Apostrophe Magazine

Down Syndrome Organizations Express Concern Over Reports of Jailed Pakistani Girl

noreply@blogger.com (Apostrophe Magazine) — Tue, 21 Aug 2012 19:04:00 +0000

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.

Check out the Montana Autism Education Project blog

noreply@blogger.com (Apostrophe Magazine) — Mon, 13 Aug 2012 20:33:00 +0000

Search these subjects on the Montana Autism Education Project blog:

adulthood
asperger's and girls
aspergers
assessment
behavior
causes
communication
diagnosis
employment
hot
ipad
map
parenting
rate
research
technology
training
transition
treatment
webinar

Columnist stops by to say hello

noreply@blogger.com (Apostrophe Magazine) — Thu, 09 Aug 2012 18:02:00 +0000

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

noreply@blogger.com (Apostrophe Magazine) — Thu, 09 Aug 2012 17:49:00 +0000

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.

Kneaded: Life Skills

noreply@blogger.com (Apostrophe Magazine) — Wed, 01 Aug 2012 21:20:00 +0000

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'

noreply@blogger.com (Apostrophe Magazine) — Wed, 01 Aug 2012 20:36:00 +0000

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

noreply@blogger.com (Apostrophe Magazine) — Tue, 31 Jul 2012 14:31:00 +0000

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.

People with disabilities need more choices

noreply@blogger.com (Apostrophe Magazine) — Thu, 26 Jul 2012 23:01:00 +0000

TONY SAMPSON

People with disabilities should have choices in what they have in life, whether it’s their vocation, their vacation or their home.

Let’s says you go to a jukebox, and you want to listen to some music, and you see only one song on the machine. What about when you go into a restaurant and you want to get something to eat? Guess what? They have only one thing on the menu! It’s the same with people with disabilities. They have little, limited or no choices in jobs, vacations and even where they live!

Self-advocate Tony Sampson is a graduate of Leaders in Disability Policy and a former member of the Maryland Disabilities Council. He has delivered many training sessions on inequality in the treatment of people with disabilities. He has worked at Home Depot for five years. Read his column on page 8 in the latest Apostrophe.

‘Keep up the great work!’

noreply@blogger.com (Apostrophe Magazine) — Wed, 25 Jul 2012 18:00:00 +0000

I wanted to take a moment to comment on my experience thus far with Apostrophe Magazine. I have a 4-year-old son with Down syndrome. As many parents of children with disabilities can attest, it can be somewhat overwhelming contemplating the future of our children, especially in mainstream society.

NASH MURRAY

Since subscribing to Apostrophe and reading through the many articles about individuals with disabilities truly making an impact in the workplace and adding so much to society, it has brought much comfort knowing that my son will have many opportunities to do the same.

Thank you for your work and for giving a voice to many of those who otherwise would go unheard. Each one of us has unique talents and abilities that others can learn from. I have quickly realized that I stand to learn much more from being around my son and others with disabilities than I have to offer them. I have learned the value of being humble and willing to work through even the most difficult circumstances.

I have also learned what it means to have unconditional love. Each time I read through another edition of your magazine, I see similar attributes in so many of those who you feature. Keep up the great work!

Brady Murray

Founder RODS Racing (http://rodsracing.org/)

Boise, Idaho

We have skills, feelings and rights, just like everyone else

noreply@blogger.com (Apostrophe Magazine) — Tue, 24 Jul 2012 17:35:00 +0000

Kevin Smith

My name is Kevin Smith. I’m a person with a developmental disability. I have cerebral palsy with secondary blindness. But I don’t let that limit my ability to live life to the fullest extent possible. I was told I would never live on my own or have a job. No one thought I would ever get married or own a car. But those people were looking at my disabilities, not my abilities. I had my own apartment for more than 20 years, but now I live with my wife in our own house.

I started out working in our local sheltered workshop counting marbles, but now I work as a professional at The Arc as the People First coordinator for West Virginia. I own my own van (even though I can’t drive), and on April 28, I walked down the aisle for the second time. I wouldn’t have been able to achieve any of those things without self-advocacy and People First.

I got started with People First when I was nominated to go to a national conference held in Tennessee back in 1991. That’s where I learned that I had the right to speak up for what I wanted. Read Kevin's People First column on page 7 in the latest issue of Apostrophe Magazine.

The Economic Impact of Autism on Families

noreply@blogger.com (Apostrophe Magazine) — Thu, 19 Jul 2012 22:35:00 +0000

In the summer 2012 Apostrophe (now at the printer), Laura McKenna, former political science professor, blogger, and freelance writer, discusses how autism affects families economically.

"After parents first receive the news from a doctor or a teacher that their child is on the autistic spectrum, there is an inevitable period of grieving as they process the news," she writes as a guest blogger in The Atlantic. "They must accept the fact that their child will face serious challenges and may miss out on the milestone events — a home run on the Little League game, a driver's license, the prom — that other parents proudly post on their Facebook page. Most parents get over it. The child will have his own achievements and will reach different milestones, which are treasured as much as the traditional ones. Parental love and pride pushes aside the devastation." Read the whole thing here...

An 8 step guide to insurance coverage for autism

noreply@blogger.com (Apostrophe Magazine) — Mon, 16 Jul 2012 16:11:00 +0000

Friendship Circle has an 8 step guide to insurance coverage for autism.

The continuing journey

noreply@blogger.com (Apostrophe Magazine) — Tue, 03 Jul 2012 19:15:00 +0000

Posted on July 3, 2012 by bethesdablog

By Sheryl von Westernhagen
OfficeMax®
Dir, Metrics & Compliance
Diversity & Inclusion

As a company that emphasizes equal employment opportunities, OfficeMax^® has had on its radar the hiring and retaining of individuals with disabilities. There are different ways to accomplish this goal. Some companies do a minimal of outreach and if an individual with a disability happens to apply and then happens to be a successful hire, it is counted as a win. Others develop multiple programs, set goals, and drive a culture shift to ensure that all individuals can be successful in the workplace and be valued for who they are.

Read the whole thing here.

The Arc Reacts to the U.S. Supreme Court’s Decision on the Affordable Care Act

noreply@blogger.com (Apostrophe Magazine) — Thu, 28 Jun 2012 17:53:00 +0000

Washington, DC – The Arc released the following statement in response to the U.S. Supreme Court’s decision to uphold the Affordable Care Act.

“People with intellectual and developmental disabilities have been waiting for generations for the insurance reforms put in place by the Affordable Care Act. Today’s ruling removes any doubts that the law Congress enacted should stand and will benefit millions of people with and without disabilities. It ends discriminatory insurance practices and makes health coverage more affordable and accessible – important protections which too many people with disabilities have been deprived of for too long.

“But the ruling is not perfect for people with I/DD. The Arc is concerned that disallowing the federal government the ability to withhold Medicaid dollars from states that don’t expand their program to cover more of the uninsured might mean that people with I/DD who would have benefitted from the expansion could be left behind. Medicaid is an incredibly important lifeline for people with I/DD, providing health care and long term services and supports.

“We will carefully watch how states react to this development and encourage our advocates across the country to put pressure on their state leaders to do the right thing and expand their Medicaid program,” said Marty Ford, Director of Public Policy for The Arc.

The Arc advocates for and serves people with I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 700 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc Responds to New Report on Alcohol Intake During Pregnancy

noreply@blogger.com (Apostrophe Magazine) — Thu, 21 Jun 2012 17:16:00 +0000

The Arc is concerned about new research released earlier this week from Denmark stating that drinking low to moderate levels of alcohol during early pregnancy will cause no ill effects to children.

The Arc’s over 700 chapters have a long history of raising awareness, educating and providing training to their communities about the dangers of drinking while pregnant. Unfortunately, studies like this serve to minimize alcohol’s severe effects on an unborn baby, placing doubt in the minds of mothers about the actual risk of drinking while pregnant. When studies are released that suggest alcohol intake can be safe during pregnancy, The Arc takes the opportunity to speak up and educate the public about the very real dangers of drinking while pregnant.

Fetal Alcohol Spectrum Disorders (FASDs) describe the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects can include physical, behavioral, mental and/or learning disabilities with possible lifelong implications. FASD affects an estimated 40,000 infants each year - more than Spina Bifida, Down Syndrome and Muscular Dystrophy combined.

“Why put your baby at risk? Fetal Alcohol Spectrum Disorders are 100% preventable if mothers abstain from drinking during pregnancy. The Arc advocates not drinking during pregnancy, and will continue to push this message because studies like this ignore the fact that completely abstaining takes the risk of having a baby with a Fetal Alcohol Spectrum Disorder off the table,” said Peter V. Berns, CEO of The Arc.

As other opponents of the study highlighted, there are a number of factors that weren’t taken into consideration that warrant the public’s attention. These include the fact that some developmental delays are not detected as young as 5 years old, the differences in metabolism amongst women, and variances in genetic susceptibility.

The Arc, together with the Substance Abuse and Mental Health Services Administration (SAMHSA) Fetal Alcohol Spectrum Disorder Center for Excellence, recruits and supports the Self-Advocates with FASD in Action (or SAFA) Network. SAFA was established a little over a year ago to build and support a network of people with FASDs and give them the platform to be self-advocates.

Autism and Insurance: Is the law on your side?

noreply@blogger.com (Apostrophe Magazine) — Wed, 20 Jun 2012 22:23:00 +0000

Yes, it is! But few parents know this. Autism Advocate Feda Almaliti explains in a column by Laura Shumaker in the San Francisco Chronicle.

"Many families are coping with autism these days. Consider the statistics; one in every 88 children is diagnosed with autism spectrum disorder (ASD)," Almalit says. "Even more startling, one in every 54 boys has autism. There is a child born every eight seconds in the United States, and according to the US Census Bureau, more of those births will be boys than girls." Read the whole thing here.

Bill to strike 'mentally retarded' from US code

noreply@blogger.com (Apostrophe Magazine) — Mon, 18 Jun 2012 17:01:00 +0000

Bipartisan legislation introduced Wednesday would strike the term "mentally retarded" from the section of the U.S. Code that governs major federal entitlements, reporter Elise Vieback writes in Healthwatch, The Hill’s healthcare blog.

“The bill from Sens. John Kerry (D-Mass.) and Chuck Grassley (R-Iowa) would also expand the mental health services available to young people on Medicaid.

The portion of the bill striking "mentally retarded" would apply to the Social Security Act, which includes Medicare, Medicaid, Social Security and the State Children's Health Insurance Program.

"The Senate recently approved a bill striking the word "lunatic" from everywhere that it appears in the federal code," Vieback reports. "That bill, introduced by Sens. Kent Conrad (D-N.D.) and Mike Crapo (R-Idaho), was praised by health groups." Read more...

How Prevalent Are Intellectual and Developmental Disabilities in the United States?

noreply@blogger.com (Apostrophe Magazine) — Thu, 14 Jun 2012 21:14:00 +0000

It is not precisely known how many people have intellectual and developmental
disabilities. Indeed, even very trustworthy sources of information report data that
appear inconsistent. Most dependable sources, e.g., The Arc of the US, the American
Association on Intellectual and Developmental Disabilities (AAIDD), etc., tend to agree
on a small range of percentages — roughly 1.5% to 2.5% — of the total general
population. The Bethesda Institute looks into the data on intellectual and developmental disability numbers and comes up with some surprising findings. Read more...

'My child with special needs is not a burden to society'

noreply@blogger.com (Apostrophe Magazine) — Wed, 13 Jun 2012 14:21:00 +0000

Blogger Ellen Seidman writes about why her son Max has made a difference in this world and will continue to do so, in his own way. Who knows what Max is capable of and who are any of us to judge his worth? she asks. Read the whole thing.

Thinking About The Unthinkable

noreply@blogger.com (Apostrophe Magazine) — Wed, 13 Jun 2012 14:08:00 +0000

In Psychology Today's latest installment of Asperger's Diary (Life through the lens of Asperger's Syndrome), writer Lynne Soraya writes about what makes us human. And, she asks, why does it matter?

State Data: The National Report on Employment Services and Outcomes

noreply@blogger.com (Apostrophe Magazine) — Mon, 11 Jun 2012 15:30:00 +0000

People with intellectual and developmental disabilities experience greater levels of unemployment, underemployment, low wages, and poverty compared to those without disabilities.

That is among the findings reported in “State Data: The National Report on Employment Services and Outcomes”

According to the report:

In the IDD system, the percentage of individuals receiving integrated employment services declined to 20.1 percent inFY2010, and the growth seen in supported employment between the mid-1980s and mid-1990s has subsided. Community-based non-work services continue to expand for states reporting this as a service.
In the VR system, the rehabilitation rate declined; more days were needed by VR clients to gain employment; and few gained post-secondary education experiences.
American Community Survey data continues to show that people with disabilities are much less likely to work than their counterparts who do not have disabilities. People with a cognitive disability saw a greater drop in their employment rate than people without disabilities between 2009 and 2010, and people with a cognitive disability who are receiving SSI have the lowest employment rate and are most likely to live in a household below the poverty level.

Download the report here.

Special Olympics Illinois PSA "Speechless"

noreply@blogger.com (Apostrophe Magazine) — Wed, 30 May 2012 15:43:00 +0000

Susie Doyens' life was transformed when she joined Special Olympics. Director Martin Rodahl uniquely captures her story at Bartlett Hills Golf Club in Illinois in this surprising and powerful publicservice announcement.

Oregon Court Rules that the ADA Integration Mandate Applies to Sheltered Workshops

noreply@blogger.com (Apostrophe Magazine) — Tue, 29 May 2012 18:48:00 +0000

In a major development, a May 17th ruling by a US Judge has affirmed that the integration mandate of Olmstead applies to Oregon's provision (or failure to provide) "integrated employment services, including supported employment programs." (Olmstead refers to a Supreme Court ruling that affirmed the right of individuals with disabilities to live in their community "rather than in institutions when the State's treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities.")

Read more at Training Resource Network.

Down Wit Dat

noreply@blogger.com (Apostrophe Magazine) — Tue, 29 May 2012 17:47:00 +0000

Charles de Gaulle had a daughter with Down syndrome. Arthur Miller had a son with Down syndrome. They treated their children in much different ways. You can learn about de Gaulle and Miller at Down wit Dat and read the three parts of A Brief History of Down Syndrome.

2012 State Medicaid Rankings

noreply@blogger.com (Apostrophe Magazine) — Tue, 29 May 2012 15:22:00 +0000

Arizona offers the best Medicaid services for individuals with intellectual and developmental disabilities while Mississippi provides the worst, according to United Cerebral Palsy’s 2012 report “The Case forInclusion.” Find out where your state stands in the ranking of the 50 states and the District of Columbia.