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.

UCP Visits the Abilities Expo!

UCP made a trip to Edison, New Jersey for the New York Metro Abilities Expo a couple weeks ago. The Abilities Expo brings together vendors, organizations and disability-centered initiatives for three days for those to explore the latest and greatest in all things disability related. Staff from UCP National visited the Expo on May 2nd and 3rd, networking with several organizations and fellow Expo-goers.

 

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UCP Staff with the crew from the [dis]ABLED InsideOut collaborative.

Some of the highlights from the Expo included: The Panthera X, a carbon-frame chair that weighs only nine pounds with the wheels attached, with the frame itself only weighing four pounds. Other cool and notable technology included Smart Drive, which allows a manual wheelchair user to be able to steer their chair by just tapping on the wheels.

The UCP Staff hadopportunity to be apart of the large-scale and collaborative art project [dis]ABLED InsideOut, which is being lead by French actress and activist Leopoldine Huyghues-Despointes and artist JR. The goal of the project is to help bring awareness to disability, as well as to play a role in helping to challenge stereotypes that those with disabilities often face. The staff members who participated in the project were all born with Cerebral Palsy and were honored to be apart of the [dis]ABLED movement.

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Some of the assistive devices on display at the Expo.

 

The biggest highlight of the Expo was, without a doubt, getting to meet and connect with so many wonderful and like-minded people with disabilities. There was great camaraderie and conversation. It’s an amazing thing to see such a strong amount of activism in one space.

If you have a chance, go check out the Abilities Expo when it comes to your city!

 

 

UCP at the “Margarita, With A Straw” NYC Screening!

On May 4, 2015, members of the staff at UCP National were invited to the New York City screening of the film “Margarita, With A Straw” at the Paris Theatre as part of the New York Indian Film Festival. The film centers around a young woman named Lila, a college student with Cerebral Palsy who is studying music. The film explores her desire to be loved and accepted for who she really is, while trying to navigate the world in her power chair. In the beginning of the movie, you see Lila in the mists of trying to win the affection of her band’s lead singer, Nima. After Nima rejects her advances, Lila learns that she has been admitted into New York University.

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UCP and CPIRF staff with lead actress, Kalki Koechlin (Lila).

Lila suddenly goes from her small college in New Delhi to the big streets of NYC. On her first week in the city, Lila happens upon a protest. During the protest, police begin to tear gas the crowd; this is where Lila meets Khanum. Lila and Khanum quickly begin a whirl-wind romance and are soon living together. Lila begins to come to grips with her sexuality, knowing that she will soon have to come out to her closest family member and her caretaker: her mother. Through a series of revelations, Lila’s family and relationship are turned upside down. Lila soon learns that she doesn’t need to seek validation from others, but in herself.

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UCP with the film’s director, Shonali Bose.

After the movie, the film’s director, Shonali Bose, and its stars Kalki Koechlin (Lila) and Sayani Gupta (Khanum) talked about how they got into character and prepared for their roles. UCP had the opportunity to meet both Koechlin and Bose, take photos and discuss their thoughts and feelings on the film. For some of the staff at UCP National, three of which were born with Cerebral Palsy, this film was the first time they had really seen a portrayal that echoed parts of their own experiences on screen.

What sets “Margarita, With A Straw” apart from other films about Cerebral Palsy or disability, is the way you see Lila: She is not an underdog or a source of inspiration. She is just living her life, while trying to find her place in the world. As a viewer with or without a disability, you can identify with parts of Lila’s journey. This film gives viewers a look into the struggles that some face with a disability, because in the end, we all want to be loved and accepted for who we are.

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.

Cleveland Clinic Children’s and UCP of Greater Cleveland Co-Host “Go Baby Go”

Kids, start your engines! Cleveland Clinic Children’s and UCP of Greater Cleveland will kick-off Northeast Ohio’s first Go Baby Go workshop, Saturday, May 16 at UCP of Greater Cleveland.

UCP Cleveland

Cleveland Clinic

National Interstate Insurance will supply equipment to engineer 25 ride-on toy cars designed to put local youngsters with disabilities on the fast track to mobility. Skilled craftsmen will customize cars to the unique personality of each youngster before families count down for the tykes to take the wheel during a special a “drive time” race. Backed by support of more than 100 skilled craftsmen and families, Go Baby Go Cleveland is the largest volunteer event in the organization’s history.

Go Baby Go was created in 2006 by Dr. Cole Galloway – who will attend the event. He is the associate chair of the University of Delaware’s Department of Physical Therapy. The program was created to give children with spina bifida, cerebral palsy, Down syndrome and other mobility disabilities a chance to socialize, move around more easily and keep up with their siblings and peers.

Studies show that the power of independent mobility supports the development of strong cognitive, social, motor, and language skills in young children.

Go Baby Go Cleveland is presented in partnership with Cleveland Clinic Children’s, Cleveland State University, Health Aid of Ohio, Miller’s, National Seating & Mobility, National Interstate Insurance, Permobil, Replay for Kids, and UCP of Greater Cleveland.

More About Cleveland Clinic Children’s

Cleveland Clinic Children’s is a part of the Cleveland Clinic health system and offers full medical, surgical and rehabilitative care for infants, children and adolescents. Cleveland Clinic Children’s supports 126 acute care beds at Cleveland Clinic’s main campus and 284 pediatric beds system wide; in addition, pediatric services are available at 43 Clinic sites in Northeast Ohio. A staff of more than 300 full-time pediatricians and sub-specialists see 800,000 pediatric visits each year and provide hospital care for 18,000 children per year. Cleveland Clinic Children’s is a non-profit, multi-specialty academic medical center integrating clinical care, research and education. Cleveland Clinic Children’s consistently ranks among the “Best Children’s Hospitals” by U.S.News & World Report. Visit us online at www.clevelandclinic.org/childrens and on Facebook at www.facebook.com/clevelandclinicchildrens.

More About UCP of Greater Cleveland

The mission of UCP of Greater Cleveland is to empower children and adults with disabilities to advance their independence, productivity and inclusion in the community. The not-for-profit organization serves 1,100 children and adults with disabilities from Northeast Ohio and maintains a staff of over 170 employees offering comprehensive Children’s Services and Adult Services. With low administrative costs, 92 cents of every contributed dollar goes directly to the programs and services offered to children and adults. The headquarters of UCP of Greater Cleveland – the Iris S. and Bert L. Wolstein Center – are located at 10011 Euclid Avenue, Cleveland, 44106. The agency has two other locations in Westlake and Highland Hills, as well as two group homes and various vocational sites throughout Greater Cleveland. Please visitwww.ucpcleveland.org.

 

UCP Affiliates Earn Awards for Excellence

UCP would like to congratulate our 2015 Awards for Excellence winners! Thank you for your hard work and dedication you show to our affiliates organizations and people with disabilities and their families in your communities. These amazing programs and people will be honored at UCP’s Annual Conference in Chicago May 20-22.

The 2015 Award Winners:

Nina Eaton Program of the Year
Life Without Limits Clinic (nominated by UCP of Greater Birmingham)
This award is given to a program or service of a UCP affiliate that has made an extraordinary contribution to the quality of life of people with disabilities, enabling individuals served to become more independent, productive, or integrated into the family or community.
Ethel Hausman Volunteer of the Year
Dr. Eva Ritvo (nominated by UCP of South Florida)
This award is given to a volunteer who has made an outstanding contribution to a UCP affiliate and to the quality of life of people with disabilities.
Outstanding Youth
Daniel Lopez and Lake Periman (nominated by  UCP of Central Florida)
This award honors youth who have significantly enhanced the lives of people with disabilities through care giving, volunteerism, advocacy, innovation or fundraising.
Life Without Limits
O’Ryan Case (nominated by UCP National Staff)
This award goes to an individual with disabilities who has demonstrated leadership and achievement of such caliber as to be a significant role model to individuals with and without disabilities.
In addition to these awards, UCP will be honoring 100 outstanding volunteers at the Annual Conference, which we call our Victory 100. UCP believes in the strength of its volunteer network and values volunteers as the working core of the UCP family. The organization was founded through the efforts of volunteers, and we continue to build on that strength. The UCP Victory 100 Awards recognize the dedicated volunteers who have given 100 or more hours of support to UCP through our affiliates across the country.

Disability Policy Seminar Brings Advocates to Capitol Hill

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Almost 700 disability advocates gathered at The Renaissance Hotel in downtown Washington, D.C.April 13-15 for the annual Disability Policy Seminar. Co-hosted each year by UCP, The Arc, SABE, AAIDD, AUCD and NACDD, this event brings together advocates, policy experts and people with disabilities and their families on Capitol Hill to discuss current policy issues important to people with intellectual and developmental disabilities and to advocate for top priority policies by going directly to their representatives in Congress.

Take a peek at the event courtesy of photos from AUCD at https://www.flickr.com/photos/aucd.

Visit disabilitypolicyseminar.org for more general information about the event and to plan for next year.

 

Videos Show That #CerebralPalsyCAN During Awareness Month

March is National Cerebral Palsy Awareness Month. Throughout the month, United Cerebral Palsy will be encouraging people with cerebral palsy to share the many things they enjoy and can do using the hashtag #CerebralPalsyCan on social media. On March 25, National CP Awareness Day, UCP and our partners in this campaign (listed below) will will feature submitted videos on our social media channels and websites.

Cerebral palsy (CP) is a broad diagnostic term used to describe a problem with movement and posture, due to damage or abnormalities in the brain that makes certain activities difficult. It is the most common motor disorder and the second-most common disability found in children. UCP aims to demonstrate through short, light-hearted videos that people with cerebral palsy have a range of interests and abilities, and in that respect are no different than anyone else. Find out more about the campaign and watch the video on My Life Without Limits, UCP’s new online resource and community for individuals with a range of disabilities at www.mylifewithoutlimits.org.


#CerebralPalsyCan Campaign Partners

United Cerebral Palsy: http://ucp.org/
My Life Without Limits: http://mylifewithoutlimits.org/
HandicapThis!: http://handicapthis.com/
Love That Max: A Special Needs Blog: http://www.lovethatmax.com/
The Cerebral Palsy Swagger: http://cpswag.blog.com
Ms. Wheelchair Michigan: http://www.mswheelchairamerica.org

New Resource for People with Disabilities Driven by Community

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Washington, D.C. (January 6, 2015) –UCP is pleased to introduce a new community-driven resource for people with disabilities called My Life Without Limits. This initiative is a natural companion to UCP’s My Child Without Limits program, which was developed for the parents and family members of children with disabilities. A flagship website and online community, www.mylifewithoutlimits.org, will serve as the new program’s focal point and is intended to become an online hub for people with a range of disabilities.

My Life Without Limits is designed to allow people with disabilities to join and receive the latest news and other benefits of community membership such as writing guest blogs, commenting on posts and resource pages and participating in polls and surveys. In the forum – coming soon – members can stir up conversations and ask for advice. Information and resources pertaining to education, entertainment and lifestyle, health and wellness, travel, relationships and more will be available and updated, with guidance from community members themselves. And, people can share new resources or upcoming events on the site or using the #MyLifeWithoutLimits hashtag on social media

UCP’s Director of Membership and Public Education talks about his personal connection to this project in a new blog: “Connecting with others who have a disability is something that I never really did until I started working at UCP. Until then, I must have known less than a handful of others,” he said.

“When I joined UCP, my life changed. I began to understand how there are so many other people with disabilities (one billion worldwide). Immediately, our stories were shared– those related to growing up and our relationships, jobs, goals and more. This connection is one that everyone should have the opportunity to experience.”

The initiative’s flagship website, http://www.mylifewithoutlimits.org, launched Monday, January 5 and  an online forum will be added soon. Later this year, we will announce more activities – both online and off – for the program.

Congress Passes ABLE Act

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The U.S. Senate passed the Achieving a Better Life Experience (ABLE) Act of 2014 by a vote of 76 to 16 late Tuesday evening, agreeing with the House of Representatives that the bill should become law. President Obama is expected to sign the bill soon.

The ABLE (Achieving a Better Life Experience) Act allows individuals with developmental disabilities and their families to save money tax free for their disability service needs, and allows these assets to be exclude for purposes of eligibility to receive needed government supports including Medicaid, Supplemental Security Income (SSI), and Social Security Disability Insurance (SSDI). ABLE addresses barriers to independent living because individuals’ access to certain essential government funded programs can be lost once they establish a minimal level of income and savings.

Beginning in 2015, children or adults who acquire a disability before age 26 will be able to annually save up to the amount of the IRS gift tax exclusion, currently $14,000, and up to $100,000 total while remaining eligible for public programs such as Medicaid and SSI.  The ABLE Act will allow for similar certain individuals with disabilities and their families to maintain savings accounts similar to 529 saving plans for education.

Once the President signs the ABLE Act, the federal government will issue guidance on exactly how to set up and fund ABLE savings plans.