UCP of Michigan Staff Invited to Attend Meeting Called by The Pope

Special thanks to Glenn Ashley, retired staff from UCP, for his assistance in working to help put this post together. 

UCP of Michigan’s Public Policy Specialist, Barb Valliere, was invited to attend the U.S. Regional Meeting of Popular Movements (RMOPM), which ran from February 16-19 in Modesto, CA.Part of international movements called by the Pope, the meeting in California brought together nearly 700 leaders from clergy members to grassroots leaders to provide input on a variety of social issues, including: job access and inclusion for people with disabilities, environmental issues, and racism. This meeting was the third in a series of international meetings (the previous two were held in Rome and Bolivia) aimed at bringing together members of the clergy and grassroots activists. For Barb, while the journey to California marked her first time on a plane, as Catholic woman with cerebral palsy it was an opportunity she could not pass up.

Ms. Valliere was one of three people invited from the Lansing, MI area to attend the meeting. Her invitation was a result of her leadership and work in community organizing efforts at the state and national levels. Initially, no one from the area was scheduled to speak, however, an issue with accessibility changed all of that. After requesting to be put in an accessible room, Barb was put in a room that was not accessible for her. The conference organizers were able to rectify the problem and accommodate her with another room. RMOPM asked her if she would like to address the entire assembly at dinner about the problem and her experience as person with a disability.


In her remarks to the assembly, she emphasized the importance of civil rights for people with disabilities. Attendees were reminded that when they plan events and invite people, to make sure to take care of their needs and have the event accessible to all, and to not assume that a space is accessible on word alone. She also encouraged other individuals with disabilities to advocate for yourself to ensure that your needs are met. Ms. Valliere made her point in community organizing fashion, encouraging event participants to move deeper into a  discussion on access and issues that affect the disability community.

 

Information for the blog was taken from movimientospopulares.org‘s press release.

Jeffrey Cooper, Recipient of the Kathy O. Maul Leadership Award at 2017 UCP Annual Meeting

Congratulations to Jeffrey Cooper, President, and CEO of UCP of Central Pennsylvania on being named the recipient of the Kathy O. Maul Leadership Award at the 2017 UCP Annual Meeting in Nashville, TN!

Thank you for all of your hard work, leadership, and dedication to individuals with disabilities!

Jeffrey Cooper, President, and CEO of UCP of Cental PA with Interim CEO of the UCP national office, Rick Forkosh.

UCP and the National Council on Disability – “First Responders and Disability”

On December 9, 2016, UCP and the National Council on Disability joined together to host a day of conversation surrounding first responders and the disability community. Bringing together diverse perspectives from across the country, the day was a raw and honest look at the way law enforcement and other members of the first responder community interact with those living with disabilities.

Watch the footage (captioned) below:

 

View the Program Agenda

View the Event Summary here

 

United Cerebral Palsy and the National Council on Disability Coming Together for “First Responders and Disability”

UCP-NCD2United Cerebral Palsy (UCP) and the National Council on Disability (NCD) are coming together to host a day long convening on December 9th, 2016, focusing on First Responders and the Disability Community. The discussion will center on first responder reform and the impact on the disability community.

The purpose of this discussion is to gather information and resources to inform NCD’s 2017 policy project focusing on how to transform the policies and practice around First Responders engagement with the disability community. This conversation will include experts in criminal justice reform, disability rights advocates, policymakers, law enforcement organizations, and individuals impacted by state violence directly.

Please join us from 9:30 am to 2:30 pm EST in person or tune in to the live stream.

For more information, including how to RSVP: Please click here.

See the program agenda here.

Read Speaker Bios here.

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

Share Your Photos for UCP’s “Halloween Without Limits”!

It’s that time of year again! It’s time for UCP’s “Halloween Without Limits.” From now until October 31st, share your most creative costume photos and show us how you celebrate a “Halloween Without Limits”! We want to see your style and how you make Halloween your own!

UCP’s “Halloween Without Limits” is open to all ages, children and adults alike, who get into the Halloween spirit. We invite parents and individuals with disabilities to share their most creative, kooky and fun costumes to our Facebook page by tagging @UnitedCerebralPalsy 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.

Photos of children under the age of 18 MUST be submitted by a parent or guardian.

The rules are simple:

All you have to do is post your photos to UCP’s Facebook page using #HalloweenWithoutLimits or #HWL so we can all see them!

Check out photos from last year! 

We can’t wait to see your photos!

HalloweenWL 2016

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 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.

 

Join with UCP and Help Save Our Services!

NEED YOUR HELP TODAY! MAKE YOUR VOICE HEARD! 

Join UCP and others in the disability community TODAY (April 21) to tell Members of Congress how important it is they take action on the Department of Labor iStock_000012685951XSmallOvertime Exemption Rule and protect providers and those who depend on their services. The rule is in the process of being finalized and we need Congress to ensure that funding and protections are in place that allow providers to continue to provide quality care so individuals with disabilities and their families can live independent lives.

Call your Member! 

Once you reach the office, ask for the front desk staff to transfer you to their colleague who handles labor or health care issues. Remember – Members of Congress need to hear stories from home to understand why they need to take action!

We have provided talking points to guide your call! 

THANK YOU!

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