UCP Responds to Shooting at Inland Regional Center

In the wake of the most recent mass shooting in San Bernadino, California, United Cerebral Palsy offers our condolences to the victims, the staff at Inland Regional Center and the entire community that has been impacted by this senseless violence.

Any event like this is shocking, but this particular incident hit close to home as it involved Inland Regional Center. The center serves more than 30,000 people with developmental disabilities in two counties. Hundreds of employees there provide funding, case management and referrals to agencies such as United Cerebral Palsy of the Inland Empire and other sister organizations in the area.

Much remains to be learned about the identities of the 14 people who were killed and the others who were injured. Staff and clients of UCP of the Inland Empire were not involved. However, they have frequent contact with the Center and relationships with the people who were in the building yesterday working to help people with disabilities and their families.

“We are shaken by the thought that some of the most vulnerable members of our community, people with profound developmental disabilities, might have been harmed along with dedicated professionals who work so hard on their behalf,” said Shelly DeButts, spokesperson for UCP’s national office. “Places like the Inland Regional Center are supposed to be safe havens for individuals and families who already have many challenges to face in their daily lives. It is supposed to be a place where they can seek and receive much-needed help.”

“We are all people in this struggle together to support people with developmental disabilities,” said Greg Wetmore, President and CEO of UCPIE. “We are resilient because we are together and we are stronger and more powerful than any evil that produced this act of terror.”

We extend our sympathy to the victims and their families, but also to the tight-knit community of disability service providers and their clients who are now traumatized. You can find out more about the amazing work UCP of the Inland Empire does at http://www.ucpie.org/.

UCP Gets A “Sneak Peek” Of The Series “Born This Way!”

20151201_190400

John Tucker, one of the stars of “Born This Way”, speaking at Rayburn House Office Building in Washington, DC.

UCP had the opportunity to check out a sneak peek of the new reality series premiering on A&E Network this month. “Born This Way” follows the live of seven adults living with Down syndrome living in Los Angeles, California.

You watch as they navigate life and all it’s complexities, such as the relationships with their parents, finding love, gaining their independence, planning their futures and following their dreams.

The show tackles issues surrounding language, culture, and stigma in regards to the way we look at individuals with intellectual and developmental disabilities, in a way that really hasn’t been on television before. The show is an honest take on how they live their lives and it’s refreshing to see people with disabilities discussing their lives as they know them to be.

We had the pleasure of meeting one of the stars of the show, John Tucker, a 28-year old man who’s energy is contagious and his passion is music. He’s an aspiring rapper. 

“There is a freshness and honesty in the way these young adults lead their lives; something we could all learn from them.” said Executive Producer Jonathan Murray. 

 

“Born This Way” premieres December 8, at 10:00 PM EDT/ 9:00 PM Central on A&E  

“Halloween Without Limits” Proves To Be A Real Treat!

During the month of October we asked to see the most creative and fun costumes for children with disabilities, and did you deliver! More than 60 photos featuring costume creations from all over were posted to our Facebook page. Nearly 10 MILLION of you saw photos from the contest on Facebook! With nearly 400,000 votes cast, the winner of Halloween Without Limits “let go” of the completion with over 120,000 votes! Congratulations to our winner, “Olaf and his Snow Cloud” from the movie “Frozen!”

Sandy Hundsrucker Olaf

 

The UCP Staff pick for the “Most Creative Costume” goes to the “Penalty Box!” We collectively thought this costume was so unique and had so many cool touches.

Kimberly Domonkos_HalloweenWithoutLimits

 

We had so many amazing entries that we had to show them off! Some of our honorable mentions go to…

The “Despicable Me” crew:

Wayne Cordova

This adorable “Care Bear”:

Kelly Cunningham_HalloweenWithoutLimits

This awsomely-constructed “Alice and Wonderland”:

Katherine Talbott Alice in Wonderland

Take a look in our photo album for all of the amazing entries!

UCP Launches Innovative Fundraising Initiative

FOR IMMEDIATE RELEASE

CONTACT:

Shelly DeButts: 202-973-7175, sdebutts@ucp.org

Mobile App, Creative Platform Lets Supporters Donate While They Shop

 

 Washington, D.C. (November 2, 2015) – United Cerebral Palsy (UCP) announced today the launch of a new fundraising partnership with the CauseNetwork™, rolling out a free, branded online Marketplace and customized Mobile App for UCP affiliates in the U.S.   This partnership capitalizes on consumers’ shift toward “shopping for a cause”. When coupled with the widespread use of mobile devices for online purchases, expected to reach $100 million in 2015, fundraising of this magnitude can help expand the mission of UCP to aid people with a broad range of disabilities and their families.

“In this day and age, an organization like UCP has to be very creative with fundraising,” said Michele Levy, UCP’s Director of Individual Giving. “We know many people support our cause, but we have to give them easy, convenient and smart ways to show that support.”

CauseNetwork will create a customized shopping website for every interested UCP affiliate to enable supporters to make online purchases from over 1,000 retailers, up to 10% of which is donated to UCP. The same ability to shop for their cause is enabled through the UCP customized Mobile App, which also includes messaging for affiliates to stay in touch with their donor-members. The entire platform is provided at no cost to the affiliates.

“We work to give UCP a way to do more for their affiliates, without having to ask donors to spend more. Through our platform, members simply redirect their online shopping through their UCP affiliate’s free, branded website and Mobile App. Now donors can contribute to the UCP mission while getting the same great prices from some of the biggest retail brands: Amazon, Target, WalMart, Best Buy and over 1,000 more,” said Clay Buckley, President of CauseNetwork, Inc.

###

About United Cerebral Palsy

United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with a network of affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence. For more information, please visit http://ucp.org.

 

About the CauseNetwork, Inc.

CauseNetwork™ is a marketplace for giving. A revolutionary and unique fundraising platform built for the non-profit community that generates tax-free donations to a cause through every purchase from partner retailers. Supporters of the cause simply shop online and a portion of each purchase (at no additional expense to them) is automatically provided to their individual cause. For more information, please visit www.causenetwork.com or contact Mary O’Donnell, Mary@causenetwork.com.

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!  

UPDATE: Supreme Court Decides Home Care Rule Can Move Ahead

Over the past months we’ve been updating you on status of implementation of the Home Care Rule.  The most recent activity was in August when the appeals court determined that the Department of Labor could move forward with the long-delayed rule that would extend minimum wage and overtime protections to homecare workers.

Earlier this week the Supreme Court announced that it will not block the implementation of the Department of Labor’s rule.  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.

Several home care providers had sued to block the rule, which provides protections to workers who provide in-home care for the elderly, people with disabilities and others, arguing that it would negatively impact millions of older Americans and people with disabilities.

Many United Cerebral Palsy affiliates provide such vital services for people with disabilities. When the rule was issued, UCP made a statement warning of serious potential consequences people with disabilities and their families faced and urged Medicaid agencies to set reimbursement rates that would enable caregivers to continue to provide the critical support people with disabilities need to live at home.

“We want to see those caregivers fairly compensated for their work, but we don’t want that to come at the cost of someone else’s independence. We have come so far in helping individuals remain in their homes,” said Stephen Bennett, President and CEO of UCP.

A few things to note.The Department of Labor has announced a delay in the enforcement of the new rules, which was supposed to begin in January of 2015. While they Supreme Court has ruled they may still choose to take up the case sometime in the future; this most recent decision declines stopping the Labor Department from implementing the rule in the meantime.  We are working with other organizations to determine options and alternatives for how to proceed.  We know how important this is to you and will continue to provide updates as information becomes available.

 

The Pope, A New Speaker and a Budget: What’s Going on in Washington Right Now

It has been an exciting few weeks here in Washington, D.C.  It started with the city in celebration mode to host the pope and ended with the Speaker of the House resigning and the House and Senate passing a short-term continuing resolution (CR) that avoided a government shutdown.iStock_000012685951XSmall

While the CR is only short-term it was necessary as Congress has yet to pass any of the 12 annual appropriations bills and send them to the president’s desk.  As is the CR will continue to fund the government at fiscal year 2015 levels through December 11, 2015.

The current CR means that funding for programs and agencies important to the disability community, including the National Institutes of Health, Centers for Medicare and Medicaid and Centers for Disease Control and Prevention remain intact.

However, the looming December deadline still presents many reasons for us to remain watchful.  In addition to carving out a larger and longer-term budget agreement that must address across the board cuts and extend past the 2016 elections, Congress must also address hitting the federal debt ceiling.   

As for the new speaker of the house, it is likely to be Majority Leader Kevin McCarthy (R-CA).  However, many members are running for the other key positions in the leadership.  What is clear is that no matter who is nominated, they will surely have a full plate to deal with.

Here at UCP, we will continue to monitor the discussions and update you as the process proceeds.

 

UCP’s “Halloween Without Limits” launches October 1!

United Cerebral Palsy is inviting Halloween revelers of all ages to enter our #Halloween Without Limits digital photo contest this October. No one should have to miss the fun of dressing up for Halloween because they have a disability which may not be accommodated by traditional costumes. Taking into account assistive technology such as wheelchairs and walkers or the sensory needs of children with Autism and Down syndrome can sometimes be a frustrating task. So, UCP is encouraging creativity by rewarding costumes designed to work specifically for the unique challenges faced by people with disabilities.

Stephen the PIrate

 

Beginning on October 1, we invite parents and individuals with disabilities to share their most creative, kooky and fun costumes to our Facebook page by tagging @UCPNational and using the hashtag #HalloweenWithoutLimits. It doesn’t matter if you’re a princess or a hero, a ghost or a ghoul, as long as you have gone the extra mile to accommodate a disability.

Winners will be chosen based on the number of combined “likes”, shares and comments. There will also be a “Most Creative Costume” chosen. Photos of children under the age of 18 must be submitted by a parent or guardian.

 

#HalloweenWithoutLimits How To: 

1. “Like” UCP on Facebook.

2. Upload your photo(s) to our Facebook wall, using the hashtag #HalloweenWithoutLimits (entries without the hashtag won’t be counted!)

3. Vote for your favorite photo(s) by “liking”, commenting or sharing throughout the month of October! Be sure to share to get votes from family and friends!

4. Wait for the winners to be announced on October 31 to see if you will get bragging rights for next year!

We can’t wait to see your costume creations!

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.”

# # #

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.

 

Innovators with Disabilities to Pitch to Major Corporations

UCP’s Life Labs Holds Innovation Lab at USBLN National Conference

 

Washington, D.C. (September, 21, 2015) – United Cerebral Palsy has partnered with USBLN, a national nonprofit that helps businesses drive performance by leveraging disability inclusion, to host an Innovation Lab during USBLN’s 18th Annual National Conference & Biz2Biz Expo in Austin, TX at the end of September.

Innovation Lab, part of UCP’s Life Labs initiative. brings together innovators from all walks of life to compete on teams to dream up the next big idea for people with disabilities. Using human-centered principles of Universal Design, the teams work with mentors and facilitators to tackle problems ranging from mobility to communication in an effort to help improve the every day lives of people with disabilities.

At the conference, Innovation Lab teams will consist of participants of the Career Link Mentoring Program. The program is a collaboration of USBLN and Cornell University’s Employment and Disability Institute, which provides a 6-month career mentoring opportunity to college students and recent graduates with disabilities through linkages to business professionals from USBLN member companies.

“Rather than continuing to retrofit our world to accommodate people with disabilities, there’s no reason why we can’t encourage future designs to work for people of all abilities,” said Gabriel Forsythe Y Korzeniewicz, Life Labs Program Manager. “Past Innovation Lab events have included people with and without disabilities – from students to engineers, to physical therapists and people from a variety of backgrounds. We’re excited that this will be our first Lab in which all of the competitors have disabilities. We’re interested to see what kinds of unique ideas will come from this group.”

From September 27-29 the Innovation Lab teams will compete for one of two opportunities to pitch their ideas “Shark Tank”-style to major corporate players such as IBM, Sprint, Verizon, 3M and Mitsubishi – all part of USBLN’s membership of 5000 of the top companies in America. On September 30, each team’s idea will on display at the Bizt2iz Expo so conference attendees can vote on which two ideas to elevate to the level of a pitch to potential investors.