Thursday, February 28, 2013

Oscar winner Jennifer Lawrence and Andy Strunk, who has Down Syndrome, have been friends since childhood.

Jennifer Lawrence and Andy Strunk, who has Down Syndrome, have been friends since childhood. "We are like best friends," says Andy. "She's kind .... I think she has spirit." Andy collects every scrap of Jennifer memorabilia - and his bedroom decor attests to that. His cellphone also has the Oscar-nominated star in its speed-dial -- and she happily answers his calls! The two friends are former Kammerer Middle School classmates - and Indian Hills neighbor. His favorite photo is of a Lawrence and himself sitting by the pool in the backyard of the east Louisville home where she grew up -- from her "pre-star" days. For the Oscars, Andy is going to wear his tux. "He wants to dress up ... because Jennifer is going to be dressed up and he wants to celebrate," said his mother, Pollyanna Strunk. "He'll have his shirt on and his tie and all that ... just like he was there." And if she wins: "I will say 'Yay! Yay! Yay!' " Strunk said, and "will have to be calmed down," says Andy. Andy says he knows Lawrence will be "very busy" on Oscar night, so he'll send a text to her mother and Oscar date, Karen Lawrence, that says "congratulations" and "see you later." Everyone Matters loves Jennifer Lawrence as an actress -- and we also celebrate her as a human being. Thanks to shared abilities for sharing! and
Join our community where Everyone

Wednesday, February 27, 2013

I Am Not Invisible

Hi - my name is Erin Corrado and I'm a Toronto filmmaker.  My first short film called 2054 played at the Planet in Focus film festival in Toronto in 2007.  After making shorts for years, I have now completed my first feature documentary which is what I'd like to talk to you about today.  

It's called I Am Not Invisible and you can check out the official site here:

I Am Not Invisible is about a 20-year-old Toronto woman named Nicole Flynn.  Nicole is an athlete with over 50 gold medals in synchronized swimming, a wildlife photographer, and public speaker.  And she also happens to have Down Syndrome.  This 68 minute documentary is a look at her life and accomplishments.  

We've just launched a crowdfunding campaign, and it would be great if you would consider writing a post about the film, sharing it with your followers, or even checking out the donation page yourself.

I am open to doing interviews about the film as well.  

Thanks in advanced for taking time out of your busy schedule to check out the film, and feel free to let me know if there's any questions you may have.  

Have a great day!  



Tuesday, February 26, 2013

2013 Youth Transitions Fellowship (YTF)

2013 Youth Transitions Fellowship (YTF)
PLEASE NOTE: All applications must be received by 5:00 PM EST on Friday, March 22, 2013.
The HSC Foundation, in partnership with the American Association of People with Disabilities (AAPD), is now accepting applications for a paid fellowship position with the organizations’ disability youth transition and collaboration work. This fellowship is ideal for a person with a disability, who has an interest in youth career transitions and employment solutions. The fellowship starts June, 2013, and continues for 12 months. Under the supervision of AAPD’s Programs’ Manager, the Youth Transitions Fellow (YTF) will gain exposure to youth programs, serving people with disabilities and will have the opportunity to facilitate collaboration among internship, fellowship, and apprenticeship programs; based in the greater Washington, DC area.

Preferred Skills and Qualifications:
Ability to facilitate collaboration among large groups
Ability to work with people in all levels of an organization, including young people with a variety of disabilities
Strong oral communication skills and strong organizational skills
Creative and innovative personality
Familiarity with technology and social networking tools
Strong interest in youth transition for people with disabilities and organizing.

Anyone who self-identifies as an individual with any type of disability is invited to apply. You will not be required to disclose your specific disability; however, your application for this program will signify that you consider yourself a person with a disability. PLEASE NOTE: This fellowship is specifically for people with disabilities.

Please Provide the Following:
Please attach your resume in Microsoft Word format.
Please provide the contact information for four (4) references who are familiar with your qualifications, relevant to this fellowship and your personal character.
Please attach, in Microsoft Word format, two (2) letters of recommendation from two (2) of the above-mentioned references. PLEASE NOTE: Additional references and/or materials will not be considered.

What Happens Next:
Completed applications received by AAPD before 5:00 PM EST, Friday, March 22, 2013 will be collected and reviewed by our team.
Semi-Finalists will be contacted for short, preliminary telephone interviews.
Finalists will be contacted for formal telephone interviews.
The fellow will be selected and notified by May 2013.

2013 Youth Transitions Fellowship (YTF)
PLEASE NOTE: All applications must be received by 5:00 PM EST on Friday, March 22, 2013.
The fellow must be able to begin the first week of June 2013.

The HSC Foundation’s National Youth Transitions Center
The HSC Foundation’s National Youth Transitions Center is a collaborative learning community to benefit youth with disabilities and returning wounded veterans. The National Youth Transitions Center, developed by The HSC Foundation, will bring together the resources of multiple organizations to provide much needed transitions related services, research, public policy, best practices, pilot projects, and evaluation so that youth with disabilities can achieve their greatest level of independence. The Center will create a forum to enhance the ability of young people and veterans with disabilities to enter and reenter the workforce, participate in and contribute to community life, and become productive members of society.
The American Association of People with Disabilities
The American Association of People with Disabilities is the nation's largest disability rights organization. We promote equal opportunity, economic power, independent living, and political participation for people with disabilities. Our members, including people with disabilities and our family, friends, and supporters, represent a powerful force for change.
Applications must be received by
5:00 PM (Eastern Standard Time) on or before Friday, March 22, 2013
Via Email:

Monday, February 25, 2013

UMass scientist gets $1M grant for Down syndrome research

by Lisa Eckelbecker from

A University of Massachusetts Medical School scientist has won a $1 million grant for research into Down syndrome.

Jeanne B. Lawrence, professor of cell and developmental biology, was one of three researchers nationally to receive a grant from the John Merck Fund for efforts to translate research into treatments for people with developmental disabilities, the fund reported today.

Based in Boston, the fund holds $75 million in assets and aims to spend all its money over the next nine years on work in developmental disabilities, clean energy, environmental health and the development of a New England regional food system.

The UMass project was one of 100 proposals seeking support from the John Merck Fund.
Down syndrome is a genetic disorder. Genes, the code for life, sit on chromosomes in the body's cells. Generally, people carry 23 pairs of chromosomes. In Down syndrome, individuals carry three copies of chromosome 21 instead of two.
The John Merck Fund said the UMass project will pursue research based on deactivating one of the three copies of chromosome 21.

Sunday, February 24, 2013

parents of woman with down syndrome, 21, cannot have her sterilized, rules judge

by Daniel Miller from the Daily Mail (UK):
The parents of an 'affectionate' 21-year-old woman with Down's syndrome have been forbidden from having her sterilised despite their concerns she could fall pregnant.In a landmark ruling at the Court of Protection in London, Mr Justice Cobb concluded that such a procedure would be 'disproportionate'.He said the case engaged important human rights considerations and that  the woman, referred to as K, lacked the capacity to understand and weigh up the options for herself. The parents feared their daughter, who does not have a boyfriend and had expressed no interest in having one, could easily be taken advantage of. But Mr Justice Cobb said there were less restrictive methods of 'achieving the purpose of contraception' which should be tried first.
He added it was in the woman's best interests that he should 'bring as much clarity to medical treatment issues' as he could.
He wrote in a statement: 'The issue which divides the parties is whether I should declare in these proceedings at this stage that it is not in the woman's best interests to be the subject of a sterilisation procedure'.
'No-one can doubt the seriousness and significance of a sterilisation procedure. Further surgery would be required to reverse it, and then only with a moderate prospect of success.'
Mr Justice Cobb said the woman was part of a 'loving' and 'supportive' family and said he had read 'nothing but praise' for her parents.
The parents, referred to in court as Mr and Mrs K, had gone to see a specialist who had originally supported the idea of sterilisation but a second expert had suggested other forms of contraception.
The judge added: 'Although Mr and Mrs K expressed concerns that K is occasionally 'tactile' and 'overfamiliar', that she has begun to be more aware of the 'opposite sex', and is vulnerable to sexual exploitation.
'I note that K is well-supervised at home and at college; there is no evidence she is seeking a sexual relationship.'
The judge said the local authority had begun proceedings in the Court of Protection, which is part of the High Court and analyses issues surrounding the care and treatment of sick and vulnerable people.
He said he had made a declaration under the provisions of mental capacity legislation after the woman's parents disagreed with a local authority - and medics - about the best way 'to achieve contraception'.
He added: 'I have sought to achieve the right balance between protection and empowerment.
'It is my judgment that sterilisation would be a disproportionate (and not the least restrictive step) to achieve contraception for the woman in the future.'
The judge said risk management was 'plainly' better than invasive treatment and less restrictive.
Mr Justice Cobb added: 'It is in the woman's best interests that I should make this declaration now; I do not believe that it is in her best interests that this issue should be left unresolved.'
And the judge said the woman's parents had concerns about how pregnancy would affect their daughter.
'Have become increasingly concerned that as K becomes older their ability to control and supervise aspects of her life will be reduced,' he added.
'Were she to become pregnant at any time in the future they believe this would have a seriously adverse effect upon her.'

Saturday, February 23, 2013

Stamford teen wins award for film on Down syndrome

from The Stamford Times:
A Stamford senior has won a prestigious award for a documentary film she created about the impact of Down syndrome in people’s lives.
Erin Manning, a senior at the Convent of the Sacred Heart (CSH) in Greenwich, won a Silver Key Award in the film and animation category of the 24th Annual Connecticut Regional Scholastic Arts Awards for her documentary, “Unexpected Gifts.”
The Connecticut Regional Scholastic Art Awards is the largest juried student art exhibition in the state."Erin worked for many months in spring of 2012 to prepare her documentary about the families of children who have Down syndrome," said Ellyn Stewart, Erin's teacher in the broadcast journalism program at CSH. "It is a testament to Erin’s strong spirit and compassion that the mothers and fathers in these families were incredibly honest and open with her about the ways that having a child with Down syndrome profoundly changed their lives."Erin interviewed families in Stamford and throughout Fairfield County for her documentary.She said that the documentary had a more lasting impact on her life than she initially anticipated.“I didn’t expect this topic to have such an impact in my own life,” she said. “I wasn’t aware of this community before producing this piece, but now I’m continuing to research this topic. Most recently, I chose Down syndrome as the topic for my Senior Seminar final paper.“So far,” she said, “my exposure to this topic has been on a local, personal level; however, through this paper, I will research and learn about the impact that Down syndrome has on the greater community.”Erin has been a member of CSH’s broadcast journalism program for four years, serving in various roles.She is currently executive producer of “Today from the Heart,” the school’s monthly news show.Last year, she won recognition for an animated short film, “Lightworks,” in the Greenwich Youth Film Festival and Westport Youth Film Festival.Broadcast journalism at CSH is an award-winning program that teaches students hands-on skills that transcend the typical classroom experience.Students learn writing, speaking and presentation skills while operating cutting-edge technology. Students in the class produce a news show, documentaries and other video projects.The students’ work culminates in a film festival each year.Visitors are welcome to view Erin’s documentary at this year’s CSH Film Festival on April 11 at 6 p.m. in the Lennie and John de Csepel Theater at Convent of the Sacred Heart, 1177 King St., Greenwich.

Friday, February 22, 2013

Make your voice heard at the Buddy Walk® on Washington

Check out and share this great video to register for the NDSS Buddy Walk® on Washington. Advocate for people with Down syndrome in Washington, DC and make legislative priorities for people with Down syndrome a priority for members of the United States Congress too!

GiGi's Playhouse event to help give a voice for Down Syndrome

KTIV News 4 Sioux City IA: News, Weather and Sports

by Kristie VerMulm from KITV 4:
A group that provides teaching and support to those with Down Syndrome is raising money to help serve more Siouxlanders.
GiGi's Playhouse was started in Chicago ten years ago by Nancy Gianni, when her daughter was born with Down Syndrome.
Now, there are more than a dozen other centers including one in Sioux City. It opened in 2009 and the numbers have grown steadily since.

GiGi's Playhouse is hosting its "I Have a Voice" gala on Saturday, February 23, at the Marina Inn in South Sioux City, Nebraska. Besides dinner, the event includes both a live and silent auction.
Tickets are still available. They're $75 a piece or a table of eight for $600. They can be purchased by clicking here or by calling (712) 226-PLAY.
If you want more information about GiGi's Playhouse click here.

Thursday, February 21, 2013

Come to Brazil, Sean Penn! Brazilian filmmaker with Down Syndrome makes pitch to Penn

by William K. Wolfrum from dag blog:
Brazilian actor/filmmaker Ariel Goldemberg was born with two things – Down Syndrome and a love of cinema. The cinemaphile has finished his first movie, which combines these things – the critically acclaimed “Colega” – and is now after the finishing touch for his movie – to have his hero Sean Penn watch the movie with him.
The film is about three friends with Down Syndrome who break out of the institution they are living at, and go on an adventure that teaches them about life and that there are no boundaries in their way to live a full one.
Goldemberg made the above video in his pitch to get Penn to come to Brazil to has been viewed more than 1.2 million times, and includes pleas from Brazilian stars Neymar, Juliana Paes, Xuxa, and others. The video has spawned the Twitter hashtag #VEMSEANPENN.
“Colegas” will premiere in Brazil on March 1, and Goldemberg and his growing fan base are hoping against hope that the talented and eclectic Penn will be there. So pass it around, let’s help a young filmmaker meet his biggest inspiration.
Vem Sean Penn!

Wednesday, February 20, 2013

New center helps kids with Down syndrome reach their potential

by Susan Emery from NWITimes and
With toys, books and crayons, it looks like a typical classroom.
Yet the new Chasing Dreams center is more than that. It's designed to support children with Down syndrome, their families and extended families.
The center on Chicago Street in Valparaiso opened earlier this month and is headed by Valparaiso resident Denise Babjak, whose daughter, Lainy, 4, has the condition.
Babjak said she realized the need for support services shortly after her daughter was born.
“The demand was high, but the services weren't here,” she said. “We had to go to Chicago. So we decided to bring it to Valpo.”
Children with Down syndrome face special challenges, including delay in cognitive function, and they often have a higher risk for health issues such as heart defects, Babjak said.
Until as recently as 15 years ago, many children were placed in institutions to help them and their families cope with the various challenges.
But research has shown children with Down syndrome can graduate from high school and college, attain productive jobs and live self-sufficiently, Babjak said.
“There's really hope for these children to live more of an independent life,” she said.
Babjak also believes it's important to correct some misinformation surrounding Down syndrome, such as it occurs mainly in children born to older mothers. She said 80 percent of children with the condition are born to women younger than 35.
The center offers a wide range of free programs and activities for children of all ages to help build their mental, physical and social skills. It's staffed by trained volunteers, including students and retired teachers.
The classroom is divided into sections, including a resource center, library, tutoring and play areas and a stage for drama productions.
In addition to instruction in reading, math, handwriting, sign language and life skills, children enjoy art, dance, photography, exercise classes, movie and game nights and outings such as bowling.
“We just want to incorporate fun into their lives,” Babjak said. “We also want to let parents have hope that everything's going to be OK.”
Children with Down syndrome use the same toys and educational materials as other kids, but they often require more repetition to learn, Babjak said.
“But once they catch on, the sky's the limit,” she said.

Tuesday, February 19, 2013

Death of arrested man with Down syndrome ruled homicide

by Brett Wilkins of Digital Journal:
The death of a mentally disabled Maryland man who was arrested by police after refusing to leave a cinema has officially been ruled a homicide.
The Washington Post reports that Frederick County Sheriff's Cpl. Jennifer Bailey announced on Friday that the state medical examiner's office has concluded that 26-year-old Robert Saylor of New Market died of asphyxia while in police custody on January 12.
Saylor, who had Down syndrome, allegedly refused to leave a movie theater after viewing "Zero Dark Thirty" on a Saturday night. According to ABC 7, Saylor, who was at the theater with a health aide, wanted to see the movie again. When Saylor refused to leave, cinema staff notified three Frederick County deputies working security at the venue.
The Frederick News-Post reports that Saylor allegedly cursed at the deputies, who then physically removed him from his seat and from the theater. Deputies claim Saylor continued to resist them and was subsequently handcuffed.
A law enforcement source familiar with the case told ABC 7 that Saylor went into medical distress when he was forced face-down to the ground. After realizing he was suffering from some sort of medical emergency, the deputies removed the handcuffs from Saylor and had him transported to a nearby hospital, where he was later declared dead.
Patti Saylor, the victim's mother, told ABC 7 last month that her son did not suffer from any pre-existing medical conditions and that she did not understand how he could have died in police custody.
"He just loved unconditionally everybody," she said. "He has never had anyone put their hands on him in his life. He would not have been doing anything threatening to anybody."
The three deputies involved in Saylor's arrest have been identified as: Lt. Scott Jewell, Sgt. Rich Rochford and Deputy First Class James Harris. All three continue to work their normal assignments while an investigation continues.

Monday, February 18, 2013

Local Down Syndrome Organization Receives Visit from NDSC leader

from The Commercial Appeal:

Young adults with Down syndrome, their parents, service providers and DSAM board members were invited to the home of Keith Greenwald to meet NDSC board president Jim Faber.

DSAM communications manager Kelli Polatty (left), WSE principal Tracie Thomas, MCS NE Regional superintendent Kevin McCarthy, MCS executive director of the Division of Exceptional Children Dr. Patricia Toarmina met NDSC board president Jim Faber.
The Down Syndrome Association of Memphis and the Mid-South welcomed a visit from National Down Syndrome Congress board president Jim Faber in late fall of 2012.

The visit coincided with Down Syndrome Awareness Month and provided opportunities for Faber to meet and visit families, schools and businesses that DSAM partners with to support individuals with Down syndrome.

Faber didn't waste any time during his three-day visit. His many stops included dinner with DSAM board and staff, a visit to White Station Elementary School, a luncheon with DSAM's DADS (Dads Appreciating Down Syndrome) group, a visit to Madonna Learning Center, and his presentation to the Memphis Area Home Builders VESTA opening ceremony, of which DSAM was the selected charity.

"Being a part of the VESTA Home Show opening party and cutting the opening ribbon, meeting with dozens of great folks, and giving a presentation about the limitless possibilities of people with Down syndrome … there was so much Southern hospitality," said Faber, as he reported back to the NDSC affiliate director Sue Joe in Atlanta.

Faber added, "The DADS luncheon where I presented the NDSC Road Show and spent a bit of time talking about jobs for adults with Down syndrome — that went well, and it was their best DADS turnout in awhile."

The visit to White Station Elementary was acknowledged with administration, staff and students at the school participating in a Dress Down for Down Syndrome Day, which resulted in $1,300 being raised and donated to DSAM. The school has several students with Down syndrome, and principal Tracie Thomas was eager to show off the high expectations of all her students. Thomas also made sure that MCS Northeast Region superintendent Kevin McCarthy and Dr. Patricia Toarmina, MCS executive director, Division of Exceptional Children, were in attendance, and had the opportunity to meet with Faber.

During Faber's visit to Madonna Learning Center, he met with students as they participated in math lessons and activities, music class and also learned about the BIG program as students were working on cooking lunch. BIG (Building Independence Group) is a young adult (18 and over) component at Madonna and is designed as a transitional program for its participants, enabling them to learn and further develop independent life, employment and social skills.

Another stop during Faber's visit was to the home of Keith Greenwald, 40, who owns his own home and has Down syndrome. He held an open house and invited DSAM families to join him in welcoming Faber to Memphis.

"It was very exciting to show off the Mid-South community and some of the positive opportunities that people with Down syndrome have in our area," said DSAM communications manager Kelli Polatty.

More than 1,500 individuals with Down syndrome live in the Mid-South. DSAM encourages individuals with Down syndrome and their families to attend the annual NDSC Convention by providing scholarships and stipends. This year's NDSC Convention will be in Denver, July 19-21.

For more information, contact DSAM at 901-547-7588 or go online to

Sunday, February 17, 2013

"The Good News"?

by Stephanie A.Sumulong from The Sumulong 3:

A couple of weeks ago on "The Today Show" they did a segment with an expectant couple who decided to try the new MaterniT21 PLUS prenatal test that can detect chromosomal abnormalities about 4 weeks sooner than the traditional CVS or amniocentesis.  Let me be clear:  I am not against prenatal testing.  I didn't personally have any testing done with Owen, but I understand why it is offered and I understand why some people choose to have it.  It is a personal choice and I'm not here to debate that point.
I happened to be watching the show that day and the segment and my reaction have been swirling in my brain since then, mostly because of the way the host and the show's doctor spoke.  I've never been a fan of Matt Lauer; in fact I think he's an arrogant jerk on TV.  But to hear him say to the couple, let's hear the "good news" and then the couple says they are "safe" from Down syndrome frankly pissed me off.  The doctor ended the segment by saying she's glad that they will have a happy, healthy baby and a wonderful life together.

Visit for breaking news, world news, and news about the economy

"Good news"?  "Safe"?  So then having a child with Down syndrome is bad news?  It's evil?  It's wrong?  How does the doctor know that their child will be happy and healthy?   While I heard the couple say they just wanted to be prepared if their child did have a chromosomal abnormality, I wonder what would have happened had the news not been what they expected.  Clearly they are on national television and they knew the results of the testing beforehand.  What if the news wasn't "good" as Matt Lauer stated?  What would the reaction have been then?  Would they have even been on the show?  My guess is probably not.

I'm here to tell that couple that it's OK to have a child with Down syndrome.  It might rock your world when you hear those words and let it sink in, but it's going to be OK.  You will have the joy you expected and then some.  Things might come at a slower pace, but they will happen for your child.  You will learn things about yourself that you didn't know existed.

Bad things happen to people everyday, regardless of having Down syndrome or not.  Children who are born "healthy and perfect" are diagnosed with cancer and other life-threatening illnesses everyday.  A test isn't going to predict that (yet!).  This isn't a pro-prenatal testing vs. anti-prenatal testing issue.  This is a changing the way we view Down syndrome issue.  That national segment reached how many people?  How many people who already know very little about Down syndrome just equated it further with "bad" news and not being "safe"?  In my opinion, one person is too many.

The MaterniT21 PLUS test isn't going to predict how much you will love your child with Down syndrome.  How much you will root for them to conquer the next big skill.  How much more pride you will take in the small things, the small victories, the simple things in life.  How it will cut you to the core when someone says "Down syndrome isn't compatible with life" when you know and can see that your child is full of life and living it to the max.  How you will live a wonderful life as a family, just as you had hoped.  

Those are the truths that no test can tell you or predict for you.  

And I know because I live it everyday and I'm proud.

Saturday, February 16, 2013

The Learning Program Online Pilot



We are pleased to invite you to participate in the pilot of our online version of The Learning Program™.  The Learning Program™ utilizes current research on best practices and effective teaching strategies to improve educational outcomes for children with Down syndrome.  For more information, visit or click here.   

The LP Online Pilot will consist of four sessions from our Level 1 class offered through Webex in live or recorded formats.  Level 1 is for parents of children wtih Down syndrome between 3 and 6 years who are interested in support with vocabulary expansion, sight word acquisition, sentence building, personalized materials, and early math.   

Note: These sessions are offered throughout the nation through our Learning Program Partners.  If you are already participating in a Learning Program group, these presentations may not provide you with new or different information.  Similarly, the presentations have been offered at the NDSC Conference and other conferences nationwide.

Please contact us at if you have questions. 
Online Registration Through Eventbrite

Additional Information and Forms 

Here is additional information for your consideration: 
  • Enrollment in the program is limited and spaces will be filled on a first-come, first-served basis. 
  • Registration and payment must be received by February 26, 2013 for a guaranteed spot. 
  • Classes will meet online for approximately 1.5 hours.
  • Tuition includes online instruction and access to recorded instruction, instructional handouts and online monthly personalized support.  Reading and math materials can be ordered from the DSF online store or downloaded for free from our website.  


Friday, February 15, 2013

Celebrate WDSD with the DSALA at the LA Kings Game!

Celebrate World Down Syndrome Day
 with the Down Syndrome Association of Los Angeles at the Los Angeles Kings Hockey Game
Saturday, March 9, 2013
7:00 pm - 9:30 pm

We hope you and your loved one with Down syndrome will be joining the DSALA to the L.A. Kings and to sit on the bench for "Bench Recognition" in honor of World Down Syndrome Day.

We still have a few 300-Section tickets available. Call the DSALA Office at 818-786-0001 to get tickets for you family and friends now.   The office can accept Visa and MasterCard.  See you at the Kings Game!

Go Kings,
Down Syndrome Association of Los Angeles 

L.A. Kings Game 
kings 2012

LA Kings vs. Flames  
7:00 PM Game
Saturday, March 9th
Staples Center
1111 South Figueroa Street, Los Angeles, CA  

Call with your Visa or MC for tickets!  
  king 2 2012

Thursday, February 14, 2013

When Bill met Shelley: No disability could keep them apart

"If you're that in love, age doesn't mean a thing. Even though my mind was young and my heart was young -- somewhere inside my head I was mentally old enough."
–Bill Ott
“You know that scene in 'Dirty Dancing' where Baby meets Johnny for the first time? It was kind of like that."
–Shelley Belgard
BILL OTT WILL always remember the moment he met Shelley Belgard. It was in spring 1988. He was 12 and sometimes shy. Into music, sports and, suddenly, girls.
Shelley was three years older, chatty and outgoing. They'd both shown up at a Montgomery County social club looking for friends, fun and the kind of acceptance that seems so elusive during teen life.
Shelley smiled. Bill introduced himself. And that was it. "I didn't know what love was," he says. "Until I met her."
He was sure it was the real thing, but nobody ever believes that coming from a 12-year-old.
Certainly not one with Down syndrome.
But Bill knew. "If you're that in love, age doesn’t mean a thing," he says. "Even though my mind was young and my heart was young -- somewhere inside my head I was mentally old enough."
And the feeling was mutual. "You know that scene in 'Dirty Dancing' where Baby meets Johnny for the first time? It was kind of like that," remembers Shelley, a petite brunette who was also born with a mental disability. "You're looking at this awesome-looking guy, and you really don't want to blow it. You kind of want to play it safe and not play it safe at the same moment."
He lived in Silver Spring and she was in Potomac, so they exchanged phone numbers. Their parents would drive them to movies and one another's houses. They frequently met at the social club. Throughout high school, they stayed close.

Bill took Shelley to both his junior and senior proms. Each time he rented a tux, and she picked out a fancy new dress. They wrapped their arms around each other to pose for photos and danced all night long. Bill, who grew up going to Catholic Mass every Sunday, told Shelley's mother he would convert to Judaism if that's what it took to be with her.
But after high school, it became more difficult to remain in each other's lives. They moved into assisted-living programs in different parts of the county. There weren't as many social activities to bring them together and, eventually, they lost contact.
But Bill never forgot. He had known true love -- her name was Shelley.

Wednesday, February 13, 2013

Advocacy needed to push initiatives for people with disabilities

by William Daroff from JTA:
In the coming weeks and months, Congress will enact sweeping reductions in federal spending, finalize the 2013 federal budget and raise the debt ceiling. The cuts that will come with these decisions are not merely numbers on a ledger; they will decimate programs that directly impact the lives of the most vulnerable among us and the ability of social service agencies to serve them.
For individuals with disabilities who are aspiring for healthy, independent lives, this is a particularly critical time. The unemployment rates we associate with the slow recovery from the Great Recession pale in comparison to the persistent lack of employment opportunities that have ever been available to the disability community. The disincentive to work inherent in our social safety net, and the inability for those relying on it to build assets, makes upward mobility even more difficult.
The growing challenge for non-profit agencies to provide home- and community-based care makes independent living for many individuals with disabilities an impossibility.
This is why dozens of advocates representing a broad range of Jewish communities, religious streams, social service providers and public policy organizations traveled to Capitol Hill on Tuesday to promote the Community First Choice (CFC) option in Medicaid and the Achieving a Better Life Experience (ABLE) Act, both of which further the goals of ensuring individuals with disabilities can lead healthy, independent lives.
During the month of February, Jewish communities across North America observe Jewish Disability Awareness Month. It is an opportunity to raise awareness of the needs, strengths, opportunities and challenges of individuals with disabilities in our communities and to ensure we are building more inclusive communities that celebrate everyone among us. It is also an opportunity for us to engage with lawmakers and express support for public policy initiatives that lead to better outcomes for the disability community.