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!  

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.

UCP Receives Motorola Solutions Foundation Innovation Generation Grant

United Cerebral Palsy has received a grant for $20,000 as part of the “Innovation Generation Grant” program from the Motorola Solutions Foundation, the charitable arm of Motorola Solutions, Inc. Through the grant, UCP’s Life Labs initiative will distribute universal design curriculum modules through iTunes U and offer an immersive two-day design challenge, called an Innovation Lab, to engage students across disciplines in human centered design concepts.

Life Labs Logo

The Innovation Generation program awards organizations such as UCP that foster and support science, technology, engineering and math (STEM) initiatives for teachers and U.S. preschool through university students – especially girls and underrepresented minorities, such as people with disabilities.

“It’s amazing to watch people who participate in an Innovation Lab leave with a greater understanding of the challenges that people with disabilities face and a new confidence that they can participate in solving some of those challenges,” said Josef Scarantino, Acting Director of UCP’s Life Labs. “This program has the power to change career trajectories and open up a new worlds of creativity and innovation.”

Innovation Lab HeaderAfter several successful Innovation Lab events in 2014 and 2015, UCP’s Life Labs shaped the Innovation Lab into a curriculum, which can easily be adapted to any school degree program. Utilizing Apple’s iTunes U education content platform, UCP’s Life Labs plans to build a large national presence of students and open the curriculum to outside academic and industry collaboration. The curriculum and Innovation Lab events will be made available to UCP’s network of eighty affiliates through a toolkit that combines all the necessary resources.

The Motorola Solutions Foundation grant program overall will impact about 900,000 students and teachers, each receiving an average of 100 programming hours from our partner non-profit organizations and institutions. Programs will support special populations including girls and women, underrepresented minorities, the lesbian, gay, bisexual and transgender community, people with disabilities and the military.

“The Motorola Solutions Foundation created the Innovation Generation Grant program eight years ago to support educational experiences that spark students to turn their dreams into the innovations that will shape our society’s future,” said Matt Blakely, director of the Motorola Solutions Foundation. “Organizations like UCP are teaching tomorrow’s leaders that careers in engineering and technology are not only fun, but also within their reach.”

For additional information on the Motorola Solutions Foundation grants programs, visit: and for more information on UCP please visit


About Motorola Solutions Foundation

The Motorola Solutions Foundation is the charitable and philanthropic arm of Motorola Solutions. With employees located around the globe, Motorola Solutions seeks to benefit the communities where it operates. The company achieves this by making strategic grants, forging strong community partnerships and fostering innovation. The Motorola Solutions Foundation focuses its funding on public safety, disaster relief, employee programs and education, especially science, technology, engineering and math programming. For more information on Motorola Solutions Corporate and Foundation giving, visit our website:



The Shriver Snapshot Highlights Attitudes Towards Developmental and Intellectual Disabilities

While America gets ready to host the Special Olympics World Games and celebrates the 25th anniversary of the Americans with Disabilities Act, The Shriver Report Snapshot: Insight into Intellectual Disabilities in the 21st Century shows a nation that is constantly changing. The poll was conducted by Harris Polling in partnership with Shriver Media and Special Olympics International.

The findings reveal that the more than half of Americans who have personal contact with someone with intellectual disabilities (I/DD) are and have far more accepting and positive attitudes. On the other hand, findings also show that the lack of contact leaves a legacy of misinformation, false stereotypes, ignorance and fear towards those with intellectual disabilities in the remaining half of Americans. So, experience and exposure are found to be the most important factor when it comes to one’s attitude towards people with I/DD.

Dropping the report in the midst of the Special Olympics, which welcomes more than 6,500 athletes representing 165 countries, is a great way to not only advocate how personal contact effects ones attitudes but also to give more people a chance to experience interacting with people with I/DD.

The Shriver report reveals that experience, inclusion and intervention are the best ways to abolish isolation, intolerance and injustice. Yet, 3 to 9 million people with I/D remain isolated from the rest of society. A whopping 42% of Americans have no personal contact with someone with an intellectual disability, and therefore cling to old judgements and stereotypes.

It is great to know that a vast majority of Americans believe that people with intellectual disabilities should be encouraged to be employed (93%), yet one in five respondents said that they would feel uncomfortable hiring someone with an intellectual disability. Because of this, only a shocking 5% of Americans know what it is like to work alongside someone with I/DD.

This study shows that millennial women ages 18-34 have the most progressive attitudes towards, and expectations for people with I/DD. They are in general the most progressive, inclusive, and compassionate group of all groups surveyed. Approximately 62% of these women would feel comfortable having their child date/marry someone with I/DD.

Although 89% of Americans reported feeling comfortable with their child being in a class with a child with I/DD, 4 in 10 Americans don’t believe children with I/DD should be educated in the same classroom as their peers without disabilities. While most of these statistics show a majority of people being accepting of people with I/DD, there is still a large percent of people who showed discomfort when it came to interacting with someone with an I/DD.

The findings highlighted in The Shriver Report Snapshot are both eye-opening and motivating. It is clear that there is still a lot of confusion about intellectual disabilities throughout America and how they should be dealt with. This report will give our country a better understanding of how we are currently dealing with I/DD and what areas we need to work on.

UCP Releases Case for Inclusion Rankings and Report

Arizona, Maryland, Missouri, New York & Hawaii Top 2015 List


Washington, D.C. (July 16, 2014) – United Cerebral Palsy (UCP) released the 2015 Case for Inclusion today, an annual report and interactive website used to track state-by-state community living standards for Americans living with intellectual and developmental disabilities (ID/DD).

The Case for Inclusion examines data and outcomes for all 50 states and the District of Columbia (DC), ranking each on a set of key indicators, including how people with disabilities live and participate in their communities, if they are satisfied with their lives, and how easily the services and supports they need are accessed. By taking these factors into account, UCP is able to publish this comprehensive analysis of each state’s progress or failures in providing critical services to individuals living with disabilities.

In addition to rankings, the report digs deeper into two critical issues facing people with disabilities and their families: waiting lists for services and support and transitioning from high school into an adult life in the community. Two case studies examine how states are approaching those issues.

Since 2006, the rankings have enabled families, advocates, the media and policymakers to measure each state’s progress or lack of improvement and gain insight into how the highest-ranking states are achieving their success. To enhance the usability of the report, UCP publishes tables of the data from which the report was compiled on an interactive website where visitors can compare and contrast results among selected states.

“Ultimately, the goal of all of this is to promote inclusion and enhance the quality of life for all Americans,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “UCP is committed to shining a light on how well states are actually serving people with disabilities and, by extension, their families and communities. Also, we want to provide the proper national context for this data so that we can truly use it to drive progress.”

To download and read the entire Case for Inclusion report or explore the data tables, visit


Significant Takeaways from the 2015 Ranking

Promoting Independence

  1. All States still have room for improvement, but some States have consistently remained at the bottom since 2007, including Arkansas (#49), Illinois (#47), Mississippi (#51) and Texas (#50) primarily due to the small portion of people and resources dedicated to those in small or home-like settings in these four states. Mississippi and Texas also do not participate in NCI.
  1. 32 States, down from 38, meet the 80/80 Home and Community Standard, which means that at least 80 percent of all individuals with ID/DD are served in the community and 80 percent of all resources spent on those with ID/DD are for home (less than 7 residents per setting) and community support. Those that do not meet the 80/80 standard are Arkansas, Delaware, Florida, Illinois, Indiana, Iowa, Kentucky, Louisiana, Mississippi, New Jersey, North Carolina, North Dakota, Ohio, Oklahoma, South Carolina, South Dakota, Texas, Utah and Virginia.
  1. As of 2013, 14 States report having no state institutions to seclude those with ID/DD, including Alabama, Alaska, Hawaii, Indiana, Maine, Michigan, Minnesota, New Hampshire, New Mexico, Oregon, Rhode Island, Vermont, West Virginia and Washington, D.C. Another 10 States have only one institution each (Arizona, Delaware, Idaho, Montana, Nebraska, Nevada, North Dakota, South Dakota, Utah and Wyoming). Since 1960, 220 of 354 state institutions have been closed (5 more in the past year alone), according to the University of Minnesota’s Research and Training Center on Community Living. Another 13 more are projected to close by 2016 in California, Massachusetts, New Jersey (3), New York (2), Oklahoma (2), Tennessee (2) and Virginia (2)
  1. 26 States, up from 18, now report meeting the 80 percent Home-Like Setting Standard, which means that at least 80 percent of all individuals with ID/DD are served in settings such as their own home, a family home, family foster care or small group settings like shared apartments with fewer than four residents. The U.S. average for this standard is 79 percent. Just eight States meet a top-performing 90 percent Home-like Setting Standard: Arizona, California, Colorado, D.C., Hawaii, Nevada, New Hampshire, and Vermont.
  1. Ten States, up from seven last year, report at least 10 percent of individuals using self-directed services, according to the National Core Indicators survey in 29 States. These States include Arkansas, Connecticut, Florida, Hawaii, Illinois, Indiana, Kansas, Kentucky, Utah and Virginia.

Tracking Health, Safety and Quality of Life

  1. 42 States, up from 39 last year, participate in the National Core Indicators (NCI) survey, a comprehensive quality-assurance program that includes standard measurements to assess outcomes of services. A total of 29 States, a 50% increase from last year, reported data outcomes in 2014.

Keeping Families Together

  1. Only 14 States report that they are supporting a large share of families through family support (at least 200 families per 100,000 of population). These support services provide assistance to families that are caring for children with disabilities at home, which helps keep families together, and people with disabilities living in a community setting. These family-focused state programs were in Arizona, California, Delaware, Louisiana, Minnesota, Montana, New Hampshire, New Mexico, New York, South Carolina, South Dakota, Vermont, Wisconsin, and Wyoming. Alabama and Pennsylvania reported that they were providing higher levels of family support in last year’s ranking.

Promoting Productivity

  1. Just 8 States, down from 10 last year, report having at least 33 percent of individuals with ID/DD working in competitive employment. These States include Connecticut, Maryland, New Hampshire (newly added), New Mexico, Oklahoma, Vermont, Washington, and West Virginia (newly added). Louisiana, Nebraska, Oregon and Virginia reported that they met this threshold in last year’s ranking, but reported a decrease in competitive employment this year.
  1. 14 States report successfully placing at least 60 percent of individuals in vocational rehabilitation in jobs, with fifteen States reporting the average number of hours worked for those individuals placed being at least 25 hours and three States reporting at least half of those served getting a job within one year. Only California met the standard on all three success measures this year compared to last year’s ranking, when Nebraska and South Dakota were the only two states to report meeting all three thresholds.

Serving Those in Need

  1. Waiting lists for residential and community services are high and show the unmet need. More than 322,000 people, 5,000 more than last year, are on a waiting list for Home and Community-Based Services. This requires a daunting 44 percent increase in States’ HCBS programs. 16 States, a decrease from 22 last year, report no waiting list or a small waiting list (requiring less than 10 percent program growth).

Cheryl Hines wins BIG for people with disabilities!

UCP’s Celebrity Ambassador, actress Cheryl Hines (Curb Your Enthusiasm, Suburbgatory) appeared on last night’s episode of Celebrity Family Feud competing on behalf of United Cerebral Palsy and people with disabilities. Cheryl has a nephew with cerebral palsy and has been a strong supporter of UCP for many years.

Cheryl Hines and her Family. Photo from The University of Central Florida website.

Cheryl and her team, which consisted of her sister Rebecca, her brothers Chris and Michael and their mom, Rosemary, took the prize from family of television personality Niecy Nash (Reno 911). Team Hines big win raised $25,000 to be donated to UCP!
Congratulations to Cheryl and her family on their BIG WIN and helping support “A Life Without Limits” for people with disabilities and their families!
Though we may not all be as lucky as Cheryl and her family to be on Family Feud, you can still help to provide support and resources to people with disabilities and their families and contribute to our mission to provide “A Life Without Limits!” Find out more about how you can make a difference or donate today!

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.



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.


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.


UCP and CPF (Cerebral Palsy Foundation) 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.

Sonali Bose_UCP

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.

Emily Gillis and her dad, Joseph Gillis Jr. 2

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.