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.

Help “End the Awkward”

UCP is proud to be a part of a the District of Columbia’s “End the Awkward” campaign this July 15.

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To recognize the 25th Anniversary of the Americans with Disabilities Act, the Government of the District of Columbia is sponsoring a one-day campaign to share information raising awareness about disability issues. The campaign, entitled “End the Awkward: Focus on the Person, Not the Disability,” will take place on July 15th and include the participation of numerous government agencies, community organizations, businesses and members of the public.

Participants in D.C. are encouraged to wear “End the Awkward: Ask Me How” pins, prompting questions that are responded to with information on how to act respectfully toward people with disabilities without being awkward. Registration for businesses and members of the public opens today and is free at ohr.dc.gov/page/endtheawkwardDC.

The “End the Awkward” initiative is part of D.C. Mayor Bowser’s Administration’s efforts to strengthen connections between residents, regardless of who they are, where they live or where they’re from.

“The Bowser Administration is asking District businesses, people with disabilities and their allies to participate so we can educate as many residents and visitors about interacting with persons with disabilities,” said OHR Director Mónica Palacio. “Participants in our event do not need to be experts on disability rights issues, but they do need to answer questions in respectful ways. If you manage a business or simply live in or work in DC, I encourage you to sign up on our website and we’ll send you a participant package with everything you need.”

Businesses and members of the public who register by July 8 will be sent an “End the Awkward” participant package that includes colorful “End the Awkward” pins, quick talking points for responding to questions, and additional information about the event. While pins are only being distributed to those with D.C. area addresses, everyone is encouraged to join in by printing out the pin design and sample talking points for the businesses in your area at ohr.dc.gov/page/endtheawkwardDC.

Also, you can help promote the event on social media using #EndTheAwkwardDC! Members of the public can register online at endtheawkwardDC.eventbrite.com and businesses at endtheawkwarddc-business.eventbrite.com. Find out more about how to help spread the word in D.C. and beyond here!

Find Out More About the District of Columbia Office of Human Rights

The District of Columbia Office of Human Rights (OHR) was established to eradicate discrimination, increase equal opportunity and protect human rights for persons who live in or visit the District of Columbia. The agency enforces local and federal human rights laws, including the DC Human Rights Act, by providing a legal process to those who believe they have been discriminated against. OHR also proactively enforces human rights in the District through Director’s Inquiries, which allow it to identify and investigate practices and policies that may be discriminatory.

CP Wiki Write-athon Offers Cash Prizes for Content

The World CP Initiative, in which United Cerebral Palsy plays an active role, has just launched a Wiki that is devoted exclusively to cerebral palsy. Throughout June and July, UCP and the other organizations which make up the World CP Initiative, will be promoting a CP Wiki Write-athon to encourage people to post content on the Wiki.

About the Wiki

For those of you who are not familiar, the Wiki is an online knowledge base on cerebral palsy and related topics for everyone: people with disabilities, parents, caretakers and professionals in the medical and disability fields. It’s just getting started, so we your help to create and improve content and to spread the word.CPWikiWriteAthon

Join the Competition

The CP Wiki Write-athon competition runs throughout June and July. There are 30 x $500 prizes for the best and most content added – including the best organization page and the best country page.

Spread the Word

Anyone can write about CP and take part in the Write-athon. You can write about services, people, sports, technology, travel, health, employment, education, films, books… any CP-related topic.

Please spread the word:

1.  Share this blog post with your family and friends

2.  Print out and post this write-athon poster at your school, workplace, community center, library or other public places you visit

3. Add this news item to your personal blog or website if you have one

4. Replace your Facebook cover pic with the World CPWikicover for June and July

5. Use the simple template on the wikihome page to create a page about CP in the United States

6. ‘Like’ the World CP Day Facebookpage and share the Wiki updates

Jump In and Add Content! 

As you’re browsing the wiki, remember that it’s fine to add or edit wherever you want. Anything you change or do will show up on the wiki for others to pick up and expand on – and as the site grows you’ll see that happening more and more! In the wiki world we say “Be bold!” because anything you do is valuable. Even if you ‘break’ something, a fix is always just a few clicks away – and somebody will come around to fixing it sooner rather than later. So don’t be afraid to give it a try.

 

UCP’s 2015 Annual Conference Wrap Up

UCP’s 2015 Annual Conference, “Reflecting Our Mission, Focusing Our Vision,” concluded in Chicago on Friday with nearly 200 leaders of UCP’s membership gathering to discuss current affairs, honor distinguished colleagues and supporters and share knowledge to improve the network.

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Several special guests, including UCP Celebrity Youth Ambassador, RJ Mitte joined in the sessions. Mr. Mitte is best known for his role a Walter White, Jr. in AMC’s “Breaking Bad.” He actively supports disability causes and speaks about his experiences as an actor with a disability to raise awareness. He just  wrapped several feature films over the last year, including DIXIELAND starring alongside Faith Hill and Riley Keough, which just premiered at the Tribeca Film Festival in 2015 and was first role he’s portrayed a character without a disability.

In addition to sharing his views on the future for people with disabilities in a session called “Reflecting on Our History, Focusing on our Future,” he presented UCP’s annual Outstanding Youth Award honoring Daniel Lopez and Lake Periman and Life Without Limits Award honoring O’Ryan Case. Daniel and Lake have made a huge impact on their central Florida community of Lake Mary, raising thousands of dollars for United Cerebral Palsy of Central Florida over the past four years. They have worked tirelessly to organize events and engage the media and their community to raise awareness about cerebral palsy. O’Ryan Case is an individual with CP who has demonstrated leadership and achievement to such a degree that he is a significant role model to people with and without disabilities through his work at UCP’s national office.

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Dr. Eva Ritvo was awarded with the Volunteer of the Year Award for her work and efforts for UCP of South Florida. And, Dr. Charlie Law and UCP of Greater Birmingham were recognized for their Life Without Limits clinic with the Outstanding Program of the Year award.

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Lake_RJ_DanielAlso, UCP was honored to hear from Joe Russo, Deputy Commissioner from the Chicago Mayor’s Office for People with Disabilities who spoke about the ADA’s 25th Anniversary celebration in Chicago. He joined a panel with Mr. Mitte, CEO of UCP of NYC Ed Matthews and the venerable Jack Schillinger to discuss the past, present and future of UCP.RJ_Joe Russo_Gloria_Armando_Central AZ
Jack Schillinger, Chair Emeritus of UCP of South Florida and current Bellows Fund Chair celebrated his 95th birthday with the honor of UCP’s Chair Award given by Gloria Johnson Cusack in recognition of the direct impact he has had on the lives of people with disabilities and their families during his long career.

Linda Johns, CEO of East Central Alabama United Cerebral Palsy was given one of the most prestigious honors this year, receiving the Kathleen O. Maul Leadership Award. This is presented to an affiliate leader who embodies the leadership characteristics that were embraced by Executive Director, Kathy Maul, for whom the award is named.Maul Award Winner

On Wednesday evening, the attendees were joined by the winning teams who competed in UCP Life Lab’s Innovation Lab, held on Tuesday and Wednesday And, on Thursday evening, UCP held a special screening of “Margarita With a Straw” – a critically-acclaimed film about a woman with cerebral palsy. The movie was inspired by the daughter of Sathi Alur, a member of the World Cerebral Palsy Institute who held an informal Q & A session after the screening.

Enjoy more photos from the event on UCP’s Facebook page and make your plans now to join us next spring in Las Vegas for the 2016 Annual Conference (dates to be determined).

UCP Thanks Our Sponsors!

Merz Pharmaceuticals

MetLife Center for Special Needs Planning

Careerbuilder

Therap

Uber

Infinitec, a Program of UCP Seguin of Greater Chicago

Ability Magazine and Abilityjobs.com

Blackbaud

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.

Twin Brothers Step Up for UCP’s Steptember Challenge

United Cerebral Palsy (UCP) kicks off its annual Steptember Challenge registration period today with the announcement that Martin and Adrian Konstantinov will be our official Steptember Ambassadors in 2015. Following in the footsteps of past ambassadors such as Team Hoyt, the 15-year-old twin brothers are committed to raising awareness and funds to help people with disabilities and their families through United Cerebral Palsy.

Steptember is a four-week event designed to generate support for people with cerebral palsy and other disabilities. Beginning on September 2, teams from around the world will challenge themselves to take 10,000 steps a day and fundraise along the way until September 29, 2015. Nearly any activity, including biking, physical therapy and yoga, can be converted into steps on the Steptember website.

In 2012, the Konstantinov brothers co-founded the successful Lake Scary 5K in their hometown of Lake Mary, FL to benefit one of UCP’s local affiliate organizations on behalf of a friend with cerebral palsy. Now that their family has relocated to Washington, D.C., the brothers plan to put their energy and enthusiasm into helping UCP’s national efforts to rally teams participating in this year’s Steptember event. Last year, over 10,000 people participated in the challenge and raised more than $3 million globally through more than 170 organizations involved in the effort.

Being Honored in 2013

“We want to continue to spread awareness about cerebral palsy and contribute to this cause that we already feel closely attached to,” said the Konstantinovs.

The twins will be working with their Director of School Activities at the Maret School in DC to engage fellow students in the Steptember Challenge and will be on hand to help UCP promote the event. Not only do the funds raised during September directly benefit people with disabilities served by 80 UCP affiliates in the US and beyond, the steps taken directly benefit the participants as well in leading a more active lifestyle.

“We are beyond impressed with the efforts of these young men’” said Stephen Bennett, President and CEO of UCP. “They are an excellent example of the idea that a world of good can come from the intention to make the world a better place for just one person. Through their desire to help their schoolmate, they are benefiting thousands on people with disabilities.”

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For more about Steptember, please visit www.steptember.us.

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.

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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.

 

Making Technology Accessible for Everyone

The following post from Microsoft Chicago’s director and community advocate Shelley Stern Grach first appeared on www.microsoft-chicago.com on April 23. United Cerebral Palsy’s Life Labs initiative is hosting it’s first Innovation Lab at Microsoft‘s Technology Center in Chicago May 19-20. Find out more about the event and how you can be a part of this intense two-day design challenge at www.ucpinnovationlab.org

 

How many of you are aware that 2015 marks the 25th anniversary of the American Disabilities Act?

I wasn’t until a few months ago, when I received  a call from United Cerebral Palsy. They were interested in hosting a hackathon for 100 people in May, and were looking for space to hold the hackathon. Fortunately, the Microsoft Technology & Innovation Center is ADA-compliant, and we are now thrilled to be hosting this wonderful program on May 19-20, when developers will be creating apps to help people with disabilities. At about the same time, I received a call from Chicago Public Schools to see if we could host a job shadow day for CPS students with disabilities. Those two calls sparked my interest, and  I also started to pay more attention to ADA 25 and to how meaningful technology can be to those who have a disability. To recognize and celebrate the important strides for people with disabilities, 2015 will be celebrating ADA 25 all year long and Chicago will be celebrating ADA 25 Chicago. This blog is the first in a series recognizing ADA 25 and its impact.

Our mission and social responsibility at Microsoft is to enable people throughout the world to realize their full potential with technology. To that end, we invested in creating an environment that capitalizes on the diversity of our people, and the inclusion of ideas and solutions, that meets the needs of our increasingly global and diverse customer base.

And that means developing technology that is accessible to anyone – regardless of age or ability. Technology has the potential to become our sixth sense.

People with disabilities are among the most marginalized groups in the world. People with disabilities have poorer health outcomes, lower education achievements, less economic participation and higher rates of poverty than people without disabilities.

Microsoft has a long history and commitment to accessibility. For more than 25 years, Microsoft has focused on creating technologies that make devices easier to use for individuals with a wide array of difficulties and impairments. Microsoft has listened, gained insights, and applied what it’s learned. The result is an increasing momentum toward the goal of making devices accessible and useful to all people. Today we empower hundreds of millions of people of all abilities around the world to use technology to enter the workforce, stay connected with friends and family, get things done and take full advantage of a digital lifestyle. We’ll spend more time in May looking at how apps can positively impact the lives of people with disabilities.

Today, I want to share with you how impressed I am with the teachers and students at CPS who visited us last week.

Making Technology Accessible for EveryoneLet’s start with CPS teachers like James Taylor. First, you just have to love his name! But more importantly, James spends his time focusing on all the students with disabilities at CPS, and one small part of his day is putting together field trips for the students to businesses, so the students can experience the corporate world. Originally, James thought we would have 2 or 3 students sign up. We had 27! Everyone arrived early and we began our day with a wonderful presentation by Paul Edlund, Chief Technology Officer – Microsoft Midwest, about the future of technology. It was a highly interactive session, with lots of questions and student engagement.

We then had a full tour of the Microsoft Technology & Innovation Center, led by Beth Malloy, Director, Microsoft Technology Center – Chicago and Bradley Trovillion, Technical Solutions Architect. The students examined our Internet of Things Fishtank, played Xbox and used the Kinect to understand motion capture of movement and worked real time on our PPI.

Making Technology Accessible for Everyone

After lunch, we had a terrific presentation via Skype by Patrick Maher, Director of Civic Engagement, SPR Consulting. SPR is a Microsoft Partner and Pat suffered a spinal cord injury during college. In addition to his very motivational personal story, Pat emphasized the great opportunities for careers in technology for people with disabilities. Pat runs a meet up group called ITKAN, which supports people with disabilities in the Technology field.

Making Technology Accessible for Everyone

He also showed an amazing video which I highly recommend:

The entire staff of the Microsoft Technology and Innovation Center were honored to support these wonderful teachers and students at CPS. It’s most rewarding when we received the following thank you note from James, which told us that our message hit home and that we have helped to fill the pipeline of students who are interested in careers in technology:

“Pat and Shelley I want to say thank for participating and hosting the students.  Overall the students enjoyed the experience and I’m hoping to get a few involved with ITKAN in the next few months.  A majority of the students are gearing up to graduate and after this job shadow day, some are being swayed over to the computer field.  Pat I want to say thank again for sharing your experience with us, and giving motivation to the students.  And again, thank you and the rest of the team for being great hosts.  Hopefully we can do this again later this year or next year and open some doors for upcoming graduates.  I will share these videos and get some feedback, hopefully this will generate some questions for opportunities and get the students more involved with the IT world.” 

To learn more about Microsoft’s investment in accessibility, see how our products have built-in accessibility features.