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.

 

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!

SHARE THIS WITH EVERYONE YOU KNOW! 

UCP’s 2016 Annual Conference in Las Vegas!

United Cerebral Palsy held its Annual Conference on April 4-6, 2016 at the Vdara Hotel and Spa in Las Vegas. This year’s theme for the conference was “Going All In.” UCP affiliates from across the country gathered to take part in this year’s conference with a special focus on the future of UCP.

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Rupal Patel, PhD., founder of VocalID giving the keynote address at UCP’s Annual Conference on April 5, 2016 in Las Vegas.

The first full day of the conference began with the opening plenary on innovation and technology. Featured speakers included: Bruce Borenstein, CEO of AfterShockz, a company that creates headphones which use vibrations to communicate sound, unlike typical over-the-ear or in-ear headphones. Mr. Borenstein gave one of three keynote addresses, which centered on using technology to create accessibility to better the lives of people with disabilities and their families. 

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David Carucci, Executive Director of UCP of San Diego was the recipient of the Kathy O. Maul Leadership Award, pictured with Anita Porco, Vice President of Affiliate Network and Stephen Bennett, President/CEO of UCP National at the evening reception held on April 4, 2016.

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Bruce Borenstein, President and CEO of AfterShockz giving the opening keynote address at on April 5, 2016 at UCP’s Annual Conference in Las Vegas.

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Rick Forkosh, CEO of UCP Heartland being honored at the evening reception at UCP’s Annual Conference on April 4, 2016 in Las Vegas.

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Jeff Snyder, CEO of UCP of Central California being honored at the evening reception on April 4, 2016.

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Dr. Homayoon Kazerooni presenting on SuitX at the Opening Session at UCP’s Annual Conference held on April 5, 2016 .

Dr. Rupal Patel, another keynote speaker, gave the audience a glimpse of the amazing work that is being done at her company, VocalID.  Finally, Dr. Homayoon Kazerooni of SuitX spoke about the advancements on gait training for those living with CP, and the work of SuitX to try and create customized, user-friendly experiences for all. During the evening, a reception was held where we recognized our retiring Executive
Directors and CEOs. Jeff Snyder, CEO of UCP of Central California, was honored along with Linda Johns, Executive Director of UCP of East Central Alabama; Rick Forkosh, CEO of UCP of Hartland; Carol Hahn, Executive Director of UCP of Nebraska; and Les Leech, CEO of UCP of Southwest Florida. A special congratulations goes to Dave Carucci, Executive Director of UCP of San Diego on receiving the Kathy O. Maul Leadership Award, which honors one outstanding executive director each year.

A “Town Hall” style meeting was held on Tuesday April 5, 2016. This was an opportunity for our affiliates to come together and voice their thoughts and opinions, as well as to discuss the future of UCP.  We celebrated our Awards for Excellence winners at a special luncheon. The Awards for Excellence Luncheon recognizes the hard work and time of the wonderful volunteers who donate their time to our affiliates across the country.

The Nina Eaton Program of the Year Award was awarded to UCP of Oregon and Southwest Washington for their Employment Solutions Program. The Ethel Hausman Award went to Maren Jacobs of UCP of Berkshire County. The Ethel Hausman Award honors a local UCP volunteer who has made an outstanding contribution to UCP and to the quality of life of people with disabilities through their work.The Outstanding Youth Award was presented to Rachel Prior for the volunteer work with UCP of Greater Cleveland. The “Life Without Limits” Award was presented to Phillip Evans.

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Rachel Prior accepting The Outstanding Youth Award for her work with UCP of Cleveland.

After the Awards for Excellence Luncheon, affiliates were invited to take part in facilitated small group discussions. These discussions also served as an opportunity to give thoughts and opinions on the future of UCP and the affiliate network.

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Phillip Evans receiving the “Life Without Limits” Award at UCP’s Awards for Excellence Luncheon on April 5, 2016.

Breakout sessions were held on the last day of the conference. The topics for the breakout sessions included: The Future of Early Childhood Intervention with Dr. Jim Blackman, Medical Consultant for UCP; “Making It Work,” featuring The Employment Workgroup, which discussed employment for people with disabilities; and “ABC’s of Caregiving” presented by UCP’s Director of Advocacy, Jennifer McCue. “ABC’s of Caregiving” focused on the recent ruling from the Department of Labor on overtime for caregivers.  Stephen Bennett, CEO of UCP National, presented on the “The State of Disability Today.” This was a special session held for our sponsors and exhibitors to learn more about the current disability community and as a business how they can best serve them.  Finally, there was a special STEPtember 2016 breakfast, where attendees learned about the changes to STEPtember for this year and how to make it as lucrative and beneficial as possible for participating affiliates.

The winners for our
“Exhibitor Bingo” were also announced at the end of the conference.
Congratulations to the winners: Chris Adams of Stepping Stones, Inc. in Cincinnati; Mike Ward of UCP of Metro Detroit; Lynn Carpentier of Gillette Children’s Specialty Hospital/UCP of Minnesota; Monica Elsbrock of UCP of Nevada; Donna Fouts of UCP of Hawaii and Dr. Dave Piltz of UCP of West Central Wisconsin. A special thank you to Convaid, Troy Technologies, and AfterShockz for their generous donations for our “Exhibitor Bingo.” The prizes totaled over $6,000 and will given directly to clients in each affiliate’s territory.
Thank you to all who helped to make this year’s Annual Conference such a success!

 

 

THANK YOU TO OUR SPONSORS:

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UCP Wants To Hear From YOU In 2016!

Happy New Year!

Get. Excited!

New Years is many things. For me, it is the time to remember successes of the past year and the time to get excited for the year to come. It’s all about…time. Counting down. Counting towards.

I’m Jennifer McCue, UCP’s Director of Advocacy. I’m new here to UCP – just a few months in. Before we talk about the new to come to UCP in 2016, let’s reflect quickly on what has happened in 2015. You can learn in detail here, but in a snapshot, here’s what happened: 

  • The 25th Anniversary of the American with Disabilities Act celebrated 25 years.
  • Congress passed a funding bill that included provisions to fund caregiving and respite care programs.
  • Provisions to cap reimbursement for complex rehab technologies were delayed for a year.
  • Education legislation was passed that includes improved provisions for the disability community.

In a year, where successes were few and far in between, it seems the needle may be moving. Consider me a skeptic, but while there is indeed reason to be excited and reason to be hopeful there is a greater reason and necessity to want more.

On the horizon for 2016 we have a Congressional election. Efforts are underway to implement education and reimbursement provisions along with housing reform and home and community based services, provisions for personal care attendants and caregivers are in motion and independent living efforts and activities are being put forward by the Administration for Community Living.

We are also going to create a platform here at UCP for you.  A place to be heard, a place for information, a place to connect, a place to tell your story and use it towards change.  A place for me to know you.

With all that is happening here in DC, and with you at home we will be sending you a series of communications to update and engage but also to ask you – what is important to YOU?  What would you like to see happen?  What NEW do you want to see this YEAR? You can tweet us (we’re @UCPNational) or tell us on Facebook using the hashtag #UCPNEWYEAR!

A lot is on the horizon and we will need you, your stories, your voices, and your support to make sure we are on the path towards a life without limits. We are counting on you.

So, tell me… what does UCP mean to you? 

Happy New Year!

Talk soon.

UCP Honors Sprint Relay in Connecticut

 

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

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

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

 

 

 

 

 

 

 

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

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

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

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.

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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: http://responsibility.motorolasolutions.com/index.php/solutions-for-community/ and for more information on UCP please visit www.ucp.org

 

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: www.motorolasolutions.com/giving.

 

 

Show Us The Love!

We want to know what you love! Is it a day at the ballpark? Hanging out at the beach with your friends? Being around your dogs? Or does being around your family make your heart swell? UCP is officially launching a “Summer of Love!” We want to show the world that people with disabilities are just as passionate about their pursuits as people without disabilities. Please share a photo on our Facebook or Twitter page that shows us what – or who – you love the most. Whether it’s a snapshot of your sweetheart, or a pic of you engaged in your favorite pastime, we want to see it! There are no rules, just keep it family-friendly. There’s one thread that connects us all—people with disabilities and without, is love. Sharing your photo is easy! Just go to our Facebook page, give us a like and upload your photo on our wall. If Twitter is more your thing, give us a follow on Twitter and tweet us @UCPNational. Whatever way you choose to share, be sure to use the hashtag #SummerofLoveUCP! Follow us on our social media accounts and be sure to keep an eye on our website (UCP.org) to see a gallery of all of the submitted pictures!

Facing the Day with Dignity

Today is the 25th anniversary of the passage of the Americans with Disabilities Act (ADA). This landmark legislation guaranteed increased access for people with disabilities in almost every facet of community life. The doors to full participation, independent living, and economic self-sufficiency for persons with disabilities opened metaphorically and literally in many cases.

11JE04GDAs an organization which serves and supports people with a broad range of disabilities and their families, UCP is keenly aware of the profound difference this singular act made in the lives of so many people – whether they realize it or not.

 

At the 25 year mark, there now exists an entire generation of people with disabilities who have matured into adulthood under the legal protections of the ADA. They expect accessible entrances to public building, wheelchair ramps and curb cuts, closed-captioning and sign language interpreters, and accessible public transportation options. And, for 20-somethings without disabilities, these accommodations have become a part of their consciousness as well. Even if they don’t experience disability personally, many people benefit from the changes brought about by the ADA. Just think of the young mother with a stroller who no longer has to deal with high curbs at each crosswalk.

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However, there are still physical and attitudinal challenges to overcome and advocates are still needed. Every year, investigations are open and lawsuits are filed over issues of ADA compliance. And, every year, government officials, disability experts, lawyers and judges debate the meaning and application of various provisions in the law. Are the drivers for companies like Uber and Lyft independent contractors, not necessarily bound by the ADA? Are service animals always allowed in public school classrooms no matter the circumstances? What, exactly, do the words “reasonable accommodations” mean?

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Like any other law, we will continue to debate the details and try to adapt interpretation of the now decades-old language to a rapidly changing landscape. However, we think that the true accomplishment of the ADA will not ultimately be judged by changes to transportation, education, or access to a local public library. The real victory to be claimed by the disability advocates and allies who worked for the law is the opportunity it provides for people with disabilities to face each new day with dignity that comes with full equality.

 

Regardless of the tactics it employs, the law explicitly states that:

 

“Physical or mental disabilities in no way diminish a person’s right to fully participate in all aspects of society…

 

It makes the unequivocal statement that in the eyes of Congress, representatives of “We the People,” people with disabilities are people, first and foremost, as well as full citizens of the United States. It is a recognition that the aspects of our society which prevent a person with a disability from being fully able to participate need to be addressed and Congress intends to provide a “…national mandate for the elimination of discrimination against individuals with disabilities.” It is the law of the land and confirmation that people with disabilities should never again have to accept anything less than opportunities provided to their peers.

Comedians with Disabilities Come Together to Break Down Barriers

Twenty five years ago, before the passage of the landmark Americans with Disabilities Act (ADA), there likely would have been physical barriers in clubs and theaters, challenges at airports and in hotels or other issues that would make it difficult, difficult if not impossible, for Michael Aronin, Shanon DeVido, Tim Grill, and Mike Murray to mount a full-fledged comedy tour.

In 2015, accessibility in public places has improved and with it the attitudes of many toward people with disabilities such as spina bifida, cerebral palsy, hearing impairment and spinal muscular atrophy. However, for many who don’t have a close friend or family member with a disability, there are still misconceptions and a lack of understanding. Employers can still be reluctant to hire people with disabilities, especially in the entertainment industry where there is a perception that audiences won’t respond well.

So, the comedians set out on a mission to bridge the gap with laughter. Wicked wit forged from a lifetime of dealing with adversity, No Comic Left Behind smashes stereotypes with every joke: people with disabilities are really no different from you and I. Set-ups on relationships, jobs, and family come with punch lines about wheelchairs and the underrated benefits of being deaf.

“Comedy is a great way to break down that barrier that people often have when they’re talking with people with disabilities,” said Shannon DeVido.

The comedians have long understood that laughter is the best medicine. Michael Aronin, who nearly died at birth and now has cerebral palsy, uses humor to coach audiences toward their career goals as a motivational speaker. And, Tim Grill was born with spina bifida, going through thirteen surgeries to enable him to walk. Rounded out by experienced performer and wheelchair user Shannon DeVido and Mike Murray, who was deaf until the age of 40 when Cochlear implants brought him into the hearing world, each comic is eager to raise awareness about disability.

Collectively, performing under the banner of No Comic Left Behind, the quartet is determined to follow their mission across the country in clubs, theaters and universities. Their ultimate goal is to expose as broad of an audience as possible through, raising awareness about the inherent abilities of people with disabilities. Once the audience is laughing, it becomes much easier to talk about the serious stuff and make people think about what they can do to better include people with disabilities in everyday life.

“Think about it,” said Tim Grill. “We can win over 100 or more people with each show just by being funny – which is something we do on daily basis anyway. Then those 100 people go back out into the world feeling a lot less uncomfortable around people with disabilities and help spread the love. They’ll be more likely to think about accessibility and inclusion and more likely to have some understanding of the next person with a disability that they meet.”

 

For more information about No Comic Left Behind, check out their website!

You can also watch a short video featuring the comics of No Comic Left Behind on UCP’s Youtube Channel!

How Well Does Your State Serve People with Disabilities?

Arizona, Maryland, Missouri, New York & Hawaii Top 2015 Case for Inclusion Rankings

 

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).

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

TCase for Inclusionhe annual 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. These indicators include 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. The report is a product of a 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.

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. An interactive website allows visitors to compare and contrast results among selected states and dig deeper into the data.

The report puts each State’s progress into a national context to help advocates and policymakers in their missions to improve life for people with disabilities and their families.

  • Advocates should use this information to educate other advocates, providers, families and individuals, policymakers and state administrations on areas needing improvement. The data can support policy reforms and frame debates about resource allocation. Advocates can also use the information to prioritize those areas that need immediate attention and support funding to maintain high quality outcomes, eliminate waiting lists and close large institutions.
  • Elected officials should use this report as a guide on which issues and States need time and attention and, possibly, more resources or more inclusive policies.
  • Federal and State administrations should use this report to put their work and accomplishments in context and to chart a course for the next focus area in the quest for continuous improvement and improved quality of life.

Stephen Bennett“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.”

 

How is your state doing? 

 

  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), and 13 more are projected to close by 2016 in California, Massachusetts, New Jersey (3), New York (2), Oklahoma (2), Tennessee (2) and Virginia (2).
  2. For people with disabilities life should be without limits26 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.
  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.
  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.
  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. Three States report at least half of those served got 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.
  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).

2013_donation_overlay_buttonYour support makes The Case for Inclusion possible each year. Make a gift today to help UCP continue to fulfill its mission of a Life Without Limits for people with disabilities and their families by providing advocacy, support and services.