Friday, February 28, 2014

Crenshaw Earns 2014 NDSS Champion of Change Award

, Feb. 27 -- Rep. Ander Crenshaw, R-Fla. (4th CD), issued the following news release: The National Down Syndrome Society today (2/27) awarded Congressman Ander Crenshaw its 2014 Champion of Change Award, citing his focus on advancing the nation's commitment to people with Down Syndrome through the Achieving a Better Life Experience Act (ABLE Act - H.R. 647/S. 313). "Receiving the 2014 Champion of Change award is a great honor, but really the members of the National Down Syndrome Society and its wide base of dedicated volunteers deserve to take a bow," said Crenshaw, on Thursday after receiving the award. "Plain and simple: Individuals with disabilities should have access to the same financial planning tools as other Americans. That's why Congress needs to pass the ABLE Act. Tax free savings accounts would allow millions who do not have that freedom today an opportunity to pro-actively plan for their future and live to their full potential. With the steadfast commitment of NDSS and other organizations, we will all reach that goal together."

Thursday, February 27, 2014

Globetrotters Sign 3-point Ace With Down Syndrome For Philadelphia Game

PHILADELPHIA (AP) — Kevin Grow, a high school senior with Down syndrome who became an Internet hit with his 3-point shooting, will play next month for the Harlem Globetrotters.
Grow will suit up for the Globetrotters in the fourth quarter of their March 9 game in Philadelphia. Grow, a devout Globetrotters fan from suburban Philadelphia, was added to the roster Tuesday as their 3-point specialist.
He signed a ceremonial two-day contract last week with the Philadelphia 76ers. He took part in pregame activities, and received a jersey.
The 18-year-old Grow spent four years as team manager of the Bensalem High School boys basketball team. He played in two games, hitting four 3-pointers in the final 2 minutes of his second one, and highlights went viral.

Wednesday, February 26, 2014

Teen with Down syndrome becomes magazine model

by CNN Wire:
COLLINSVILLE, Ill. (KMOV) –  Monday was “Karrie Brown Day” in Collinsville, Illinois. The teenager was honored after she made her modeling debut in a national magazine.
After the 17-year-old girl’s Facebook page received 11,000 “likes” in less than a week, her favorite clothing store, Wet Seal, flew her to California to become their first model with Down syndrome.
“One of the girls from corporate Wet Seal said where did she learn to do those modeling moves? I said I have absolutely no idea, they said, she’s got a natural talent for it,” Karrie’s mom Sue Brown said.
When Karrie was a week old, a doctor told Sue never to expect anything from her. More than 28,000 Facebook likes and a stint in a national magazine later, it’s Sue who has the last laugh.
“They did a two page article on her which just kind of blew Karrie away, to see her picture in the same magazine with Ross Lynch and Selena Gomez and One Direction,” Sue said.
Karrie will walk the red carpet at a pre-Oscar event on March 1.

Tuesday, February 25, 2014

ABLE Act Would Allow Families to Prepare for the Future

by Laurel Joss from Autism Daily Newscast:
Caring for a loved one with autism is expensive. The expenses of raising a child with autism can include medical care, therapies, and respite care, but they do not end there. When children with autism grow up, they still have needs, including housing, utilities, and for many, around-the-clock supervision.
A recent survey by Autism Speaks of over 10,000 people from various socioeconomic and ethnic backgrounds in the United States found that only one out of four families were saving money for their child’s future needs. This statistic is frightening, considering the sheer numbers of children who will be ageing out of the school system in the next decade.
The Achieving A Better Life Experience Act (ABLE Act – S.313/H.R. 647) would allow families in the United States to open tax-free accounts similar to college savings accounts, health savings accounts, and individual retirement accounts in order to provide for their child’s future needs. Funds could be used for qualified expenses, including medical and dental care, education, housing, transportation, and job training programs. The ABLE Act also includes Medicaid fraud protection and a Medicaid pay-back provision when the beneficiary passes away.
Money saved through an ABLE account would not count against an individual’s eligibility for federal benefits, allowing individuals with disabilities to earn an income and save money towards their future without losing the benefits necessary for daily living.
Canada currently offers a similar program using Registered Disability Savings Plans (RDSP).

Monday, February 24, 2014

Congress Eyeing Tax-Free Disability Savings Accounts

by Michelle Diament from Disability Scoop:
With significant public backing and support in Congress, advocates say federal lawmakers are poised to consider a major change to the money-saving abilities of those with disabilities.
Just one hurdle remains before Congress is expected to take up the Achieving a Better Life Experience, or ABLE, Act.
The bill — which has lingered since at least 2009 — would establish special accounts to allow people with disabilities to save up to $100,000 without risking their eligibility for benefits like Social Security. What’s more, under the plan, individuals could retain Medicaid no matter how much is deposited.
But before Congress can move forward, lawmakers are waiting for the Congressional Budget Office to weigh in with an estimate of what the bill would cost the government if it’s implemented. Once that figure is released — which could happen any day now — Congress is expected to act swiftly with advocates hoping for a floor vote in early spring.
“The ABLE Act is a must-pass piece of legislation for this Congress,” said U.S. Rep. Cathy McMorris Rodgers, R-Wash., who is a member of the House leadership and a co-sponsor of the bill, in a statement to Disability Scoop.
Modeled after the popular 529 college savings plans, the ABLE Act would allow individuals with disabilities to open a special account at any financial institution to pay for education, health care, transportation, housing and other expenses. Interest earned on savings within the accounts would be tax-free.

Sunday, February 23, 2014

Conquering the Hill
by Kendall Hatch from MetroWest Daily News:
If there were a list of the most dedicated people at the Massachusetts State House, chances are you'd find John Anton and Melissa Reilly on it.
Anton and Reilly, both adults with Down syndrome, are part-time aides in the offices of a pair of local legislators – Anton works in the office of state Rep. Tom Sannicandro, D-Ashland, and Reilly works for state Sen. Jamie Eldridge, D-Acton. During a joint interview this month in Boston, the pair was eager to talk about their work, both on and off Beacon Hill, and how they got involved in public service.
"I like the work that I'm doing," Anton, a 48-year-old Haverhill resident said. "I live and breathe work and I'm a workaholic when it comes to the work that I do."

Saturday, February 22, 2014

Commission Holds Final Listening Session In Frederick

from WFMD 930 Free Talk:
The final listening session of the Maryland Commission for Effective Community Inclusion Of Individuals with Intellectual and Developmental Disabilities was held in Frederick on Saturday afternoon. The panel was set up to examine training for police officers and other first-responders in dealing with persons with disabilities, and to make recommendations.
Members heard from a number of witnesses, including Phyllis Lidell, whose grandson has autism. She  said he also  has physical disabilities no one can see. "Police officers are working with everybody. They're so vulnerable to their ignorance, and other people's ignorance. They are looked on for guidance in these situations. They're looked at to set an example and control the situation. And when they're out of control themselves, we've got mayhem," she said.
The panel was appointed by the Governor in September, 2013, following the death of Ethan Saylor, 26, of New Market, who died following a struggle with off-duty sheriff's deputies who were trying to remove him from a movie theater in Frederick. He had Down Syndrome.

Friday, February 21, 2014

SD lawmakers reject abortion ban for Down syndrome

PIERRE, S.D. (AP) — A measure that would have banned aborting fetuses diagnosed with Down syndrome was rejected by a South Dakota legislative committee Thursday, with lawmakers saying it could jeopardize the state's legal defense of abortion restrictions passed in previous years.
Lawmakers on either side of the issue joined to defeat the bill despite an emotional plea from its sponsor, Rep. Isaac Latterell, R-Tea, who talked about his love for his two sisters, Eva and Grace, who have the genetic disorder.
"I hope you can see what a treasure my sisters are and how much they can teach us about what is truly important in life," Latterell said. "We must stop killing children simply because they have Down syndrome before they even have a chance to shower us with their love, as Eva and Grace have with me."
The House and Human Services Committee voted 8-4 to scrap the measure after a vote to pass it ended in a 6-6 tie.

Thursday, February 20, 2014

Sixers honor Bensalem basketball star Kevin Grow

Bensalem basketball star Kevin Grow made his debut as part of the Philadelphia 76ers, after signing a two-day contract.
On Tuesday night, Grow was introduced on center court with his new teammates.
Before the game against the Cleveland Cavaliers, the teen was outfitted with his own custom jersey and a stall in the team's locker-room.
It was another memorable night for an inspirational young man.
The Sixers announced Monday they were signing the senior to a ceremonial two-day contract.
Signing the two-day contract capped an amazing week-long run in the national spotlight for the Bensalem High School senior.
Last week, Action News' Jeff Skversky reported on the 18-year-old whose story garnered attention from around the Delaware Valley.
"We said two minutes and you take advantage of your two minutes of fame. His life will be changed forever," said Earl Grow, father.
The teen, who has Down Syndrome, was the high school team's manager for the last four years.
Then, his coach let him suit up for the final two games of the season.

Wednesday, February 19, 2014

It’s Official: Teen With Down Syndrome Signs Contract With The 76ers

PHILADELPHIA (CBS) — A Bucks County teen who became an internet sensation after his amazing performance on the basketball court signed a ceremonial contract with the Philadelphia 76ers.
The 76ers announced that they would sign Bensalem High School senior Kevin Grow to a two-day contract Monday.
The contract was offered in-person by Sixers President of Basketball Operations & General Manager Sam Hinkie at the team’s practice facility.
Grow, who has Down syndrome, had been a team manager for the Bensalem boys basketball team for four years. But it’s what he did on senior night on the court that’s garnering all of the attention.
Kevin got to play, and when he did, he made magic happen.
“They put him in for the last two minutes and he started hitting three point shots and couldn’t miss,” Kevin’s mom said.
Kevin hit four 3-pointers in the last two minutes of the game to help beat Neshaminy 64-40.
Overnight, Grow became an internet sensation.
The 76ers made the big signing on Monday evening, as Grow was inked to a two-day ceremonial contract.
Sixers Head Coach Brett Brown seemed to warm up to his newest player pretty quick.
Brown – “Can you play defense?”
Kevin – “I can play defense, yes.”
Brown – “I know you can shoot, but you can play defense too?”
Kevin – “Yeah.”
Brown – “I say we give him a three-day contract.”
With that, Kevin signed on the dotted line and was handed his practice uniform. But before he could hit the floor, Coach Brown let the inspiring teen know that the team needed his help.
Brown – “You’re going to teach our young guys how to hold your follow through, and how to shoot like you shoot.”
Kevin – “Okay.”
Brown – “Can you do that?”
Kevin – “Yeah.”
Brown – “I know you can. We welcome you to the team man. Thank you for coming.”
Kevin – “Thank you so much.”

Tuesday, February 18, 2014

'Glee' actress tells FHSU crowd about life

by Elizabeth Golden from the Hays Daily News:
Lauren Potter, activist and "Glee" star, has worked her entire life to overcome challenges. Born with Down's syndrome, she always dreamed of being an actress.
"There were some who said I could never do it," she said Wednesday, addressing a group of approximately 150 students at Fort Hays State University. "I was dancing before I could even walk. I always loved music."
When Potter was 18, she received a phone call from a friend in Hollywood.
"She knew about my dream," Potter said. "I would tell anyone and everyone who would listen."
The casting director was looking for a girl "who wasn't afraid to reach for the stars," Potter said. She must have Down's syndrome, but also be cute, witty and spunky.
They were looking for someone to play Becky Jackson, a cheerleader who overcomes her struggle with the disability, on the new television show "Glee."
"I had always wanted to be a cheerleader," Potter said. "And even though I tried out at my high school, I wasn't allowed to cheer. I knew I wanted this job. I also knew I had to work really hard and do a really good job."
Potter said she still loves playing the part of Becky, but it has been a hard season for the cast after losing Cory Monteith to drugs.
"This has been a sad and rough time for our 'Glee' family," she said. "We lost our dear friend. I loved Cory. He was always so sweet and had so much talent."
She now is adding drug-use to her list of causes.

Monday, February 17, 2014

Intellectually Disabled Struggling To Find Work

by Sam Hananel from the Huffington Post and AP:
WASHINGTON (AP) — Most Americans with intellectual or developmental disabilities remain shut out of the workforce, despite changing attitudes and billions spent on government programs to help them. Even when they find work, it's often part time, in a dead-end job or for pay well below the minimum wage.
Employment is seen as crucial for improving the quality of life for people with these disabilities and considered a benchmark for measuring the success of special education programs. Yet the jobs picture is as bleak now it was more than a decade ago.
Only 44 percent of intellectually disabled adults are currently in the labor force, either employed or looking for work, while just 34 percent are actually working, according to a survey by Special Olympics and conducted by Gallup and the University of Massachusetts at Boston. That compares with 83 percent of nondisabled, working-age adults who are in the workforce.
"The needle has not changed in more than four decades," said Gary Siperstein, professor at the University of Massachusetts and one of the authors of the study. "We just can't move the barometer. And we've invested a lot of resources with lots of good programs around the country."
Intellectual disability can include conditions such as autism or Down syndrome. But the vast majority of cases are those with limited intellectual capacity — generally an IQ of about 75 or less — and limitations in handling basic life skills, such as counting money or taking public transportation.
About 28 percent of working-age adults with intellectual disabilities have never held a job. Even those who do manage to find jobs often end up working only part time and get lower pay than workers without disabilities, the study found. On the positive side, 62 percent of disabled people who work in a competitive setting have been there three years or more, showing they can work and stay with it.
"A lot of the problem has to do with low expectations," said Lynnae Ruttledge, a member of the National Council on Disability, an independent federal agency that advises the government on disability policy. "Schoolteachers don't have high expectations, and parents tend to be very protective of their children."
But attitudes are changing, she said. There are now more programs to help disabled children to gain work experience while still in school, making it easier to find a job. Many intellectually disabled people work in fast food, and retail chains such as Walgreens, Best Buy and Safeway that have stepped up to hire them.

Sunday, February 16, 2014

Utah student with Down syndrome wrestles at state tournament

by Carly Figueroa from Salt Lake City Fox 13 News:

TROPIC, Utah — When state championships are on the line, it’s hard to focus on other priorities.
But a group of Utah high school wrestlers made it clear they care about more than winning.
A boy with Down syndrome named Payton wrestled in a match that mattered as much as any championship final. It’s a feeling many high school wrestlers never get the chance to experience, winning a match at the state tournament.
Even the ref had tears in his eyes as 17-year-old Payton Johnson celebrated his win.
“He has a very special spirit of innocence and love and that touches people’s hearts,” said Payton’s coach, Carlon Johnson.
Payton’s parents said it’s a great atmosphere for their son to be in.
“It’s really awesome,” Payton’s mother, Tracy, said. “It’s really good to see people with disabilities be included, and I’m glad that people are excited about it.”
His teammates call him the backbone of the Bryce Valley wrestling team because he makes practice fun.

Saturday, February 15, 2014

Patti Saylor to be honored nationally for advocacy

by Danielle E. Gaines from The Frederick News-Post: 
Patti Saylor will be honored with the National Down Syndrome Society's Advocate of the Year award at an event in Washington later this month, the group announced Friday.
Saylor, of New Market, advocated for her son Ethan all his life, but took on a new role after his death.Ethan Saylor, 26, died in January 2013 while he was being forcibly removed from a Frederick movie theater by three off-duty sheriff's deputies.
Since Ethan Saylor's death, Patti Saylor and her family have advocated for changes in police training and for better inclusion policies, among other things.
“I'm very honored,” Patti Saylor said Friday about the award. “I think the night will be a little difficult. It will be bittersweet because of the reason.”
In September, Gov. Martin O'Malley created the Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Development Disabilities in response to Saylor's death.
The commission aims to improve first responder training and will recommend statewide training standards.

Friday, February 14, 2014

Video sharing just for Down syndrome community

by Ivano Abbadessa from West Info:
Down TV is a video-sharing website dedicated exclusively to people with Down syndrome. It is fast becoming the main web presence for those with this intellectual disability. The portal, created by the Spanish organisation Invest for Child, shares online videos with people with Down syndrome, as well as their parents, caregivers and professionals. It is available in seven languages: English, Italian, Spanish, Portuguese, Catalan, Castilian Spanish and German. More than 2,000 videos have been uploaded to the site, addressing topics that range from medicine to sports, music, school and professional occupations. In the ‘work’ section it’s possible to see the experiences of people such as Simone, Sandra, Francesco, Alice, Nicola and many other workers with Down. It’s also possible to listen to the testimonies of business managers – from industries including fashion and hospitality – who decided to invest in the quality and professionalism of people with the condition.

Thursday, February 13, 2014

After More Than 50 Years, a Dispute Over Down Syndrome Discovery

by Elizabeth Pain from Science Mag:
It would have been a personal triumph for Marthe Gautier, an 88-year-old pediatric cardiologist and scientist living in Paris. On 31 January, during a meeting in Bordeaux, Gautier was to receive a medal for her role in the discovery of the cause of Down syndrome in the late 1950s. In a speech, she planned to tell an audience of younger French geneticists her story about the discovery—and how she felt the credit she deserved went to a male colleague, Jérôme Lejeune.
But Gautier's talk was canceled just hours in advance, and she received the medal a day later in a small, private ceremony. The French Federation of Human Genetics (FFGH), which organized the meeting, decided to scrap the event after two bailiffs showed up with a court order granting them permission to tape Gautier’s speech. They were sent by the Jérôme Lejeune Foundation, which wanted to have a record of the talk. The foundation, which supports research and care for patients with genetic intellectual disabilities and campaigns against abortion, said it had reason to believe Gautier would "tarnish" the memory of Lejeune, who died in 1994.

Wednesday, February 12, 2014

Mother of child with Down syndrome had taken, rejected help for child abandoned News, Weather
by Gordon Boyd Wave 3 News:
LOUISVILLE, KY (WAVE) - Help was available to a Louisville mother accused of abandoning her 6-year-old daughter with Down's Syndrome. In fact, she and the little girl used the aid, but apparently, the mother stopped once the little girl was too old to attend the infants-and-toddlers program.
The 6-year-old girl, whom Louisville Metro police said was abandoned by her mother days ago, had gotten help from the advocacy group Down's Syndrome of Louisville for the first three years of her life.
"She and her mother had completed our First Steps program," executive director Diana Merzweiler said. "But to get help beyond that, you have to ask for it. The mother did not come back."
"It really makes me angry because I could never imagine leaving my children, especially one with a disability, by herself," the girl's neighbor, Anna Johnson, said Tuesday.
Johnson discovered the girl covered in her own waste when she walked through her neighbor's open door Monday.
"She gave me a big hug and I was like, ‘where's Mommy?'" Johnson said. "I took her upstairs and called 911. It was pretty bad."
"The calls that have come into our office, from our fellow parents," Merzweiler said. "They're saying ‘Oh, what do they need? How can we help?'"

Tuesday, February 11, 2014

Physical Defects Less Likely In Babies Born To Women Over Age 35; Down Sydrome Still Common

Women ages 35 and older give birth to more babies with Down syndrome but fewer with physical defects, new research shows.
Science has long known that women of “advanced maternal age” experience greater risk of bearing a child with a chromosomal abnormality, such as Down syndrome. However, not much has been written on the risk of congenital defects, which may affect the heart, brain, kidney, bones, gastrointestinal tract, and other aspects of the body’s basic composition.
In a new study, investigators at Washington University in St. Louis analyzed obstetric and ultrasound data from more than 76,000 women receiving second trimester ultrasounds as part of their routine neonatal care. Aside from considering the mother’s age, they also looked at the severity of such malformations, categorizing them by organ system, including heart, brain, and kidney.

Monday, February 10, 2014

"Seussical Jr." at Bethlehem middle school showcases students of all kinds

Emma Farman doesn't have any lines in "Seussical Jr.," a musical based on the books of Dr. Seuss being staged this weekend at Bethlehem Middle School.
The eighth-grader's role as a mime is critical, however, as she silently draws other characters into her scene in the second act. Director Lindsay Dashew didn't cut her any slack during auditions, she said. No matter that the 14-year-old has Down syndrome.
"She earned her spot in the cast," Dashew said.
Just like everyone else. Just like Emma and her family like it.
Emma's onstage role in her school play may seem striking to an outsider. But at Bethlehem Middle School it's natural, parents of special needs children said before Saturday's matinee. The play was chosen for the number of roles — 65 students have parts — with an eye to getting maximum involvement among all the kids, Dashew said. There are 40-some backstage jobs.

Sunday, February 9, 2014

Raising A Down Syndrome Child: Parenting Tips

by Asha from BoldSky Limitless Living:
What should I do next? This is the common question that all parents face when their babies get diagnosed with Down syndrome. Parenting a child with Down syndrome is a bit difficult than what we imagine. Down syndrome is a chromosomal condition that results in an amalgamation of birth abnormalities. You have to manage various physical and mental problems while parenting a child with Down syndrome.
For some parents, a routine ultrasound scanning may suggest that you have to expect a baby with Down syndrome. But, for some others, everything will come as a bundle of surprise and shock along with the baby. Whatever it is, face the situation with confidence and hope. Parenting a child with Down syndrome is no more a difficult task with the advance in medical science. Toddlers are at the right age to get trained to acquire many skills that will help them live an almost normal life. Consider them as normal children who need a little more care and support from the parents.
Since the responsibility to implement some parenting tips for Down syndrome is completely on you, your task will become a little thornier. Here, we may discuss some easy and effective parenting tips for Down syndrome.
Raising A Down Syndrome Child: Parenting Tips

Saturday, February 8, 2014

Parents with developmentally disabled children fight new regulations

by Anna Meiler from News Channel 2 WKTV Utica:

UTICA, N.Y. (WKTV) -- For many parents, their kids grow up, leave home and start their own lives. But, for parents with developmentally disabled children, their job never ends.

New regulations are forcing aging moms and dads to ask a painful question. Patricia Vilello wonders what will happen to her 38-year-old son with Down Syndrome if she isn't there to care for him.

"As a parent it causes a lot of sleepless nights," said Vilello.

Tommy used to be on a residential placement list through the ARC, but the state created a priority list six months ago that overrides it, which means Tommy could wait longer for a group home.

"The state does not want to open any more certified group homes. They're telling the parents to be creative, have your family and friends involved with taking care of them after we're gone. It's a 24/7 job. People aren't going to turn their lives upside down," said Villelo.

Cuts are also threatening structural workshops that Tommy attends three days a week at the ARC.

"It gives him a job, a place to go every day, mingle with peers, earn some money of his own. Everyone needs that to feel worthy," said Villelo.

Friday, February 7, 2014

Support and Help Promote the ABLE Act Petition through NDSS Board Member Sara Wolff

As many of you know, the ABLE Act momentum continues to build - we now have 326 cosponsors in the House and 62 cosponsors in the Senate. Thank you again for all your support - we are going to get this bill passed this year!

Our NDSS Board Member and self-advocate, Sara Wolff, launched her own petition to call on Congress to pass the ABLE Act this year. Please visit the following link and sign Sara's petition:

Please also take a few moments and share the petition with your colleagues and friends on Facebook and Twitter.

Here's a sample tweet: "Help @NDSS & (INSERT YOUR ORG) get Congress to #PasstheABLEAct Sign the @Change petition by @NDSS board Member Sara Wolff"

Thank you again!

Ginny Sessions
Manager, Grassroots and Development Programming
National Down Syndrome Society

Click the link below to log in and make your call:

Thursday, February 6, 2014

Planning a Future For a Child with Down Syndrome

Friends and family of children with Down Syndrome often find social networks like Facebook to be a wonderful forum in which to share information, interesting experiences with their children and, ultimately, to express their doubts and sometimes, even their insecurities about a myriad of issues. Recently, when viewing one such page, we came across an interesting question posed by the mom of a toddler with Down Syndrome called Ryder. While Ryder’s mother had already set up savings account for the future University and car expenses of her older children, she wondered how to plan financially for Ryder’s future. She said that she was unsure why she had not yet started a savings fund/established a special needs trust for him, and asked advice from followers of her page as to what steps they had taken – the answers were as swift as they were helpful.

Wednesday, February 5, 2014

Tips on Applying for Disability Benefits for a Child with Down Syndrome

Down syndrome and mosaic Down syndrome can qualify your child medically to receive disability benefits through the Social Security Administration’s (SSA’s) Supplemental Security Income (SSI) program.
 Tip #1: Understand the SSI program
It is important to understand that medically qualifying is only part of the eligibility determination process. There are also financial considerations the SSA reviews when making a decision on your child’s eligibility for SSI. This is because SSI is a need-based program for which applicants must have very limited income and other financial resources to pay for their everyday needs.
When deciding if children qualify for SSI, the SSA looks at the financial resources of the child, including sources like child support. They also factor in a portion of the income of the child’s parents as well as other sources of financial resources the parents may have. You can learn more about the financial rules for SSI here:

 Tip #2: Understand how your child can medically qualify for benefits 
The SSA has set procedures for reviewing the medical records of applicants to determine if they are medically eligible for benefits. Your child’s records will be reviewed in relation to listings in the Blue Book, which is a manual of disabling conditions and the medical evidence needed to prove disability.
For Down syndrome, the Blue Book listing appears in Section 110.06. This listing requires one of the following:

Tuesday, February 4, 2014

5/7 Be Beautiful Be Yourself Global Down Syndrome Foundation DC Gala

Save the Date for 2014 Be Beautiful Be Yourself Global Down Syndrome Foundation Gala in Washington DC
Be Beautiful Be Yourself
Global Down Syndrome Foundation DC Gala
Funding groundbreaking Alzheimer's disease & Down syndrome research
at the Linda Crnic Institute for Down Syndrome

Renaissance Mayflower Hotel
1127 Connecticut Ave NW, Washington, DC 20036

Wednesday, May 7, 2014
6:00 PM – Cocktail Reception
7:15 PM – Dinner, Fashion Show, Live Musical Performance


Global Down Syndrome Foundation Quincy Jones Exceptional Advocacy Award Recipient

The Honorable Eleanor Holmes Norton
The Honorable
Eleanor Holmes Norton

Congressional Down Syndrome Caucus Co-Chair

12-term congresswoman representing District of

Ranking Member of the House Subcommittee on
Highways and Transit

Member of Committee on Oversight and Government Reform and the Committee on Transportation and Infrastructure

First woman to chair U.S. Equal Employment
Opportunity Commission

Global Down Syndrome Foundation Ambassador

Featuring Global Down Syndrome Ambassador Katherine Felicia Norton
2014 Ambassador Katherine Felicia Norton and inaugural Ambassador Alex Sessions

Live musical performance to be announced soon!

Honorary Host Committee*
The Honorable John Barrow
The Honorable Joe Barton
The Honorable Michael F. Bennet
The Honorable Roy Blunt
The Honorable Sherrod Brown
The Honorable Michael C Burgess, M.D.
The Honorable Richard Burr
The Honorable Dave Camp
The Honorable Andre Carson
The Honorable Robert P. Casey Jr.
The Honorable Howard Coble
The Honorable Thad Cochran
The Honorable Mike Coffman
The Honorable Chris Collins
The Honorable Gerald Connolly
The Honorable Ander Crenshaw
The Honorable Charles Dent
The Honorable Diana DeGette
The Honorable Lloyd Doggett
The Honorable Michael Enzi
The Honorable Eni Faleomavaega
The Honorable Chaka Fattah
The Honorable Jeff Fortenberry
The Honorable Cory Gardner
The Honorable Bob Goodlatte
The Honorable Sam Graves
The Honorable Tim Griffin
The Honorable Tom Harkin
The Honorable Jeb Hensarling
The Honorable Michael Honda
The Honorable Steny Hoyer

The Honorable Johnny Isakson
The Honorable Lynn Jenkins
The Honorable Ron Kind
The Honorable Doug Lamborn
The Honorable Rick Larsen
The Honorable Tom Latham
The Honorable Blaine Luetkemeyer
The Honorable Carolyn McCarthy
The Honorable Patrick McHenry
The Honorable Michael Michaud
United States Senator Barbara A. Mikulski
The Honorable Jim Moran
The Honorable Richard Neal
The Honorable Ed Perlmutter
The Honorable Jared Polis
The Honorable Dave Reichert
The Honorable Harry Reid, Majority Leader
The Honorable Scott Rigell
The Honorable Loretta Sanchez
The Honorable John Sarbanes
The Honorable Brad Schneider
The Honorable Pete Sessions
The Honorable Albio Sires
The Honorable Adam Smith
The Honorable Lamar Smith
The Honorable Patrick Tiberi
The Honorable Scott Tipton
The Honorable Mark Udall
The Honorable Fred Upton
The Honorable Greg Walden
* - List in formation

To see photos from the 2013 Be Beautiful Be Yourself Global Down Syndrome Foundation Gala in Washington, DC, go to

Model auditions for the Be Beautiful Be Yourself Global Down Syndrome Foundation DC Gala are Thursday, February 27 - Register now

Also be sure to mark your calendars for the Global Down Syndrome Foundation's Be Beautiful Be Yourself Fashion Show in Denver -
Saturday, October 25, 2014

To learn more about sponsorships, contact Global's Development Team at
303-468-6663 or


Monday, February 3, 2014

Aimee lends her Punky voice to hit show

AN Irish television programme about a girl with Down Syndrome is taking the world by storm with 10 countries now set to air the cartoon.
And the star of Punky is Aimee Richardson (31) who lends her voice to the show's main character and who herself has Down Syndrome.
Aimee says she has a connection with her character and feels a bit like Punky herself.

Sunday, February 2, 2014

Documentary describes the events surrounding Ethan Saylor’s death and the actions taken by Gov. O’Malley of Maryland.

by Ed Rhodes from
Ethan Saylor son of Patricia and Ronald, brother to Emma and Adam had a passion for everything good guy.
On January 12th 2013 Ethan and his aide attended a screening of Zero Dark Thirty at the Regal Cinemas in Frederick MD. After the movie was over Ethan was waiting for his aide to pull the car around. Ethan decided he wanted to stay for a second viewing and walked back into the theatre. After Ethan was approached by the theatres management, security was called and asked to remove Ethan from the theatre because he had not bought a ticket for the second show. Three Frederick county sheriffs moonlighting as security guards responded and through their negligent behavior, lack of training and patience Ethan would soon lay dead on the theatre floor.
A grand jury decided the deputies would not be criminally charged. No one thinks they meant to kill Ethan, but what happened can't be changed or fixed. What we can change is how to prevent this from happening again.

Saturday, February 1, 2014

Walker focuses on hiring people with disabilities

by Scott Bauer from The Chippewa Herald:
Nobody can fold a box quite like Patrick Young.
Gov. Scott Walker learned that first hand as Young, who has Down syndrome, led a 2012 tour of Tailored Label Products in Menomonee Falls. Young challenged Walker to put together specialized packaging used by the company _ think of it as a complicated pizza box _ as quickly as he could. As Walker fumbled at the flaps, Young adroitly snapped everything into place in seconds.
Walker said meeting Young helped inspire an initiative he unveiled in his State of the State speech last week. The effort, called "A Better Bottom Line," is aimed at getting more Wisconsin companies to hire people with disabilities including autism, Down syndrome, cerebral palsy, traumatic brain injury and mental illness.
People with disabilities account for about 9 percent of the state's workforce, based on data provided by Disability Rights Wisconsin. But their employment rate is less than one-third that of workers without disabilities, and workers with disabilities on average earn 30 percent less.
Walker has proposed spending $800,000 by mid-2015 to expand an on-the-job training program for workers with disabilities. He hopes to expand the program from seven to 27 companies over the next three years.