Saturday, November 30, 2013

ABLE Act Gets Majority Support

from the Autism Policy Blog by Pitney:

The ABLE Act (HR.647 and S.313) yesterday had majority support in both chambers as the 51st senator became cosponsor (counting prime sponsor Robert Casey (D-PA)). As of this morning, it had 310 in the House (including prime sponsor Ander Crenshaw R-FL)). A number of lawmakers agreed to cosponsor when they met with advocates during last week's Autism Speaks to Washington summit. Autism Speaks provides the full list here.

Many families have been searching for a way to plan for the future of a child with severe disabilities. While they are able to save for the educational needs of their other children through “529” college tuition plans, they find those plans do not fit the needs of their child with severe disabilities, since their children may now, or in adulthood, need the long term services and supports of the Medicaid program and the income assistance of the Supplemental Security Income (SSI) program. Some families have found it too expensive to establish a trust which meets the requirements of the Medicaid and SSI programs, yet they recognize that their loved ones may live for many decades beyond the ability of the parents to supplement the services they receive through Medicaid. Others want to ensure the financial security of family members who have the level of disability required for Medicaid eligibility, but for now, are managing to function without the use of those benefits. Still others want to ensure that their family member can exercise control over the funds in the account without endangering the Medicaid and SSI benefits on which they may rely. The ABLE Act (S.313 / H.R.647) would give individuals with disabilities and their families access to accounts that would allow individual choice and control while protecting eligibility for Medicaid, SSI, and other important federal benefits for people with disabilities.
Congressman Ander Crenshaw (R-FL), chairman of the Financial Services and General Government Appropriations Subcommittee, stated, “Support for tax-free savings accounts for individuals with disabilities stands at its highest level ever - testament to the tireless dedication of those who believe that ALL Americans deserve equality when it comes to financial planning tools. It’s time to pass this legislation and create a brighter future for those in need. ”

Senator Robert Casey (D-PA) stated, “The ABLE Act is commonsense bipartisan legislation that will help make it easier for those families to save for their children’s future care, and we should pass it immediately. Individuals with disabilities and their families face challenges many of us can’t even begin to imagine.

Friday, November 29, 2013

OKC center fined after trying to expel child with Down Syndrome

from KFOR 4 Oklahoma City:
OKLAHOMA CITY -  An agreement has been reached between the Justice Department and a child development center in Oklahoma City after the center discriminated against a child with Down Syndrome.
The Justice Department says Camelot Child Development Center of Oklahoma City and Edmond violated the Americans with Disabilities Act.
Authorities claim the center prohibited a child with Down Syndrome to go on field trips and threatened to expel her because of her developmental delays.
Also, the girl is not fully toilet-trained and requires help with her diaper.
Officials say that while Camelot helps younger children, workers refused to provide that kind of assistance to the girl during field trips.
Authorities say that is a direct violation of the ADA, which prohibits discrimination on the basis of disability in child care centers.
“Children are our most valuable resource and must be afforded equal opportunities to grow, learn, and develop,” said U.S. Attorney Sanford C. Coats.  “The Americans with Disabilities Act ensures that a child with a disability has the same access to those opportunities as a child who is not disabled.”
The Justice Department says Camelot worked closely with them through the investigation to change its policies.
Under the new agreement, Camelot will pay $3,000 to the family and provide one full year of child care services free of charge.
Camelot will also train its staff on the new anti-discrimination policy and will be monitored by the Justice Department for three years.

Thursday, November 28, 2013

Culinary inspiration from chefs with Down Syndrome

by Beatrice Credi from West:
ChefDown is the first web channel that broadcasts cooking programmes presented by chefs with Down’s Syndrome preparing tasty dishes from around the world. Launched in Spain as a collaboration between Eroski and Down España, the web channel has an accessible video menu in which people with intellectual disabilities give step-by-step guides to making various recipes. Armed with aprons, scales and all the tools of the culinary trade, the presenters give tips on how to eat healthily and get a balanced diet – all done in a simple and entertaining style. The initiative has a dual objective: on the one hand it aims to encourage independence and to involve young people to take part in a group activity, seeing as they can then present their own recipes, broadcast them and share them with the ChefDown community. On the other hand, it also seeks to improve the eating habits of people with Down’s Syndrome, a demographic with high rates of obesity and celiac disease. ChefDown even allows users to plan their own weekly menu.

Wednesday, November 27, 2013

Crenshaw calls for support of ABLE Act

by Ripon Advance Reports:
House Financial Services and General Government Appropriations Subcommittee Chairman Rep. Ander Crenshaw (R-Fla.) called on Congress on Wednesday to pass the Achieving a Better Life Experience Act, which would provide people with disabilities access to tax-free savings accounts.
The ABLE Act has 305 cosponsors in the House and 50 cosponsors in the Senate. More than 50 local, state and national groups that advocate for people with disabilities have also supported the measure.
“Support for tax-free savings accounts for individuals with disabilities stands at its highest level ever — testament to the tireless dedication of those who believe that all Americans deserve equality when it comes to financial planning tools,” Crenshaw said. “It’s time to pass this legislation and create a brighter future for those in need.”
The bill is intended to relieve financial stress faced by people with disabilities by allowing tax-free savings accounts to cover certain expenses, including education, housing, medical costs and transportation.
Sen. Richard Burr (R-N.C.) called the ABLE Act a “commonsense piece of legislation.”
“…(The ABLE Act) provides individuals with disabilities and their families with the resources to plan for a sound financial future while continuing to improve the quality of their lives today,” Burr said. “I am pleased to see such overwhelming bipartisan, bicameral support for this important bill and look forward to its consideration in the Senate.”

Tuesday, November 26, 2013

The ABLE Act: Opportunity for Congress to make a difference

by Sara Hart Weir and Steve Beck from the Hill:

There is a single piece of legislation, the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647), before the U.S. Congress that has earned the bipartisan support of at least 312 representatives and 51 senators.

This bill would ease financial strains faced by individuals with disabilities by making tax-free savings accounts available, through the current 529 program, so individuals with disabilities and their families can save to cover qualified expenses such as postsecondary education, housing, transportation, workforce development, and medical expenses not covered by insurance.

Recently, Sens. Bob Casey (D-Pa.) and Richard Burr (R-N.C.) and Reps. Ander Crenshaw (R-Fla.), Chris Van Hollen (D-Md.), Cathy McMorris Rodgers (R-Wash.), and Pete Sessions (R-Texas), the ABLE Act's bipartisan, bicameral Congressional champions, teamed up to call on their Congressional colleagues to pass the ABLE Act before the end of the year.

By enacting the ABLE Act, we aren't asking Congress to create a new program or give us a hand out, we are asking Congress to give the disability community the chance to provide and save for themselves through savings tools that all other Americans have access to today.

Over 100 stakeholder organizations have endorsed the ABLE Act. The bill also earned the backing of lawmakers ideologically ranging from  Sen. Bernie Sanders (I-Vt.) to Sen. Marco Rubio (R-Fla.) in the Senate and Rep. Thomas Massie (R-Ky.) to Rep. John Lewis (D-Ga.) in the House of Representatives.

Monday, November 25, 2013

Local Down Syndrome group raises $200k for research

‘Funding Futures’ Benefitting: Down Syndrome Research and Treatment Foundation Location: Goose Island Brewery, Chicago Date: Oct. 26 Attended: 500+ Raised: $200,000 Websites:,
When her son was around three, Western Springs resident Vicki Van Alphen and her husband Dave learned about the Down Syndrome Research and Treatment Foundation, and she realized, “This is important. They are funding research to go beyond traditional therapies. There’s so much that could be possible for our kids that could affect them in their lifetime.”
That connection led Van Alphen to meet many other families in Western Springs with children with Down syndrome, and they all felt the need to help raise funds to support the work of DSRTF. Thus was born Funding Futures for People with Down syndrome. “It was the spark to help us find each other,” says Van Alphen.
Funding Futures held their second annual fundraising event on Saturday, Oct. 26 at Goose Island Brewery in Chicago.
According to Van Alphen, 500 tickets were sold prior to the event, and they expected to let even more in at the door. Final count of attendees was well over 500 throughout the evening. Goose Island was packed.
The first year, Funding Futures held their event in the smaller back room of Goose Island, but the event turned out to be so successful and popular, that they used the entire space for their second annual event.
Emcee Steve Cortes, analyst for CNBC, welcomed supporters to the event and introduced Mike Sands, Goose Island founder and chief financial officer, who presented Funding Futures and DSRTF with a check for $5000. Margie Doyle, who heads the Funding Futures committee, was introduced and gave a moving and tearful speech about finding people who cared to continue the search for new therapies and treatments for Down syndrome.

Sunday, November 24, 2013

A Family adapts to new challenges of a child with Down Syndrome

by Melissa Constanzer from WJFW NBC 12:

Gleason - We all want perfect, healthy, and happy babies but sometimes things don't go as perfectly as planned. One Gleason woman and her family learned how to accept this.

"The second I looked at the picture, I knew he had Down Syndrome," said Shannon Staskiewicz.

Shannon Staskiewicz couldn't lose that thought when she first saw her new baby boy. "I was depressed, I was angry, I was grieving, you know, I expected to have this perfect little boy. And while he is perfect in his own way, it took a long time to make that connection. When I looked at him, all I saw was Down Syndrome, I didn't see Hunter," says Shannon.

She couldn't prepare for this. So she turned to other mothers online for help.

"I, you know, connected with a number of mom's on face book and they were so helpful. You know, just to say, that's normal, you know, it's normal to be sad, it's normal to be angry, but now you need to accept him for who he is," said Shannon.

But the family couldn't afford for the anger to last long. Hunter needed lots of care and attention.

"About twenty-five to forty percent of all Down Syndrome babies have some form of cardiac malformation," said Dr. Dennis McFadden, Shannon's OB/GYN.

Saturday, November 23, 2013

Angel of mercy cherishes work with disabled

from Chron:
Everyday life can be a struggle for members of the community with physical or developmental disabilities, such as spina bifida or Down syndrome. Aiming to improve the quality of life for these individuals, Benoite Vodounou is a proud member of Forgotten Angels, an organization that offers daily activities and even residential services for the disabled.
In her role at Forgotten Angels, Vodounou maintains communication between the parents and clients and the staff at both the residential and day habilitation centers. Benoite and her husband were experiencing their own hardships when they met Forgotten Angels CEO Renee McGuire and Director Holly McDonald, and an act of kindness then changed their lives.

“My husband and I both were unemployed, and times were very hard for our family when we met Renee and Holly, who are so kind and loving and created a position for me at Forgotten Angels Day Hab in order to help us financially and spiritually,” she said.

In addition to assisting communication between different divisions of Forgotten Angels, Benoite organizes activities for volunteers and accompanies clients on outings. But more than just a job, she sees her position as a higher calling and an opportunity to grow as a person.

“When I first started working at Forgotten Angels, I thought I was working to provide support for my family, but I have quickly learned that God called me here to be blessed beyond my comprehension.”

The day-to-day activities of planning out the monthly day habilitation calendar or hosting birthday parties for clients keep Vodounou busy, but the highlight of her day comes from the people with whom she interacts.

Friday, November 22, 2013

Alzheimer’s Clues Sought Studying Link to Down Syndrome

Research to unravel for the first time the complex genetic mechanisms shared by Alzheimer’s disease and Down syndrome is gaining momentum in studies by Johnson & Johnson and patient advocacy groups.
By age 40, almost everyone with Down syndrome has beta amyloid deposits in their brains reflective of the protein clumps seen in Alzheimer’s in the general population, autopsy and imaging studies show. By age 50, half have dementia.
“In a way, Down syndrome is a model disease for Alzheimer’s,” said Mike Krams, vice-president of quantitative sciences at J&J’s Janssen Pharmaceuticals unit, which will meet Nov. 15 to discuss a three-year pilot study.
Not everyone with Down syndrome shows signs of dementia as they age, even as the amyloid accumulates. Finding out what prevents Alzheimer’s in these patients may provide clues for the general population, Krams said by telephone.
The New Brunswick, New Jersey-based company is developing a drug meant to stop or slow beta amyloid formation by preventing a parent protein from being cut into smaller parts. Because Down syndrome patients have extra amounts of this precursor protein, they may benefit from that drug, Krams said.

Thursday, November 21, 2013

NDSC Film Expert Reviews Thor: The Dark World

from the NDSC:

Chess has recently reviewed Thor: The Dark World for our friends at NDSC.  He is especially excited about this movie. Check out his findings below!

NDSC: How many stars would give Thor: The Dark World out of 5 stars for excellence?
Chess’s answer: 5 stars = Awesome Action movie! 

Wednesday, November 20, 2013

Black Tie Masquerade Ball for Down Syndrome!

by Bri from Noah's Ups and Downs:
I found out online about a benefit for Down syndrome research that was a black tie masquerade ball in Georgetown.  I had to go.  Not only is it an obvious personal cause for me, but I could visit my childhood friend, Heather, and go to a masquerade ball!  What's not to love about that?

The event was sponsored by Research Down Syndrome and a local family who lost their little boy with DS when he was around Noah's age.  It was at a beautiful old, remolded paper manufacturing company called Powerhouse right in Georgetown.

What surprised Heather and I was the demographic of the crowd.  We had expected older, wealthy people and a very formal affair.  Turns out it was a younger, wealthy crowd.  Still very black tie- beautiful dresses, tuxes, wonderful hor d'oeurves, open bars, valet parking, etc.
View from second floor loft to lower level

Second floor loft area
There was an auction of some very cool items that each went for thousands of dollars but unfortunately the crowd who were not bidding would not quiet down.  It was so loud and hard to hear the auctioneer, it was disheartening for me as it made it feel like some where there to see and be seen, not for the purpose of the event.
Live painter whose painting was auctioned
Live band-Heather's favorite!

The best part of the night for me was meeting the people who work at and are in charge of Research Down Syndrome.  Although it was very hard to hear each other because it was so loud, we had some very nice conversations and hope to keep in touch.  They are doing some wonderful and very important research that will hopefully even help Noah in his lifetime!

Tuesday, November 19, 2013

Take an unexpected journey with Up Down Boy

by Jill Harding from the Salisbury Journal:
DESPITE the visions of a seaside clairvoyant, mother-of-six and former school bus driver Sue Shields never dreamed she would become a writer, let alone one whose work is being performed on a London stage.
But Shields’ emotive play Up Down Boy, which tells the story of raising her son Nathan Bessell, who has Down’s syndrome, was so successful after it premiered at Salisbury Playhouse last year that went to the National Theatre, and is now coming back to Salisbury as part of a second nationwide tour.
Up Down Boy emerged from a series of text messages that Shields sent to Heather Williams, who ran the youth drama group Nathan attended.
Her messages, which gave an insight into the trials and joys of bringing up a child with Down’s syndrome, sparked an idea in Williams’ head.
“Sue was witty and quick – the messages might have been about when she was picking Nathan up but they always gave a glimpse of what her life was like and I thought that could work well as a play,” said Williams.
“It had to be something Sue wrote herself as it was her story. But I knew it would appeal to a wider audience and not only people who have a learning disabled child.”

Monday, November 18, 2013

Agnieszka Kolaczynska scoops National Youth Film Festival award

An 11-year-old girl who finished top in Wales in a world spelling championship has now scooped a national film award.
Agnieszka Kolaczynska won the "ones to watch" category at the National Youth Film Festival for
documentaries about her sister who has Down's Syndrome.
Agnieszka, from Llidiartywaen near Llanidloes, has been making films and music videos since the age of eight.
She was presented with her award by Downton Abbey actor Jim Carter at a ceremony in Leicester Square in London.
The National Youth Film Festival celebrates young filmmakers across the UK.
A festival spokesman said Agnieszka's short documentaries called My Little Sister - Who Happens To Have Down's Syndrome had reached unexpected audiences around the world, with the first episode alone receiving more than 200,000 internet hits.
The films are about Agnieszka's little sister Magdalena and they show the pair dancing, singing and playing.
Agnieszka, who won in the 11 to 15 age category, said she loved how film could make people question and think and "take you into another world".
"For me, a self-taught film maker, home educated in the remote Welsh hills, this award has come as a bolt out of the blue," she added.
"It was incredible to see my film on a screen in Leicester Square and I intend for many more of my films to hit the big screen too.
"I love the magic of creating films that move people and make a film a day. It's awesome that the My Little Sister - Who Happens To Have Down's Syndrome series that I started when I was eight, will be seen by more people too."

Sunday, November 17, 2013

When expectant moms learn more about prenatal testing, what do they choose?

by Mark Leach from Down Syndrome Prenatal Testing:
Yesterday’s post shared how the Department of Defense/Veterans Administration guidelines recognize the need for genetic counseling when offering prenatal testing. One of the methods was group counseling, in which the guidelines said participants learned best as compared to individual counseling or decision aids. What do participants choose then, that have learned best through group counseling?
At the Madigan Army Medical Center, genetic counselors conducted a study of over 400 patients. About 75% of the participants received individual counseling and 25% participated in group counseling sessions. Here’s what the counselors found:
  • Before counseling, both groups had about the same level of knowledge about prenatal testing and Down syndrome, meaning they answered questions correctly and incorrectly about the same.
  • As should be expected, both groups reported significant increases in knowledge after counseling, answering a higher percentage of questions correctly.
  • Those who participated in group counseling had a higher percentage of correct answers than those just receiving individual counseling.
  • And, those who received group counseling were less likely to accept prenatal screening.
So, group counseling increased understanding about prenatal testing and Down syndrome, as compared to individual counseling by itself. And, with that improved knowledge, the study’s finding suggest improved patient knowledge reduced the acceptance of prenatal testing.

Saturday, November 16, 2013

Fundraiser to help local teenager buy Diabetic Alert Service Dog Thursday

by Lindsay MacLeod, KSBY News
A Nipomo High School student needs help raising money to buy a Diabetic Alert Service Dog.
Philip Vaughn, 17, has Down Syndrome and Type 1 Diabetes.
His mom says he has a hard time recognizing when his blood sugar level change, so he needs the service dog to help him out.
On Thursday, a fundraiser is being held at the Chili's in Arroyo Grande. The fundraiser runs from 11 a.m. to 10:30 p.m. 15% of the sales will go toward helping Philip get his dog.
Philip's mom says they need to raise $18,000, and so far, they've raised $7,000.
A sixth grade class at Branch Elementary School has also been raising money for Philip.

Friday, November 15, 2013

Operation Santa Claus helps Hong Kong Down Syndrome Association

by Lo Wei from the South China Morning Post:
Little Venus Cheng may not know it, but her parents have faced many challenges since her birth. Venus, now nearly 18 months old, was born with Down's syndrome. She crawls around, plays with toys and gurgles like other young children, but her development is delayed and she needs special help.
"We didn't know much about the condition at first," said mother Rebecca Woo, who found out after the birth that Venus had the syndrome, which affects about one in 600 babies. "We were worried and upset at first. But now it's different - some time has passed and we see that she's healthy."
The family has been receiving assistance from the Down Syndrome Association since Venus was about three months old. In early sessions, Woo and her husband Friend Cheng learned how to massage Venus to strengthen her muscles. She has poor muscle tone, which causes weak motor skills.
As she grew older, she attended sessions at the association's centre to learn various skills. Things that seem simple, like picking up a toy, take a lot of practice for Venus.
Katie Lok Pui-ying, in charge of services for the association, said early intervention was vital for children born with Down's syndrome. The "golden period" for training to help them improve was while they were still babies.

Thursday, November 14, 2013

Help Us Get Senator Nelson as a Cosponsor and Pass the ABLE Act this Year!

ABLE Act Overview:

During the week of November 11th, the National Down Syndrome Society (NDSS) will team up with Florida Down syndrome Advocates to urge Senator Bill Nelson to join his fellow Florida Senator and ALL Florida Representatives as a cosponsor of the Achieving a Better Life Experience (ABLE) Act (S. 313/HR. 647).This important legislation would utilize the 529 college education saving account program to establish a savings tool for individuals with disabilities.

The bill currently has 283 cosponsors in the House and 47 cosponsors in the Senate. This bipartisan, bicameral legislation is being led by Reps. Van Hollen, Crenshaw, Sessions, and McMorris Rodgers and Sens. Casey and Burr.

The ABLE Act will utilize the 529 college education saving account program, and give individuals with disabilities and their families the ability to save for the future just like every other American family. The ABLE Act  will help people with disabilities live full, productive lives in their communities without losing benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources.

How to Advocate:

1)      Issue an ABLE Act action alert to your grassroots
a.       Email/Letter template
b.      Call-in template

2)      Utilize Social Media to advocate for the ABLE Act
a.       Twitter sample tweets

For more information or questions, feel free to contact NDSS VP of Advocacy & Affiliate Relations Sara Weir at or 202-465-3222.

Wednesday, November 13, 2013

Actor with special needs from W. Stockbridge overcomes challenges, achieves goals

  by Jenn Smith from the Berkshire Eagle: NORTH ADAMS -- He's not Santa Claus, but a young man named Peter Johnson brought a whole lot of hope and holiday cheer to a movie theater full of fans over the weekend. Johnson, now 26, of Scituate and West Stockbridge, has a leading role in a 2007 holiday family film called "The Child King." The film was part of a special presentation organized by United Cerebral Palsy of Berkshire County and the North Adams Movieplex, which donated the use of the theater and some popcorn for the nearly 70 people who attended the screening. "The Child King" chronicles the story of an older brother, Jeremy West (Johnson), who is determined to prove the existence of Santa Claus to his younger brother Jarrett (Will Kellem), resulting in a memorable road trip full of adventure, personal discovery and a little holiday magic. What makes this film -- produced by Massachusetts-based brothers Jeff and Frank Kerr -- unique, is that it's one of the few feature-length films out there to feature an actor and leading character with Down syndrome.
Down syndrome is a genetic condition through which a baby inherits an extra chromosome. The extra genetic material can cause both physical and mental developmental delays in a person, varying their levels of ability. Approximately one in every 691 babies in the United States is born with Down syndrome, according to the National Down Syndrome Society. "My focus for this film and for being here today is just strictly for the special needs community and to spread awareness," Johnson told The Eagle after the screening. Johnson was nearly 17 at the time when the Kerrs began making the film -- a whole other story in itself ( "When I first met Peter, I had my doubts," director Frank Kerr told The Boston Globe in a 2007 article about the film. "A lead actor with Down syndrome? Could he carry off his lines? Hit his marks? Wait for cues? Interact with other actors? Those aren't the easiest things to do and still be comfortable in front of a camera. But Peter loosened up as we went along and did a wonderful job." Johnson told The Eagle that "the thing about people with special needs is not about the abilities they don't have but about the dedication they do have and people's feelings inside." He said both in the film and in real life, some people look at people with Down syndrome and think or call a person with Down syndrome "stupid." "I don't like the word and I think it's unacceptable to say to a special needs person," Johnson said. In the film, his character Jeremy also successfully stands up to bullies who judge his intelligence. He says at times, Peter Johnson said he feels "trapped in my skin" but continues to set and work hard to achieve life goals. Johnson gives his parents, Jane and Charlie Johnson a lot of credit for their support -- "They've been with me for so long even when I wake up at night going through all the things that I feel." The Johnson family also gives credit to a lot of support from community-based programs, like Friendship Home Inc. in Norwell, where Peter goes to a day program to learn and practice job and life skills. Peter has been working out at and working for the health and well-being center and his local YMCA since 2002. He also works as a host at an Irish pub in Norwell called The Tinker's Son. "Job coaching and having an intermediary between an employer and family is helpful," Charlie Johnson said. After Saturday's film screening, Peter went to the UCP offices in North Adams for a reception luncheon, where he was greeted with applause and hugs from fans, like Louisa Millonzi of Riverbrook in Stockbridge. Erin Cote, assistant director of individual and family support services for UCP-Berkshire, said this was the first inclusive film screening event of its kind the organization has hosted. "I think a lot of the guys here especially are excited to see a guy with disabilities playing a guy with disabilities in a movie. They don't get to see someone like that often," she said. Peter Johnson said his advice to other people with special needs working toward life goals is to "do what your heart wants to do and go with your stomach. There are more possibilities out there. The more people talk to [people with special needs] the more they will see this." To reach Jenn Smith:,
or (413) 496-6239.
On Twitter: @JennSmith_Ink More information To learn more about UCP of the Berkshires, visit or call (413) 442-1562. To learn more about "The Child King" film and The Child King Foundation, the Massachusetts nonprofit that gives grants to organizations supporting people with disabilities, visit

Tuesday, November 12, 2013

Adults with disabilities get inadequate health care, Canadian study finds

By Andrea Gordon from the Star:
Adults with autism, Down syndrome and other developmental disabilities face more physical and mental health problems but are less likely to get the care they need than other adults, a new Ontario study has found.
The research, released Tuesday, is the largest examination of its kind and paints a worrisome picture of how this “silent minority” — often unable to communicate their distress — is served by the health care system.
“It’s hard for them to make their needs known,” said Yona Lonsky, lead author of the Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario.
And, what’s more, the care these adults receive often does not meet health-care guidelines for this cohort, she added.
While a higher proportion of these adults live in poorer neighbourhoods and are diagnosed with chronic diseases, they face larger gaps in services.
They more often end up in emergency departments in crisis. But they are less likely to visit their family physicians for regular checkups or standard preventive care such as cancer screening.
Almost half are prescribed multiple drugs, most commonly for mental health and behavioural problems, the study found. Twenty-two per cent take five medications simultaneously, and some in potentially dangerous combinations.
And while a team approach is recommended to co-ordinate care between physicians, nurses, occupational therapists, psychologists, social workers and other care providers, only one in five adults with a developmental disability is being treated by this type of health team.
The study was conducted by the Institute for Clinical Evaluative Sciences (ICES) and the Centre for Addiction and Mental Health (CAMH). A summary was released Tuesday and the full report will be available in December.
The findings didn’t come as a surprise to Roger Oxenham of Toronto, whose daughter Rachel, 26, has a developmental disability and bipolar disorder.
Rachel went through a crisis as she entered her 20s, a period when many young adults like her are most at risk of falling through the cracks as they “age out” of pediatric care and children’s services.
In one year, she ended up in emergency rooms around the city 18 times, arriving in distress and fearing she would harm herself. It wasn’t uncommon for Rachel to wait 12 to 14 hours, alone and upset, before being admitted to the psychiatric ward, where she would be medicated and released, only to start the cycle again.
While her own physician and emergency staff provided good care, says Oxenham, there was no communication between caregivers. The strategy seemed to be “patch her up and send her out until the next time.”
He says the system needs to connect hospitals, parents, family doctors and other therapists who work with patients and understand their complex needs.
That approach is critical, adds Lonsky, a scientist clinician with CAMH and director of the Health Care Access Research and Developmental Disabilities (H-CARDD) program. She says initiatives are also needed to empower patients, parents and caregivers advocate for themselves.
The Atlas study is the first to track health needs and treatment for this often overlooked group — estimated at 66,000 adults under 65 in Ontario. Too often they become invisible after moving from the care of pediatricians and parents into adulthood, particularly the majority who live with mild disabilities. As a result their health problems and needs are overlooked.
Researchers had to mine data from social services to get an accurate picture of the numbers of adults with developmental disabilities and their health care needs.

Monday, November 11, 2013

You can help make a huge difference to children's lives

Being involved with a charity is incredibly hard work and you do feel very responsible, but at the same time it is an extremely rewarding experience.
When my daughter Rachel was born eight years ago, she was diagnosed with Down's syndrome shortly after her birth.
There were 15 children with Down's born that year in Hull – more than usual.
Over the course of the first year or so, I would come into contact with a few parents with children with the condition. I met Lisa Bentley when both our children had turned one.
Lisa was a teacher whose little boy Isaac had Down's syndrome. Lisa wanted to set up a "singing and signing" group for children with the condition.
We both felt there was nothing for our children or for parents locally – and this is how Downright Special was born.
It takes up a lot of our time running a charity, but we know it is making a huge difference to our children's lives.
Our main focus is on education. Many of our school-age children attend a mainstream school, but every two weeks they come to our charity headquarters in Bodmin Road, Hull, with their teaching assistants, and have very focused lessons in small groups.
Our babies and pre-school children come every week for play and education sessions, where parents can learn and share advice and information.
We have regular visits from a speech and language therapist and from the physiotherapy service, both vital for helping the children's development.
We run workshops for parents and teaching staff to equip them with the skills needed to ensure our children reach their potential and are fully included in the family, in schools and in the community.
All of this takes its toll, of course, and I took a two- year career break so I could give Downright Special the attention it deserves.
We currently have two vacancies for trustees, and as last week was National Trustees Week, this seems like a great time to shout about the work we do, and see if anybody would like to get involved, either to fundraise for us, or work with us as a trustee.
I can't promise you that it will be easy, but for job satisfaction, it's unbeatable.
For more details, visit or call 01482 420160.

Sunday, November 10, 2013

Down syndrome advocates urge U.S. Supreme Court to address prenatal discrimination

jlf logo small
Saving downs test 2

Saving Downs is one of three Down syndrome advocacy groups that have filed a legal brief with the U.S. Supreme Court urging them to address inequalities that discriminate against those prenatally diagnosed with Down syndrome.

The brief urges that the principle of support to the parents be aligned with the Prenatally and Postnatally Diagnosed Conditions Awareness Act and the American Disabilities Act.

Supporting notes:
For more information contact the relevant Down syndrome advocacies:
Jerome Lejeune Foundation USA:
Saving Downs:
The International Down Syndrome Coalition:

The full legal brief can be read at:

Saturday, November 9, 2013

Man With Down Syndrome Celebrates 25 Years on Job

by Jerry Askin from WTVC News Channel 9:

A Dalton man was honored Thursday for 25-years of service on his job.
The 44-year-old has Down syndrome and had no idea he would be surprised for this milestone.

We were there as friends, family, and co-workers honored Andy Jackson.

Andy is the head bagger at the Dalton Kroger on Cleveland Highway. People who know and work with Andy tell us he's truly an angel to his customers and everyone he encounters.

"He's very friendly with our customers, and if he can make it 25-years in this kind of business is amazing to all of us," says Andy's co-worker Tonya Moses.

"It makes him feel good when people appreciate him, and I think most of the people have done so," says Edmond Jackson, Andy's father.

We asked Andy what's been the highlight of his 25-years. He said, "Bagging and talking with customers."

Andy Jackson tells us he has no plans to retire and wants to work at his  Kroger store for at least 30-more years.

Friday, November 8, 2013

Frankfort boy saves fellow student

by Amber Hardwick from WLFI 18:
FRANKFORT, Ind. (WLFI) - A six-year-old boy with Down syndrome is the newest hero in Frankfort for saving a student from choking.
Mason Hedges is a first grade student with Down syndrome at Suncrest Elementary School. On Wednesday, Mason became a young hero in the community.
Suncrest Elementary School Principal, Suzy Kontos, said it happened at lunch when Mason saw another student choking.
"In first grade lunch, Mason was sitting across the table from his friend. Evidently, he noticed that the little boy across from him was not breathing and was turning red," said Kontos.
Kontos said Mason was walking to his Para Professional, JD Kinslow, when the custodian spotted him. She said the custodian knew Mason was trying to get help. The custodian was able to help the choking student.
Mason's teacher, Beth Lamar, said she was proud of Mason when she heard the story.
“I really wasn't surprised because he's a very caring child and he's a part of our community of our classroom," said Lamar.
On Thursday, Mason was awarded a pin and a medal for alerting an adult in a potentially dangerous situation. His actions helped save his friend's life.
Mason's parents said they were touched when they found out what Mason had done.
"I was happy. I was really proud of him, " said Mason's father, Matt Hedges.
"Happy. Proud. Joy, " said Mason's mother, Amanda Hedges.
Mason will forever be a hero to Suncrest Elementary School and the Frankfort Community.
"This just solidifies everything we believe about him. That he is a wonderful kid and a great friend to his classmates," said Kontos.

Thursday, November 7, 2013

'Sounds Like Fun' by Barbara Milne - a great CD for speech

Many have asked for recommendations on aids for speech. One item we found particularly helpful was the CD "Sounds Like Fun" by Barbara Milne. We listened to it mostly in the car and it was an instant hit. It covers many topics like alphabet sounds, manners, calendar and much more. The top song is probably "Letter Sounds (apple apple aaa)" song which is a great way to get your child to start making the sounds of the alphabet.

Wednesday, November 6, 2013

Glee Star Lauren Potter Slams Sephora's "Celebutard" Lipstick

from by Ryan Gajewski:
Sometimes, we think that our society is making significant strides to not encourage offensive terms — and at other times, we're not so sure. So we're proud of one Glee star for calling out a major company for its needlessly offensive product name.
Glee star Lauren Potter (Becky), who has Down syndrome, took to Twitter this week to call out Sephora cosmetics company for releasing a shade of lipstick which is inexplicably called "Celebutard." Yeah, we don't know what the company was thinking either. The shade is described on the company's site as "nude peach beige."
The lipstick shade is part of Kat Von D's lipstick line called Painted Love. Several of the lipsticks in the line are named for colors that are definitely intended to be incendiary, including "Underage Red," "Lolita," and "Backstage Bambi."
On November 5, Lauren tweeted:
Lauren has been an outspoken critic of the word "retard," which "Celebutard" is clearly referencing. Lauren is also a spokesperson for's "Disable Bullying" campaign. So it makes sense that she would voice her issue with this color name.

Tuesday, November 5, 2013

Oregon rundown: In San Jose, some people see Ducks' running back Byron Marshall as a star off the field as well

by Jason Quick from the Oregonian:
I wrote about Oregon running back Byron Marshall in today’s Oregonian, which details why his family has nicknamed him “Big” ... but there’s another person in San Jose who happens to think Marshall is bigger than life.
His name is Andrew Watson, and he has been the team manager for Valley Christian High for the past 15 years. He is 30 years old, has Down Syndrome. and is somewhat of a legend around the Valley Christian community.
Watson is so close to the football program, he inspired coach Mike Machado seven years ago to start Camp for the Stars, the first football camp in the nation for kids with Down Syndrome. The camp has since branched to Pittsburgh, PA and draws celebrities such as former 49ers coach Steve Mariucci, former 49ers players Dana Stubblefield, Ronnie Lott and Keena Turner to name a few.
Here is a great video about the camp, which I guarantee will make you smile.
The camp is hosted at Valley Christian, and each summer the campers get to choose a player from the team to be their counselor.
“Every year when it came time for Andrew to pick, there was never a doubt who he was going with,’’ Machado said. “It was B.’’
Said Marshall: “Andrew is such a cool kid. We got close.’’
Marshall doesn’t know how to explain their bond, it’s just something that is there he says, and Machado said it was beyond a manager being infatuated with the school star.

Monday, November 4, 2013

First runner with Down syndrome finishes NYC marathon

Jimmy Jenson ran into the history books at the New York City Marathon Sunday, becoming the first person with Down syndrome to complete the famous race.

Sunday, November 3, 2013

Brooklyn nonprofit charged with negligence in alleged attack on man with Down syndrome: Lawsuit

A nonprofit affiliate of the Brooklyn Diocese failed to protect a 24-year-old developmentally disabled man allegedly attacked under its care — then told outraged family members that he received his injuries by “walking into a door frame,” a bombshell lawsuit claims.
A lawyer for Jorge Cabello said HeartShare Human Services cleaned the man’s clothes after he was apparently pummeled and suffered a smattering of injuries on Sept. 7, 2012, but couldn’t tell family members how he had sustained a black eye and a facial fracture.
When Cabello — who has Down syndrome and has the mental acuity of a 6-year-old — returned home from the HeartShare program on MacDonough St. that Friday “he was crying hysterically, he had a black eye and red markings on the right side of his face,” the lawsuit states.

Saturday, November 2, 2013

Arnold Schwarzenegger makes a guy with Down syndrome feel proud

from YouTube: Arnold Schwarzenegger makes a guy with Down syndrome feel proud
This is resurfacing after a year ago. It's a 1 minute video of an interaction between a man with Down syndrome and Arnold Schwarzenegger. Despite being infront of the camera's it is a sincere interaction that is heartwarming.

Friday, November 1, 2013

Glasgow wins bid to host 2018 World Down Syndrome Congress

Glasgow has been chosen to host the World Down Syndrome Congress in 2018. The event is expected to boost the city’s economy by up to £1.6m. It will be the first time the Congress will have taken place in Scotland.
Down’s Syndrome Scotland submitted its bid for the Congress in partnership with Glasgow City Marketing Bureau (GCMB), the Scottish Council for Voluntary Organisations (SCVO), VisitScotland and the Scottish Exhibition and Conference Centre (SECC) in August.
The city will welcome 1,200 delegates to the four-day conference, which will run 1-4 August, 2018 at the SECC.
Glasgow’s bid beat off strong competition from cities in four other countries.
Held every three years, the Congress brings together people with Down’s syndrome, their parents and carers, professionals, practitioners, researchers and organisations. It is expected  to generate around 6,000 hotel room nights in Glasgow.
Andrew Boys, Director of Down Syndrome International (DSi), said: “Following lengthy scrutiny and discussion, DSi is delighted to announce that Down’s Syndrome Scotland has been successful and we look forward to working with them to hold a Congress which will help to fulfil our mission to improve quality of life for people with Down’s syndrome worldwide and promote their inherent right to be accepted and included as valued and equal members of their communities.”