The NDSC is continuing to advocate for an independent investigation into the death of Ethan Saylor, a 26-year-old man with Down syndrome, who died while being restrained by off duty law enforcement officers. If you’re not familiar with this case, Ethan was attending a movie at a local theater in Frederick County, MD — a place he visited quite often. When he refused to leave the theater after the movie ended, and while his caregiver had gone to get their car, mall security was called, and Ethan was restrained face-down. The medical examiner ruled his death a homicide, but in March, a grand jury failed to indict anyone in Ethan’s death. 

NDSC’s Governmental Affairs Director, Susan Goodman, recently met again with representatives from the Department of Justice, as well as with Ethan’s mother, Patti Saylor, and other Maryland advocates. 

We’d like to encourage you to sign on to a new petition, which asks Maryland’s Attorney General to launch an independent investigation. You can read and sign the online petition here:

http://www.change.org/petitions/attorney-general-of-maryland-doug-gansler-launch-an-independent-inquiry-into-the-death-of-robert-ethan-saylor

We will continue to work with fellow advocates in the Down syndrome community to develop and distribute a best practices training program for law enforcement and other first responders.

NDSC and NDSS want to see justice served in Robert Ethan Saylor’s case and increase awareness and accountability by police departments across the country to prevent another tragedy from occurring.

To address the civil rights violation in Ethan’s case, NDSS and NDSC, with F.R.I.E.N.D.S. of Frederick County and Ethan’s mother, Patti Saylor, will meet with the U.S. Department of Justice, Office of Civil Rights next Monday, April 22.  Our organizations will continue to demand an independent inquiry, as we have done to date.

Our organizations also believe that training materials for police departments across the country will enhance efforts to prevent another tragedy through education and better understanding.  NDSC and NDSS are developing and disseminating training materials for law enforcement and first responders that will address specific health and behavioral concerns associated with people with Down syndrome.  If individuals or affiliates would like to share materials once they are completed, please e-mail susan@ndsccenter.org.

NDSS and NDSC will also co-host a town hall meeting on Tuesday, April 23, at 12:00 PM ET.  All are encouraged to attend to hear more and attendees will have the opportunity to voice questions and concerns.  You can join the Town Hall by dialing 1-877-410-5657 and using the following passcode:  69126.

As we continue our efforts, we encourage advocates to sign the petitions at change.org and whitehouse.gov.    We will continue to provide updates as they are available.

Global Down Syndrome Foundation (Global), International Down Syndrome Coalition (IDSC), International Mosaic Down Syndrome Association (IMDSA), National Down Syndrome Congress (NDSC) and National Down Syndrome Society (NDSS) continue to share deep sadness over the tragic and preventable death of Robert Ethan Saylor.

Each organization is addressing this situation in a manner keeping with their particular mission and all the organizations have been in close communication regarding various initiatives.  We are all united in condemning this tragic death and to working together to uphold the human and civil rights of people with Down syndrome and their families.

NDSC and NDSS have taken the lead in this case and have met with the local Frederick County affiliate, members of the Saylor family, and the U.S. Department of Justice.  Those interactions are ongoing and seek to support the Saylor family, while preserving all options available to them, and, at the same time, to prevent tragedies like Ethan’s death from occurring in the future.  Later this month, following another round of meetings with the Department of Justice and the family, NDSS and NDSC will present a joint “town hall” teleconference to share more information regarding initiatives and proposals to prevent this from occurring in the future.

We hear you.  We are listening.  And we intend to work as hard as we can, together, to prevent this from ever happening again.  We need to stay united as one Down syndrome community that is focused on the bigger picture and justice for Ethan.

See what we are doing and how you can help.

National Down Syndrome Congress – www.ndsccenter.org
National Down Syndrome Society – www.ndss.org
International Down Syndrome Coalition – www.theidsc.org
Down Syndrome Affiliates in Action – www.dsaia.org
Global Down Syndrome Foundation – www.globaldownsyndrome.org
International Mosaic Down Syndrome Association – www.imdsa.org

Down Syndrome Affiliates in Action, working in its role as a trade association, continues to support and respect the efforts of the other national organizations as all work diligently to address this issue.

FOR IMMEDIATE RELEASE
MARCH 27, 2013 

CONTACT:      
DAVID TOLLESON
770/604-9500

ATLANTA – The National Down Syndrome Congress (NDSC) believes that Robert Ethan Saylor’s civil rights were violated when he died after being restrained by three off-duty Frederick County, MD, Sheriff’s deputies.  Although the coroner ruled Saylor’s death a homicide, a grand jury declined to indict the deputies.

 “We cannot comprehend the series of poor decisions that were made leading to Ethan’s death,” noted David Tolleson, Executive Director of NDSC.  “If you used any other adjective to describe him – such as his race, religion, gender or sexual orientation – the streets would be filled with people seeking justice.  It appears that individuals at the theatre acted as if this was an emergency situation, or that Ethan presented an imminent threat, when in fact more time was both needed and available to assess the situation.”

 Tolleson adds, “By all reports, the officers involved are good men who did not intend for Ethan to die.  However, if an otherwise good person with good intentions were to kill someone with their car – perhaps because of neglected maintenance or driving under the influence – they would still be held accountable.”

 According to NDSC representatives, the Saylor case is filled with poor decisions and missed opportunities. 

•  The officers should have been trained on how to interact with individuals with Down syndrome and other developmental disabilities.
•  Recognizing that Ethan had Down syndrome, the officers should have showed more patience.
•  The officers should have worked with Ethan’s support person on strategies to diffuse the situation, rather than handcuffing him. 
•  Ethan’s mother was on the way to the theatre, called by his support person.  Officers should have waited for her to arrive to help resolve the situation.
• Other patrons nearby said they were afraid to get involved.  They shouldn’t have been.

 Tolleson noted that NDSC believes an independent investigation of what happened is necessary.  “Beyond the need for accountability, we need to know exactly what occurred so that we can work with law enforcement to ensure that it never happens again.”  

The NDSC believes that everyone, including people with developmental disabilities, have every right to attend events and activities in their community.  More awareness is needed about Down syndrome to ensure that all people feel welcome, included and safe.  “Ethan’s death is a tragedy and shines a spotlight on the need for awareness about people with Down syndrome in our communities, particularly among first responders.”

 Representatives from NDSC, Family Resource, Information and Education Network for Down Syndrome (F.R.I.E.N.D.S.), National Down Syndrome Society, Kennedy Krieger Institute, and the Saylor family met with the Community Relations Service (CRS) of the U.S. Department of Justice yesterday. 

 At the meeting, NDSC representatives asked for an investigation into the Saylor case.  The group also discussed the need for nationwide Down syndrome training for law enforcement officers.  

“It’s a first step,” Tolleson noted, “but we have a long way to go.”

NDSC joins with Family Resource, Information &  Education Network for Down Syndrome (F.R.I.E.N.D.S.) of Frederick County, Maryland in offering our prayers and condolences to Ethan’s family. We also want to reiterate how essential Disability …Awareness and Training classes are for law enforcement and other first responders. Read the press release from FRIENDS.

Press Release

February 21, 2013

Reference:  Robert Ethan Saylor incident, F.R.I.E.N.D.S. official statement

8:00am (EST)

Regarding the January 12^th tragic incident involving Mr. Robert Ethan Saylor and the off-duty Frederick County Sheriff’s deputies, who were working as security personnel at the Westview Promenade Shopping Center, the Family Resource Information and Education Network for Down Syndrome (F.R.I.E.N.D.S.) has remained cautiously quiet awaiting the outcome of the ongoing investigations. However, because of the huge public outcries and the overwhelming social media inquiries, which F.R.I.E.N.D.S. has received, in addition to those from within the Down syndrome community, we feel it necessary to finally break our silence.

First, let us say that our hearts and prayers go out Ethan’s family for their great and sudden loss. F.R.I.E.N.D.S. is here to support the Saylor family in any way we can. Second, we have been in the past, and will continue to be, strong supporters of the Frederick County Sheriff’s Office.

It is unfortunate that this incident happened and we believe that after all of the investigations are complete, the right decisions will be made on behalf of the Saylor family. Our intent is to not interfere in the investigations and allow the facts to be presented. Once all of the facts are known, we as an organization will determine what our next steps will be.  Meanwhile, F.R.I.E.N.D.S. would like to encourage law enforcement and other emergency personal to explore further training in dealing with individuals with Down syndrome and other developmental disabilities.   These individuals may have additional anatomical characteristics which may place them at greater risk for unintentional harm.

When an individual with developmental disabilities is challenged in our society, efforts must be made to patiently work with them to resolve the situation. The additional time may allow the individual to further process the situation and transition into a calmer state which may eliminate the need for unnecessary force.

F.R.I.E.N.D.S. is a voice for all individuals with Down syndrome. We will continue to educate, advocate, and raise awareness about Down syndrome within our local communities and across the nation. For further information please visit our website at www.friendsoffredco.org.

Signed,

F.R.I.E.N.D.S  Board of Directors

DENVER/ATLANTA (Nov. 27, 2012) – The Global Down Syndrome Foundation and the National Down Syndrome Congress have announced distribution agreements for the hallmark Down Syndrome Prenatal Testing Pamphlet that provides current, accurate information about Down syndrome to pregnant women and families.

The organizations anticipate distributing 25,000 pamphlets in the next year through the pamphlet’s new corresponding website, www.downsyndrometest.org. In the two weeks since the website launched, more than 1,000 pamphlets have been requested and are in the process of being distributed to several states, including California, Michigan, West Virginia, Texas and Florida. These pamphlets will be delivered free of charge by the end of the year, and distributed to pregnancy centers, OBGYN offices, parent support groups and to participants at an upcoming perinatal conference.

In addition to local distribution accessed through the website, the pamphlet will be distributed nationally by Sequenom Center for Molecular Medicine ^TM (Sequenom CMM), one of the largest prenatal testing laboratories in the United States. Sequenom CMM will provide medical professionals with the pamphlet, and will recommend that those who administer their test offer the pamphlet to patients / expectant parents at the point of testing and diagnosis. In the next year, Sequenom CMM anticipates providing between 75,000 and 100,000 printed copies of the pamphlet to the medical centers and facilities administering the MaterniT21^TM PLUS LDT.

“Sequenom CMM has expressed a desire to better understand the Down syndrome community’s concerns regarding prenatal testing, which opened up a discussion for them to distribute our pamphlet,” said David Tolleson, Executive Director of the National Down Syndrome Congress. “We appreciate their input on our pamphlet, and particularly the acknowledgment in their marketing materials that these tests can help a woman or family to ‘prepare medically, emotionally and financially for the birth of a child with special needs’.”

“It is so important to provide a pamphlet to pregnant women that explains both the prenatal testing associated with Down syndrome and facts about the condition,” said Michelle Sie Whitten, Executive Director of the Global Down Syndrome Foundation. “Requests for local distribution continue to grow through the website, and coupled with Sequenom CMM’s nationwide footprint, we expect to have a real and positive impact on thousands of pregnant women and their families.”

Dan Ketcherside, Director of Market Development at Sequenom CMM agreed, “Sequenom CMM encourages medical professionals to offer accurate information to pregnant women and their families about the conditions tested for through our products. The Global Down Syndrome Foundation and the National Down Syndrome Congress graciously included our perspective on prenatal testing in their pamphlet with messaging that mirrors the dialogue we’re already having with specialists around the country. We are honored to be a partner for this important educational material.”

The Global Down Syndrome Foundation and the National Down Syndrome Congress will continue to monitor advances in prenatal testing. They will also measure the impact of the pamphlet through follow-up surveys and update the pamphlet as appropriate. Sequenom CMM will also contribute to the pamphlet’s utility by surveying medical professionals on a quarterly basis. 

The pamphlet format allows for easy updates and distribution. The costs for approved distribution of the pamphlet (printing and shipping) will be incurred by Sequenom CMM, the Global Down Syndrome Foundation and the National Down Syndrome Congress. There is no financial benefit or incentive associated with the distribution agreements.

For free downloads of the pamphlet or to learn more, visit www.downsyndrometest.org.

NDSC requests school districts examine their policies and procedures regarding student safety

ATLANTA (November 20, 2012) – In light of the recent death of a middle school student in Tampa, FL, the National Down Syndrome Congress (NDSC) encourages all school districts to review their policies and procedures for supervising students with intellectual disabilities.

An internal investigation is continuing in the case of Jenny Caballero, an 11 year old with Down syndrome, who left her physical education class without the knowledge of school staff, and was found several hours later, drowned in a nearby retention pond. This tragic situation brings to the forefront the critical importance of having adequate support for students with special needs, particularly during transition times and in less structured activities and environments. In the case of Jenny Caballero, it was reported that more than 100 students, twenty of whom have disabilities, were in one room at the time of the girl’s disappearance.

The NDSC strongly supports the inclusion of students with Down syndrome with their typical peers.  The organization urges school districts to remain committed to inclusive settings as directed by each student’s individual education program, while providing necessary supervision and support for all students.

NDSC encourages parents, family members, and advocates to take the lesson of this tragic incident to their school administrators, and ask them to review their own policies. It is imperative that this type of incident does not happen again.

 “Our hearts go out to Jenny’s family,” said NDSC Executive Director, David Tolleson.  “Parents of all children should be able to send their children to school knowing they are safe.”

To learn more about NDSC, go to www.ndsccenter.org.

About the National Down Syndrome Congress Founded in 1973, the National Down Syndrome Congress is the country’s oldest national organization for people with Down syndrome, their families, and the professionals who work with them.  A 501(c)(3) non-profit advocacy organization, the NDSC provides free technical support and information about issues related to Down syndrome throughout the lifespan, as well as on matters of public policy relating to disability rights.  Best known for its annual convention – the largest of its type in the world – the National Down Syndrome Congress is a grassroots organization recognized for its “family” feel, its “We’re More Alike than Different” public awareness campaign, and, its outreach to individuals from diverse backgrounds.  The National Down Syndrome Congress is committed to creating a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome.

Global Down Syndrome Foundation, National Down Syndrome Congress Publish Hallmark Prenatal Testing Pamphlet for Pregnant Women

DENVER/ATLANTA (Nov. 14, 2012) – The Global Down Syndrome Foundation and the National Down Syndrome Congress announced the English and Spanish publication of the first Down Syndrome Prenatal Testing Pamphlet. The hallmark pamphlet will be distributed electronically and in print format nationally through medical professionals as well as available directly to pregnant women and families.

The Down Syndrome Prenatal Testing Pamphlet is intended to eliminate confusion at a time when advice and guidance can vary dramatically from doctor to doctor and counselor to counselor, and where there was previously no accessible, consistent resource for women and families. Recent research shows that the majority of medical students and doctors do not receive adequate training in prenatal diagnosis for Down syndrome and that parents often receive inaccurate information about the diagnosis.

“Although prenatal testing for Down syndrome has been available in the United States since the 1970s, there has not been an easy-to-read, easy-to-update pamphlet available for pregnant women distributed through the offices of medical professionals. The pamphlet that the Global Down Syndrome Foundation and the National Down Syndrome Congress are providing will be a much needed and welcomed resource,” said Nanette F. Santoro, M.D., Chair of the Department of Obstetrics and Gynecology at the University of Colorado School of Medicine.

The pamphlet was designed by a group of medical professionals, researchers, Down syndrome experts and parents over a six-month period. Through the websites, mailing lists and newsletters of the Global Down Syndrome Foundation and the National Down Syndrome Congress, more than 200 respondents from the Down syndrome community weighed in on a draft version of the pamphlet before its finalization.

Michelle Whitten, Executive Director of the Global Down Syndrome Foundation, explains, “Providing prenatal testing information for Down syndrome can be politically charged. But over 90% of survey respondents were on the same page about getting accurate information into the hands of pregnant women, and applauded our efforts. I believe that our organization and the National Down Syndrome Congress have been very respectful about listening to our community’s hopes and fears and providing an even-handed resource. Of course it is important to remember that our number one audience must be pregnant women.”

“We believe that this pamphlet goes a long way in satisfying the 2008 Prenatally and Postnatally Diagnosed Conditions Awareness Act co-sponsored by Senators Edward Kennedy (D-Mass.) and Sam Brownback (R-Kan.),” said David Tolleson, Executive Director of the National Down Syndrome Congress. “Our members and friends have been extremely supportive of this joint initiative with the Global Down Syndrome Foundation and we believe tens of thousands of women and families will benefit from having the current, accurate information presented in the pamphlet.”

The pamphlet also dispels the notion that new non-invasive 10-week blood tests for Down syndrome are diagnostic or 100% accurate. In fact, new blood tests on the market have shown high levels of accuracy only within a defined high-risk population (e.g. pregnant women over the age of 38). These tests are not recommended for women with low-risk pregnancies because their accuracy has not yet been demonstrated.

The Global Down Syndrome Foundation and the National Down Syndrome Congress will continue to measure the impact of the pamphlet through follow-up surveys and to monitor advances in prenatal testing, and the pamphlet will be updated as appropriate. The pamphlet format allows for easy updates and distribution.

Over the next several months, both organizations will be providing additional links and resources associated with a prenatal diagnosis of Down syndrome. For free downloads of the pamphlet or to learn more, visit www.downsyndrometest.org.

The latest issue (Volume 35, #6) of Down Syndrome News  is available on our website for you to read and share. This issue features “Michael’s Story: A Brother’s Remembrance”, which will make you smile and be glad that in 1946, Michael’s family had the good sense to bring their baby son home from the hospital and care for him just as they did their two older boys. Self advocates Meredith Martin and Lee Jones answer questions about preparing to live independently, and sibling Maddie Mitchell describes her experience attending her first NDSC Brothers & Sisters conference. All this and more awaits in the October 2012 DSN!

(NDSC members continue to receive the hard copy of our newsletter in their mailboxes seven times per year, but this electronic version makes it easy for you to share with the people in your life who are not members of the NDSC.)

Edith Ambrester, of the JW Marriott San Antonio Hill Country Resort and Spa, has been named San Antonio’s 2012 Convention Services Manager of the Year! This award is given to a professional “whose work goes above and beyond the call of duty”, and based on Edith’s work with the NDSC Convention, we can say with absolute certainty, that they’ve given this award to the right person.

Edith, who was nominated by her coworkers and peers, was then selected from seven other excellent candidates by a committee of Destination Management Consultants. “It was an even bigger honor,” Edith commented, “and meant even more once I had found out where the nomination came from.” 

Having worked in the hospitality industry for 25 years, she said  her most memorable event was the National Down Syndrome Congress Convention in July 2011. Woo hoo! Congratulations to Edith! We are so fortunate that we got to work with her and the amazing staff at the JW Marriott at our 2011 Convention!