Thursday, March 31, 2011

Reece's Rainbow

Reece's Rainbow advocates for children like Andrey through blogs, social networking, and word of mouth. In five short years, with the help of continued donations, the organization has found adoptive families for more than 500+ children with Down syndrome and other special needs around the world. More than $1 million in private donations has been disbursed in the form of adoption grants to make this possible.

Andrea Roberts, founder of Reece's Rainbow draws inspiration from her own experience raising her son Reece who has Down syndrome. Andrea feels that children with Down syndrome invoke reflection on the beauty and innocence that a child brings to the world and that they remind us that the image of God is not confined to our earthly definitions. 

Wednesday, March 30, 2011

Models with Down Syndrome

A modeling agency specifically for children and young adults with Down syndrome is launching this month in Ireland and it is believed to be the first of its kind in the world.
The agency, called “I’m Able 2 Model,” is already representing 20 individuals ages 5 to 33 with the chromosomal disorder. Participants were selected based on the level of confidence they displayed before the camera, organizers say.
In Ireland, Down syndrome occurs in about 1 out of every 500 births. That’s nearly twice the prevalence rate seen in the United States.
The idea behind the agency is to increase representation of people with disabilities in the media, organizers say, adding that they will work to secure jobs for the models in advertising, catalogs and on the catwalk at competitive wages, reports the (UK) Press Association.

Tuesday, March 29, 2011

A story on classroom inclusion

Inclusion in general education classes can be beneficial both to children with Down syndrome and their typical peers. One story of inclusion at work is in a third grade classroom in California.

Monday, March 28, 2011

Toys "R" Us Kids Casting Call

Toys "R" Us is searching for children to model in its Toys "R" Us Toy Guide for Differently-abled Kids. If you have a differently-abled child between the ages of 12 months to 10 years and are interested in having your child appear in the guide, send a casting from along with a photograph to:

Toys "R" Us
One Geoffrey Way, NJ 07470
Attn: Mary Hogarth

Photos will not be returned. Please respond by April 15, 2011. Travel to New York City for the photoshoot required for participants.

For over 15 years, Toys "R" Us has partnered with the National Lekotek Center to produce the Toys "R" us Toy Guide for Differently-abled Kids, giving parents and children with disabilities an easy-to-use selection of toys that offer them the best opportunity for fun and learning.

Saturday, March 26, 2011

Tim’s Place: World’s Friendliest Restaurant

What is Tim’s Place?
Tim’s Place is a unique full service restaurant in Albuquerque, New Mexico serving breakfast and lunch. Our slogan captures exactly who we are and what you can expect when you visit us!

Tim’s Place: World’s Friendliest Restaurant
Breakfast, Lunch, and Hugs. The key differential factor of our concept is the customer service experience. We believe that people have a huge appetite for being genuinely welcomed, connected with, touched, appreciated, and genuinely cared for. We believe many experiences in our busy modern lives are impersonal, sterile, and devoid of genuine human connection.

Restaurant owner Tim Harris wants to offer a welcoming environment where you can grab something to eat while meeting friends. He didn’t let Down Syndrome get in the way of achieving his dream of opening a restaurant at Academy and Wyoming in northeast Albuquerque.

Who is Tim?
Tim Harris serves as the inspiration for our unique restaurant concept.
Everybody needs a Tim hug.
What is a Tim Hug?Calorie Free, Guilt Free. Sweet, but not too sweet. Guaranteed to improve your lease on life! Ask your server.

Wednesday, March 23, 2011

Call to Action from NDSS for NIH Funding


Dear friends and colleagues,

We are writing this urgent e-mail to ask for your help!

The National Institutes of Health (NIH) is the largest government funding organization for research. The NIH has issued a “Request for Information” regarding a national Down syndrome registry, research database and biobank. They are expecting responses from the Down syndrome community and from anyone who is interested in supporting people with Down syndrome. Every e-mail counts! 

If we have a large and clear response the NIH will be more likely to help us fund a Down syndrome registry, research database and biobank. The deadline to respond is Friday, April 1. Please help us!!

  1. E-mail your conclusions and recommendations about a Down syndrome patient registry, research database and biobank to by April 1st
  2. Please cc: us at so we can keep track of the responses

Example of a letter of support:

To Whom It May Concern:
It is morally, economically and scientifically important that the National Institutes of Health increase funding for people with  Down syndrome. We are pleased that the Linda Crnic Institute for Down Syndrome and the Global Down Syndrome Foundation have taken the lead with the NIH in this regard. We support and agree with the Linda Crnic Institute’s assessment of what the parameters should be for our future centralized Down syndrome patient registry, database and biobank. Please continue to work towards this end.  We appreciate NIH’s renewed interest in Down syndrome research and we appreciate NIH addressing the historical and alarming disparity of funding for research that would improve the lives of people with Down syndrome.


For those of you who would like to learn more, we invite you to attend one of our webinars.  Please follow the appropriate link to sign up:

Down syndrome is the least funded genetic condition by the NIH yet it is the most frequent chromosomal disorder. Please help us get our fair share of research dollars that will help people with Down syndrome live healthier and more productive lives.

Michelle Sie Whitten
Executive Director, Global Down Syndrome Foundation
(Mom to Sophia Kay Whitten who happens to have Down syndrome)

Tuesday, March 22, 2011

White House Disability Group Monthly Conference Call

Next White House Disability Group Monthly Conference Call - March 31

In order to keep Americans with disabilities and other interested parties informed about the Obama Administration's disability-related efforts, the White House Disability Group is hosting monthly calls to provide updates on issues such as key political appointments, employment, civil rights, health care and transportation, as well as introduce staff who work on disability issues in the federal government.

The next call will be held on Thursday, March 31 at 5:00 PM EDT. Please dial in five minutes before the scheduled call time. It will feature remarks from U.S. Secretary of Education Arne Duncan, and include introductions to other Obama Administration personnel.

Details for the call are as follows:
Dial in for listeners: United States: (800) 230-1059   
Title: White House Disability Call (use instead of code)

Monday, March 21, 2011

A Special March 21st

Today we celebrate World Down Syndrome Day. How many people can that possibly affect, you may ask? Actually, about one out of every 800 babies born.

On March 21, Down syndrome organizations throughout the world participate in events to raise public awareness. The date was chosen to signify the uniqueness of Down syndrome in the triplication of the 21st (trisomy) chromosome.

Today we celebrate those individuals born with an extra chromosome, or “designer genes,” as some parents like to say. We celebrate the fact that they are more like their peers than they are different from them.
Down syndrome is not a reason to pity or feel uncomfortable around a person or family. A person with Down syndrome typically has some delays in the areas of gross and fine motor skills, speech and cognitive development; however, just like all of us, capabilities and skills vary from person to person.
Today we take time to create awareness about the fact that these individuals are really not that different from you or me.

Babies with Down syndrome need to be fed, changed, held and loved. Toddlers with Down syndrome enjoy playing and go through their “terrible twos.” Children with Down syndrome ride bikes, go to school and participate in Scouts, dance and sports. Adolescents with Down syndrome rebel against their parents and have raging hormones. Teenagers with Down syndrome go to high school and begin determining their future path, be that vocational school, a job or, for some, college. Adults with Down syndrome have careers, participate in religious communities, fall in love, get married and live long, happy lives.

So today we celebrate.
From A day to celebrate some unique individuals

Sunday, March 20, 2011

Lauren Potter and Glee Recognized at AAPD Gala

The American Association of People with Disabilities (AAPD) held its 2011 Awards Gala Tuesday evening, which brought together leaders from government, business and the disability and civil rights communities.
AAPD honored Glee's cast and creative team for leading the way in how young people with disabilities are perceived in popular culture.
Actress Lauren Potter, who plays the role of Becky Jackson on "Glee," accepted the award on behalf of "Glee."
Potter has Down Syndrome and said she will use her fame to help change negative perceptions about people with disabilities and will work to stop bullying by teaming up in an anti-bullying campaign with

Heart-Warming Moment with Prince William

Derelle Linneth, who has Down syndrome, has idolized Prince William for years, so when he entered the tent full of Grantham locals, she saw her chance to say hello.
"She just went, 'Yes!' and she grabbed him," sister Marilyn Hilan said. "She looked at him and said, 'I love you, William' and he said, 'You get another cuddle then'."

Senate Hears David Egan's Testimony on Employment

On March 2, 2011 Senator Tom Harkin (D-IA), Chairman of the Health, Education, Labor and Pensions (HELP) Committee convened the first in a series of hearings to examine how to improve employment opportunities for people with intellectual disabilities.
According to Senator Harkin’s press release: 

“So, this hearing is one of the first steps to address this problem of under-participation in the workforce by persons with disabilities.  I am asking my colleagues to join with me in working toward the great goals of significantly increasing the employment rate, decreasing the poverty rate, and increasing the quality of life of persons with disabilities.  The important work we have done since the landmark passage 35 years ago of the Individuals with Disabilities Education Act, and 20 years ago of the Americans with Disabilities Act, dramatically improved the lives of persons with disabilities. We have addressed education and we have addressed access.  Now we must address employment and economic well being.

David Egan, a young man with Down syndrome and a board member of the Down Syndrome Association of Northern Virginia testified about his job as a distribution clerk at a consulting firm in Washington, D.C.  In his testimony Mr. Egan stated:

“I am treated like other employees at Booz Allen Hamilton.  I receive benefits, time off and a 360 degree assessment like everyone else.  I go to compulsory training, all hands meetings, and attend corporate events.  The company cares about my personal and professional development. . . .I feel that I am part of the team.”

Saturday, March 19, 2011

Light The Way Campaign

On Monday, March 21, World Down Syndrome Day,"the West Virginia Governor's Mansion will be lit in blue joining the Light the Way campaign which raises awareness of Down syndrome cognitive research."

West Virginia First Lady Tomblin stated "in recent years, biomedical research advancements designed to treat intellectual challenges associated with Down syndrome have been made. These advancements may enable individuals with Down syndrome to improve their memory, learning and communication skills. In an effort to raise awareness of this important research, I encourage all West Virginians light their homes in blue on the 21st."

"in the United States, approximately 400,000 individuals are affected by Down syndrome. As medical research has advanced, most individuals with the condition will outlive their parents. The biomechanical research may increase life opportunities for those with Down syndrome."

"First Lady Tomblin joins First Lady Mary Pat Christie of New Jersey and other First Spouses in an effort to raise awareness of the non-profit group Reserch Down Syndrome's efforts to continue cognitive research. In addition, the Light the Way campaign seeks to motivate both the Down syndrome community and general public to empower individuals with intellectual disabilities to reach their fullest potential and lead independent lives."

Thursday, March 17, 2011

NDSC National Convention

This year's NDSC Convention is August 5-7, 2011 in San Antonio, Texas. If you have never been to a national convention it is definitely worth trying. It's often referred to as a family reunion which actually describes it well. In addition to the excellent presentations there are also great parties and an amazing way to build your network of friends.

From the NDSC:
We know you won't want to miss a minute, so be sure you schedule your trip to arrive by early Friday afternoon (August 5), and plan to stay until Sunday afternoon (August 7) at 1:30. (If you are planning to attend pre-conference sessions, you'll need to be there for an 8:15 am start on Friday morning.)

Here's who's coming...from the United Kingdom, founder of Down Syndrome Education International, Sue Buckley; from Phoenix, AZ, special education and inclusion expert, Michael Remus; self advocate and actress Lauren Potter, from the award winning television show,Glee; self advocate and actor Christopher Scott, from the film My Brother(and NDSC's More Alike Than Different campaign); stars of the HBO documentary, Monica & David, Monica Walters Martinez and David Martinez will present along with the film's director, Alexandra Codina; and finally the Dionysus Theatre Group from Houston will perform!

Look for convention registration to open on the NDSC website later this month.

Tuesday, March 15, 2011

Down Syndrome & Alzheimer's Research

A new center combining academic research with the treatment of adults with Down syndrome – one of the first in the country – has opened at the University of California, San Diego School of Medicine.
A primary focus of the new Down Syndrome Center for Research and Treatment (DSCRT) will be investigating the connection between Down syndrome and Alzheimer’s disease.
“About 25 percent of individuals with Down syndrome over age 35 increasingly show clinical signs and symptoms of Alzheimer’s type dementia,” said William Mobley, MD, PhD, chair of the UCSD Department of Neurosciences, DSCRT executive director and a leading expert in the neurobiology of Down syndrome. “By age 60, more than half show cognitive decline.”
This reality – combined with the fact that advances in health care and education mean that people with Down syndrome are now living longer, fuller lives – underscores the need for more research and better patient care, according to Mobley. Ultimately, he envisions DSCRT as a highly integrated, comprehensive system for conducting research and caring for Down syndrome patients of all ages. “Which, to our knowledge, would represent a first,” Mobley said.
Major emphasis of the new UCSD center will be placed on better understanding the biology of brain circuit formation and the causes of Alzheimer’s disease in people with Down syndrome. A recent study, for example, suggests that boosting norepinephrine – a neurotransmitter that helps nerve cells communicate – can reverse cognitive decline and even improve cognition in mice genetically engineered to mimic Down syndrome.
“I believe it might be possible to treat Down syndrome early in life, preserving and restoring cognitive function before it is permanently lost,” Mobley said. “And doing so might also prevent the damage that eventually results in Alzheimer’s disease.”
From Down Syndrome-Alzheimer's Link by University of California, San Diego Health Sciences

Monday, March 14, 2011

Dads Appreciating Down Syndrome (D.A.D.S.)

From the D.A.D.S. website:

Dads Appreciating Down Syndrome, or D.A.D.S., is a committee or community group (within a local Down syndrome support organization) of fathers of children who happen to have Down syndrome. We hesitate to call our self a “support group”, even though we do, in many ways, support each other.
The 3 foundational pillars of D.A.D.S. are SupportAction and Fellowship. You won’t find us in a church basement drinking warm coffee and whining about having children with Down syndrome. Instead, you’ll find us out in the community coaching our kids’ sports teams, participating in our children’s IEPs, volunteering at local Down syndrome fund-raising events, and even sponsoring fund-raising events of our own.
The cornerstone of D.A.D.S. groups is the monthly meeting where members come together to share insights and experiences. Face it: there are certain responsibilities that generally fall on the shoulders of the father. Having a child with special needs often affects how we approach those responsibilities.
We invite expert speakers to discuss medical, educational, financial, social, and any other issues that affect our children’s lives. And of course, we share stories and experiences that are unique to fathers of children with Down syndrome. Your colleagues at the office may not understand your excitement when your 5 yr old makes “poopie” on the toilet for the first time, but other D.A.D.S. will, because we’ve all been there. 

Sunday, March 13, 2011

My Friend Has Down Syndrome

My Friend Has Down Syndrome by Amada Doering Tourville

My friend Sarah has a disability called Down Syndrome. But that doesnt matter to us. We tell jokes and laugh, go to ballet class together, and have a lot of fun. Im glad Sarah is my friend!

Friday, March 11, 2011

World Down Syndrome Day 3/21

The Brazilian Federation of DS put together a clip in honor of World Down Syndrome Day, 3/21. The song, Diversity, was written by renowned Brazilian singer/songwriter, Lenine, and is very beautiful and powerful. There are subtitles in English and Spanish if you click on the bottom right corner of the screen. This year... the theme is Inclusion going on: Multiply this idea! Share it around!
March 21, 2011 marks the 6th anniversary of World Down Syndrome Day and each year the voice of people with Down syndrome, and those who live and work with them, grows louder. But there is still so much more we can do.
There are lots of ways to participate on and around 3-21. Here are some proactive initiatives:
  • Share your World Down Syndrome Day story with the new 3-21 section in the My Great Story public awareness campaign.
  • Watch the five My Great Story PSAs starring the NDSS celebrity Ambassadors.
  • Watch Milestones, the new NDSS video, which stars four families as they reflect on the milestones that their children have achieved and those they hope they will accomplish.
  • Sign up to receive NDSS policy action alerts and learn how to get in touch with your elected officials to advocate for people with Down syndrome.
  • Visit the World Down Syndrome Day site to learn what people in your area and around the globe are doing to celebrate 3-21.
  • Donate $3.21 or the amount of your choice to your advocacy group.
Spread the word! The more we share, blog, tweet, post and talk about World Down Syndrome Day the more we raise awareness for people with Down syndrome and all of their achievements and abilities!

Thursday, March 10, 2011

Medicaid - get it while you can

One in three children nationwide rely on health services provided through Medicaid. Politicians from at least five states have threatened to withdraw from the Medicaid program, and nearly all state governments have taken or are currently considering steps to reduce their Medicaid costs.
While states are prevented from redefining eligibility standards to exclude currently eligible children, they may eliminate coverage for services not specifically required by federal Medicaid regulations, like prescription drugs, dental care or therapy services. Mississippi, for example, has already cut benefits for children with mental health conditions and disabilities like Down syndrome and cerebral palsy.
Kendra Huglin has Down syndrome and she explained to lawmakers that she soon hopes to become independent, but would rely on weekly check-ins as a safety net for crisis help. But the current plans in Idaho would cut those benefits.
Advocates are concerned that they may lose the last bit of funding they receive from Kansas state grants, about $3.5 million, which Gov. Sam Brownback has indicated he may cut from the 2012 budget. More than 300 recipients who depend on the grants because they aren't eligible for Medicaid would suddenly be without any government support, according to Starkey officials.
GAO's analysis of data showed children with Down syndrome received, on average, five times more outpatient care (such as care in an urgent care facility) and over two times more office-based care (such as care in a physician's office) than children without Down syndrome. In addition, children with Down syndrome have an increased risk of certain medical conditions and were hospitalized, on average, nearly twice as often and stayed twice as long as other children. The total average medical expenditures for children with Down syndrome were an average of five times higher than those for other children. However, both total expenditures and the difference in expenditures decreased substantially as the two groups of children reached 3 years of age.

How to Apply for Medicaid:
  1. Understand that Medicaid is a state-run program that provides medical insurance. Each state has different eligibility requirements and different application procedures.
  2. Know that if you receive SSI (Supplemental Security Income) from the Social Security Administration, you will probably qualify for Medicaid, but you can also get Medicaid without having SSI.
  3. Recognize that there have been recent limits placed on this program at the federal level, so the benefits are not as wide as they used to be.
  4. Contact your local state Department of Social Services or Human Services to apply. Your state may have a different name for this agency. It is the agency that provides food stamps and financial assistance. Call your county building and ask for the name of it if you don't know it.
  5. Ask for a Medicaid application. You will need to complete it and they will arrange an interview to review your application.
  6. If you are denied you have the right to appeal the decision. Many people have experiences where they are not approved on the initial request but on the 2nd or 3rd appeal.

Wednesday, March 9, 2011

Down Syndrome Affiliates in Action

One of the challenges in organizing local efforts via a Down syndrome association or group is to identify resources among the many support organizations out there. Down Syndrome Affiliates in Action also recognized this need and created a conference/association of advocacy groups across the country and internationally. The annual conference serves as a melting pot of ideas and learnings that are invaluable. It also reassures that there is a huge network of people united for a common cause.
From the DSAIA website: 
Down Syndrome Affiliates in Action started as a conference bringing together outstanding leadership from Down syndrome organizations around the country. After consecutive years of explosive growth, the conference has extended its reach internationally and is now a trade association continuing its mission.
  • DSAIA's purpose continues to be to serve our affiliates through collaboration, resource sharing, and networking.  View a webinar or pdf document explaining the many benefits of joining the Trade Association.

There are many Down Syndrome non-profit organizations on the web. Here is a link to many of them along with a designation if they are a DSAIA member.
The sixth annual Down Syndrome Affiliates in Action conference will be held February 29 to March 3, 2012 in Washington D.C. It is in conjunction with the National Down Syndrome Society Buddy Walk on Washington. The conference brings together nearly 100 organizations for more than 70 sessions and lectures. Participants consistently rave about the energy and focus the conference delivers to them and their organizations.

Tuesday, March 8, 2011

Disability Employment Statistics

  • In February 2011, the percentage of people with disabilities in the labor force was 21%. By comparison, the percentage of persons with no disability in the labor force was 70%
  • The unemployment rate for those with disabilities was 15%, compared with 9% for persons with no disability
  • Number of people with disabilities aged 16-64 is 33,153,211
  • Of those, the total number employed is 18,525,862
  • People with disabilities aged 16-64 employed is 55.8%
  • Of the 18.6 million people with disabilities employed aged 16-64, 60.1% of men with disabilities are employed, and 51.4% of women with disabilities are employed
This is the first year ever that statistics have been released for Americans with disabilities in the area of unemployment. With the release of this data, the federal government statistically recognizes those with disabilities as participants in the civilian labor force. Before the release of these official disability employment statistics, many and conflicting numbers were available from various services. This information can be valuable in guiding public policy designed to help advocacy groups who experience labor market difficulties.

Monday, March 7, 2011

Lauren Potter from Glee

The third annual national awareness day to end the hateful use of the "R" word took place last Wednesday, March 2, and ET's Mark Steines got one of the campaign's leading spokespersons, "Glee" star Lauren Potter, to dish on the event and her new boyfriend.

Sunday, March 6, 2011

Apps for kids with special needs

There are some amazing apps out there for iPad, iPhone, and iPod to help our kids learn and possibly improve quality of life.  The following links are attached to give some suggestions on where to find some apps to test out.
Lastly, see the Down Syndrome Daily Apps Page!

Saturday, March 5, 2011

Down TV

What is Down TV?

Down TV is an interactive video sharing website that covers a wide selection of themes all related to Trisomie 21 or Down’s syndrome. The result is a wide range of videos that try to answer most of the questions we have on Down’s Syndrome.

To upload videos on Down TV, first you need to have an account on in a video sharing website such as You Tube, Vimeo, and Dalealplay/

Upload a video from your account.
Watch it on your explorer and copy the [embed /] tag.
  • For Example in Youtube, you must click on the "Insert" button below to the right of the video. It will open a window with the video embed code highlighted in blue. Copy and paste it into the corresponding place in Down TV.

Go to the Publish video section in DownTV.
Fill in the form and paste the Embed code of your video on the proper tag. And… that’s all! In a few days you will see your video on Down TV!

Down TV is brought to you by Invest for Children with help from other advocacy organizations.  Invest for children (i4c) is a nonprofit international organization whose mission is to help disabled children and young adults achieve a better quality of life.

Friday, March 4, 2011

Congressional Down Syndrome Caucus

From Congresswoman Cathy McMorris Rodger's website, mother of Cole a beautiful 3 year old boy with Down syndrome.

The mission of the Congressional Down Syndrome Caucus is to educate members of Congress and their staff about Down syndrome. The Caucus will support legislative activities that would improve Down syndrome research, education and treatment and promote public policies that would enhance the quality of life for those with Down syndrome.

  1. Urge relevant authorizing committees to support Down syndrome programs and patient care through letters and testimony.
  2. Hold informational events for Members and staff here in DC to increase awareness of the disorder among Members.
  3. Ensure Down syndrome is adequately addressed in all relevant legislation and regulations.
  4. Continue to build House Congressional Down syndrome Caucus into a sustainable, dynamic political force and informational clearinghouse by increasing membership and activities.
  5. Work with National and Local Down syndrome groups to develop leading edge educational, medical and work related initiatives that support individuals with Down syndrome.
  6. Identify and strike down barriers in the law for person’s with mental disabilities.
  7. Expand opportunities for the Down syndrome population in education, the workplace and society at large.
  1. To raise expectations and improve outcomes in education.
  2. To eliminate barriers to economic opportunity in employment and in programs that promotes savings and investment.
  3. To promote and fund research that accelerates the development of effective treatments and therapies.
  4. Promote the translation of Down syndrome research into effective new treatments through interdisciplinary cooperation among the various NIH institutes, the FDA, the CDC and privately funded scientists and clinicians.
  5. To promote inclusiveness for people with Down syndrome.
  6. To help provide family support services and a community of care model.
  7. Advocate for the rights of those with Down syndrome and make sure those rights are being enforce
Caucus Co-Chairs

Thursday, March 3, 2011

Eva Longoria

Actress Eva Longoria lobbied lawmakers and spoke at a rally on behalf of the mentally disabled on Tuesday. Texas lawmakers are grappling with a $27 billion shortfall. The current House bill proposes cutting the Department of Aging and Disability Services by 20 percent, or almost $1 billion.

Longoria has a sister with Down syndrome. She told the crowd that if Texans understood what these cuts would mean for people like her sister, they would oppose them. She promised to speak out against the cuts.

Longoria said her 43-year-old sister is a resident of a group home in Texas, which could close due to funding cuts in the state budget proposals under consideration.

“We’re not here to ask for more money,” she said “We want to keep what we have fought for for the last 30 years.”

Wednesday, March 2, 2011

End the R-Word Today

Today is Spread the Word to End the Word Day. We all know what it means and the purpose of this day. Here are some events that are happening to promote this wonderful effort:

Tuesday, March 1, 2011

Call to Action from the NDSC

Action Need NOW!

The Administration on Developmental Disabilities (ADD) is a division of the U.S. Department of Health and Human Services.  ADD is responsible for implementing the state Protection and Advocacy agencies, the state Developmental Disabilities Councils, and the University Centers for Excellence in Developmental Disabilities and Projects of National Significance.  ADD is a small but important program that helps sets the agenda for individuals with developmental disabilities throughout the United States

ADD recently held listening sessions across the country in order to listen to those with developmental disabilities and their families and their vision for the future. They have also asked that self-advocates, family members, allies, and professionals across the country send them comments in order to insure representation to all. 

In response to ADD’s actions the Voice of the Retarded (VOR) a group of advocates in favor of large institutional programs sent out a request to their membership asking them to submit comments telling ADD to preserve these programs.  To date, most of the responses to ADD (which can be viewed on their website) have come from those supporting the institutions. 

Please submit a comment stating that the integrated community living is the policy that the federal government should support. If you can get others to write comments, please do so.  It is important to add that the Justice Department, Civil Rights Division has made it very clear that the community is the preference of this administration and is supported by both Olmstead and the ADA. People’s basic rights to live in the community should never be subjected to a vote.

Sample Message:
I am the parent of a son/daughter with a developmental disability.  I believe that the right to live and work in the community, basic human rights in our society should be given to all people with disabilities.  (Add a personal story, if possible).  The Olmstead decision says that individuals with disabilities have a right to community living and this has been reinforced by the Justice Department.