UCP Expresses Concerns About Graham-Cassidy Legislation



As Members of Congress continue to discuss ways to improve the healthcare system in bipartisan hearings, United Cerebral Palsy expresses concerns about the Graham-Cassidy legislation being considered by some Senate Republicans.


The health care needs of individuals living with cerebral palsy and people with other forms of disability are complex, intensive, and diverse. Providers in the UCP affiliate network bring substantial value to the health care system through their approaches to the care of individuals with disabilities, including by offering important services in partnership with state Medicaid programs. Their innovative service models and practices, research, and use of technology have significantly improved access, community integration, and long-term outcomes for 176,000 clients served nationwide.

Capping and reducing spending for Medicaid, a primary source of funding for disability health services, could compromise needed care such as habilitation and rehabilitation services and also affect the ability of individuals with disabilities to thrive in their communities, including through greater use of long-term services and supports (LTSS). More broadly, such action undermines the innovation in care delivery that ensures that we all live lives without limits. And, this does not sustain the vision that forged United Cerebral Palsy back in 1949 as an organization dedicated to finding better alternatives to institutionalization for children living with cerebral palsy.

In the days ahead, we will be sharing our concerns with Senate offices and hope you will join us in opposing this bill that would impede the ability of our affiliate network to care for people with disabilities. United Cerebral Palsy is a part of major national coalitions focused on the preservation of coverage for individuals with pre-existing conditions, continued coverage for rehabilitative and habilitative services, and protecting Medicaid. In short, we are not alone in our concerns and we will continue to work together to support the needs of individuals with disabilities and the providers who serve them.


Senators need to hear from constituents, and we hope you will tell your story. To learn more about UCP’s public policy work and to get involved, please visit http://ucp.org/what-we-do/public-policy/.

United Cerebral Palsy Statement on Hurricane Harvey

We share the feelings of so many health and human service organizations across the U.S. who are watching the storm and recovery efforts underway in Southeast Texas.

We are thinking of all the families and communities who have been impacted by the storm. We know, from experience, that a storm of this magnitude can produce unimaginable destruction– and may compromise the safety of people living with disabilities.

United Cerebral Palsy affiliates in Oklahoma and Louisiana are actively engaged in the recovery efforts underway and may assist as called upon. We are also monitoring the storm and the possible impact it may have for our affiliates in Louisiana and other neighboring areas. UCP affiliates work diligently on disaster preparedness plans to ensure that the individuals and families in their care, across the U.S. and Canada, are always kept safe in any type of emergency and UCP National supports their efforts.

For information regarding the status of Harvey, please visit HHS’ Public Health Emergency website: https://www.phe.gov/emergency/events/harvey2017/Pages/default.aspx

Residents in the Houston area may also find resources at the Mayor’s Office for People with Disabilities: http://www.houstontx.gov/disabilities/

To ensure that you. your family and your loved ones are prepared in the event of a natural disaster, we recommend our blog post at My Life Without Limits: http://mylifewithoutlimits.org/disaster-preparedness-month-tips-and-tricks-to-help-you-live-a-life-without-limits/

FEMA‘s resources for people with disabilities, access, and functional needs: www.fema.gov/resources-people-disabilities-access-functional-needs

Additional preparedness tips and resources can be found on UCP’s website at: http://ucp.org/resources/health-and-wellness/safety/disaster-preparedness/

 

UCP National Names Armando A. Contreras As The Next President & CEO

Contacts: Diane Wilush
 Richard Forkosh



 
 UCP National Names Armando A. Contreras As The Next President & CEO (Washington, DC) – United Cerebral Palsy, Inc., (UCP) the leading national organization which advocates and promotes the inclusion and full citizenship of individuals living with cerebral palsy and other disabilities, announced today that its Board of Trustees has named Armando A. Contreras as President and CEO effective June 5, 2017. Contreras is currently the CEO of UCP of Central Arizona and will replace Richard Forkosh, who is currently serving as UCP Inc., Interim CEO.“We are delighted to have Armando join UCP as the new President and CEO,” said Diane Wilush, Chairman of UCP National’s Board of Trustees. “The selection process was rigorous, and Armando is the perfect choice; his leadership at UCP of Central Arizona and track record of organizational management, fiscal responsibility, and his mission driven focus will continue to build a strong future for UCP National. Most importantly, Armando is devoted to serving and empowering people with disabilities and he truly embodies everything our organization stands for.”

“It has been a privilege, honor and a true blessing to have served as the CEO of United Cerebral Palsy of Central Arizona for the past seven years,” said Armando Contreras. “I am abundantly grateful to have worked with purpose-driven, passionate staff that are committed to enhancing the lives of thousands of children, teens and adults by providing the resources necessary to build a life without limits! I would also like to express my sincere gratitude to Richard Forkosh for his executive leadership and exceptional integrity during his term as Interim CEO. I look forward to working closely with the UCP National Board, Affiliates and Staff to address the priorities at hand, set goals and build a pathway to sustainability.

As the CEO of United Cerebral Palsy of Central Arizona for the past seven years, Armando has increased net assets, built internal capacity, standardized business processes and enhanced the trust and communication in the organization. Contreras was instrumental in executing an agreement with Circle K, a major fundraiser collaborator of UCP’s for over 30 years, responsible for expanding therapy services for underserved children at the state of the art, UCP Downtown clinic, and diversified the organization’s grant and philanthropic base. Contreras has significantly increased UCP’s community awareness of the vital programs and services offered by UCP not only within the philanthropic circles, but also with public officials and key stakeholders in the disability community. Today, UCP of Central Arizona is one of the most highly respected agencies in Arizona serving children, teens and adults with various disabilities.

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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 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 .

UCP Expresses Concerns About American Health Care Act of 2017

Last Thursday, Members of the House of Representatives passed, by a narrow margin, H.R. 1628 (the American Health Care Act of 2017, or AHCA for short). United Cerebral Palsy, along with our colleagues in Washington, expressed concerns about the bill in its current form (as well as previous proposals that were circulated).

 

We joined coalitions focused on the preservation of coverage for individuals with pre-existing conditions, coverage for rehabilitative and habilitative services, and protecting Medicaid. We also took part in advocacy efforts with the Consortium of Citizens with Disabilities, a coalition of 100 national disability organizations working together to advocate for national public policy that ensures the self-determination, independence, empowerment, integration, and inclusion of children and adults with disabilities in all aspects of society. In short, we are not alone in our concerns and we will continue to work together to fight this harmful bill.

We share the concerns many of you have voiced to us about the lack of review by the Congressional Budget Office of this latest bill, and the potentially devastating consequences the House bill as written could have on the 175,000 families served by UCP’s affiliate network (and really all individuals with disabilities who rely on Medicaid for health coverage and/or long-term services and supports).

We are hopeful that as the Senate deliberates, more information about the projected impact of the House bill will become known and that the Senate will not pass a bill that would bring harm to our community.

Senators need to hear from constituents, and we hope you will tell your story. To learn more about UCP’s public policy work and to get involved, please visit http://ucp.org/what-we-do/public-policy/

We’re Partnering With The Mighty!

We’re thrilled to announce a new partnership that will bring United Cerebral Palsy’s resources to the front of The Mighty‘s wide-reaching readership. We will now  have a growing home page on The Mighty , and appear on many stories on the site, allowing us to get many more people involved with our organization.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness, and disability. It is estimated that 764,000 children and adults in the U.S. manifest one or more of the symptoms of cerebral palsy, and that 1 in 5 Americans live with some form of disability. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We’re dedicated to providing comprehensive support and community for children and adults living with cerebral palsy, as well as other disabilities, and their families. With this partnership, we’ll be able to help even more people.

We encourage you to submit a story to The Mighty and make your voice heard.

Here’s an example of the kind of stories you’ll find on The Mighty: Tommy Hilfiger Launches Adaptive Collection for Children With Disabilities

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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To view this press release in PDF format: click here.

UCP to Host Mandela Washington Fellow

 

 

 

UCP SMALL                   NMF LOGO

 

 

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://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/.