“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!

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.


Successful Steptember Challenge Raises $3.5 Million

Another September has come and gone and 2,236 people on 721 teams across the U.S. stepped up! Those of you who took the Steptember challenge joined ranks with a global community of people dedicated to taking 10,000 steps a day to help raise money and awareness for people with disabilities and their families.

That’s right – 10,000 steps a day! Every day for 28 days!

We made it!

Globally, we raised more than $3.5 million to help United Cerebral Palsy and its affiliates continue to provide vital services and supports for people like Matthew.

Matthew and his family

Matthew and his family

Three different teams stepped up for Matthew, raising nearly $3,000. Matthew attended United Cerebral Palsy’s Early Intervention Program when he was young and for the past few years he has attended the SPIRIT Saturday Recreation Program. Those programs might not exist without people like you who support UCP.

“We are so grateful to everyone who has donated to United Cerebral Palsy in Matthew’s name and are taking those steps and saving up their pocket change or writing out those checks,” said his mother, Maryann.

On behalf of Maryann, Matthew, the Steptember team and UCP’s affiliates, we thank you!

P.S. There’s still time to get your donations in. We’re not counting steps, but you can still contribute to your favorite team or to UCP’s national office until November 1 at www.steptember.us.


Steptember Logo Medium (5in)

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!

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.

Join UCP in Helping to Spread Awareness for World CP Day on October 7!

Cerebral Palsy (CP) is one of the most complex and often misunderstood neurological disabilities across the world. CP affects each individual differently, with symptoms ranging in severity, from weakness in the limbs to complete lack of motor function. CP can come in many forms: Spastic (the most common), Ataxic, Syskinetic, or even a combination of types. Common signs of CP can include: a “floppy” appearance (specifically in the limbs), a delay in reaching milestones (like crawling or walking), or other delays.WCPD_CP_Diagnosis_Treatment_USA 


Cultural beliefs are different around the world and for some, having a disability carries a cultural and social stigma. This can often lead to isolation of the individual with CP or shame on the mother.The stigma can have many ripple effects for the family of the person with CP or any other disability. One of the goals of World CP Day is to help make the public aware of CP and to help to end the misconceptions that surround it.

CP is a lifelong disability and there is no cure. Treatment for cerebral palsy can come in a range of different methods. If there are no steps taken to treat it, CP may cause the joints to worsen over time. Treatments can include both physical and occupational therapies.

UCP is proud to be apart of World CP Day on October 7 and the movement to help better understand Cerebral Palsy and the 17 million people worldwide who have it.

A Toy Guide for All Children


#Toys for All Twitter Chat Planned for August 26 at 2:00 p.m.

On Wednesday, Toys”R”Us® released of the 2015 Toys”R”Us Toy Guide for Differently-Abled Kids®, an easy-to-use toy selection resource for those who know, love and shop for children with special needs. This annual, complimentary publication is available now in Toys”R”Us and Babies”R”Us® stores nationwide and online, in both English and Spanish, at Toysrus.com/DifferentlyAbled. For more than 20 years, this beloved catalog has been a go-to shopping guide for families in the special needs community, showcasing specially selected toys that aid in the skill development of children who have physical, cognitive or developmental disabilities. This year, Toys”R”Us is partnering with Nick Lachey, father, philanthropist, multi-platinum recording artist and television personality, who appears on the cover of the Guide alongside 5-year old Josephine Gonzalez from New Jersey.

Cover of 2015 Toys R Us Toy Guide with Nick Lachey

While Lachey has worked on numerous exciting projects around the globe throughout his career, he is most proud of being a father of two and an advocate for children’s causes. Inspired by his brother Zac, who lives with Asperger syndrome, Lachey established the Nick Lachey Foundation, a non-profit organization dedicated to helping children, families and communities in need within the United States in 2007.

“Children’s causes are a huge passion of mine, so I was honored to collaborate with Toys”R”Us to lend my support to something as special as the Toys”R”Us Toy Guide for Differently Abled Kids,” said Nick Lachey. “Building on a 20-year reputation of being a beneficial resource for parents and gift givers shopping for special needs children, the Guide is so valuable because it removes the guesswork, providing trusted recommendations of toys that will appeal to a child with physical, cognitive or developmental disabilities.”

On Wednesday, August 26 at 2pm, Toys”R”Us, along with its special needs partners, including the United Cerebral Palsy will host a Twitter Chat to provide followers with tips for selecting toys for children with special needs. The company is encouraging fans and followers to join the conversation and support the power of play by using #ToysForAll.


Young Girl with Toy


Identifying the Best Toys Based on a Child’s Individual Needs
Because all children are unique, regardless of ability, toys in this catalog are not categorized by disability, gender or age, and are everyday playthings that can be enjoyed alongside siblings and friends. Instead, the Guide pairs toys with icons representing a variety of skill sets, such as Auditory, Language, Social, Creativity and more, helping gift-givers choose toys most suitable for the child they are shopping for.

To identify items that best contribute to the development of children with physical, cognitive and developmental disabilities, Toys”R”Us has collaborated with the National Lekotek Center, a nonprofit organization dedicated to making play accessible for children of all abilities, to vet each of the toys featured in the 64-page buying guide.

Gift-givers who prefer to shop from home or on-the-go can take advantage of the shop-by-skill option at Toysrus.com/DifferentlyAbled, where they can select a specific skill set to refine their search. The dedicated website also features a special Toys”R”Us App Guide for Differently-Abled Kids, providing recommendations for mobile apps, using the same skills criteria featured within the traditional Guide. The App Guide is available to make app discovery and mobile technology accessible to kids of all abilities by identifying apps that help build individual skill sets, and are appropriate for children with special needs.

To Download Behind-the-Scenes Footage of the 2015 Guide Cover Shoot, Click here: https://toysrus.sharefile.com/d-s98336cb65b84b978.

Charitable Giving at Toys”R”Us
The philanthropic mission of Toys”R”Us, Inc. and the Toys”R”Us Children’s Fund is to keep children safe and help them in times of need. The Toys”R”Us Children’s Fund contributes millions of dollars annually to various organizations. Each year, several UCP affiliates use grants from the Children’s Fund to expand or improve upon toy/play therapy programs for children with disabilities.The Fund also provides grants to leading special needs organizations, furthering the company’s commitment to children of all abilities. In addition to financial and product donations, Toys”R”Us, Inc. hosts in-store and online fundraising campaigns annually that raise millions of dollars for the company’s signature philanthropic partners.

UCP Honors Sprint Relay in Connecticut


Over the last two years Sprint has developed a partnership with United Cerebral Palsy (UCP), a nonprofit organization that educates, advocates and provides support services for adults and children with disabilities, in order to increase awareness of Sprint Relay’s Enhanced Speech-to-Speech service. As a result of this affiliation, Sprint Relay’s state services have been able to build a close relationship with their local UCP chapters.

Sprint Relay

Michelle Vicino, Account Manager for Sprint Relay Connecticut, has developed one of these outstanding relationships with the UCP Association of Eastern Connecticut (UCPECT). Michelle’s personal story has led her to have a true passion for the services and solutions that Sprint Relay provides. Michelle was born with full hearing, and went through life easily able to utilize the telephone and keep in touch with family and friends. However, a progressive hearing loss became suddenly noticeable when Michelle found herself unable to understand words over the phone at the age of 25. At the time, she had no access to TTY services, CapTel services, or any other technology those with a hearing loss have in order to communicate. Today, she advocates for Sprint Relay services by providing outreach through Relay Connecticut. She touches the lives of parents who are struggling to find solutions for their children, as well as adults who are unsure how to move forward with a newfound hearing loss.

The outreach provided through Relay Connecticut led Michelle to a request from the UCPECT. Michelle was able to secure a sponsorship that included promotion of Sprint Relay services on the UCPECT website, social media channels, events and more.Sprint RelaySprint Relay CT Award








As a result, Michelle received an award in recognition of the outstanding support provided by Relay Connecticut.

“It’s an honor to accept this award on behalf of Sprint Relay,” said Michelle. “I’m proud to be part of the Sprint Relay team, where we have a strong focus on providing solutions to create communication access for people with disabilities.”

Sprint has served as the nation’s largest 711 Telecommunications Relay Service (TRS) provider for more than 25 years, and currently provides relay services in 33 states and exclusively for the federal government, as well as New Zealand. In addition to Sprint Relay services, Sprint offers unique products and services for individuals who are blind or visually impaired, those with cognitive or neurodevelopmental disabilities and seniors. By empowering seniors and people with disabilities through accessible technology, we’re demonstrating how good technology works as a positive force in our society. For more information, visit www.sprint.com/goodworks, for people with Speech Disability: www.sprintsts.com, for general Sprint Relay: www.sprintrelay.com, or for hearing loss/hard of hearing: www.sprintcaptel.com