The Buddy Walk on Washington's Impact

This is a family's recount of the Buddy Walk on Washington from the blog Particularly Perfect.

We walked on Washington.  We conquered Capitol Hill.  We spread our message to our Congressman and Senators in an attempt to improve the futures of all people with disabilities.

Congressman Sessions spoke about being a fraternity brother of Pi Kappa Alpha...and I have always been a proud sorority sister of Alpha Xi Delta, but Congressman Pete Sessions, of Texas, reminded me just how amazing greek organizations can be.  Congressman Sessions has two sons, Bill {president of his chapter of Pi Kappa Alpha} and Alex {who just happens to have Down syndrome}.  Holding back tears, the congressman explained how proud he is of his fraternity.  This  weekend, Alex was initiated as an honorary brother.  But his pride reaches beyond that.  The congressman has received texts and emails, from men who have never met Alex, stating they couldn't wait to call Alex their brother.  That is the true meaning of brotherhood.  Ties that reach far beyond friendship.  Inclusion.  At the end of the day, that's all we really desire.  To be included.  All of us.  Despite our differences.

Representative Cathy McMorris-Rodgers has a son, Cole, that just happens to have Down syndrome.  I truly believe that some people have been placed in positions of power to help others.  She is one of those people. Her political strength will no doubt help many people with Down syndrome in years to come.  I am so grateful for her.

Dr. Brian Skotko - I don't even know where to begin...I am in awe of this man.  Dr. Skotko is an amazing doctor but even more amazing brother.  His sister, Kristin, just happens to have Down syndrome.  Dr. Skotko is a board certified geneticist at the Children's Hospital Boston.  He has written books, conducted important studies and quite simply made a huge impact in the lives of people with Down syndrome...and their families.  He couldn't be more amazing...

What was our message?  Sign the ABLE Act.  Today Kayla cannot own more than $2,000.  She cannot be worth more than $2,000.  Truth.  Sad but true.  Why?  She receives medical benefits from the government.  Most people with disabilities have medical benefits provided by the government but are not able to be worth more than $2,000 or they will lose those benefits.  Kayla can't get money for birthday presents.  We can't save for her college or her future.  We cannot leave her our house or a car.  Her grandparents cannot leave her anything in their wills.  She can't be worth more than $2,000.  Well...there is one way to save money for her future...a Special Needs Trust...but this trust has several issues...
1.  It doesn't transfer from state to state should you move.
2.  It is super complicated.
3.  It costs several thousand dollars to set up...so...truth be told, we'd be using every dollar we would have to give to Kayla just to set up the trust.

And why not allow her the same right as everyone else?  Why should we not be able to save for her future?  She is a person, with a voice...and should have the same rights.  This is why we walked.  She is the reason we fight for equality.  We fight for Kayla and her 350,000 friends living in the United States that also have Down syndrome.  We fight for them.  All of them.

If Kayla were of working age today...why work?  Why attempt to be a contributing member of society if she would be penalized for it?  Many people with disabilities are fully capable of working but don't because it doesn't make financial sense because they will lose their medical benefits.  The system is broken and must be fixed.

So what is the ABLE Act?  If passed, it will be a vehicle of savings that is similar to a 529 education account.  It will allow people with disabilities to save for their future without losing their medical benefits.  The one difference is it doesn't have to be used for education...because not all people with disabilities are on a post-secondary education track...and that's ok...but they should not be penalized for trying to be independent, contributing members of society.  That's my soapbox.  I'll step down for a moment...but if you feel inclined, contact your local congressmen and senators and ask them to sign the ABLE Act, for Kayla.

"Go Talk" communication board helps student participate

from Otago Daily Times by Lucy Ibbotson:

Eight-year-old Caleb Smith is discovering a whole new world at his fingertips thanks to a simple piece of adaptive IT equipment which is breaking down the communication barriers associated with his Down Syndrome.

• Charity auction planned

The Wanaka Primary School pupil is among the many children who have received support from the Upper Clutha Children's Medical Trust since it was formed in November 2009.

Speech and language skills are an area of particular difficulty for most young people with Down Syndrome. However, after receiving a "Go Talk" communication board last year with funding from the trust, the transformation in Caleb had been remarkable, his teachers said.

"It just immediately broadened his options for communicating," the school's special education needs co-ordinator, Leanne Little, said.

"He's trying to verbalise more, it's encouraging him to talk." Special needs teacher Julie Fitzgerald has also been amazed at Caleb's progress since he started using the board, which plays simple pre-programmed words and phrases at the touch of a button.

"It's just given him a voice really," Mrs Fitzgerald said.

"More than anything it also changes people's attitudes to him because people realise that he's actually got something to say. It's not only changed Caleb's life, but it's given people around him a new perspective of him.

"It just showed we'd been underestimating him." The new communication tool had also revealed Caleb's "cracking sense of humour", she said.

Caleb's mother, Philippa Smith, had noticed an obvious change in her son at home, too.

"He's a bit more confident that we understand what he's saying," she said.

Members of the trust were thrilled the support they had given Caleb's family was making such a positive difference.

"It seems to have opened a new world for him and that's really what we hoped would happen," trust chairman Peter Wilson said.

"It really encourages us with our fundraising as well when you see results like this," trust member Yvonne Gale added.

The trust provides financial support to Upper Clutha families who are finding it difficult to meet the costs of medical treatment for their children. It has received a steady flow of applications for a diverse range of medical requirements since it was established. It has supported 36 families to date by giving funding for specialist treatment, transport and accommodation costs and other activities which can help manage medical problems such as physiotherapy and modified wheelchairs.

Texas Teen With Down Syndrome Can Keep Her Kangaroo

from KWTX.com:

A suburban Texas homeowners association has backed off of its demand that a family get rid of a kangaroo that’s the beloved companion of a teenage girl with Down syndrome.

A suburban Houston homeowners association has rescinded an order that a family get rid of a kangaroo that's become the beloved companion of a 16-year-old girl with Down syndrome.

The Estates of Legend Ranch Homeowners Association wrote to Nick and Jeni Dreis last week, demanding the removal of Mike, a 6-month-old red kangaroo that's the pet of their daughter Kayla.

After intense Internet publicity, the HOA board reversed itself.

Spokesman Jeff Crilley says it was "unaware that the kangaroo was being used for therapy purposes."

Nevertheless, Crilley said the board expects the family will "be working in good faith to find a more suitable home for the animal."

The family intends to keep Mike for a year before moving him to a wildlife park they're planning.

Coffee group gives military families support

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The Parade That Cares and Shares

from LI Herald:
The Rockville Centre St. Patrick’s Parade is set to take place on March 24.

This year the parade has chosen three charities to be the beneficiaries of the St. Patrick Day Parade Committee’s almost year-long fundraising endeavors. The three charities are: The Association for Children with Down Syndrome (“ACDS”), The Ronald McDonald House of Long Island and the Educated Canines Assisting with Disabilities.

Located in Plainview, the Association for Children with Down Syndrome was established more than 40 years ago and serves approximately 700 individuals with Down Syndrome and other developmental disabilities.

The Ronald McDonald House of Long Island, which opened in 1986 in New Hyde Park as the 100th of the more than 300 Ronald McDonald House programs around the world, has a mission to give shelter and comfort to the approximately 1,000 families with a seriously ill child in a local hospital it serves per year.

Educated Canines Assisting with Disabilities, Inc. (“ECAD”) is a national non-profit organization incorporated in New York that primarily serves the East Coast through its mission of enabling people with disabilities to gain greater independence and mobility through the use of specially trained dogs.

For 16 years, Rockville Centre has hosted ‘The Parade That Cares and Shares.” During that time, 45 charities have benefited and $676,000 has been awarded from the money raised through a variety of fundraisers from September through March. Coming on Jan. 27 at 7 p.m. is the annual Taste of Rockville Centre that is held in the St. Agnes Parish Center Local restaurants participate in this event every year and bring a sampling of their wonderful food as well as wine tastings from a number of different vintners.

On March 11, CJ’s Coffee House will once again host a spectacular breakfast fundraiser from 7 a.m. to 1 p.m., and on March 23, the 16th annual Grand Marshal’s Dinner will take place at the Rockville Centre Links honoring this year’s Grand Marshal Kathleen Alcock, the owner and operator of Kathleen’s of Donegal on North Park Avenue.

To learn more about ‘The Parade That Cares and Shares” you can visit http://rvcstpatrick.com/. Purchase its Shamrock Steps for $2 each, to mark the number of steps down the parade route or participate in its 50/50 raffle which is drawn on the night of the Grand Marshal’s Dinner.