UCP Releases 2016 Case for Inclusion Report





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


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.



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

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/.

Disability Policy Seminar Brings Advocates to Capitol Hill








Almost 700 disability advocates gathered at The Renaissance Hotel in downtown Washington, D.C.April 13-15 for the annual Disability Policy Seminar. Co-hosted each year by UCP, The Arc, SABE, AAIDD, AUCD and NACDD, this event brings together advocates, policy experts and people with disabilities and their families on Capitol Hill to discuss current policy issues important to people with intellectual and developmental disabilities and to advocate for top priority policies by going directly to their representatives in Congress.

Take a peek at the event courtesy of photos from AUCD at https://www.flickr.com/photos/aucd.

Visit disabilitypolicyseminar.org for more general information about the event and to plan for next year.


United Cerebral Palsy, AACPDM Welcome Global Experts to Discuss Changing Landscape for Cerebral Palsy, Developmental Disabilities

Organizations Use Far-Reaching Discussion to Inaugurate New Partnership
During AACPDM 64th Annual Meeting in Washington, DC


Washington, DC – United Cerebral Palsy (UCP), a leading service provider and advocate for children and adults with an array of disabilities, and the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) have invited leading experts from around the world to discuss the future of cerebral palsy (CP) and other developmental disabilities at Shared Learning, Global Transformation: The Changing Landscape for Cerebral Palsy & Other Developmental Disabilities, on Wednesday, September 22, 6:30 – 9:30 p.m. ET at the Newseum, 555 Pennsylvania Avenue, NW, Washington, DC.

The event inaugurates a partnership between the organizations at AACPDM’s 64th Annual Meeting, featuring a Panel Discussion/Presentation made possible through the generosity of the Cerebral Palsy International Research Foundation (CPIRF). During this presentation, which will also stream LIVE on UCP’s website, leading researchers, medical experts, technologists and futurists will explore advances in the field that are changing the way that people with disabilities live their lives.

This new partnership links one of the country’s largest health care nonprofits – UCP – with the leading coalition of physicians and researchers in the field of CP and developmental medicine – AACPDM. While there have been major advances in understanding CP and other development disabilities over the last 150 years, an explosion in research, patient to patient networks and advances in technology, has radically altered the landscape, resulting in a paradigm shift creating a life without limits for people with disabilities.

“We are excited to mark a new partnership with AACPDM to encourage investments in research and treatment in such a public and special way,” said Stephen Bennett, former United Cerebral Palsy President and Chief Executive Officer. “At the heart of both of our organizations is the desire to create a life without limits for people with disabilities. This panel — exploring advances in medicine, research, treatment and the creation of dynamic new networks — gives us a chance to demonstrate the power of this partnership for people with disabilities. We are honored to be able to help AACPDM kick off its 64th Annual Meeting in such a significant way.”

The panel presentation will be followed by a Governance Reception with leaders from both groups.


WHO: United Cerebral Palsy (UCP) in partnership with the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM)

WHAT: Panel discussion/Presentation to discuss the changing landscape for CP and other developmental disabilities, exploring how advancements in medicine, technology and interconnected networks have radically transformed the lives of people with disabilities, enabling them to live a life without limits.

The presentation will be followed by a Governance Reception hosted by Shionogi Pharma Inc.
Panelists include:

  • Richard Stevenson, MD, Professor of Pediatrics at the University of Virginia School of Medicine in the Division of Developmental Pediatrics
  • Linnea Burman, Director of Drug Delivery Marketing, Medtronic
  • Robert Armstrong, MD, Founding Dean of the College of Medicine – East Africa
  • Janice Brunstrom-Hernandez, MD, Director of the Pediatric Neurology, Cerebral Palsy Center at St. Louis Children’s Hospital
  • Greg Elin, Chief Data Officer, Federal Communications Commission

LIVE video of the Panel discussion/Presentation will stream from the UCP website:


Panelist bios and headshots available upon request

WHEN: Wednesday, September 22, 2010, 6:30 – 9:30 p.m. ET
• 6:30 p.m. – Panel Discussion/Presentation
• 7:45 p.m. – Governance Reception

WHERE: Newseum, 555 Pennsylvania Ave., N.W., Washington, DC 20001

ATTIRE: Business attire

INVITE: This event is by invitation only

Please RSVP to attend and cover:
Lauren Cozzi: 202-973-7114 (direct), LCozzi@ucp.org

Shared Learning, Global Transformation: The Changing Landscape for Cerebral Palsy & Other Developmental Disabilities is generously underwritten by Shionogi Pharma Inc. The Panel Discussion/Presentation is made possible with support by the Cerebral Palsy International Research Foundation (CPIRF).


About United Cerebral Palsy:
Founded more than 60 years ago by parents of children with cerebral palsy, today United Cerebral Palsy (UCP) is a leading service provider and advocate for children and adults with disabilities. The UCP mission is to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network. This includes approximately 100 local service providers reaching more than 176,000 individuals daily in the U.S., Canada, Scotland and Australia. The national office in Washington DC supports the affiliate network; advocates on behalf of individuals with disabilities; advances federal disability public policy (Disability Policy Collaboration); provides information and referral; and develops forward-thinking initiatives and programs like Life Without Limits and My Child Without Limits.

About American Academy for Cerebral Palsy and Developmental Medicine
The Academy was founded in 1947 to provide multidisciplinary scientific education for health professionals and promote excellence in research and services for the benefit of people with cerebral palsy and childhood-onset disabilities. The diversity of the six founding members (an orthopedic surgeon, a neurologist, two pediatricians, a neurosurgeon and a physiatrist) signified the necessity for an interchange of ideas and experiences among all of those who provide care for patients with cerebral palsy. The foresight of our founders is reflected by the Academy’s volunteer leadership and increasing membership of specialists in these and other disciplines. For more information, please visit www.aacpdm.org.

About Shionogi Pharma Inc.
Shionogi Pharma Inc. is a US-based company of Shionogi & Co., Ltd. Headquartered in Osaka, Japan, Shionogi & Co., Ltd. is a major research-driven pharmaceutical company dedicated to placing the highest value on patients. Shionogi’s Research and Development currently targets three therapeutic areas: Infectious Diseases, Pain, and Metabolic Syndrome. The Company has provided such innovative medicines as Crestor and Doripenem, which have been successfully delivered to millions of patients. In addition, Shionogi is engaged in new research areas such as allergy and cancer. Contributing to the health of patients around the world through development in these therapeutic areas is Shionogi’s primary goal. For more details, please visit www.shionogi.co.jp. For more information on Shionogi Pharma Inc., headquartered in Florham Park, NJ, please visit www.shionogi-inc.com.