your whole life. How two simple words – Down syndrome – are associated with lifelong complications and heart defects and Leukemia and even early Alzheimer’s. But in that moment, when Cole was taken away for surgery and we reeled from the lifetime of uncertainty that suddenly lay before us, I learned firsthand how scientific advancement saves lives.
While breakthroughs in medicine and technology have given hope to Cole and so many millions like him – whether they have Down syndrome or Autism or cancer – we still have a long way to go to remain the world leader in innovation. In fact, of the 7,000 known diseases, we only have treatments for 500 of them. It is one of the greatest and noblest causes of our time: to commit ourselves, as a country and a Congress, to saving lives.
That is why, as part of the House Energy and Commerce Committee, we have launched the 21st Century Cures initiative, whose mission is to expedite the discovery, development, and delivery of new and innovative treatments to patients everywhere. We need to leverage technological advances to rethink how we conduct research and break down outdated administrative and procedural hurdles. We are committed to reducing the time and complexity of clinical trials so Americans have the best, most effective treatments right here at home.
Wednesday, July 30, 2014
Tuesday, July 29, 2014
Schumer wants tax-free savings accounts for the disabled
by David M. Schwartz from Newsday:
Sen. Charles Schumer called on Congress Monday to pass legislation to create savings accounts with tax breaks to benefit individuals with long-term disabilities such as Down syndrome and autism.
The Achieving a Better Life Experience Act would help family members and individuals save money to cover critical education, medical care and other costs. Schumer (D-N.Y.) said the accounts, in which up to $100,000 could be deposited, would be similar to 529 college savings plans, with tax-free earnings.
"When caring for some of the most vulnerable children, managing the huge expenses should be a top priority for everyone," Schumer said Monday at the Nassau BOCES Rosemary Kennedy School in Wantagh.
Schumer compared the proposal to other federal accounts with tax advantages. "If it's good for education, good for retirement, what about our special kids?" he said.
John Kemp, president and chief executive of the Viscardi Center, a nonprofit in Albertson that provides services to children and adults with disabilities, called the legislation "the beginning of the end of a terrible disability-poverty cycle that forces many Americans into poverty and then keeps them there."
To qualify for many government services, people with disabilities can only have $2,000 in savings and earn no more than $700 a month, he said.
Sen. Charles Schumer called on Congress Monday to pass legislation to create savings accounts with tax breaks to benefit individuals with long-term disabilities such as Down syndrome and autism.
The Achieving a Better Life Experience Act would help family members and individuals save money to cover critical education, medical care and other costs. Schumer (D-N.Y.) said the accounts, in which up to $100,000 could be deposited, would be similar to 529 college savings plans, with tax-free earnings.
"When caring for some of the most vulnerable children, managing the huge expenses should be a top priority for everyone," Schumer said Monday at the Nassau BOCES Rosemary Kennedy School in Wantagh.
Schumer compared the proposal to other federal accounts with tax advantages. "If it's good for education, good for retirement, what about our special kids?" he said.
John Kemp, president and chief executive of the Viscardi Center, a nonprofit in Albertson that provides services to children and adults with disabilities, called the legislation "the beginning of the end of a terrible disability-poverty cycle that forces many Americans into poverty and then keeps them there."
To qualify for many government services, people with disabilities can only have $2,000 in savings and earn no more than $700 a month, he said.
Monday, July 28, 2014
Job Coach Not Required as Accommodation For Worker With Down Syndrome, Court Says
by Patrick Dorrian from Bloomberg BNA:
July 18 — A food store wasn't required to accommodate an intellectually disabled employee it fired for swearing in front of customers even though the worker's parents had unsuccessfully asked that he be given a job coach for a separate workplace problem, the U.S. Court of Appeals for the Seventh Circuit ruled July 17.
Affirming a ruling for Jewel Food Stores Inc., the court found the company had no duty under the Americans with Disabilities Act to accommodate Sean Reeves, who has Down syndrome, before firing him after he cursed at and insulted a cashier while a customer was standing nearby.
Company Provided Some Accommodations
Reeves worked for Jewel, a supermarket chain, as a bagger from June 1997 until he was fired in April 2005. According to the court, he received “an array of vocational tutoring early in his tenure with Jewel” to help him perform his essential job duties.
The tutoring included job coaching provided by a social service agency and individual training on daily tasks provided by Jewel's service manager. The service manager also helped Reeves calm down whenever he felt frustrated, the court said.
In addition, Reeves's supervisor completed a daily evaluation form, which was sent to Reeves's parents. Reeves also was exempted from the usual bagger duty of collecting shopping carts from the parking lot.
The cursing incident that resulted in his discharge wasn't the first time Reeves had used profane language in the workplace. Previously, he had cursed at a manager when the table at which Reeves usually ate lunch was used for a wine tasting, and he cursed within earshot of a customer about a woman who complained that Reeves ate her grapes while he was bagging them.
His workplace theft occurred a month before his discharge, when he took an American flag pin from a store shelf without paying for it. He apparently didn't know that the pins were for sale, the court said.
Under Jewel policy, Reeves could have been fired for theft of store merchandise, but the company instead decided to just write up the incident and to notify his parents. Reeves's parents responded by asking if Jewel could bring in a job coach, but Reeves's supervisor believed coaching was unnecessary.
Following Reeves's discharge, his parents sued on his behalf under the ADA. The U.S. District Court for the Northern District of Illinois ruled for Jewel.
July 18 — A food store wasn't required to accommodate an intellectually disabled employee it fired for swearing in front of customers even though the worker's parents had unsuccessfully asked that he be given a job coach for a separate workplace problem, the U.S. Court of Appeals for the Seventh Circuit ruled July 17.
Affirming a ruling for Jewel Food Stores Inc., the court found the company had no duty under the Americans with Disabilities Act to accommodate Sean Reeves, who has Down syndrome, before firing him after he cursed at and insulted a cashier while a customer was standing nearby.
Company Provided Some Accommodations
Reeves worked for Jewel, a supermarket chain, as a bagger from June 1997 until he was fired in April 2005. According to the court, he received “an array of vocational tutoring early in his tenure with Jewel” to help him perform his essential job duties.
The tutoring included job coaching provided by a social service agency and individual training on daily tasks provided by Jewel's service manager. The service manager also helped Reeves calm down whenever he felt frustrated, the court said.
In addition, Reeves's supervisor completed a daily evaluation form, which was sent to Reeves's parents. Reeves also was exempted from the usual bagger duty of collecting shopping carts from the parking lot.
The cursing incident that resulted in his discharge wasn't the first time Reeves had used profane language in the workplace. Previously, he had cursed at a manager when the table at which Reeves usually ate lunch was used for a wine tasting, and he cursed within earshot of a customer about a woman who complained that Reeves ate her grapes while he was bagging them.
His workplace theft occurred a month before his discharge, when he took an American flag pin from a store shelf without paying for it. He apparently didn't know that the pins were for sale, the court said.
Under Jewel policy, Reeves could have been fired for theft of store merchandise, but the company instead decided to just write up the incident and to notify his parents. Reeves's parents responded by asking if Jewel could bring in a job coach, but Reeves's supervisor believed coaching was unnecessary.
Following Reeves's discharge, his parents sued on his behalf under the ADA. The U.S. District Court for the Northern District of Illinois ruled for Jewel.
Sunday, July 27, 2014
Child’s inspirational graduation story touches hearts
by Leigh Garner from WIAT:
TUSCALOOSA, Ala. (WIAT) – It’s the happiest and saddest day of the year at The University of Alabama RISE School in Tuscaloosa. Over 20 five and six year-olds are putting on the caps and gowns that make them look, as director Dr. Martha Cook puts it, “like little angels.”
After years of learning, growing, and loving; another batch of babies are graduating to kindergarten. The RISE school is a unique learning environment.
Started back in 1974, the program was designed to serve children with disabilities. Over the years, the program broadened to serve an equal number of children with disabilities and their typically developing peers.
At graduation rehearsal Thursday morning, Ute Jocham got a sneak peek of the night’s performances. Her daughter, Mandy, is graduating.
“This is what we didn’t expect when she was born,” Jocham says. Mandy was born with a heart defect and Down syndrome. Her parents are from Germany, and Jocham didn’t know much about the condition.
“To be honest, I was shocked,” she says. “I didn’t know it, and when the doctor came into the room and said she had Down syndrome, I was in tears.”
Dr. Cook explains that in Germany, they don’t currently have any programs like RISE, and that people with Down Syndrome are often hidden away or institutionalized.
“I’m sure that her [Jocham] expectations were probably tempered by that,” says Cook.
Jocham learned about RISE from friends in the Tuscaloosa area. She was told that early intervention could be key the Mandy’s success in life.
Mandy first enrolled at RISE when she was just 9 months-old. Since then, everyone around Mandy has been amazed by how much she has achieved.
“I wouldn’t change her for anything else, and she’s a blessing,” says Jocham.
Mandy is now trilingual, fluent in German, English, and sign-language. Cook says her fiery red hair reflects her big personality.
Her mother describes her as a social butterfly.
“She was standing in front of Northport Elementary,” Jocham says,”and Mandy said, ‘Wow!’ And she was so impressed, like, this is the school I’m going to, and I said, okay. She’s ready.”
TUSCALOOSA, Ala. (WIAT) – It’s the happiest and saddest day of the year at The University of Alabama RISE School in Tuscaloosa. Over 20 five and six year-olds are putting on the caps and gowns that make them look, as director Dr. Martha Cook puts it, “like little angels.”
After years of learning, growing, and loving; another batch of babies are graduating to kindergarten. The RISE school is a unique learning environment.
Started back in 1974, the program was designed to serve children with disabilities. Over the years, the program broadened to serve an equal number of children with disabilities and their typically developing peers.
At graduation rehearsal Thursday morning, Ute Jocham got a sneak peek of the night’s performances. Her daughter, Mandy, is graduating.
“This is what we didn’t expect when she was born,” Jocham says. Mandy was born with a heart defect and Down syndrome. Her parents are from Germany, and Jocham didn’t know much about the condition.
“To be honest, I was shocked,” she says. “I didn’t know it, and when the doctor came into the room and said she had Down syndrome, I was in tears.”
Dr. Cook explains that in Germany, they don’t currently have any programs like RISE, and that people with Down Syndrome are often hidden away or institutionalized.
“I’m sure that her [Jocham] expectations were probably tempered by that,” says Cook.
Jocham learned about RISE from friends in the Tuscaloosa area. She was told that early intervention could be key the Mandy’s success in life.
Mandy first enrolled at RISE when she was just 9 months-old. Since then, everyone around Mandy has been amazed by how much she has achieved.
“I wouldn’t change her for anything else, and she’s a blessing,” says Jocham.
Mandy is now trilingual, fluent in German, English, and sign-language. Cook says her fiery red hair reflects her big personality.
Her mother describes her as a social butterfly.
“She was standing in front of Northport Elementary,” Jocham says,”and Mandy said, ‘Wow!’ And she was so impressed, like, this is the school I’m going to, and I said, okay. She’s ready.”
Saturday, July 26, 2014
Strong Demand for Florida's Latest Educational Option
from WCTV:
In less than a week, more than 1,100 Florida parents of students with significant special needs including autism, Down syndrome and cerebral palsy have begun applications for a new type of K-12 scholarship that allows them to individualize their child’s education.
The Personal Learning Scholarship Account (PLSA) program, the second of its kind in the nation, was passed by the Florida Legislature last spring and signed into law by Gov. Rick Scott. The application process opened last Friday at Step Up For Students, a nonprofit scholarship organization that is authorized to administer the program. The state set aside $18.4 million for the first year of the program – enough for an estimated 1,800 students.
In less than a week, more than 1,100 Florida parents of students with significant special needs including autism, Down syndrome and cerebral palsy have begun applications for a new type of K-12 scholarship that allows them to individualize their child’s education.
The Personal Learning Scholarship Account (PLSA) program, the second of its kind in the nation, was passed by the Florida Legislature last spring and signed into law by Gov. Rick Scott. The application process opened last Friday at Step Up For Students, a nonprofit scholarship organization that is authorized to administer the program. The state set aside $18.4 million for the first year of the program – enough for an estimated 1,800 students.
Friday, July 25, 2014
Thursday, July 24, 2014
Story of Connecticut Boy's Truck Ride Garners Ford's Attention
When Ford Motor Company heard how a Manchester landscaper made a teenager with Down syndrome smile with a simple ride in his Ford truck, a representative from Ford headquarters in Michigan wrote to him that the story sounded like something out of a country song "that makes you cry for all the right reasons."
So when Tom Topping, 54, responded that he was a "Toby Keith kind of guy," Ford offered Topping, the boy, Kevin Fellows, 15, and his family tickets to see Toby Keith perform at Xfinity Theatre in Hartford this weekend. Ray Seraphin Ford in Rockville Connecticut, where Topping got his 2012 Ford F-250, is also detailing his truck for free after learning of the story.
The recognition is heartwarming, but ask Topping about his act of kindness and he'll tell you that his gesture wasn't much. For the Manchester Green Lawn Services owner, the special part of the story is really about Kevin and his moment in the truck, the "Big Red Monster," that made it feel like "Christmas in July."
"I gave a kid a ride in a truck and you're supposed to make kids smile," he said.
Kevin, a Coventry High School student, loves playing with trucks, cars and trains, often riding with his grandfather on his tractor in the past.
"He was very excited," said his grandmother, Gail Zanlungo, who has taken care of him often over the past 13 years. "He loves anything like a tractor that moves."
It all started when Topping was at Zanlungo's house in Manchester mowing her lawn on July 10. Zanlungo was Topping's first customer when he opened a year ago after a career in sales and he had never met her grandson, Kevin before. Kevin was visiting, going from window to window to watch Topping mow. He brought a lawn chair outside to sit and watch Topping continue in the backyard, a part of the house without windows.
Tuesday, July 22, 2014
App: Gross Motor Skills for Children with Down Syndrome Mobile Companion
This singularly unique app provides a mechanism by which parents and therapists of children with Down syndrome may catalog and track the progress a child is making in gaining the skills recommended in the 'Gross Motor Skills for Children with Down syndrome' book, authored by Patricia Winders.
As parents and therapists of children with Down syndrome, we understand that the pace at which they grow, learn, and develop varies greatly from that of typical children. Indeed, even within the Down syndrome population each child learns at their own unique pace. Personality, capability, motivation, health, and environment all cause us to adapt our thinking and techniques for caring for these wonderful children. As such, typical "Baby Trackers" and "Milestone Loggers" are often far too rigid and quickly fail to be flexible enough to accommodate the unique challenges presented to parents of special needs children. For example, typical trackers provide early development milestones and suggestions that quickly fall short of the "extra mile" we must go as care givers to ensure our children will achieve their highest potential.
As parents and therapists of children with Down syndrome, we understand that the pace at which they grow, learn, and develop varies greatly from that of typical children. Indeed, even within the Down syndrome population each child learns at their own unique pace. Personality, capability, motivation, health, and environment all cause us to adapt our thinking and techniques for caring for these wonderful children. As such, typical "Baby Trackers" and "Milestone Loggers" are often far too rigid and quickly fail to be flexible enough to accommodate the unique challenges presented to parents of special needs children. For example, typical trackers provide early development milestones and suggestions that quickly fall short of the "extra mile" we must go as care givers to ensure our children will achieve their highest potential.
Monday, July 21, 2014
Achieving a Better Life Exeperience (ABLE) Advances in the 113th Congress
from the NDSS and Digital Journal:
Subcommittee on taxation and IRS Oversight of the US Senate Committe on Finance Will Convene a Congressional Hearing on NDSS' Top Legislative Priority, #PasstheABLEact, and NDSS Board Member Sara Wolff Set to Testify
WASHINGTON, July 21, 2014 /PRNewswire/ -- Sara Wolff, a board member and self-advocate from the National Down Syndrome Society (NDSS), will testify before the Subcommittee on Taxation and IRS Oversight of the US Senate Committee on Finance on the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647). The hearing, "Saving for an Uncertain Future: How the ABLE Act can Help People with Disabilities and their Families", will take place on Wednesday, July 23, 2014, at 10 a.m., in 215 Dirksen Senate Office Building.
Wolff is a 31-year-old young woman with Down syndrome from Moscow, Pennsylvania, and has been a board member of NDSS since 2007. Earlier this year, Wolff authored a change.org petition calling on members of Congress to pass the ABLE Act in the 113th Congress. Wolff's petition has earned the support of over 250,000 people around the country.
In addition to Wolff, the Congressional panel will also include Congresswoman Cathy McMorris Rodgers, Member of Congress (R-Washington), U.S. House of Representatives, Spokane, Washington and mother to Cole, who happens to have Down syndrome; Robert D'Amelio, Parent and Advocate, Autism Speaks, Charlotte, North Carolina; and Chase Alston Phillips, Financial Advisor, Alexandria, Virginia.
"Just because I have Down syndrome, that shouldn't hold me back from achieving my full potential in life," Sara Wolff said. "I can work a full-time job, be a productive member of society, and pay taxes – but because of these outdated laws placed on individuals with disabilities, we hold people like me back in life. It's time that Congress act and pass the ABLE Act."
Subcommittee on taxation and IRS Oversight of the US Senate Committe on Finance Will Convene a Congressional Hearing on NDSS' Top Legislative Priority, #PasstheABLEact, and NDSS Board Member Sara Wolff Set to Testify
WASHINGTON, July 21, 2014 /PRNewswire/ -- Sara Wolff, a board member and self-advocate from the National Down Syndrome Society (NDSS), will testify before the Subcommittee on Taxation and IRS Oversight of the US Senate Committee on Finance on the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647). The hearing, "Saving for an Uncertain Future: How the ABLE Act can Help People with Disabilities and their Families", will take place on Wednesday, July 23, 2014, at 10 a.m., in 215 Dirksen Senate Office Building.
Wolff is a 31-year-old young woman with Down syndrome from Moscow, Pennsylvania, and has been a board member of NDSS since 2007. Earlier this year, Wolff authored a change.org petition calling on members of Congress to pass the ABLE Act in the 113th Congress. Wolff's petition has earned the support of over 250,000 people around the country.
In addition to Wolff, the Congressional panel will also include Congresswoman Cathy McMorris Rodgers, Member of Congress (R-Washington), U.S. House of Representatives, Spokane, Washington and mother to Cole, who happens to have Down syndrome; Robert D'Amelio, Parent and Advocate, Autism Speaks, Charlotte, North Carolina; and Chase Alston Phillips, Financial Advisor, Alexandria, Virginia.
"Just because I have Down syndrome, that shouldn't hold me back from achieving my full potential in life," Sara Wolff said. "I can work a full-time job, be a productive member of society, and pay taxes – but because of these outdated laws placed on individuals with disabilities, we hold people like me back in life. It's time that Congress act and pass the ABLE Act."
Thursday, July 17, 2014
Tim McGraw Serenades Young Fan at Atlanta Concert
by Kay West from People:
Country music superstar Tim McGraw puts on a really big show, but it was an intimate one-on-one serenade to an enchanted young girl that brought the packed house down at Aaron’s Amphitheater in Atlanta Sunday night.
While performing "You Are So Beautiful" for wife Faith and his three daughters, he spotted the enraptured fan in the front of the crowd, mouthing the words to the classic love song, and invited her to join him on stage.
As cameras captured the moment, they sat side by side and finished the tune together. After sharing a big hug, the singer, who clearly knows the way to a woman’s heart, signed his guitar and presented it to the girl – much to the delight of the entire audience.
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