Tuesday, March 24, 2009

From The Arc of the United States

President Obama - Meet with our Constituency

March 23, 2009

President Barack Obama
The White House
1600 Pennsylvania Ave., NW
Washington, D.C. 20500

Dear Mr. President:

On behalf of the over four million individuals with intellectual and developmental disabilities and their families, The Arc of the United States commends you for your immediate and sincere apology to Special Olympians regarding your comments on “The Tonight Show.” We recognize the deep commitment of your administration to reach out to people with developmental disabilities and the proposals you have advanced for implementation of policies that will improve the lives of our constituency.

However, rather than simply apologizing and putting this incident behind you, we would like to suggest that you seize this opportunity to advance public understanding of people with intellectual and developmental disabilities and the challenges they and their families face on a daily basis.

As the nation’s oldest and largest organization representing people with intellectual and developmental disabilities and their families, The Arc hears from countless families emphasizing that it is only when basic services and supports are in place that people have the luxury and freedom of participating in sports activities and events such as Special Olympics. Much of the sorrow and anger expressed by individuals with disabilities and their families in response to your comment stems from these realities.

People with intellectual and developmental disabilities often live lives that are rife with bullying, hate language and relegation to secondary status – all of these emblematic of the shadows of exclusion. They understand that public attitudes, misinformation and negative stereotypes are the biggest obstacle to their inclusion in the community. Join us in breaking down the attitudinal barriers that stand in the way of full inclusion.

We urge you to convene a White House meeting with individuals with intellectual and developmental disabilities, parents and family members and advocates to discuss some of the following critical issues facing this community:

Ø The 700,000 individuals and their families on Waiting Lists for home and community based services. This also includes elderly parents who are the caregivers for their 50-60 year old offspring with intellectual disabilities and young adults seeking to transition from school to community life;

Ø Recent cases of abuse, brutality, exploitation, and neglect against people with intellectual disabilities that have surfaced in the last few weeks in Iowa and Texas and the fear that similar hidden abuses are occurring elsewhere;

Ø The institutional bias of the Medicaid system and the lack of adequate funding for supported housing, supported employment, personal assistance, respite care, and the family support necessary for people to live in their communities without costly and unwarranted institutionalization; and

Ø The need to address long term care, services and support as part of the current health care reform initiative.

In addition, instruct the Department of Education to utilize a portion of its discretionary American Reinvestment and Recovery Act funds to support school-based initiatives to promote respect for people with intellectual and developmental disabilities.

Finally, we urge you to use the bully pulpit of your office to catalyze public and legislative support for the Community Choice Act and the CLASS Act, two important pieces of legislation that will help to support the inclusion of people with disabilities in all aspects of community life.

Through these actions you can then shift perception and help alter the pervasive societal attitudes that form the obstacles to people with disabilities “shining” not just within the competitive sports arena but also in the workplace, in their own homes and apartments, attending classes at a community college, worshipping within their faith communities, and so much more.

Mr. President, while society has made many strides in advancing the rights and promoting the inclusion of people with intellectual and developmental disabilities, we are cognizant that much work remains. We look forward to collaborating with you on these important goals that will move us closer to an all inclusive society.


Peter V. Berns

Executive Director

Saturday, March 21, 2009

In Honor of World Down Syndrome Day!

A blast from the past....look at my little guy then. Wow how time fly's. Oh ya that roadking would fly too.....

My Buddy Ray!

What DADS Has Done For Me
Posted by Ray Glowner on Wednesday, Mar 18, 2009

What DADS has done for me as a person and a father can not be described in a paragraph or two. I could write an entire book on how DADS has changed my life. One day I may, but for now, I will give some high points of my time as a DADS member, and of the time, that for me, set my journey as a member of DADS in motion.

Several years ago around 2004, when DADS was growing and we needed some direction, James May, Director of The Fathers Network in Washington St. came to Indianapolis to help us, as a group, get better organized. We held a brain-storming session with maybe 10 guys. We were talking about what we needed as fathers and how we can expand to help other fathers of children with Down syndrome. We were getting great information and making progress.

After a while, we were talking about how we were informed of our child’s condition and our response to the news. Some of the guys told their stories and I finally told mine. I haven’t told anyone of my experience for six years, and on that day, in a meeting with ten other men that I barely knew, I told of when I went outside at the hospital the night after Katie was born, at 1 in the morning in February and cussed God for ten minutes, screaming at him and asking: “Why? You are supposed to be a kind and compassionate God, but now you put this hardship on Stef? WHY?”

After I told about my experience, I had tears in my eyes and the other guys did also. I was embarrassed and told the guys that “if you want to have this kind of support group where we pity each other, I want nothing to do with it.” Those weren’t my exact words, but this is a family letter. I got up, stormed from the room and left. Some of the guys found me and convinced me that this group we are involved in will not be that way. I came back into the meeting and I have never looked back.

I have been with the DADS for roughly eight years, and I have overcome my anti-social ways. I didn’t like being around people, or being “out of my comfort zone”, which meant staying around the house and talking to my two or three friends I had at the time. I became the Social DAD and was responsible for setting up social activities for the kids and ourselves. Isn’t it ironic that I was somewhat anti-social, and became Social Chair? I enjoyed setting up and organizing events. I reckon it is a form of therapy. I have helped with our Buddy Walk and I even volunteered to Chair it one time. I was asked to be Interim DADS President and I ENJOY doing the things I do for and with DADS.

I told one of the guys awhile back about the friendships that have formed within DADS. I work with 150 people, and I may have four “friends” there. I get along with everyone, but I will not confide in them the things that go on in my life. Thre are only a couple of people I can do that with.

With the DADS group, I have made countless friends. These are guys I hang out with: go to a race or a football game. Go fishing with and have a drink or dinner with. These guys are my friends in every sense of the word. They have been there for me on countless occasions, whether I was using them as a “sounding board” for a problem, or to get me out and relax. Or they call just to say “Hey”.
I owe my well being to these guys, because if it weren’t for DADS, I cringe at where and what I would be now. I want to spread the mission of DADS, because if they could help me, I know that they (we) can help anyone

Awesome story Dude!

Spread the Word to End the Word!

It is time to “Spread the Word to End the Word” and on 31 March 2009 Special Olympics is calling for a national day of awareness for America to stop and think about their use of the R-word. That R-word is not “recession,” but something more hurtful and painful – “retard.”

Wear the Spread the Word T-shirt and show your support! Click on the logo above to order yours today.
Most people don’t think of this word as hate speech, but that’s exactly what it feels like to millions of people with intellectual disabilities, their families and friends. This word is just as cruel and offensive as any other slur.

Spread the Word to End the Word will raise the consciousness of society about the dehumanizing and hurtful effects of the R-word and encourage people to pledge to stop using it. America will be asked to declare their support for more respectful and inclusive language, specifically that referring to those with intellectual disabilities.

Created by young people with and without intellectual disabilities, Spread the Word to End the Word is one element of Special Olympics’ vision of a world where everyone matters, where everyone is accepted and, most importantly, where everyone is valued. Leading the way in promoting acceptance of people with intellectual disabilities, Special Olympics opposes prejudice and discrimination, continuously working to dispel the negative stereotypes associated with this population — the use of the R-word being one such stereotype. In a world that has worked to eliminate pejorative racial and ethnic language such as the “N word,” among others, the R-word is gaining popularity.

On 31 March, young people across the country will lead local efforts to raise awareness and collect pledges on www.r-word.org from peers and the community to vow not to use the R-word. Actor and activist John C. McGinley, of the hit show “Scrubs,” is helping with this effort by making national media appearances on behalf of the campaign. On 2 March 2009, he appeared on "The Bonnie Hunt Show."

Send us your plans to Spread the Word at r-word@specialolympics.org. After 31 March, let us know how your Spread the Word event went. Send a report, photos and videos to r-word@specialolympics.org.

Update about Big Dawg Tales

Hello Gang:

A quick update on my blog. While I will continue to write about what ever the heck I feel like, I am going back to the roots of the blog. I started this blog to talk about Nash, life, Down syndrome, Disability issues, and advocacy.

I really got sidetracked into politics as a whole, local, state and national. I have come to the conclusion that I can't fix all the issues that are out there and so many of the activists are kinda scary. So with that said you may notice I have removed a few blog links and added some others. Nothing wrong with the folks I have removed they are good people. But I am going to go back to only working on the issues of the greatest importance to me........Down syndrome, DADS, Education, Employment, Disability rights and all things NASH!

Peace Dude!

World Down Syndrome Day

On March 21st, 2009, World Down Syndrome Day will mark the 50th anniversary of the publication of Professor Jerome Lejeune's discovery of the extra copy of chromosome 21 which causes Down Syndrome.

Now known as trisomy-21 because of the third copy of the 21st chromosome, Down Syndrome was first described by the English doctor, John Langdon Down, in 1866 but until Professor Lejeune's publication in 1959, the ultimate cause of Down Syndrome was unknown.

Professor Lejeune and Dr Langdon Down are regarded as the preeminent contributors to our present understanding of Down Syndrome, not only because of their research into Down Syndrome, but also because each of them contributed much of their own time and money to advocating on behalf of persons with Down Syndrome and their families.

Down Syndrome organisations around the world this year will pay tribute to the pioneering work of Professor Lejeune and celebrate the tremendous advances in the care and social welfare of people with Down Syndrome over the past fifty years.

"Professor Lejeune provided inspiration to parents and professionals who met him, and drew strength and hope from his optimism and his simple and profound dedication to humanity. The Lejeune Institute inParis continues to sponsor research in this area” said Mrs. Penny Robertson, President of Down Syndrome International. “But while there is much to be proud of in western countries in the services provided for people and families with Down syndrome, there is still an enormous amount of work to be done in many countries".

For more information about Down Syndrome International,
please visit www.ds-int.org

For more information about World Down Syndrome Day,
please visit www.worlddownsyndromeday.org

For more information about the next World Down Syndrome Congress,
please visit www.wdsc2009.com

Peace Dude!

The Arc of The United States!

The Arc says people with disabilities are bowled over by President's comment

March 20, 2009

Silver Spring, MD – On behalf of the over four million individuals with intellectual and developmental disabilities and their families, we are deeply dismayed and indeed surprised by President Barack Obama’s unfortunate statement during his appearance on “The Tonight Show” with Jay Leno.

Throughout his campaign, during the transition and in the early months of the new Administration, the President has reached out to the disability community and demonstrated a deep commitment to the issues impacting people with disabilities and their families. When he appointed a Special Assistant to the President for Disability Policy last month, the appointment was heralded by the Administration as “our first step to ensure that we have a strong advocate for people with disabilities at the highest levels of our Administration.” The President has also articulated a comprehensive policy agenda that is of critical importance to people with disabilities. http://www.whitehouse.gov/agenda/disabilities/

The President’s offhanded remark has stirred sorrow and even anger from our constituents. Statements such as these reflect pervasive societal attitudes that people with intellectual and developmental disabilities somehow don’t measure up – that their lives are of less worth. The biggest obstacle to including people with disabilities in community life is public attitudes.

The President may have been talking about bowling but this is not really about sports. Presidential spokesperson, Bill Burton’s, explanation that Special Olympics “gives an opportunity to shine to people with disabilities,” clearly misses the mark. People with disabilities want the opportunity to “shine” among colleagues in the workplace, in their own homes and apartments, in the continuing education class at a community college, in their faith communities and everywhere else. They particularly dislike and are deeply offended by remarks such as that stated by the President.

Full inclusion of people with intellectual and developmental disabilities is the only way we will collectively shift our attitudinal barriers that prevent people from realizing their full potential as contributing members of the community.

Inviting people with intellectual and developmental disabilities into the White House for photo ops of bowling and basketball is not a solution. Instead, The Arc of the U.S. calls on President Obama to convene a meeting of people with intellectual and developmental disabilities, their parents and siblings, and those who support them to discuss the critical issues facing this community, such as:

700,000 individuals and families on waiting lists for home and community based services,
recent cases of abuse and brutality against people with disabilities in Iowa and Texas,
lack of funding for supported housing, supported employment, personal assistants, respite and family support that are needed to enable people to live in their communities and avoid costly and unwarranted institutions,
The ball is now in the President’s court. We await a meaningful response.

Enough Said.......

Peace Dude!

Sunday, March 01, 2009


You know I was thinking today as I watched the happenings over the weekend that at a time when our country needs people working to fix things all I see are the power players aligning themselves for the next election..

Mitt Romney trying again...

Rush Limbaugh and Ann Coulter the poster children for the new Republican party...

And in the Indiana 5th district all kinds of going on's to start that election cycle as early as possible. At least Jim Kittle has endorsed already do I know who NOT to vote for.

Before long Mitch will break his promise to not run again and start running for Senate or more likely President.

Our country is really not in shambles gang. The problem is the same one that I have been talking about for years. Shut wall street down and get back to work and life will be grand once again. Oh ya, turn the tv off and quite reading the paper.

Peace Dude.