Thursday, July 28, 2011

Self Advocate, home owner Craig Blackburn

Craig Blackburn.jpg


For years, Craig Blackburn dreamed of getting his own place. And as soon as he learned about A Home of My Own, that dream turned into a goal.

“I was living with my parents, and I was 30 years old,” he said.

Blackburn knew reaching that goal would mean making some big changes in his life: He would have to leave his parents’ house in St. Charles Parish, where he’d lived his whole life, and move to Jefferson Parish. And he’d have to leave the job he had at the Winn-Dixie in Luling where everyone knew him and cared about him.

“I had a lot of friends there,” he said. “They were like my family.”

He wanted to live independently, though, and A Home of My Own could make that happen.

A Home of My Own, a collaborative effort between Jefferson Parish Community Development and the Jefferson Parish Human Services Authority, helps people with developmental disabilities buy their first home. Through HUD, the program provides financial assistance of up to $50,000 for the down payment and closing costs on a house and reduces the mortgage to make home ownership affordable for people with special needs.

“I went to two classes to learn how to buy my own place, and there was a lot of paperwork to fill out,” Blackburn said.

Blackburn, 32, has Down syndrome. He also has determination, a strong work ethic, and a lot of dreams and goals.

“We take people like Craig by the hand and lead them through the program,” Liz Ruth, a housing counselor at Jefferson Parish Community Development, said. “They need the best loan there is out there. We use the lenders who give the best interest rates and the least amount of charges.”

Blackburn had a couple of requirements when he went looking for his new home: It needed to be along the bus route in the Metairie or River Ridge area because he doesn’t drive, and it needed to have a small yard or no yard to maintain.

He found everything he was looking for in a Metairie townhouse community that includes two swimming pools and an on-site exercise room.

“I felt happy the day I got the key to this place,” Blackburn said, when he showed me around his townhouse. “I moved in on May 14, 2010, the day before I turned 31.”

A Home of My Own, which started in the early ’90s, has helped around 40 developmentally disabled people buy a home in Jefferson Parish (not including Kenner, which has a separate Community Development program through HUD). Across the U.S., only about one percent of developmentally disabled people own a home.

“It’s really, really rewarding to help someone like Craig, who works at a minimum wage job and is trying to better himself and take care of himself,” Ruth said.

Blackburn, who got a job at the Winn-Dixie in River Ridge when he was buying his townhouse last year, was able to get a Community Development grant of $50,000. With some additional help from his parents, his down payment was enough to reduce his monthly payment to within 30 percent of his monthly income.

“It’s a wonderful program,” Ruth said. “We’re setting him up to be successful.”

Blackburn is an inspiring success story, and not just because he’s a homeowner.

When he was two months old, he became very ill, and doctors told his mother he probably wouldn’t live to be a year old.

“They didn’t think I was going to make it, and look where I am now,” Blackburn said, smiling. “I’m very happy.”

His mother, Pat Ehrle, could not accept the idea that she might lose her baby boy.

“I called my mom and said, ‘Start the prayers,’” Ehrle said. “All that mattered to me was that my baby lived.”

Having a son with special needs changed Ehrle’s life.

“It made me strong enough to speak up and advocate for Craig,” she said. “I would make sure he was provided with the resources, and then he took over.”

When he was 3 months old, she enrolled him in the Arc of New Orleans’ early intervention program, and when he was 8, she convinced St. Charles Parish school officials that he should move from special education to a regular classroom setting.

“When he was born, his goals were set by us,” Ehrle said. “But he always had that drive, that positive attitude. He always says, ‘Success comes in trying.’”

Blackburn graduated from Hahnville High School in 2000.

“I got a regular high school diploma, and I never failed a grade,” he said.

He was manager of the football team for his four years of high school.

“That was fun,” he said. “All my friends would put me on their shoulders and carry me off the field.”

Blackburn admits that graduating from high school was a challenge. He had to work harder than his friends did, and he had to take the GEE more than once.

“I had a lot of tutoring both inside and outside of school,” he said. “My mom was good at English and my stepdad helped me with math.”

After high school, Blackburn had another goal. He wanted to become a motivational speaker.

Once he got started, there was no stopping him. He has spoken about inclusion and about “Dreams, Visions and Goals” all over Louisiana and around the country, and even in Qatar in the Middle East. He serves on several boards and advisory committees, and the walls of his townhouse are covered with awards he has received.

“I like to spread the message to help families be positive,” he said. “I like to help people have full participation in life.”

Owning his own home is one part of his having “full participation in life.”

After living in his townhouse for more than a year, he says the transition wasn’t too difficult.

“Transferring from working at the Winn-Dixie in Luling to the Winn-Dixie in River Ridge was kind of hard,” he said. “But every day it got easier.”

Blackburn’s move was a transition for his parents, too.

“It wasn’t as difficult as you might think because it felt so right,” his mom said. “All these years Craig said, ‘I want to live independently.’ There was no way we could say, ‘You can’t reach your goal. You can’t live your dream.’”

She and her husband, Ken Ehrle, are grateful for the help they received through A Home of My Own.

“We give such credit to Liz Ruth, and to Brenda Gremillion and Stephanie Campo at the JPHSA (Jefferson Parish Human Services Authority),” she said. “I told them, ‘You really can change somebody’s life.’”

Blackburn has another goal now, one that is elusive.

For four years he has been engaged to Heather Hancock of Oklahoma City, Okla.

“We’d like to get married and have a place to ourselves,” he said.

They met at a National Down Syndrome Association convention in St. Louis nine years ago and have been a couple ever since.

The problem, Blackburn’s mom says, is that they both get their benefits through state programs. If she moved to Louisiana, she would lose hers, and if he moved to Oklahoma, he would lose his.

“It took Craig 14 years to get the waiver in Louisiana,” Ehrle said. “He would have to start all over again.”

So they think about each other all the time, and see each other as often as they can. They'll get together again in August at the next national Down syndrome convention in San Antonio.
In the meantime, they talk at least twice every day.

“We have a long-distance relationship,” Blackburn said, gazing at a photo of his fiancee. “We Skype and we talk on the phone and on Facebook. We have a lot of fun. She’s very sweet.”

To learn more about A Home of My Own in Jefferson Parish, call Liz Ruth at 504.736.6267.

Wednesday, July 27, 2011

Swim team coaches athletes with Down syndrome

Everyone Has Story:

from pressofAtlanticCity:

Cheryl Laurence has a 23-year-old daughter, Kirstin Angelozzi, who has Down syndrome and loves swimming. When they couldn’t find a swim team for her close to their Little Egg Harbor Township home, Laurence started a special needs team called Ocean County’s New Wave.

Laurence coaches the team, which practices once a week from September to June in the St. Francis Center Pool in Long Beach Township. She gets lots of help from Tom Rears, of the Brant Beach section. His son, Thomas Charles Rears, 27, also has Down syndrome and is an excellent swimmer. 

The team started with just four members, but that didn’t keep it from participating in the New Jersey Special Olympics Summer Games at the College of New Jersey in Trenton last month, where both Angelozzi and Rears won silver medals in the 50-meter breast stroke.

Rears, who works at Wawa in Beach Haven and volunteers with his dad for Meals on Wheels, also placed fifth in the men’s 50-meter freestyle. Angelozzi, who works at the Arc of Ocean County’s supported work facility in Lakewood, took seventh place in the girls 50-meter freestyle, Laurence said.

“We’re really looking for more members,” said Laurence, who helps husband Jeffrey run Laurence Heating and Air Conditioning in Little Egg Harbor Township.  Any young adult with developmental disabilities who knows how to swim is welcome, she said.

Email her at or for a link to her website, visit

Tuesday, July 26, 2011

Solution for Degenerative Eye Disease Keratoconus

from PR Newswire:

Renowned Beverly Hills ophthalmologist Dr. Brian Boxer Wachler performed his revolutionary non-invasive Holcomb C3-R® procedure on John Allen, a 31-year old from Shawnee, Oklahoma. Born partially deaf and with Down syndrome, Allen's vision was failing due to the degenerative eye disease Keratoconus. Though surgical options do exist to correct the disorder, surgeons had been reluctant to operate on Allen due to his pre-existing chromosomal and developmental condition. With Dr. Boxer Wachler's procedure, Allen's Keratoconus will be stopped in its tracks. His story raises awareness for others like him, as a recent study shows the prevalence of Keratoconus in those with Down syndrome to be exponentially higher (5%-15%) than the general population (.05%).

"The world needs to know that people with Down syndrome afflicted with Keratoconus can be treated and now have hope," said Dr. Boxer Wachler. "Due to the disproportionally high number of cases like John's, we hope to show that there is light at the end of the tunnel."

The Holcomb C3-R® procedure is a 30-minute outpatient procedure that is designed specifically to treat Keratoconus. During the treatment, custom-made riboflavin eye drops are applied to the cornea, which are then activated by a special light, ultimately strengthening the weakened cornea. The technique, which Dr. Boxer Wachler has been performing since 2003, was renamed in honor of Olympic four-man bobsledder Steve Holcomb, who had retired from the sport in 2007 when Keratoconus had rendered him legally blind and unable to steer his sled.

After Dr. Boxer Wachler's C3-R® procedure restored his sight, Holcomb led his four-man team to a gold medal at the 2010 Winter Games in Vancouver and Dr. Boxer Wachler added Holcomb's name to the procedure as a tribute.

The Holcomb C3-R® method works by aiding collagen cross-linking, which increases the cornea's mechanical strength, thus preventing the cornea from bulging out and becoming steep and irregular, which is caused by Keratoconus. When indicated patients can elect to combine the Holcomb C3-R® treatment with permanent contact lenses called Intacs that help flatten the Keratoconus cone even more, a technique also pioneered by Dr. Boxer Wachler in 1999. In these cases, the Intacs help reverse pre-existent Keratoconus steepening prior to the treatment.

With today's procedure, John Allen is on the road to improved overall quality of life. Allen's mother warmly stated "Dr. Brian Boxer Wachler is an angel sent to help our angel."
To learn more about Keratoconus, Dr. Boxer Wachler or the Holcomb C3-R®, please visit

Monday, July 25, 2011

White House Disability Group Monthly Call on July 27

Join the White House Disability Group Monthly Call on July 27

In order to keep the public more informed, the White House Disability Group hosts monthly calls to provide updates on various disability issues, as well as to introduce individuals who work on these issues in the federal government. The next call will take place on Wednesday, July 27th at 1:00 PM Eastern.

This call is open to everyone, but is off the record and not for press purposes.
Dial in number: (866) 298-7926. Please call in five minutes early due to the large volume of callers expected.

Topics: Technology, Section 508 of the Rehabilitation Act, independent agencies, emergency preparedness, employment, budgetary issues and other topics. 

Title: White House Disability Call (use instead of code)

For live captioning, visit at the start of the event. Please be respectful and only use this feature if you are deaf or hard of hearing.

If you would like to be added to the White House Disability Group email distribution list, visit and fill out the "Contact the Disabilities Issues Outreach Team" online form, or send an email to with your full name, city, state and organization.

Don't Cut Medicaid -- Reform It

from the NDSC:

Call Your Senators and Representatives and tell them that arbitrary Medicaid cuts will hurt people with disabilities.  Real Medicaid reform is what is needed.

Congress appears to be closer to reaching an agreement about spending cuts before the August 2nd deadline to raise the debt ceiling.  Entitlement spending (e.g., Social Security, Medicare and Medicaid) is at the center of these discussions.  Although nothing is “off the table,” it appears that Medicaid is the major target for spending cuts. The ways in which the program would be cut are being referred to as spending caps, block grants and blended funding.
Any large cuts in Medicaid will likely result in a serious blow to, if not elimination of home and community based services.  These are the services that adults with disabilities rely on to live and work in the community.

Action Needed
Press the “take action” button and contact your Senators and Representative today with the message that cutting Medicaid arbitrarily will hurt people with disabilities.

Talking Points
Medicaid is the main source of funds for people with disabilities to live and work in the community with dignity, avoiding costly, segregated and dehumanizing nursing homes or institutions.

Indiscriminate cuts to Medicaid will force people into higher cost institutional placements; 
Expanding self-directed services options which allow beneficiaries and families greater control over their resources will save money and preserve important services.

If you have questions, please contact

Sunday, July 24, 2011

Get your Congressman to Co-Sponsor the Special Needs Tax Credit Bill

from the NDSS:

Act Now! Get your Congressman to Co-Sponsor the Special Needs Tax Credit Bill
We are asking that you email or call your congressperson to ask him/her to co-sponsor a bill that would provide a refundable tax credit of up to $5,000 for the cost of establishing guardianship for an individual with disabilities 18 years or older.

Background of the legislation: Introduced in the US House of Representatives by Congressman Ted Deutch (D-Fl), the Special Needs Tax Credit bill, H.R. 878, would provide a tax credit for those people whose pursuit of guardianship often involves the expenditure of thousands of dollars in legal fees.   

Problem: For many parents and families the cost of working with an attorney to obtain guardianship, a complex legal process involving expensive legal fees and often many months of effort, is simply unaffordable. The bill would seek to remedy this situation by providing a tax credit of $5,000.  Single people with an income of less than $75,000 and married couples with incomes of less than $150,000 would receive up to the available credit, but the available credit would be reduced as a person or couple’s income rose.

Support of the bill on the part of NDSS, however, should in no way be viewed as a position that encourages the pursuit of guardianship.  Rather, the National Government Affairs Committee of the NDSS, which voted to support the legislation, determined that NDSS should support a bill that would provide monetary relief to those parents who choose to pursue guardianship.

Contact Your Congressman’s Office:  Please call your representative by phone or email as soon as possible.  You can contact the office by calling (202-224-3121). Ask for the name of someone on the staff handling tax matters. Be sure to get a contact phone number or e-mail to deliver your request.

Talking points and email points:
  • I am the parent of a child/adult with Down syndrome and I am calling/emailing to request that Representative ______ cosponsor H.R. 878, the Special Needs Tax Credit bill, H.R. which would provide a tax credit for people who pursue guardianship for a loved one. 
  • The cost of working with an attorney to establish guardianship can total $3,000 to $5,000 dollars.
  • Families with a member with a disability have extraordinary costs to bear across the lifetime of that individual.
  • Many families will have incurred thousands of dollars in expenses for years of therapies, medications and a variety of supports.
  • Many of these families cannot even begin to enter the process of guardianship because of the great expense of legal assistance.
  • A tax credit of up to $5,000 for people who incur costly legal expenses would greatly benefit many parents and families of individuals with disabilities.
If you are not on the NDSS action alert email list and would like to receive these alerts and information bulletins, please subscribe at:

Saturday, July 23, 2011

Two adoptive mothers honored by the Queen

from The Shuttle:

Two women from Bewdley, UK who set up a home and adopted four children with Down’s Syndrome attended one of the Queen’s garden parties in recognition of their work.

Heather Trew, 60 and Rosie Allen, 62 were surprised with letters inviting them to Buckingham Palace for their service to children and families. The pair have spent more than 35 years caring for the disabled children they created a home for.

The friends met while working as residential social workers at the former Barnardo's home in Spennells more than 35 years ago.

At the time, the charity had an advert in The Shuttle asking for a foster home for four-year-old Caroline who had Down syndrome.

When no one came forward, the friends felt it was their calling to help the little girl - even though it meant leaving their jobs and moving in together to be able to foster and later adopt her.

Miss Allen said: “I became a Christian while working at Barnardo's and we both felt we were led to do this. We were advised that we would not be able to adopt from Barnardo's while we were still working there so we left. In those days it was unusual for two women to adopt but it helped that they knew us and knew we were Christians.”

Miss Allen became a caterer at what was then The Elms and Miss Trew became a special needs teacher at Blakebrook School.

In 1981, while going through the adoption process with Caroline, who is now 39, they heard of baby Debbie, now 31 who was in need of a home and Miss Allen gave up work to become a full time mother.

Four years later, they welcomed Katie, now 27 into the family and Richard, now 24 joined them in 1988. All of the children’s names were changed by deed poll to Allen-Trew.

Miss Trew said: “Once we had done it for one you think there are other children out there so we ended up with four.”

She added: “I think Caroline would have spent her life in a children’s home and it wasn’t the right environment. I think all children deserve a family and although we are two women we have tried to create a family identity. Even though some have health problems and behavioural problems that’s part of family life and they have given us a lot more than we have given them.”

The mothers and their two eldest daughters attended a garden party at Buckingham Palace on Tuesday, July 12. They passed through state rooms before taking tea in the garden along with about 8,000 invited guests. After taking tea in a big tent they joined two long rows and the Queen and Prince Philip passed along one each.

Miss Trew said: “We were about six feet away from the Queen. She was in lemon and was on her feet for a good couple of hours talking to people in the Royal tea tent and in the line. It was remarkable stamina for a woman of 85.”

She added: “It was very moving. The girls found it fascinating. They realised it was a great honour. There were about 8,000 people there so it was a big affair but because they could nearly touch the Queen they were very excited.”

Friday, July 22, 2011

movie "Anita" about a young Argentine woman who has Down syndrome

Anita Poster


The Martha's Vineyard Summer Institute will play "Anita," about the misadventures of a young Argentine woman who has Down syndrome, on Sunday, July 24.

Summer Institute's "Anita"

Set in Buenos Aires, "Anita" is a compelling portrait of a young woman with Down syndrome who lives with her mother until an anti-Jewish bombing disrupts their lives. As played with poise and sincerity by Alejandra Manzo, Anita is well loved and cared for by Dora (Norma Aleandro, nominated for an Oscar in "Gaby, A True Story").

Bombing of the nearby Argentine Israeli Mutual Association (AMIA) in 1994, an event that actually took place, leaves Anita disoriented and alone. Wandering the streets of a city that has the largest Jewish population in South America, and unable to communicate adequately what has happened to her, she befriends a variety of people who temporarily take her under their wings.

First comes Felix (Luis Luque), an alcoholic photographer with a host of problems who reluctantly brings Anita home for the night and, to his surprise, helps her bathe. Meanwhile, Anita's brother Ariel (Peto Menahem) and his wife are desperately searching for Anita.

Felix decides to bus Anita to a mental hospital, drops her off, but doesn't stick around. Hunger eventually spurs Anita to enter a little Asian market, where she picks out some food but has no money.

Eventually the irritated woman who runs the market relents and takes in Anita. Anita happily settles there until an attempted robbery scares her away. She bumps into her would-be buddy Felix again, who delivers her to his sister.

In each case, Anita's naturalness and simplicity bring out a touch of humanity lurking in the strangers she befriends. When she is finally reunited with Ariel, she happily climbs into his car and heads home to deal with what has happened to their mother.

"Anita" illustrates the resourcefulness and innate intelligence of an individual with Down syndrome.  Director Marcos Carnevale tells Anita's unusual story with tenderness and subtlety.

Thursday, July 21, 2011

Toddler prevented from riding at amusment park


Lynnette Prescott, of Macungie, Lehigh County, said her two-year-old daughter was kept off a ride at Dorney Park in South Whitehall Township on Friday because she has Down syndrome.

"When we approached to get on, this ride attendant said she, meaning Isabella, can't go on this ride," said Prescott. "She said she's an infant. She can't walk."

Isabella, who is small for her age, was prevented from riding the Road Rally ride in the Planet Snoopy section of the park, a ride her mom said Isabella has ridden before.

"Just goes around in a circle in a track," said Prescott. "I'm not asking you to allow her on anything strenuous."

Jason McClure, vice president and general manager of Dorney Park, said it's not discrimination, but safety concerns for the rider.

"The specific ride requires you to stand and to be able to brace yourself, and those are requirements you have to review," said McClure.

According to the ride requirements, a parent must be present with children under 3, and a seat belt is designed to hold the rider in place.

Little Isabella can walk and stand with a walker. Prescott said she wanted to show that to the park employee, but she claimed the worker didn't want to see it and instead told her Isabella didn't look like she could handle the ride.

McClure said it's not the park's standard procedure to tell guests they look like they should not ride.

Riders in question are required to pass a verbal checklist based on their ability, said McClure. If it's determined they're not safe to ride, he said they won't ride.

Prescott said she is taking legal action against the park, but said she really just wants an apology.

I would like to see her being treated like any other future child who goes into the park with a disability," said Prescott. "I want her treated equally and not judged by the way you look."

Wednesday, July 20, 2011

Erin's Breakfast Blend

from WesminsterPatch:

Dave Baldwin knew he had a special partner to start his new business venture. His daughter, Erin, has Down Syndrome, and it has been her challenges in life that inspired him and his wife to start Furnace Hills Coffee Company.

The Baldwins, who live in Furnace Hills (hence the name of their coffee business), said “Our daughter was living in a home in Wisconsin and things weren’t going the way we thought they should be so we brought her home.”

Once home, Baldwin knew his 37 year-old daughter would need to have something to do. There were phone calls and inquiries made to the state and requests made in relation to job availability for the developmentally disabled.

 “We weren’t able to come up with anything. There was a wait list for jobs for the developmentally disabled,” explained Baldwin. “We said this is not going to work.”

Determined, Baldwin took matters into his own hands and ultimately, his research and internet surfing brought him to a website featuring, Aspire.

Aspire is a leading Chicago based, nonprofit, that helps children and adults with developmental disabilities aspire and reach for their dreams.

“Jim Kales is the guy who is the CEO of Aspire and he started a not for profit coffee roasting business where developmentally disabled individuals work,” Baldwin explained. “When I saw this, it got me to thinking. I thought if they can do it in Chicago, I can do it in Maryland.”

And do it in Maryland they have--specifically in Westminster, Maryland.

In April of 2010, Baldwin got Erin started with small roasters; making coffee for family and friends in their home. “We did this to make sure we were doing o.k,” joked Baldwin. “And we lived in Furnace Hills, so that’s how we came up with the name for the company.”

Last May, they expanded their sales beyond family and friends and then just last month, they made the move to their storefront at 71 W. Main Street.

“As we grew, we went to a larger, gas fired roaster,” Baldwin explained. “We also needed to hire someone to work with Erin--so through a Facebook update we found Lia.”

Lia Moore, a Walden University graduate student majoring in mental health counseling, started working with Erin last September.

Now, the two women work together Monday through Wednesday from 8 a.m. to 3:30 p.m. in the Main Street store roasting beans for the company’s seven coffee offerings.

“I help Erin put the beans in the roaster and add the blend,” said Moore. “Erin selects the settings and starts the roaster.”

Once the roast is completed, the coffee beans are placed in labeled bags and ready to sell.

Moore estimates about 100 lbs. per week are roasted and bagged to sell in a variety of venues.

“We probably sell about 30 lbs. a week at the Farmer’s Market on Railroad Ave. in Westminster,” Baldwin said. “We also brew and sell cups of coffee at the Farmer’s Market.”

The rest of their production is sold through numerous accounts with coffee shops, bakeries and online sales.

Baldwin explained there are many “special” aspects to the Furnace Hills Coffee Company. Certainly their coffee is produced from high quality, organically grown beans, but they embrace the goal of employing developmentally disabled people.

Their commitment is evidenced by the support they give to other entities that are dedicated to the same goal; utilizing the skills of individuals with developmental disabilities.

“Each bag of coffee we sell, we give $1 to an organization that works with developmentally disabled orphan boys in the Ukraine,” Baldwin said. “Each lb. of our Telunas blend we sell, we give $1 to community development in Southeast Asia.” 

Tuesday, July 19, 2011

Dr. Skotko's response to GQ magazine's insensitive language

The following was written by Brian Skotko , MD, MPP, a Physician at Children’s Hospital Boston’s Down Syndrome Program. It’s in response to a feature in GQ magazine that used insensitive language.

On July 15, John B. Thompson of GQ magazine slammed Bostonians as the worst dressed in the nation.  Evidently, our beloved Beantown is actually a “bad-taste storm sewer” where all the worst fashion ideas come to “stagnate and putrefy.”  He further decries, “Boston suffers from a kind of Style Down Syndrome , where a little extra ends up ruining everything.”

Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants. Laugh if you want at the loud argyles that I prefer to wear with my black suit. I don’t even care if you dismiss the sexy pink polka-dotted tie that I like to wear with my blue-checkered shirt in clinic. But, whatever you do, do not mess with my sister.

My sister, Kristin, has Down syndrome, and let me explain what “Style Down Syndrome” really is.  “Style Down Syndrome” is smiling when everyone else prefers to frown. It’s spending three summers, in sheer determination, learning to ride a bike because you want the freedom to be like everyone else. It’s singing tunes from Grease at the top of your lungs with your friends. It’s celebrating a third-place victory at a swim meet with as much gusto as the gold medalist.

Style Down Syndrome is strong-willed, persevering, and forgiving—because it has to be.

People with Down syndrome are ridiculed on a daily basis. Although not as obvious as GQ’s sport, children with Down syndrome do not always get invited to birthday parties just because they have Down syndrome. Young adults, freshly minted from high school, sometimes have trouble finding post-secondary opportunities. And, adults with Down syndrome are often the first to be fired when the economy tanks.

All of this comes at a time when people with Down syndrome are achieving previously unimagined successes. They are graduating, working, living and loving within our communities.  So, why do people underestimate their abilities?  It must be because they do not know someone with Down syndrome.

Because, if they did, they would come to appreciate the life lessons that accompany their extra chromosome.

If my friends who are black were mocked, they would not take it. If my friends who are gay were slurred, they would not take it. My 400,000 fellow Americans with Down syndrome have been cheapened, and I will not take it. I invite GQ magazine to introduce its readers to real people with Down syndrome through the My Great Story campaign of the National Down Syndrome Society.

The original GQ piece has been changed, removing the 'Down Syndrome' reference. No explanatory note appears on the page.

Monday, July 18, 2011

Prevalence of sleep apnea in Down syndrome


DEAR DR. ROSENBERG: My 9-year-old has Down Syndrome. She snores and is doing poorly in school. In fact, over the last two years, she seems to be doing much worse. Her teacher is concerned and told me sleep apnea is common in people with Down syndrome. Is this true and why?

A: Yes, the teacher is correct; there is a very high prevalence of sleep apnea with Down syndrome. The causes are multiple including muscular weakness, jaw position, enlarged tongues and enlargement of the tonsils and adenoids. Bottom line is, sleep apnea may be present in 40 to 50 percent of people with Down syndrome. Untreated sleep apnea may further impair your daughter's mental function. I would discuss this with your health care professional.

Thursday, July 14, 2011

Self-advocate pushing for change in law


from The Herald News:

When he’s not taking classes at MassBay, working at one of his three jobs or volunteering, Brian Heffernan is making sure that other young people with Down syndrome and other intellectual disabilities get the same opportunities he’s had.

Most recently, Heffernan, 20, of Newton, has been advocating for a bill at the State House that would change the special education licensing requirements to provide optional advanced training for teachers who want to focus on transitioning children with intellectual disabilities into the competitive work force.

Newton resident Julia Landau, senior project manager for the advocacy group Massachusetts Advocates for Children, said the bill would allow more children with intellectual disabilities like Down syndrome and autism to become productive members in their communities.

“Right now three-quarters of the youth with disabilities in our state ages 16-26 end up in sheltered workshops or [day habilitation] programs or unemployed and we know that youth with disabilities when provided the appropriate transition planning and services can measure up with their potential and can live and work competitively,” she said. “That’s the difference between the tapped and untapped potential.”

Heffernan has been taking classes in courses like criminology, mass media and career and life planning at MassBay for the past two years through the school’s partnership with the Newton Public Schools. The Inclusive Concurrent Enrollment grant program allows public high school students with severe intellectual disabilities who are between 18 and 22 and have not yet passed the MCAS test the opportunity to take inclusive college courses aligned with a career goal.

“I’m really proud of the career and life planning class,” Heffernan said. “It made me think a lot about my career.”

During the school year, Heffernan takes public transportation from his house in Newton to the Wellesley Hills MassBay campus, takes general college classes with his peers and works out after school in the school gym. Last summer, Heffernan was looking for activities to join on campus and noticed that the college didn’t have a glee club like his favorite TV show, “Glee,” so he researched and sought out the required number of signatures to form his own glee club.

Heffernan said his classes at MassBay have helped him decide that one day he wants to have a career in the film or television industry. He’s already written a 52-page TV script, “The Heffernan Show,” loosely based on “The Cosby Show.”

“One day I got on my computer and just started writing,” he said, while walking around MassBay last week.

In between his busy class schedule at MassBay and camp during the summer Heffernan finds time to work as a host at Wally’s World in Fenway Park, as a bagger at Shaw’s Supermarket in Auburndale and as a guest speaker in the “Understanding Our Differences” curriculum in the Newton Public Schools. He speaks to graduate students about his disability at Brandeis, Harvard and Boston universities and during the summer he volunteers at City Hall delivering mail and stacking books at the Newton Free Library.

“He’s really remarkable,” said Landau of the Massachusetts Advocates for Children, in a phone interview.

Heffernan’s mother, Julie Hefferman, said that her son wants to continue to take classes at the college after he passes his English MCAS test. She said that once he passes the English MCAS test he will place out of the special education program in the Newton Public Schools, but will still be able to receive special education services at the college.

“We’ve had a partnership for the past five years with the [Newton schools] to give students with intellectual disabilities the opportunity to take college courses,” said Jayme Finstein, inclusive concurrent enrollment grand coordinator at MassBay. “The goal is to have the courses connect with future career goals. You spend your whole day on campus doing anything that any other student would do.”

Julie Heffernan said her son has flourished through his classes and the new friends he has made at MassBay.

“On Facebook, he has all these friends we’ve never met because he has this whole college life now,” she said.

Landau said she is hopeful that the bill will soon be voted out of the Joint Committee on Education.

Wednesday, July 13, 2011

In ‘Girlfriend’ Evan Sneider plays a character much like himself

 In the new indie film "Girlfriend," Evan Sneider, below right, plays an actor loosely based on himself.

from The Jewish Week:

Three years ago, when Justin Lerner decided to give his friend, Evan Sneider, an actor with Down syndrome, a small role in his master’s thesis film, he did not know Sneider would eventually become critical to the launch of his own career.

“I put Evan in it as a kind of friendly gesture,” Lerner said. The role Sneider played, the mean boss of the protagonist, wasn’t written for someone with Down syndrome. But Lerner felt that an actor with the condition could, if talented enough, play the role perfectly well.

“Evan was in the movie for two scenes, but he blew me away,” said Jerad Anderson, a film producer who saw Lerner’s thesis film, “The Replacement Child,” in 2008. It won a flurry of student awards, and went on to screen at many film festivals, including Sundance.

Anderson immediately wanted to make a new film with Lerner, and had an idea for a deadpan comedy along the lines of “Napoleon Dynamite,” featuring a character with Down syndrome. But after talking with Lerner, Anderson shelved the plan.

“We should make a film about Evan,” Lerner remembers him and Anderson thinking. “We just hit the ‘Go’ button,” Anderson said, following him up.

The result is “Girlfriend,” which makes its New York premiere this week after a highly praised showing at the 2010 Toronto International Film Festival.

“Girlfriend” follows Evan Gray, a character loosely based on Sneider, a Jewish actor with Down syndrome, as he courts Candy, the girl of his dreams. A single mother struggling to pay her rent, Candy plays along with Evan’s romantic fantasy, though never quite giving in. Her motive his clear: Evan is willing to give her money, the one thing she desperately needs.

“I’ve always loved acting, and I’ve always been involved in community theater,” said Sneider. “But working on ‘Girlfriend was a lot of fun, too.”

As with Lerner, 31, this is Sneider’s first feature-length film. Yet Sneider knows that having Down syndrome has limited the roles mainstream directors are willing to cast him in.

“To be honest, I’ve always been open minded and would like to play many roles,” Sneider said, meaning roles where Down syndrome was not part of the character. “I’m honored for what Justin did for me.”

Lerner makes it clear that Sneider’s character in “Girlfriend” does not need to have Down syndrome.

For Lerner, the challenge of making “Girlfriend” was to show how the character’s condition affected people’s perceptions of him —usually they underestimate his intelligence — without mindlessly perpetuating those perceptions himself.

“I don’t find films that have a social agenda interesting,” Lerner, the film’s writer and director, said. “They’re like Hallmark movies” — which is to say preachy and superficially uplifting.

“He’s as high functioning as they come,” Lerner said of Sneider. “He’s very self-aware; he knows he has Down syndrome … But the thing that makes Evan so unique is that he can empathize with anyone. He can understand how people are feeling better than anyone else.”

As far as Sneider’s acting went, his ability to empathize proved critical to his performance. His role required him to read an actor’s subtle cues — often wordless, and conveyed through facial expressions alone — which he intuitively had to react to.

Sneider would sometimes channel emotions he’s felt in real life to make his performance look more natural. “That’s a technique that only the best actors can pull off,” Lerner said. “His instincts are right on.”

There is nothing in the film about Evan’s character being Jewish. But the person upon whom the character is based — that is, Evan Sneider, the real person — says his Jewish upbringing is critical to him. “I haven’t been praying recently,” Sneider said, “but Judaism really means a lot to me.”

Sneider grew up in a Reform household in Wayland, Mass. Because he was highly functioning, his mother Donna made a point of keeping him in regular classroom settings — both in public school and Hebrew school.

Watching his older sister’s bat mitzvah was a significant moment: “Seeing his sister do it,” said Donna Sneider, “he was really looking forward to it. Experiencing his bar mitzvah was really important for Evan.”

Throughout high school Sneider took it upon himself to participate fully in school life: he ran for student council and won, asked his own date to prom and even picked on the new kid — Justin Lerner — who arrived in 11th grade.

“He definitely got the opportunity to haze me in front of everyone,” Lerner remembered, adding, “It wasn’t malicious in any way.”

Lerner and Sneider soon became friends and took electives together, like creative writing. But it was not until years later that their relationship became professional. While Lerner was in The University of California Los Angeles’ film school, he’d occasionally get calls from Sneider: “He would call me and ask, ‘You know, Justin, if you ever need a role, I’m around.’” Lerner recalled.

When it came time to make his master’s thesis project, Lerner was back in Massachusetts looking for actors. He let Sneider audition for a supporting role, and, realizing he really could act, put him in the film.

After Anderson approached Lerner about making another film featuring Sneider, they created “Girlfriend.” Soon they had a hit on their hands, with Sneider again becoming a star: “He even got us into some parties,” Anderson recalled. “He was a celebrity there.”

Of the roughly 350 films screened at the 2010 Toronto International Film Festival, only 15 were bought for wider distribution, “Girlfriend” among them. But not all of the reaction was positive. While Anderson was trying to raise money for the film over the Internet, a few anonymous writers posted nasty comments about Sneider on the website.

Evan’s mother, Donna, who lives with him in Massachusetts, remembers seeing Evan after he saw the comments — he was hurt, she said. She tried to console him, using the Holocaust and hate speech as analogies. “On the Internet, in private and anonymity,” Donna told her son, “they say mean things. They’re just cowards.”

But it was the “Girlfriend” film crew that ultimately lifted Evan’s mood. A few of the producers saw the comments, too, and knew Sneider was hurt by them. Later, when they all were reunited in Toronto, they gave him a binder with hundreds of personal letters supporting him — from the cast, friends, new fans and even Sylvester Stallone.

Tuesday, July 5, 2011

39th Annual NDSC Convention

It's not too late to register to attend the NDSC's 39th annual convention in San Antonio! The "Deep in the Heart" convention takes place August 5-7 at the JW Marriott Hill Country. While registration is closed for the Youth and Adults Conference, Brothers and Sisters Conference and Kids' Camp program, registration is open until July 15 for the General Convention and pre-conference sessions.

Each year, thousands of people from across the globe attend the National Down Syndrome Congress Annual Convention.  For most, it’s to hear the latest information from world-renowned experts.  For others, it’s a great vacation. But, for nearly all, there’s the one-of-a-kind NDSC family reunion feeling that permeates the convention weekend.

This August, the annual convention will be Deep in the Heart, in San Antonio, Texas, home of the Alamo, Sea World, Six Flags, Fiesta Texas, Morgan’s Wonderland, and, of course, the world-famous River Walk.

The General Convention offers parents and professionals an opportunity to learn from the best speakers from around the world and share experiences with one another.  To enhance the convention experience our Pre-conference Sessions offer an opportunity to go in-depth on a single topic.

Teens and adults with Down syndrome will be empowered at the Youth & Adults Conference.  Siblings of individuals with Down syndrome will have a chance to learn and be heard at the Brothers and Sisters Conference. This year, we’ll be offering Kids’ Camp, a supervised place for  younger kids to gather while the rest of the family attends conference workshops.  It truly is like a giant family reunion!

Monday, July 4, 2011

Lose The Training Wheels


Children with disabilities such as Down syndrome will be taught to ride two-wheeled bikes – gaining confidence and independence in the process – at Lose the Training Wheels, a program of the Center for Community Inclusion at the C.W. Post Campus of Long Island University and the Down Syndrome Advocacy Foundation June 27-July 1.

With the help of volunteers, family members and C.W. Post students, approximately 40 children will use adaptive equipment in a week of training and practice. At the end of the five-day program, they will be ready to ride on their own.

For many children with disabilities, riding a two-wheeler is a seemingly impossible task. Past experience at the Center for Community Inclusion and in Lose the Training Wheels programs around the country shows that within days of learning to ride, many children exhibit independent behaviors for the first time ever. This achievement, in turn, creates a gateway of opportunity, helping them gain assurance and self-reliance in many other aspects of their lives.

“The program serves a critical community need in a creative, humanitarian way that involves a collaboration among our skilled and dedicated faculty, college students who are preparing for careers in the field of special education, and young people with and without developmental disabilities,” said Dr. Kathleen Feeley, assistant professor of special education and literacy at C.W. Post and founder of the Center for Community Inclusion. “The program helps students with developmental disabilities to build self-esteem and independence.”

Lose The Training Wheels is a national organization that uses adaptive equipment, trained professionals and volunteers. With 75 minutes of instruction each day for five days, approximately 85 percent of participants learn to ride a conventional bicycle independently. Sponsors include Mineola Bicycle, Fitness & Mower and Kelly Development.

The Center for Community Inclusion at C.W. Post is dedicated to providing resources to school districts, service providers, and families so that individuals with disabilities will meet with success in inclusive environments.

The Down Syndrome Advocacy Foundation is a not-for-profit organization founded by a group of individuals who have children or family members with Down syndrome, dedicated to ensuring that individuals with Down syndrome have equal access to schools, leisure activities, employment, and housing.

Sunday, July 3, 2011

Jumping for Jacob Contributes $30,000 Childhood Cancer Research Grant


Rally Foundation, a national non-profit organization committed to research to fight childhood cancer, announced it will be distributing $30,000 to fund research at Northwestern University-Chicago Campus on the biology and targeted therapy of childhood Acute Lymphoblastic Leukemia (ALL) in patients with Down Syndrome.

Funding for this grant was made possible through Jumping for Jacob, a family fundraising event honoring 11-year-old Jacob Moore who has Down syndrome and is currently battling leukemia.

Diagnosed in November 2009, Moore is a Rally Kid, a child who has fought or is fighting cancer, and is currently in the middle of his three and a half year treatment plan. Jacob lives in Alpharetta with his Mom and Dad and brother, Jared.

“Through the grant provided by Rally Foundation in conjunction with fundraising efforts from Jumping for Jacob, we are taking one step closer to understanding the link between Down Syndrome and ALL,“ said Dr. John Crispino, the Rally-funded researcher at Northwestern University. “This research will lead to continued breakthroughs in successfully treating the disease in patients with Down syndrome and allow us to learn more about the varying effects of current treatments.”

Rally’s grant at Northwestern is a part of the collective $700,000 in childhood cancer research grants made nationally this year. In its first five years, Rally has given more than $2.2 million in grants across the country in its efforts to find better treatments with fewer long-term side effects. These grants support more than 50 projects nationwide that include young investigators awards, research nurses and fellowships. For every dollar Rally receives, 93 cents goes to support its mission, according to independently audited financials.

“Communities and families, such as Jacob’s, across the country have joined Rally in supporting the need for more research,” said Dean Crowe, Founder and CEO of Rally. “It is our hope that, one day soon, new and more effective research will eliminate all childhood cancer.”

Saturday, July 2, 2011

Camp Buddy bridges the gap between school years


Brenna Heape’s tiny 7-year-old frame balanced atop two scooter boards as she glided across the floor, pushing and pulling a rope. After a few successful reps her face lit up, and she knew that she’d done well.

As Heape completed the set of therapy during the “motor labs” portion Camp Buddy, her smile was contagious, caught by occupational therapist Melinda Hawkins. Hawkins was holding one end of the rope and encouraging Heape through the exercise, and the two shared a few excited high fives when they finished.

Camp Buddy ended Thursday, after three days last week and three this week at the First Baptist Church of Springfield. The camp, sponsored by the Lowcountry Down Syndrome Society, offers a therapy-based curriculum designed especially for children with Down syndrome.

“It’s amazing,” said Molly Marchese, a founding member of LDSS and proud mother of Ella, 5, who has Down syndrome. “You watch them do something that they couldn’t do last year, and you work hard on it, and then they come back to camp and they’re doing it. So it’s really gratifying for the therapists to see their hard work pay off and for the parents.”

This is the third year that Camp Buddy has been available locally. The camp is intended to bridge the gap between school years so that these children can retain what they’ve learned in school and prepare for the next year.

Marchese said that the camp is also a way to offer essential physical, speech and occupational therapy to children whose parents may not be able to afford such specialized treatment, especially in adverse economic times.

Yet, Ella and the rest of the children continue to make strides. Wednesday morning, Marchese couldn’t contain her emotions at the thought of her husband, Joe, seeing their daughter ride her bike for the first time, a skill she conquered at camp.

“I can’t wait for him to see her ride her bike,” she said. “He’s going to be floored. But you take it for granted, you know; you think all kids know how to ride a bike.… You’re so proud of them. You love all your children; you’re so proud of all of their accomplishments, but to watch them reach a milestone, it’s just overwhelming this joy. They bring so much joy in to your life. To watch them realize they’re accomplishing something, it’s awesome, as a mom.”

Each day the children follow a regimen of therapy with special education teachers, therapists and volunteers. They work their fine, oral and large motor skills while having fun, singing along to music, working on the computer and riding bicycles, something new this year. They practice counting, reading and writing through programs designed specifically for people with delayed learning.

“They can do all of these things,” said Marchese. “It just takes a little extra effort, a little extra work, a little extra patience and time, but they can do the same things that their typical peers can do.”

The LDSS was founded in 2006 by Candy and John Bogardus, who have a 6-year-old daughter, Lainey, with Down syndrome. Candy Bogardus said that she and her husband went looking for a local support system and found the closest groups in Jacksonville and Atlanta.

In addition to Camp Buddy, which accommodates Effingham and Chatham counties, the group provides new parent packets for new parents of children with Down syndrome with information about the genetic chromosomal disease and early intervention therapy.

“When Kristen (Fears) was born, I didn’t know anything about Down syndrome,” LDSS member Wendy Fears said of her daughter. “What you did know was all negative things.”

Fears said that her mother never thought Kristen would be able to read, and that through early intervention and therapy, Kristen is able to play ball and dance at recitals like other children. She said that the expectations of this generation are far beyond those with Down syndrome before them.

“Their quality of life is going to be phenomenal because of things like (Camp Buddy),” said Marchese. “They’re going to be productive members of the community and they already are.”
The group also sponsors a Night of Champions award banquet, honoring businesses that employ people with disabilities and those employees.

“Our whole goal with that is to recognize that these people are making a difference,” said Bogardus, also secretary of LDSS, “and we invite other businesses to show them how they could become a part of that difference.”

Marchese said that the LDSS, while still only able to offer Camp Buddy to school age children, hopes that as the Buddy Walk grows, more people will offer to run camps for teenagers and adults with Down syndrome, catering to those needs.

Bogardus said: “We just want to, at this stage, help (our children) to be as successful as possible as they get older and to realize that they don’t have to place any limits on themselves. By doing that, we help the community to not want to place limits on them, because that’s another goal of ours is the community awareness that our children are just children and people with Down syndrome are just people.”

Friday, July 1, 2011

impact of Minnesota government shutdown


Angry Minnesota residents were fuming Friday over the state government shutdown — delaying the issuance of marriage licenses, evicting campers from state parks and furloughing about 23,000 nonessential government employees.

“My son has Down syndrome, and he will lose his state-funded job at Functional Industries, which is out in Buffalo, Minn. We were sent a letter from his state-funded house but as of now, he will still be able to live there. Totally innocent victim,” said Carolyn Bauer, of Albertville, Minn.

Summer literacy program to boost communication skills

Jill Clements-Baartman knows what a difference speech can make in a person's life. Since she began working with people with Down syndrome in the early 1980s, she has seen a world of opportunities open up for those who develop their language skills.
"It's extremely important,"says Ms. Clements-Baartman, a speech pathologist involved in a summer literacy program being launched next month by the Durham Down Syndrome Association.
"They're very capable individuals and basically everything in our daily lives depends upon effective communication so the more that we can support effective communication, as well as literacy skills, the greater access that they have to activities in the community."
The program offers participants, ages 10 and older, a chance to interact with one another while engaging in various activities, including pottery, wood sculpting and bowling.
"On the Monday and Tuesday, there are specific language and literacy goals for each of the participants and then the Thursday, they work at home to develop a presentation and that can be a whole range of different things, depending on the individuals'abilities,"says Ms. Clements-Baartman.
The Durham Down Syndrome Association is a non-profit charitable organization, which supports families and other members of the community in working to improve life for people with Down syndrome.
Ms. Clements-Baartman, who's been involved with the organization for nearly 20 years, currently runs a direct therapy program called Talking, Language and Communication for children with special needs at a nursery school in Whitby.
Speech improvement is one of the biggest challenges for people with Down syndrome, according to association chairman Walter Heeney.
"Parents'biggest problem when their child is one to five years old is wondering how to get them to express themselves so you've got them learning a bit of sign language and anything you can before they get into the school system,"he says.
Equipped with heightened communication skills, those with Down syndrome -- including Mr. Heeney's daughter Jan, who has been working as a librarian assistant at a school in Pickering for the past 13 years -- can make the most of their lives, he adds.
"I've got young kids in this program that are 20 and they're coming out of high school next year. It's our challenge to help them get a job, whether it's volunteer or paid. It's about having a position and somewhere to go to be part of a team."