UCP Releases 2016 Case for Inclusion Report

 

 

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FOR IMMEDIATE RELEASE

For Inquiries: Kaitlyn Meuser, kmeuser@ucp.org, 202-973-7185

UNITED CEREBRAL PALSY RELEASES STATE RANKINGS ON SERVICES FOR AMERICANS WITH DISABILITIES

Arizona, Vermont, New Hampshire, Michigan & Hawaii Top 2016 List

Washington, D.C. (September 20, 2016) – United Cerebral Palsy (UCP) released the 2016 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 as well as support for the transition 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 this research is to promote inclusion and enhance the quality of life for all Americans,” said Richard Forkosh, Interim President/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 underscore the national context for this data so that stakeholders can use this information to drive progress.”

“For more than a decade, UCP has ranked states to showcase the good and to highlight what needs improvement. The fact is real progress is being made. More Americans with ID/DD are living in the community rather than being isolated in large state institutions. But much more work needs to be done to reduce waiting lists, increase employment and expand support to families. This annual ranking clearly shows the true picture of what’s happening and what should be happening in the states for our friends and neighbors with ID/DD,” stated Tarren Bragdon, the report’s author since 2006.

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

Significant Takeaways from the 2016 Rankings

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.

2. 32 states, same as last year, 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. Connecticut is very close (with 79% spent on HCBS).

3. As of 2014, 15 states report having no state institutions to seclude those with ID/DD, including: Alabama, Alaska, Colorado, Hawaii, Indiana, Maine, Michigan, Minnesota, New Hampshire, New Mexico, Oregon, Rhode Island, Vermont, West Virginia and Washington, D.C. Another 9 States have only one institution each (Arizona, Delaware, Idaho, Montana, Nevada, North Dakota, South Dakota, Utah and Wyoming). Since 1960, 205 of 354 state institutions have been closed, according to the University of Minnesota’s Research and Training Center on Community Living.

4. 27 states, up from 26, 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 80 percent. Just eleven (up from 8) States meet a top-performing 90 percent Home-like Setting standard: Alaska, Arizona, California, Colorado, D.C., Michigan, Nevada, New Hampshire, Vermont, Washington, and Wisconsin.

5. Fifteen states, up from ten last year, report at least 10 percent of individuals using self-directed services, according to the National Core Indicators survey in 36 states. Five states report at least 20 percent being self-directed. These states include: Florida, Illinois, New Hampshire, Utah and Vermont.

Tracking Health, Safety and Quality of Life

6. 47 states, up from 42 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 36 states, up from 29 last year, reported data outcomes in 2015.

Keeping Families Together

7. Only 15 states, up from 14 last year, 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, Pennsylvania, South Carolina, South Dakota, Vermont, Wisconsin, and Wyoming.

Promoting Productivity

8. 10 states, up from 8 last year, report having at least 33 percent of individuals with ID/DD working in competitive employment. These states include: Connecticut, Maryland, New Hampshire, New Mexico, Oklahoma, Oregon, Rhode Island, Vermont, Washington, and West Virginia.

9. 15 states report successfully placing at least 60 percent of individuals in vocational rehabilitation in jobs, with nineteen states reporting the average number of hours worked for those individuals placed being at least 25 hours and four states reporting at least half of those served getting a job within one year. No states met the standard on all three success measures.

Serving Those in Need

10. Waiting lists for residential and community services are high and show the unmet need. Almost 350,000 people, 28,000 more than last year, are on a waiting list for Home and Community-Based Services. This requires a daunting 46 percent increase in States’ HCBS programs. 18 states, an increase from 16 last year, report no waiting list or a small waiting list (requiring less than 10 percent program growth).

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 nearly 70 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—one person at a time, one family at a time. 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, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit www.ucp.org.

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UCP to Host Mandela Washington Fellow

 

 

 

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Contact:                                                                                  FOR IMMEDIATE RELEASE

Ellie Collinson                                                                                     August 8, 2016
ecollinson@ucp.org
202-973-7109

 

UCP welcomes Tobiloba Ajayi as a part of the Mandela Washington Fellowship for Young African Leaders Initiative.

Washington, DC (August 8, 2016) – United Cerebral Palsy is pleased to announce that they have been chosen as a host for the 2016 Mandela Washington Fellowship for Young African Leaders Initiative. Tobiloba Ajayi, a Nigerian attorney and cerebral palsy advocate, will be joining the UCP staff for six weeks in order to polish her leadership skills and foster professional growth as part of her Professional Development Experience.

 

The Mandela Washington Fellowship, a key piece of President Obama’s Young African Leaders Initiative (YALI), equips young African leaders with the opportunity to engage in leadership training, professional opportunities, networking, and community support. Fellows are selected based on their extensive record of accomplishment in promoting and innovating positive change throughout their community in one of the 49 countries in Sub-Saharan Africa. After the Fellows attend a six-week Academic and Leadership Institute and meet with President Obama in Washington, DC, they will join private businesses, NGOs, and government agencies across the United States for an additional six week practicum. Here, the 100 Fellows in the program are granted a unique opportunity to develop a mentorship that will continue to assist them even as they resume their leadership development back home.

 

At United Cerebral Palsy, Ajayi will be working closely with UCP’s Program Department on the creation of international resource and emergency preparedness guides for people with disabilities.

 

To learn more about UCP and the Mandela Washington Fellowship program, visit www.ucp.org or yali.state.gov.

 

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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 broad range of disabilities. Together with over 70 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. 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, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit www.ucp.org.

 

About Mandela Washington Fellowship

The Mandela Washington Fellowship for Young African Leaders is a U.S. government program that is supported in its implementation by the International Research & Exchanges Board (IREX). For more information about the Mandela Washington Fellowship, visit yali.state.gov and join the conversation with #YALI2016.

UCP Responds to Attack at the Tsukui Yamayuri-En facility in Japan

We are deeply saddened by the events that took place at the Tsukui Yamayuri-En facility in Sagamihara, Japan early Tuesday morning. Our hearts and thoughts are with the families and loved ones of the 19 victims as well as the 26 survivors who were injured in the attack. Violence of this magnitude is shocking, particularly when it appears that the attacker was targeting people with disabilities. We at UCP, and throughout our affiliate network, believe strongly in our mission, and that life for people with disabilities and their families should be one that is free of violence.

UCP Launches “Speak for Yourself,” a PCORI-Funded Project to Establish a Patient-Centered Research Network for Individuals with Disabilities

FOR IMMEDIATE RELEASE                                  Contact: Randi Moore, (202) 494-4638

Washington, D.C. (May 3, 2016) – United Cerebral Palsy (UCP) has launched Speak for Yourself, a two-year project funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award to address the various barriers to access that discourage or prevent individuals with disabilities from participating in medical research.

Speak for Yourself is a movement that will build a network of individuals with disabilities who are trained and empowered to become directly involved in medical research that improves their health outcomes.

“People with disabilities have long expressed the desire not only for more opportunities to participate in research, but for a voice in the decision-making around the ‘what’, ‘how’, and ‘why’ of disability-focused research. Speak for Yourself aims to empower people with disabilities to work alongside researchers to ensure that the future of research meets the needs of real people,” said Stephen Bennett, UCP’s President and CEO.

Speak for Yourself will include various opportunities for online engagement and access to resources on research participation. Each year of the project will culminate in a one-day convening bringing together advocates and researchers to collaborate on how to build a more dynamic relationship.

“To promote health equity among people with disabilities, we need to pursue research that is meaningful to those most affected. To do so, people with disabilities must have a say in the research process. Speak for Yourself is a part of the solution to transform science and promote patient-centered outcomes,” said Katherine McDonald, PhD, Associate Professor of Public Health at Syracuse University.

UCP believes that relevant and well-informed patient-centered clinical research is essential to advancing healthcare access, quality, and choice for individuals with disabilities. A patient-centered approach to research that encourages individuals with disabilities to provide input on the gaps in evidence, best practices, and direction of disability-focused research is central to creating a life without limits

More information about Speak for Yourself can be found at http://mylifewithoutlimits.org/speak-for-yourself/

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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://www.ucp.org.


About The Patient-Centered Outcomes Research Institute

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.

 

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 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.

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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://www.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 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.

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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.”

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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.

 

Engage: A Diverse Event Series – Adaptive Rowing

Join United Cerebral Palsy and the National Veterans Center — powered by Student Veterans of America on Saturday, October 24 for an exciting day, filled with networking and the opportunity to learn about adaptive rowing and ways to become involved– as well as a fun, yet competitive rowing tournament! This event is a part of our 2015 “Engage” series and is open to youth and young adults with disabilities and young veterans. It is fully accessible and located near the Foggy Bottom and Farragut West Metro stops (blue, orange and silver lines). The event is FREE to attend! For more information, please visit