Down Syndrome Organizations Express Concern Over Reports of Jailed Pakistani Girl

The Global Down Syndrome Foundation, the National Down Syndrome Congress, the National Down Syndrome Society, Down Syndrome Education International and the International Down Syndrome Coalition have joined together in shared concern over the fate of Rifta Masih, a young Pakistani girl reported to have Down syndrome who allegedly was jailed and faces life-threatening implications.

People with Down syndrome and other intellectual disabilities are a vulnerable population. Although early intervention and inclusion in some nations has meant great gains for many, there are still people with intellectual disabilities who have difficulty processing information or fully understanding the consequences of their actions.

We hope and expect that people from all countries and cultures, including those in the United States, will take this into account in terms of how people with Down syndrome and other intellectual disabilities are handled in police- and security-related matters," said Jamie Cwalinski of the National Down Syndrome Congress. "We strongly encourage the Pakistani police to ensure the young girl's safety and to allow family members and others who are known and trusted by the girl to stay with her to the extent that detention is necessary for her own protection."

It is very difficult for most people with intellectual disabilities to be taken out of their routine, and sometimes this may trigger agitated and uncontrollable behavior. We hope that this young girl will be able to return to the routine where she is safe and happy. We join others in urging restraint and compassion in this situation.

About the Global Down Syndrome Foundation

The Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Formally established in 2009, the Foundation's primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the US committed to research and medical care for people with the condition. Fundraising and government advocacy that corrects the alarming disparity of national funding for people with Down syndrome is a major short-term goal. The Foundation organizes the Be Beautiful Be Yourself Fashion Show - the single largest annual fundraiser benefitting people with Down syndrome. Programmatically the Foundation organizes and funds many programs and conferences including the Dare to Play Football and Cheer Camps, Global Down Syndrome Educational Series, and Global Down Syndrome Multi-Language Resource Project. The Foundation is an inclusive organization without political or religious affiliation or intention.

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.

About the National Down Syndrome Society

The National Down Syndrome Society is a nonprofit organization with more than 350 affiliates nationwide representing the more than 400,000 Americans who have this genetic condition. NDSS is committed to being the national advocate for the value, acceptance, and inclusion of people with Down syndrome. We demonstrate this commitment through our advocacy and public awareness initiatives that benefit people with Down syndrome and their families.

About Down Syndrome Education International

Down Syndrome Education International is a leading international charity dedicated to raising levels of educational achievement among children with Down syndrome. DSE has been at the forefront of developmental and educational research and evidence-based services improving outcomes for children with Down syndrome for over 30 years.

About the International Down Syndrome Coalition

IDSC for Life is dedicated to serving individuals with Down syndrome from conception throughout their lives by supporting families who have been given a prenatal diagnosis of Down syndrome and directing families to accurate and up-to-date information about Down syndrome. IDSC for Life extends heartfelt compassion, and hope and healing to parents who were pressured to terminate, and ended their pregnancy because of a Down syndrome diagnosis.

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Columnist stops by to say hello

Tony Sampson

Columnist Tony Sampson was among the hundreds of people who stopped by Apostrophe's table at the just-concluded Reinventing Quality Conference in Baltimore. Tony has been a regular contributor to the magazine for two years — ever since we met him at the 2010 conference in Baltimore. He writes about what it's like to be a person receiving services. It isn't always pretty, but it's always real.

Sampson was also a featured presenter at the conference, which drew a record 847 participants. At least 450 of them took a magazine. The conference gave us a chance to connect with potential contributors, make a pitch to advertisers and subscribers and collect leads for stories.

Self-advocates speak up at Reinventing Quality Conference

Self-advocates Barbara Coppens and Gary Rubin
at Reinventing Quality Conference earlier this week in Baltimore

Neither Barbara Coppens nor Gary Rubin is soft-spoken. They’re from New Jersey. That’s probably why people pay attention to what they say. Barbara, the cover story in the Summer 2012 issue of Apostrophe (www.apostrophemagazine.com), was among a group of panelists talking about key issues in self-advocacy organizations, at the just-concluded Reinventing Quality Conference (http://www.reinventingquality.org/) in Baltimore. 

Gary, who also advocates for the rights of people with disabilities, was recently formally recognized for his efforts when he was named the 2012 winner of the Jane Miller Award for advocacy by the New Jersey Self Advocacy Project, an arm of The Arc of New Jersey. The New Jersey Self Advocacy Project provides statewide support for New Jersey’s self-advocates with intellectual and related disabilities to help them make a change on both personal and social levels. Rubin is also a member of Community Access Unlimited, which supports people with disabilities and at-risk youth, providing services to help them live independently within the community, including housing, life-skills training and advocacy support.

You can read more about Gary at http://njtoday.net/2012/04/19/advocate-for-people-with-disabilities-honored/#ixzz234VyizuF.  

Kneaded: Life Skills

Photo by Kevin Miyazaki

Culinary interns with disabilities rise to the challenge when put to work in a Wisconsin bakery with a heart. Taste of Home writer Jennifer Billock describes how Country Rose Bakery teamed up with Shepherds College Culinary Arts program to train interns with intellectual disabilities. Apostrophe reprinted the story (page 16 of the Summer 2012 issue) with permission of Taste of Home. Read the story at Taste of Home or Apostrophe.

'People with disabilities want what most of us do... they want to fit in, they want love, a purpose in life and respect'

Laura Schutz and her father, Louis, show off a monster walleye Laura caught during a fishing trip to Lac Seul in northwestern Ontario, Canada. Laura caught more than 40 world-class walleyes the first afternoon on the water. “She easily out-fished the guide, another friend in the boat and myself,” Louis said. “We dubbed her the ‘Walleye Whisperer,’ and she continued for the entire week to outfish us all.” Photo courtesy of Louis Schutz

Louis Schutz of Skokie, Ill., writes in the Summer 2012 issue of Apostrophe about the joys and sorrows, triumphs and tussles he and his wife, Judy, experienced raising a daughter with Prader Willi syndrome. 

“Born three weeks late with a 'failure to thrive' diagnosis, Laura was immediately whisked away by nurses,” Schutz recalls. “It was hours before I was able to hold her — an ominous beginning to what would become a lifelong struggle. 

“Weak muscled (hypotonia) and not wanting or able to eat for five months (a strange twist of fate as it turns out), our beautiful blond-haired daughter was not doing well. Scoffed at by doctors, we knew something was wrong and vigorously pursued further testing and treatments for years, searching for a diagnosis. Physical, occupational and speech therapy were the daily routine for years. Just by luck they were the right things to do. One brain scan showed she had brain tumors and was missing her corpus callosum. A later test proved that diagnosis 100 percent wrong.

“It would be three more long, torturous years and thousands of dollars of multiple failed medical tests to give us the proper diagnosis of Prader Willi (PW)syndrome — a rare genetic disorder affecting one in 15,000. Now you can get a more exacting genetic test to confirm this. Think Down syndrome with more weird twists. Left to her own, she will eat herself to death. She is however among the first generation getting proper medical care with 24-hour supervision.”

Read Louis' story beginning on page 10 of Apostrophe. 

National Academy of Elder Law Attorneys and Stetson University College of Law Release New Video About Elder and Special Needs Law

The National Academy of Elder Law Attorneys (NAELA) and Stetson University College of Law proudly announce the release of a new video that will help attorneys who specialize in Elder and Special Needs Law better serve consumers in planning for the future.

View the video, “Welcome to Elder Law,” by NAELA member and attorney Rajiv Nagaich, Esq., of Seattle, Wash.

“The first wave of Baby Boomers is now retiring. As a whole, this generation of retirees is healthier and will live longer than the last generation of retirees. The number of Americans who will seek the services of an Elder or Special Needs Law attorney is expanding quickly. This is an opportunity for attorneys to learn more about NAELA’s unique resources, which educate our members and give them the tools they need to better serve their clients,” said NAELA Past President Edwin Boyer, Esq., CAP.

About NAELA
Members of the National Academy of Elder Law Attorneys (NAELA) are attorneys who are experienced and trained in working with the legal problems of aging Americans and individuals of all ages with disabilities. Established in 1987, NAELA is a non-profit association that assists lawyers, bar organizations and others. The mission of NAELA is to establish NAELA members as the premier providers of legal advocacy, guidance and services to enhance the lives of people with special needs and people as they age. NAELA currently has members across the United States, Canada, Australia and the United Kingdom. For more information, visit NAELA.org.

About Elder and Special Needs Law
Elder and Special Needs Law are specialized areas that involve representing, counseling and assisting seniors, people with disabilities, and their families, in connection with a variety of legal issues, with a primary emphasis on promoting the highest quality of life for individuals. Typically, Elder and Special Needs Law address the convergence of legal needs with the social, psychological, medical, and financial needs of individuals. The Elder and Special Needs Law attorney handles estate planning and counsels clients about planning for incapacity with health care decision-making documents. The Elder and Special Needs Law attorney also assists clients in planning for possible long-term care needs, including at-home care, assisted living, or nursing home care. Locating the appropriate type of care, coordinating public and private resources to finance the cost of care, and working to ensure the client’s right to quality care are all part of the Elder and Special Needs Law practice.