Summary of SSA Comments

 

Recently, United Cerebral Palsy submitted comments regarding the implementation of the National Instant Criminal Background Check System (NICS) and the potential impact on individuals with mental disabilities.  

 

The Notice of Proposed Rulemaking concerning “Implementation of the NICS Improvements Act of 2007” is a proposed rule with no solid foundation. It incorrectly assumes that there is a connection between an increased risk of engaging in gun violence and having a representative payee to manage one’s Social Security benefits due to an impairment found on a “mental impairment” listing.

 

Four main reasons to urge Social Security Administration (SSA) to withdraw the proposed rule and why United Cerebral Palsy opposes it:

 

First, the National Instant Criminal Background Check System (NICS) requires the reporting of an individual to the FBI NICS database if they “lack the capacity to contract or manage his own affairs” as a result of “marked subnormal intelligence, or mental illness, incompetency condition or disease.” Having a representative payee does not meet this standard.

 

Second, this would create an ineffective strategy to address gun violence. It assumes that those with mental impairments are potential perpetrators of gun violence. It would create a false sense that meaningful action has been taken to address gun violence.

 

Third, this would perpetuate the incorrect association of mental disabilities with gun violence. This could dissuade people with mental impairments from seeking appropriate treatment or services, or from applying for financial aid and medical assistance programs.

 

Fourth, it would create new burdens on the SSA without providing new resources. This proposed rule would divert scarce resources away from the core focus of the SSA.  

 

See the formal comments here.

 

 

 

UCP’s 2016 Annual Conference in Las Vegas!

United Cerebral Palsy held its Annual Conference on April 4-6, 2016 at the Vdara Hotel and Spa in Las Vegas. This year’s theme for the conference was “Going All In.” UCP affiliates from across the country gathered to take part in this year’s conference with a special focus on the future of UCP.

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Rupal Patel, PhD., founder of VocalID giving the keynote address at UCP’s Annual Conference on April 5, 2016 in Las Vegas.

The first full day of the conference began with the opening plenary on innovation and technology. Featured speakers included: Bruce Borenstein, CEO of AfterShockz, a company that creates headphones which use vibrations to communicate sound, unlike typical over-the-ear or in-ear headphones. Mr. Borenstein gave one of three keynote addresses, which centered on using technology to create accessibility to better the lives of people with disabilities and their families. 

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David Carucci, Executive Director of UCP of San Diego was the recipient of the Kathy O. Maul Leadership Award, pictured with Anita Porco, Vice President of Affiliate Network and Stephen Bennett, President/CEO of UCP National at the evening reception held on April 4, 2016.

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Bruce Borenstein, President and CEO of AfterShockz giving the opening keynote address at on April 5, 2016 at UCP’s Annual Conference in Las Vegas.

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Rick Forkosh, CEO of UCP Heartland being honored at the evening reception at UCP’s Annual Conference on April 4, 2016 in Las Vegas.

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Jeff Snyder, CEO of UCP of Central California being honored at the evening reception on April 4, 2016.

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Dr. Homayoon Kazerooni presenting on SuitX at the Opening Session at UCP’s Annual Conference held on April 5, 2016 .

Dr. Rupal Patel, another keynote speaker, gave the audience a glimpse of the amazing work that is being done at her company, VocalID.  Finally, Dr. Homayoon Kazerooni of SuitX spoke about the advancements on gait training for those living with CP, and the work of SuitX to try and create customized, user-friendly experiences for all. During the evening, a reception was held where we recognized our retiring Executive
Directors and CEOs. Jeff Snyder, CEO of UCP of Central California, was honored along with Linda Johns, Executive Director of UCP of East Central Alabama; Rick Forkosh, CEO of UCP of Hartland; Carol Hahn, Executive Director of UCP of Nebraska; and Les Leech, CEO of UCP of Southwest Florida. A special congratulations goes to Dave Carucci, Executive Director of UCP of San Diego on receiving the Kathy O. Maul Leadership Award, which honors one outstanding executive director each year.

A “Town Hall” style meeting was held on Tuesday April 5, 2016. This was an opportunity for our affiliates to come together and voice their thoughts and opinions, as well as to discuss the future of UCP.  We celebrated our Awards for Excellence winners at a special luncheon. The Awards for Excellence Luncheon recognizes the hard work and time of the wonderful volunteers who donate their time to our affiliates across the country.

The Nina Eaton Program of the Year Award was awarded to UCP of Oregon and Southwest Washington for their Employment Solutions Program. The Ethel Hausman Award went to Maren Jacobs of UCP of Berkshire County. The Ethel Hausman Award honors a local UCP volunteer who has made an outstanding contribution to UCP and to the quality of life of people with disabilities through their work.The Outstanding Youth Award was presented to Rachel Prior for the volunteer work with UCP of Greater Cleveland. The “Life Without Limits” Award was presented to Phillip Evans.

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Rachel Prior accepting The Outstanding Youth Award for her work with UCP of Cleveland.

After the Awards for Excellence Luncheon, affiliates were invited to take part in facilitated small group discussions. These discussions also served as an opportunity to give thoughts and opinions on the future of UCP and the affiliate network.

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Phillip Evans receiving the “Life Without Limits” Award at UCP’s Awards for Excellence Luncheon on April 5, 2016.

Breakout sessions were held on the last day of the conference. The topics for the breakout sessions included: The Future of Early Childhood Intervention with Dr. Jim Blackman, Medical Consultant for UCP; “Making It Work,” featuring The Employment Workgroup, which discussed employment for people with disabilities; and “ABC’s of Caregiving” presented by UCP’s Director of Advocacy, Jennifer McCue. “ABC’s of Caregiving” focused on the recent ruling from the Department of Labor on overtime for caregivers.  Stephen Bennett, CEO of UCP National, presented on the “The State of Disability Today.” This was a special session held for our sponsors and exhibitors to learn more about the current disability community and as a business how they can best serve them. 

The winners for our
“Exhibitor Bingo” were also announced at the end of the conference.
Congratulations to the winners: Chris Adams of Stepping Stones, Inc. in Cincinnati; Mike Ward of UCP of Metro Detroit; Lynn Carpentier of Gillette Children’s Specialty Hospital/UCP of Minnesota; Monica Elsbrock of UCP of Nevada; Donna Fouts of UCP of Hawaii and Dr. Dave Piltz of UCP of West Central Wisconsin. A special thank you to Convaid, Troy Technologies, and AfterShockz for their generous donations for our “Exhibitor Bingo.” The prizes totaled over $6,000 and will given directly to clients in each affiliate’s territory.
Thank you to all who helped to make this year’s Annual Conference such a success!

 

 

THANK YOU TO OUR SPONSORS:

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The Latest Legislative Update from UCP

As October comes to an end we wanted to provide you with a quick wrap up of what’s happened, what is on the horizon and why it matters for you.iStock_000012685951XSmall

Let’s recap where we are with funding for the federal government: Early in the month Congress was faced with an expiring budget and the threat of a government shutdown. In quick action they voted on and passed a Continuing Resolution (CR) – this extends the current budget through December. The CR really serves as a patch to provide Congress with a bit more time to put together and vote on a longer-term budget. Conversations are currently underway to have a budget on the table that may possibly even extend through November 2016. We are constantly watching the discussions to see how disability programs funded through National Institutes of Health, Administration for Community Living, and Centers for Disease Control and Prevention are shaping up. These are the programs that provide services and supports necessary to live independent, high quality lives and have the most impact on our UCP universe. On the horizon is the upcoming debate of reauthorizing the debt ceiling. During all of these important discussions, Speaker of the House John Boehner announced that he is resigning and the search for his replacement is currently ongoing. As Congress continues to work through these issues we will continue to monitor and keep you posted.

In addition to the federal funding issues, there have been a few policy developments we want to update you on:

Home Care Rule

First, the Supreme Court issued a statement that it would not revisit the Department of Labor’s rule focused on compensation and coverage of personal care assistants, referred to as the Home Care Rule.This new rule, set to go into effect by the end of the year, would extend minimum wage and overtime protections to home-care workers. The new rules do not apply to home-care workers who are hired directly by patients or their families, but only to those who are employed through businesses, including nonprofit organizations such as United Cerebral Palsy. At UCP, we want to ensure the best outcome for both the workers who provide in-home care as well as those who depend on receiving it. With the rule in place, our focus is now to work with others to ensure that Medicaid state agencies provide reimbursement rates that enable caregivers to continue to provide the quality critical support people with disabilities need to live independently. Read our latest update here.

As implementation of the rule moves forward, we will provide you with information and resources on how to ensure these services are covered.

Reimbursement for Complex Rehab Technologies

The process for which the Centers for Medicare and Medicaid (CMS) reimburses tools and technologies used by the disability community through a competitive bidding program and over the years, we have updated you on the potential harms that competitive bidding has when it comes to accessing wheelchairs and other equipment classified as complex rehabilitation technology. There are two pieces of legislation right now that are attempting to address this harms. First, is a larger piece of legislation called “The Ensuring Access to Complex Rehabilitation Technology Act” of 2015 that seeks to solve the long-standing reimbursement problem by creating a new benefit category for complex rehabilitation technology. We are working with others here in DC to support this legislation and determine the best path forward to insure that those that need and utilize these technologies can have access to them.

Another more pressing issue as it relates to reimbursement of wheelchairs is a recent decision made by CMS to limit payment for complex wheelchair accessories. This is concerning as accessories is being defined as all customizable and individually configured components that are integral to a functioning char. This new decision will go into effect January 2016.

In an effort to reverse this decision, Congressman Zeldin of New York has introduced legislation (H.R. 3229) which would prevent the proposed rates from going into effect.  We sent an alert asking for you to call your Member of Congress and tell them to support this legislation. View our alert here and Call your member!

We also want to hear from you about why complex rehabilitation technology is important to you –what the impact would be if these new rates went into effect and limited your ability to afford and access this equipment? Send us your story so we can share it with decision makers!  

Story Behind Viral Photo Better Than You Think

 

Dan Garringer_Viral Image

McDonald’s employee Kenny helps Dan Garringer with Meal

Chicago, IL (September 25, 2015) – The full story of the man pictured in a photo that went “viral” this week is even more touching than you might imagine. The snapshot posted to Facebook by a customer showed McDonald’s employee Kenny helping Dan Garringer cut and eat his food. Many news outlets reported that Dan ordered his food then requested some help from Kenny, who promptly closed his till at the busy Union Station restaurant and helped Dan eat his meal. More than 1 million people have liked and shared the photo on social media, with many commenting about Kenny’s compassion and kindness. Kenny was given special recognition by the owner/operator of his McDonald’s franchise.

What many of those commenters don’t realize is that this photo speaks volumes to those who know the story of Dan’s life. Dan has cerebral palsy and has strived his entire life to live as independently as possible as a participating and valued member of his community.

“People with disabilities are just like everyone else.  We love life and being part of our community.  We go to restaurants, stores, the movies and coffee shops and take Metra and public transportation to be able to experience life as everyone else does,” Dan said. “I know that Kenny is getting all of the credit, but, in my mind, he is representing all of the employees at the Union Station McDonald’s. They are wonderful, caring people who make me feel that I am just like everyone else, and they do not treat me like I am a person with a disability…they treat me like I am just Dan, someone that loves McDonald’s fries.”

In 1993, Dan and his wife Clarina – who passed away last year – moved in a group home where UCP Seguin of Greater Chicago can provide the support and services he needs. UCP Seguin is an affiliate of United Cerebral Palsy, a nonprofit organization for people with disabilities.

Dan spent his childhood with his family but moved into a nursing home as an adult, where he met and married his wife. For years he was told he was “too handicapped” to work. But after he connected with UCP Seguin, he worked with a case worker to pursue a writing career. For more than a decade, he wrote a column for his local newspaper Suburban Life called “The View from Here.” Using just a thumb and forefinger on one hand, Dan wrote about human potential and advocated for people with disabilities to be fully included in life – concepts neatly captured in this one image.

“Dan often wrote about experiences very much like this…and many times the opposite of this, as he was faced with discrimination, insults, and worse,” said Jim Haptonstahl, Executive Vice President of UCP Seguin “He has been overwhelmed by the reaction to this story. But he’s good with it, if it promotes greater acceptance and inclusion of people with disabilities in society.”

United Cerebral Palsy and its affiliates such as UCP Seguin advocate for that greater acceptance and inclusion, providing the services needed to ensure that people like Dan have the care, education, employment, housing and other opportunities they need.

“Every one of us has certain challenges,” said Jim. “Dan’s challenges mean he sometimes needs a little help from his fellow community members. Kenny gets that. And, that’s cool.”

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About UCP Seguin of Greater Chicago

Seguin of Greater Chicago is a 501(c)(3) nonprofit human services agency dedicated to enriching the lives of people with disabilities. Providing programs and services from birth to old age, UCP Seguin helps children and adults with disabilities achieve their potential, advance their independence and act as full members of the community. Its programs include innovative training and education, family support, employment and life-skills training, residential services, and foster care. For more information, visit www.ucpseguin.org.

 

Supreme Court Decision a Big Win for People with Disabilities

UCP Applauds Decision to Uphold Pillar of Affordable Care Act

UCP applauds the decision made by the U.S. Supreme Court this morning upholding a key pillar of the Affordable Care Act: the availability of subsidies to participants in federally-established health care exchanges as intended by Congress.

The Supreme Court’s opinion in King v. Burwell, decides the question of whether the Affordable Care Act precludes the IRS from extending subsidies to participants in states that have not set up their own health insurance exchanges. The Fourth Circuit had previously held that the text of the ACA — stating that subsidies were available to exchanges “established by the State” — should be interpreted to make subsidies available to participants in federally established exchanges as well. The Court affirmed the Fourth Circuit, maintaining the status quo.

People with disabilities are especially impacted by the decision. Prior to the ACA, many people with disabilities were denied coverage due to a pre-existing condition or were priced out of the insurance market. A large number of people with disabilities are not in the labor force and lack access to employer sponsored insurance. And in many states with large populations of people with disabilities, the states refused to set up exchanges leading to the establishment of the federal exchange. The ability to take advantage of credits and subsidies offered through the federal exchange is critical to ensuring that the exchanges can continue to provide affordable health insurance.

“The Court’s opinion is a big win for people with disabilities and their families and caregivers,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “For those who need to purchase health care coverage through the federal exchange – including many caregivers who have given up employer sponsored benefits in order to care for their loved ones with disabilities, affordable health care is a must. No family should go broke because they or their loved one has a medical need.”

In the 6-3 opinion by Chief Justice Roberts, Justice Scalia dissented, joined by Justices Thomas and Alito.

Emily Gillis’ Journey to a Law Degree

Emily Gillis is set to graduate for Suffolk University Law School in Boston this coming Saturday. Emily’s law school journey has been different from most of her peers, her father, Joseph Gillis Jr., has taken her to every single class throughout her three years as a law student. Gillis was born with spastic-quadriplegic Cerebral Palsy and uses a power chair to get around.

Joseph Gillis would drive his daughter to her stop on MBTA’s Red Line everyday, often waiting patiently for hours between Emily’s classes, pick her up from the stop and drive them back to the apartment they shared together in Whitman, Massachusetts. He would often accompany Emily to her classes, helping to set up and break down her computer and would wait for her between classes, making sure she had everything she needed. When Emily was denied an aide for both school and at home, her father jumped at the chance to help his daughter succeed, already knowing how to navigate Boston, it was a perfect fit. “There are no words to describe what my dad has done for me.”, Emily says.

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Emily Gillis and her father, Joseph Gillis, Jr.

 

This incredible moment is about her hard work, her dedication and the support of her dad. When asked why he went to such great lengths, Joseph Gillis replied: “I think every parent would have done the same thing if they had the chance- “I’m just glad I had the opportunity to do so.” Emily graduated from the University of Maryland with a degree in Criminology in 2010; she has known she wanted to become a lawyer since her freshman year of high school. Those at Suffolk Law took notice of her father’s unwavering support, Associate Dean of students, Ann McGonigle Santos said “…He has given Emily a gift to thrive and lay the foundation for her to become an attorney in whatever field she pursues.” On Saturday, she will have a full cheering section, including her mother, Mary, who’s been battling cancer for the last few years and her younger sister, Kimberly.

For both Emily and Joseph, this is the end to what Emily calls a “bittersweet” journey and a future full of great experiences that await her.

 

From all of us here at UCP: Congratulations, Emily! And best of luck with whatever path you choose to follow!

Special Thank you to Tony Ferullo from Suffolk University’s Office of Public Affairs, CBS Boston and the Boston Globe for helping to contribute to this blog post.

Join Us for an International Day of Acceptance

United Cerebral Palsy and #MyLifeWithoutLimits has proudly pledged our support of 3E Love’s annual International Day of Acceptance. Please consider joining us in the movement for acceptance by wearing your heart on your sleeves and sharing your #DayofAcceptance story this Tuesday! January 20 is dedicated to the social acceptance of disability and to honor the late Annie Hopkins, founder of 3E Love and creator of the International Symbol of Acceptance pictured below. Learn how you can get involved at www.dayofacceptance.com. What does acceptance mean to you? Share your #DayofAcceptance story and photos here. And, use the #DayofAcceptance or #MyLifeWithoutLimits hashtags and tag @UCPNational to share on social media. Here are some stories that have already come in:

UCP-DayOfAcceptance 2015
At UCP, we focus on a single goal: ensuring people with disabilities and their families have the opportunities we all deserve. We want to remove barriers that might stand in the way of seizing those opportunities. And, one of the biggest barriers can be simple acceptance. Most people don’t set out to deny opportunities to the rest of us. It happens because most people are concerned with their own challenges and don’t stop to think of others. People with disabilities deserve to enjoy the same opportunities as their neighbors. We are all valued members of our communities. We all want the same things in life, some of us just have different challenges.” – Stephen Bennett, UCP President & CEO

IDOA_Lauren

 

I imagine a world where people with disabilities are empowered to be fully functioning members of a society where we, people with disabilities, are accepted for who we are and the stigma of difference no longer exists.  A world where people can look past what makes us physically different and see what all we are capable of doing. #DayofAcceptance” – Lauren

ZIDOA Zachach and I met at MDA camp, became friends, and then more. We celebrate acceptance because it allowed us to find each other. We’re looking forward to our wedding in September where we can celebrate our love with our wonderful friends and family who support us! #DayOfAcceptance – Dawn
IDOA Whitley
My name is Whitley Hodges and I was injured in a car crash in 2009. I spent 3 months in the hospital with broken ribs and a crushed spinal cord. I now live with a spinal cord injury and use a wheelchair for daily mobility. My life has changed dramatically since my accident. 
Knowing the life I had before and living the life I live now makes me really appreciate the little things in life. Everyday is worth living, as hard as it may be it is important to accept yourself and others for the people they are. No matter what other human beings look like or despite any type of stigma society, people or the media have placed on people with disabilities, we all have the same need in life to be wanted and accepted. Acceptance is important to me, because I am able and discriminating against others is wrong.” – Whitley

#HalloweenWithoutLimits Contest Crowns Most Creative Costume

In October, UCP hosted a social media contest to find the most inventive, creative and limitless costume for children (or adults) with disabilities. Between October 6 and October 30, more than 50 ingenious entries appeared on UCP’s Facebook and Twitter pages where they competed for “votes” – the most likes, shares and comments – using the hashtag #HalloweenWithoutLimits.

Each of the five winners pictured here will receive a 5-lb. bar of Hershey’s Milk Chocolate and will be featured in UCP’s Full Spectrum e-newsletter on Monday, November 3. The pick for Most Creative Costume made by UCP’s national staff will also win a chocolate bar and be asked to tell the story of their costume on the Voices of UCP blog.

 

Out of more than 16,000 total votes, the winners are:

Dorothy/Wizard of OzThe Little MermaidET Phone Home

 

Princess with Horse-Drawn CarriageBatman

Most Creative Costume Voted on by the UCP National Staff Is: 

Lost Her Head!

 

Honorable Mentions: 

SpidermanDay of the DeadHonorable Mentions

Snow White  ESPN

You can see the final contest entries in a photo album on our Facebook page.

Thank you to our partner, The Hershey Company, for donating the prizes!

Hershey's, The Hershey Company

Help UCP Win $25,000!

Thanks for visiting our page. You can help United Cerebral Palsy win up to $25,000 for people with disabilities and their families by visiting MetLife on Facebook and liking, commenting on and sharing one of the posts featuring UCP.

MetLife Center for Special Needs PlanningThe MetLife Foundation and MetLife Center for Special Needs Planning has generously offered to give UCP $2 for every like on that post as part of the #MetLifeCares campaign for disability employment awareness.

All you have to do is take action and a donation will go to support the advocacy work UCP does at the national level as well as valuable programs such as My Child without Limits and UCP’s Life Labs.

Thank you for your help!