Some Children with I/DD at Greater Risk from Flu

Young woman with the flu

Photo via nataliejohnson (Flickr)

The Centers for Disease Control and Prevention (CDC) just published a report on the results of an on-line study they did during the 2011-2012 influenza season regarding vaccination rates for children with neurologic and neurodevelopmental conditions.  Shockingly, the report indicated that only HALF of children surveyed were vaccinated or had an appointment to be vaccinated and out of those children who indicated they had an intellectual disability it was only slightly better at 52%.  Numbers like this are alarming due to when you consider the 2009 flu outbreak in which 336 children died. Of those, 146 were children with neurologic or neurodevelopmental conditions (76% indicating they had an intellectual disability).

The majority of families rely and trust their physician to provide them with information, expertise and advice on what is best for their child to keep them healthy. However, the study also found that even after this outbreak occurred many physicians still do not rate children with an intellectual disability as being at a high risk and needing the vaccination.

According to the CDC bulletin a child with an intellectual or developmental disability that requires special needs is at a higher risk than others due to the fact that they are more susceptible to developing complications and infections from the flu virus. These complications can include pneumonia, bronchitis, and can also increase the effects of already current chronic health problems. These complications can lead to hospitalization and in severe cases death.

While every parent has the right to choose whether to get their child vaccinated or not, studies like this will help to increase awareness of prevention and knowledge of parents and physicians to help them to make more informed decisions.

As fall rolls in and the flu season quickly approaches you can visit the HealthMap Vaccine Finder if you need help finding a location in your area to get vaccinated.

Report Highlights Severe Abuse of People with Disabilities Abroad

The International Task Force of the Consortium for Citizens with Disabilities (CCD) today released a report that highlights examples of the severe abuse and neglect of individuals with disabilities around the World.  The report, Neglected and Abused Abroad: A Look at the Severe Mistreatment of Individuals with Disabilities Around the World and How the U.S. Can Help, highlights just a few examples of the horrible treatment, abuse, and discrimination faced by individuals with a variety of disabilities in other countries. 

Some examples of abuse include:

  • In Ghana, people with intellectual and mental health disabilities suffer severe abuse in psychiatric institutions and “healing centers.”  Thousands of people are forced to live in these institutions, often against their will and with little possibility of challenging their confinement;
  • In Kenya, a 10-year old girl who is deaf was raped but faces barriers in the justice system because of her disability;
  • In Mexico, children with intellectual disabilities were  abandoned at a private facility without any documentation on their diagnosis or even their names;
  • Children in Paraguay were found in cells with walls smeared with excrement and reeking of urine; and
  • In Russia, people with physical disabilities are prisoners in their own homes because of the widespread physical inaccessibility of Russian cities.

“Our country has an obligation to share our knowledge of how to ensure  children and adults with disabilities live as full citizens, with dignity and independence,” said CCD Chair, Katy Neas of Easter Seals.  “It is imperative that the United States show our leadership by ratifying the Convention on the Rights of Persons with Disabilities this fall.”

The full report is available at: http://www.c-c-d.org/fichiers/CCD_Inter_TF-Neglected_and_Abused_Abroad.pdf

The CCD International Task Force calls on the United States Senate to ratify the Convention on the Rights of Persons with Disabilities – the CRPD.  Through ratification of this important treaty, the United States will be in a much better position under international law to influence, train, assist, and if necessary use diplomatic pressure to work towards the equal rights and treatment of individuals with disabilities across the world – rights which have existed in the United States for years.

CCD is a coalition of over 100 national consumer, advocacy, provider and professional organizations working together to advocate for national public policy that ensures the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society.  For years, the coalition and its members have been calling on the U.S. to ratify the CRPD protecting the rights and dignity of persons with disabilities.  CCD calls on the entire U.S. Senate to quickly provide its advice and consent to the treaty and restore the United States to a global leadership position on disability and human rights. 

The Arc Takes Bellevue, Washington by Storm

Self-Advocates working togetherEarlier this month, The Arc’s network of disability advocates and professionals descended on Bellevue, Washington for The Arc’s Annual Convention. The three day event was an exciting mixture of education, inspiration, and of course fun.

As always, having more than 600 of our advocates joining together proved to be a moving and powerful experience.  There is no better way to see the diversity and power of our network than when our chapters join together and share their many accomplishments. While our chapters have a lot of variety, they have a lot in common.  Convention allowed many to see how our chapters are working with National Initiatives of The Arc in different locations across the country for a common cause. Many of our chapters even had the opportunity to present together during concurrent sessions on a variety of topics including sibling workshops, self-advocacy programs, and technology.

A highlight of the weekend for many was getting to know Buzz and Zach Bissinger. The honesty and heart with which Buzz wrote Father’s Day was present when Buzz gave his keynote address. While Buzz and Zach captivated the audience, the event was also special for them.  When you attend one of our national events you leave knowing more about The Arc and its robust network.  We leave an impression on everyone we touch.

This year’s technology focus was also a great hit with amazing tech demos from The Arc of Baltimore, The Microsoft Store, and The Coleman Institute. Exclusive access to the Microsoft store gave a select group of attendees some hands on experience and training from experts.  And, our closing plenary offered amazing insights from Jack P. McArtney, Director, Corporate & Community Responsibility; Global Corporate Citizenship Group of Verizon, Inc. and Dan Hubbell, Sr. Marketing Manager for Microsoft’s Accessibility Group.

To wrap things up, we rolled out The Arc’s red carpet prior to The Arc & Sprout National Film Festival! Self-advocates, other attendees, and national staff strutted their stuff on the red carpet and brought a bit of Hollywood glam to our closing event.

Planning is already in the works for 2014’s Convention in New Orleans from, September 30 – October 2. Save the date and join us for another exciting event!

Happy Birthday Social Security!

Social Security CardsThis week marks the 78th anniversary of our nation’s Social Security system. At The Arc, we know that Social Security is a lifeline for over 9.6 million beneficiaries with disabilities, including many people with intellectual and developmental disabilities (I/DD).

Social Security improves our lives in so many ways. It provides basic economic security for workers and their families – including children and spouses with disabilities –  when a worker retires, dies, or acquires a significant disability. It helps people with disabilities who work all their lives enjoy a secure retirement. And it provides access to health insurance through Medicare, enabling many people with disabilities to get the medical care they need to survive and live in the community.

Social Security covers nearly all Americans, or an estimated 163 million workers. In comparison, 70 percent of private sector workers has no long-term disability insurance, 50 percent has no private pension, and 34 percent has no savings set aside for retirement.

It’s hard to imagine what would happen without Social Security. Benefits are modest, averaging about $1,100 to $1,200 per month, but go a long way in reducing poverty among beneficiaries with disabilities and their families. Many people with disabilities tell us that even a small cut in their Social Security benefits would mean facing terrible choices, like whether to take a prescribed medication or buy groceries.

The Arc knows how important it is to preserve Social Security. Over the last year, we’ve been on the front lines, speaking out against proposals like the chained CPI that would cut Social Security benefits and providing in-depth analysis.  The Arc also has many recommendations for strengthening Social Security so that the system works better for people with disabilities and stays financially strong for decades to come.

Please join us in making sure this vital protection is there for people with I/DD and their families! For more information about Social Security, or to apply for benefits, visit http://www.ssa.gov.

Social Security Administration Erases the “R-Word”

This week marks a great victory for people with disabilities across the United States.  The Social Security Administration (SSA) announced that it will no longer use the term “mental retardation” and will instead use “intellectual disability” in its official Listing of Impairments and other regulations. SSA started this process in January, and their decision brings us one step closer to a policy world free of the R-word.

This victory comes less than three years after President Obama signed Rosa’s Law, which substituted the stigmatizing word with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education, and labor policy statutes. The thousands of advocates who have spent decades working in the disability policy field know that change like this doesn’t come quickly or easily. However, once SSA decided to make a change, the agency was able to move from the initial public notice of proposed rulemaking to the final rule in just eight months.

SSA’s decision to use modern, respectful terminology will affect millions of children and adults with intellectual disability who over the course of their lives may need Social Security or Supplemental Security Income (SSI). It’s important to remember that this change will not alter who qualifies for benefits. SSA’s use of “intellectual disability” will not change whether an applicant will qualify for benefits, nor will it change current benefits for people who originally qualified for Social Security disability or SSI benefits with a diagnosis of “mental retardation.”

SSA’s announcement is all the more remarkable because SSA takes this step voluntarily. Rosa’s Law did not include Social Security or SSI, but SSA is making this change because it’s the right thing to do. The Arc and many other disability groups commented in support of this proposed change, which SSA first proposed in January 2013.

We know how powerful words are.  As Rosa Marcellino’s brother Nick said, “What you call people is how you treat them.” Words represent you and your viewpoint, and we can all be happy that SSA is taking a step to change the words being used in their official documents to better promote the civil rights of individuals with I/DD.  The R-word isn’t just a word, it is a stigmatizing term that the disability community has been fighting against for years, and this week we are a step closer to banishing it from our government and our society.

Happy Birthday ADA!

This week marks the 23rd anniversary of the passage of the Americans with Disabilities Act (ADA).  Signed by President George H. W. Bush in 1990, the ADA is the most important civil rights law for Americans with disabilities.  The ADA has increased physical access to all kinds of stores, government buildings, and offices.  In the work place, we are seeing more people who have disabilities working alongside their colleagues who do not have disabilities.  At large conferences, it is routine now to see interpreters for the deaf and hard of hearing and Braille documents for people who are blind or have visual impairments.

For people with intellectual and developmental disabilities (I/DD), the ADA has meant having the right to receive services in the most integrated setting appropriate.  Many people with I/DD have been able to leave large, segregated institutions and move into homes in communities.  We have seen a huge increase in home and community-based services and a steady decline in the number of people living in institutions over the past 23 years.

But, we still have more to do.  Too many people are on long waiting lists for community-based services and supports and are at risk of having to go into an institution.  Too many people who want a home of their own are still living in large congregate settings.  And, too many people with I/DD are living in nursing homes.  Far too many individuals with disabilities want to work but are unemployed.

While many barriers to full participation in society remain, let’s take a minute to celebrate the many positive changes that have been brought about by the ADA!

Here’s what some people and groups are saying about the ADA on this anniversary:

Autism NOW’s Co-Director Receives National Honor

Amy GoodmanEarlier this month, Amy Goodman, Co-Director of the Autism NOW Center, received the Outstanding Advocate of the Year award from The Autism Society of America. This comes as no surprise to The Arc’s national staff who work with Amy on a daily basis. Her passion for what she does is present in every task she undertakes.  The Autism NOW Center wouldn’t be the success it is without Amy’s dedication. You can view Amy at work answering questions in The Autism NOW Answer Series.

Read in Amy’s own words why winning this award is so important to her:

This award means a lot to me because it is proof that all my hard work and dedication to my profession has paid off and that individuals do appreciate me. It stands as a testament that what I do makes a difference in the lives of individuals with autism. I am so lucky to be able to share my life with those in need and I feel proud to be able to say I’m an individual with autism who has paved the way for others to enjoy life to the fullest extent.

This award is not only for me personally but to be shared with all my colleagues at The Arc, my friends and colleagues at The Autism Society of America, Robert Hunter of The Grateful Dead for enabling my brother to make a connection with Kent Moreno, who told us about Asperger’s syndrome in the first place, and all my friends and colleagues at Marshall University and the College Support program because if it were not for all their support and encouragement I would not be where I am today. I owe it all to them.

I may not move mountains by myself, but I can advocate and give others a voice they may not know they even have. This award has validated my life for me and I now know I am where I need to be and that I will survive in this world. It has given me a sense of self-worth and the confidence to know I can achieve or accomplish things above and beyond what others said I would never do.

Where Have You Been, Barbara Walters?

Barbara WaltersBy Mohan Mehra, Immediate Past President, The Arc of the United States Board of Directors, and Brian’s dad. Brian is a young man with Down syndrome.

Last week, Barbara Walters used her platform on “The View” to defend comedian Bill Maher when he used the “R” word to describe Sarah Palin’s five year old son, Trig, who has Down syndrome.  You can watch the clip on YouTube.

“I don’t think he intended to be mean spirited,” said Ms. Walters. Of course he did. Hiding behind jokes often becomes a form of bullying. We see it in schools, on the playing field, and in the media when celebrities who have a large platform like Mr. Maher are looking for a laugh or attention.

To excuse Maher due to possible “ignorance of the language” is unacceptable. He is a public figure, seeks the limelight in his public and private actions, and pleading ignorance does not fit his outspoken style. Where have you been, Bill Maher and Barbara Walters?

Historically, the “R” word was a clinical term used to describe people with an intellectual disability. Today, society uses it as an insult or to degrade people with intellectual disabilities. A recent survey of youth age 8-18 done by Special Olympics and the University of Massachusetts showed that 63% said that they felt bad for the person being picked on and only 9% of the youth said that they laughed or did not care. Where have you been, Barbara Walters?

In 2010, both houses of Congress unanimously passed, and the President signed Rosa’s Law, a bill that removes the “R” word from all federal health, education and labor policy and replaces it with “intellectual disability.” Nick, Rosa’s eleven year old brother said during the hearings, “What you call my sister is how you will treat her…. It invites taunting, stigma and bullying.” Words are mere vessels for meaning. Where have you been, Barbara Walters?

In our culture, the media enjoys a special status. With over 3 million viewers of “The View”, and a large following on social media, Ms. Walters has a large platform to inform and educate, in addition to entertain. It would indeed be fitting that in the memory of her sister, Jackie, who had an intellectual disability, she calls out such use of the “R’” word as hurtful and insulting to people with intellectual disabilities and their families.

Top Technology Companies Coming to Convention

Dan Hubbell

Dan Hubbell, Sr. Marketing Manager for Microsoft’s Accessibility Group

Verizon and Microsoft will be joining The Arc at our National Convention August 3-5 in Bellevue, Washington for a program focused on technology, innovation and Achieving Momentum in the movement for people with intellectual and developmental disabilities.

Convention attendees will hear from Jack P. McArtney, Director, Corporate & Community Responsibility; Global Corporate Citizenship Group of Verizon, Inc. who will kick off a technology-focused plenary session with thoughts on the new role of corporate social responsibility as a technology company.  And, Dan Hubbell, Sr. Marketing Manager for Microsoft’s Accessibility Group will speak about the newest assistive technology for individuals with disabilities.  Known as the Technical Evangelist for the Accessibility Business Unit at Microsoft, Dan is sure to infect all with his enthusiasm for innovation when it comes to making life better for people with I/DD.  Both men will participate in a panel discussion giving you an opportunity to ask your most pressing technology questions and capping off a Convention full of information and inspiration.

In addition to these noted speakers, this year’s Convention features demonstrations of cutting-edge assistive technology, breakout sessions on cloud computing, tablets and applications, visual story-telling, transitioning to a paperless office and more technology topics. This year’s Convention is shaping up to be a don’t-miss event with the addition of Verizon and Microsoft to an already stimulating program featuring acclaimed author Buzz Bissinger and sessions on innovations in family support, cultural diversity, building our grassroots movement and more.

Check out the full schedule and register now! Be sure to book your room at the Hyatt Regency Bellevue before July 2 and take advantage of early registration discounts before July 5, but there’s still time to save.

National Convention Preconference Dedicated to Self Advocacy

Joe Meadours at ConventionThe Arc’s annual National Convention kicks off August 3 with a preconference dedicated to fostering self-advocacy among people with intellectual and developmental disabilities. Join us on Seattle’s East Side for “Oh, the Possibilities: Self-Advocates as Leaders in Your Community”  hosted by The National Council of Self-Advocates of The Arc.

We will explore the all of the possibilities for self-advocate leaders in the community with training on effective communication, networking, building leadership skills, developing funding for self-advocacy group startups, and a demonstration of Self-Advocacy Online, a website dedicated to the self-advocacy movement. Don’t miss a special presentation of the history of the disability movement and civil rights and an art activity to get the crowd going as well.

Register now! A separate preconference registration is required in addition to your Convention registration but is only $15 for self-advocates! And, take advantage of early bird discounts on Convention registration when you sign up before July 5! Get the full Convention schedule and check out the other special events we have planned at www.thearc.org/convention.