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Social Security Administration Erases the “R-Word”

/in /by The Arc

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.

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Happy Birthday, ADA!

/in /by The Arc

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:

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Disability Advocates and Professionals to Descend on Bellevue for The Arc’s Annual Convention

/in /by The Arc

Next week, The Arc’s National Convention will kick off in Bellevue, Washington with more than 500 disability advocates, professionals, and people with intellectual and developmental disabilities (I/DD) coming together to learn, forge connections, and energize the disability movement. The theme, Achieving Momentum, captures what The Arc is all about – empowering people with I/DD to achieve their dreams by continuously moving forward on issues that help them achieve independence and be included in society.

“The Arc’s convention is a once a year chance to bring our network of 700 chapters and their members and professionals together for a unique experience. This year, we have a wonderful array of sessions focused on family relationships, technology, and advocacy, and plenty of opportunities for attendees to learn from each other and have some fun,” said Peter Berns, CEO of The Arc.

This three day event, which will take place from August 3-5, will include:

  • a keynote address by award-winning author Buzz Bissinger, whose recent book Father’s Day chronicles his relationship with son Zach, who has multiple disabilities;
  • honoring Illinois Governor Pat Quinn with our Advocacy Matters award for his work to offer people with I/DD the opportunity to live in a community of their choice;
  • a special visit via video by Andrew Jenks, creator of MTV’s World of Jenks, a documentary style show that features a young man with autism as he transitions from high school to the world of work, dating, and being an adult. Jenks is this year’s recipient of The Arc’s Image and Inclusion Award for positive portrayal of people with I/DD in the media;
  • a technology emphasis with guest speakers from Verizon, a sponsor of this year’s convention, and Microsoft, and the opportunity for attendees to have a hands-on technology experience at the Microsoft store, in Bellevue Square Mall, during a private class just for attendees ; and
  • Red Hot on the Red Carpet and The Arc & Sprout National Film Festival. We’re rolling out the red carpet again as a lead-in to our always popular film festival featuring shorts for, by and about people with I/DD.

“We are excited to serve as the local host committee for The Arc’s national convention. This marks the first time this national event has returned to our state since 1956. The Arc of Washington State is proud to have been instrumental in establishing the national organization over 60 years ago, and we look forward to many more years of growth and positive change that such a strong national partnership brings,” said Sue Elliott, Executive Director of The Arc of Washington State.

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Autism NOW’s Co-Director Receives National Honor

/in /by The Arc

Earlier 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.

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Why Are Celebrities Still Using the R-Word?

/in /by Peter Berns

In a newly released song, Jodeci Freestyle, artists Drake and J.Cole use the “R-word” and the term “autistic” as insults. I find it hard to believe that there is nothing else that will rhyme with “started”, aside from retarded. And using autistic in this manner is an insult to thousands of individuals on the autism spectrum who deserve respect. The context doesn’t matter, the use of both words is a slur that demeans individuals with disabilities – and that is unacceptable.

Words are a powerful thing, and sadly many influential people, like Drake and J.Cole, still fail to see the impact of their words. Rappers, actors, and any public figures have a responsibility to the people who admire them to choose their words wisely. There is no denying that both Drake and J.Cole are talented musicians, admired worldwide, which makes it even more important that they put thought into every word they use. Your choice in words is a reflection on you and your beliefs. Public figures or artists should not want to be connected to the ignorance and malice associated with the words that Drake and J.Cole chose to use.

Sadly, I am not shocked to hear that the r-word is being used in a rap song, but it doesn’t mean that I am not disappointed. The fact of the matter is that using language that was rejected by the people it was used to describe is a slur against them and shows blatant disrespect. We as a society should not allow language that diminishes another person’s value or insults them to be socially acceptable. I see this as an opportunity to educate more individuals, and hopefully educate Drake and J.Cole. Their fans are among the many who have already signed a petition condemning their language in this song. Hopefully, this petition will send a message to them that their choice in words is absolutely wrong, and their fans are paying attention.

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All Aboard: An Opportunity to Make America’s Railways More Accessible

/in /by The Arc

On the brink of the 23rd anniversary of the Americans with Disabilities Act (ADA), we celebrate the work of advocates like you who have made progress in your communities on so many issues. While train stations and platforms are more accessible, there is still a lot of work to be done. The problem isn’t your enthusiasm, or tenacity, or will – the problem is Amtrak and our antiquated rail system. Amtrak was given 20 years to comply with ADA regulations, and they have yet to reach their promise of reaching full accessibility standards. So The National Disability Rights Network and the nationwide network of Protection and Advocacy agencies for people with disabilities is going to be holding a week of action on Amtrak, and we need your help!

As we approach this historic anniversary of the Americans with Disabilities Act, many Protection and Advocacy agencies and other advocates for people with disabilities will be visiting Amtrak and commuter rail stations across the country to record and report as many accessibility problems as we can. We need you to start to help us during the week of July 21-27, the week of the 23rd anniversary of the ADA. Please take some time during this week to visit a local train station. While there, please take pictures, and fill out the survey to help NDRN determine whether the train station is accessible to people with disabilities. All findings can then be emailed to trainweek@ndrn.org.

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How Can the Cloud Help Your Chapter?

/in /by The Arc

By Mike Holihan, MediSked, Guest Blogger

As many provider agencies adopt cloud based software solutions to manage their records, let’s examine the benefits to the people who are receiving the care and service provided to them by these agencies. How does a hosted software solution (aka cloud based; meaning it is accessed through the internet) help organizations like chapters of The Arc provide the highest quality of care to the individuals we serve? Can the cloud make the lives of people better? We believe it can. Below is a list of examples of how cloud based software for providers can give crucial support staff access to information instantly, wherever they are. The cloud takes records out the filing cabinets or binders and puts them at the point of care where they belong. Let’s look at some examples.

  • Time searching for records: With a cloud based solution, client records are centralized and new information regarding them continually gets added to the same spot. So you always know where to look for any type of information on an individual. Think about how agencies traditionally store information today. How long would it take a provider to find out a client’s Medicaid # or emergency contact?Sometimes access to client records is urgent and time searching for that information in a paper storage system could be crucial. Time searching for records is a big improvement when you move to the cloud.
  • Special instructions: Special instructions are a lot more valuable when they’re at your fingertips. Whether it’s enhanced protective oversight or allergies, when a provider organization’s staff sees them right away, they can avoid negligence and improper care. So let’s say direct care staff is on a picnic or at the park with the people they serve and someone gets stung by a bee. The employee could pull out their smartphone and access the client record to see if they have a bee sting allergy. If they do, there could be instructions on what to do or the employee can react quicker in calling for medical care. If they see that they don’t have an allergy, they can react in a more appropriate manner. It’s all about giving staff access to information that will help them make better decisions in case of an emergency.
  • Medication administration: Rather than waiting until the end of the week to find out if a medication has been missed or administered in error, the cloud allows for real-time records. The cloud allows an agency to become more proactive instead of being reactive. This is the benefit of “real-time” records. Real time refers the ability to see when changes are made to a record as soon as an employee makes them in the system. Because the system is accessed through the internet or cloud, real time records give the provider, much more power in helping provide better quality of care because you can manage things that are happening as they are happening. As opposed to be reactive and trying to correct or fix something long after the fact.
  • Improved communications: Providers can talk to each other in real-time to inform other staff of any issues or concerns, rather than allowing those issues to grow. A good example is, change in health, behavior, demographics, or natural supports being circulated immediately. Think about how agencies traditionally work. Departments are siloed, meaning that one department rarely talks to another department. The cloud breaks down department walls and allows better communication around what’s really important, an individual’s care.
  • Improved outcomes: When data is available immediately, it can be used for trending and making better clinical decisions. When it exists only in a notebook, it is never charted or tracked. A good example: seizures, weight, behaviors, falls, choking, blood glucose, and more. If ignored, these predictive variables could be missed and an individual could end up in the hospital, where they are more likely to contract other illnesses. Again it’s about being proactive and the cloud allows that to happen!

For more information on how the cloud helps chapters of The Arc improve the quality of care, get a free e-report.

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The Arc Applauds Stay of Execution of Warren Hill, Vows to Continue Legal Advocacy Efforts

/in , /by The Arc

Washington, DC – This evening, the state of Georgia was scheduled to execute Warren Hill, a man who experts unanimously determined has an intellectual disability, which should have ruled out the death penalty per a 2002 Supreme Court ruling, Atkins v. Virginia. But this afternoon, a Fulton County, Georgia judge stayed the execution and scheduled a hearing for this Thursday to hear the defense team’s challenge of the constitutionality of a new state law that shields the identities of the lethal injection drug’s manufacturer and physician who prescribes it.

“Today, Georgia came too close to ignoring experts and crossing the line drawn by a more than decade-old Supreme Court ruling protecting people with intellectual disability in our justice system. While we breathe a sigh of relief for now, this battle is far from over for Mr. Hill and many more people with disabilities who may be at risk of unjust punishment. This stay of execution was granted on another state legal matter in the case, not Mr. Hill’s disability. The Arc is committed to fighting for the rights of people with intellectual and developmental disabilities, and we will continue our legal advocacy work to make sure that the U.S. Supreme Court ruling on this issue is followed in jurisdictions across the country,” said Peter Berns, CEO of The Arc.

Hill’s legal team had also appealed to the U.S. Supreme Court to step in to stop the execution on the grounds of the Atkins v. Virginia decision, while simultaneously pursuing the state law issue. The U.S. Supreme Court has not responded to this request yet.

The Arc, the nation’s largest civil rights organization for people with intellectual and developmental disabilities (I/DD), has been involved in this case filing an amicus brief before the Supreme Court in earlier proceedings, and supporting Hill’s defense team through letters to the Georgia Board of Pardons and Paroles and the District Attorney urging his sentence be commuted to life without parole. In this most recent effort, The Arc called for the Supreme Court to step in and issue a stay to prevent the state of Georgia from executing Hill.

In 2002, the Supreme Court ruled in the Atkins v. Virginia case that executing inmates with intellectual disability (ID) is unconstitutional. But in Georgia, ID must be proven “beyond a reasonable doubt” by the defendant, the strictest standard in the country.

 

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Governor Quinn Earns Top National Honor as “Champion” for People With Disabilities

/in /by The Arc

Illinois’ Rebalancing of the Disability System Cited as a “Model for the Nation”

CHICAGO – Governor Pat Quinn is being recognized by The Arc of the United States for his work to offer people with intellectual and developmental disabilities the opportunity to live in a community of choice.  The Advocacy Matters! Award is The Arc’s most prestigious honor and presented to those who demonstrate the ability to promote and protect the civil and human rights of people with disabilities and increase resources, services and supports that promote their full inclusion and participation in the community. Governor Quinn has been a long time advocate for people with disabilities, and this award acknowledges his leadership in closing state institutions and shifting resources to offer people with disabilities the opportunity to live more independently and thrive in their communities.

The nominating petition further credited Governor Quinn for signing a Consent Decree that will move 3,000 individuals with disabilities off the state’s waiting list and provides the choice of small community living options to the 7,000 people who live in Intermediate Care Facilities for people with Developmental Disabilities (ICFDD’s).

“Everyone in Illinois – regardless of the challenges they face – deserves the opportunity to reach their full potential,” Governor Quinn said. “We are changing the status quo in our state from an over-reliance on outdated institutions to investing in community, in people and in their potential.

It is an honor to receive this recognition as we keep working on our mission of improving care for people with disabilities, so they can lead more independent and fulfilling lives.”

The Arc of Illinois nominated Governor Quinn in May citing his tireless efforts to “bring Illinois out of the dark ages” and set the tone for “best practices to make life better for people with intellectual and developmental disabilities.”

“This is a Governor that does things for the right reasons and is relentless in his determination to put people with disabilities before politics,” says Tony Paulauski, executive director of The Arc of Illinois. “Governor Quinn’s vision in rebalancing the disability system is a model for the nation and one that all Illinoisans can be proud of.”

In 2009, the Governor began collaborating with disability advocates throughout the state to develop a person-centered plan to help people with disabilities reach their full potential by providing funding and resources for them to live in the community with the proper supports and services. Two years later he announced his Rebalancing Initiative, including plans to close state institutions and provide community living options for more than 900 people. Two state institutions have been closed to date and Murray Developmental Center in Centralia is scheduled to close later this year.

In May, the General Assembly passed House Bill 2591, a bill that will make Illinois an Employment First state, a priority outlined in Governor Quinn’s 2013 State of the State Address. Governor Quinn will be signing the bill into law Tuesday at an event celebrating the 23rd anniversary of the Americans with Disabilities Act.

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Supreme Court Must Act to Save Georgia Man With Disability From Imminent Execution

/in , /by The Arc

Washington, DC – With just a few days before the scheduled execution of Warren Hill in Georgia, The Arc calls for the Supreme Court to step in and issue a stay to prevent the state of Georgia from executing Hill who experts have unanimously determined has an intellectual disability.

“Warren Hill is nearly out of time, and the Supreme Court has an obligation to act before his life is taken away from him unjustly. The facts speak for themselves – experts have unanimously agreed that he has an intellectual disability, and the Supreme Court has ruled that people with intellectual disability cannot be executed. There is no room for interpretation – the Supreme Court must act,” said Peter Berns, CEO of The Arc.

In 2002, the Supreme Court ruled in the Atkins v. Virginia case that executing inmates with intellectual disability (ID) is unconstitutional. But in Georgia, ID must be proven “beyond a reasonable doubt,” one of the strictest standards in the country. The Arc participated in an amicus brief before the Supreme Court in earlier proceedings in this case, and supported Hill’s defense team through letters to the Georgia Board of Pardons and Paroles and the District Attorney urging his sentence be commuted to life without parole.

“The entire disability community will be watching for the Supreme Court to issue a stay in this case. It’s the right thing to do, and it upholds the Court’s previous ruling that executing a person with an intellectual disability is unconstitutional,” said Berns.