New Resource for People with Disabilities Driven by Community

MyLifeScreenShot

Washington, D.C. (January 6, 2015) –UCP is pleased to introduce a new community-driven resource for people with disabilities called My Life Without Limits. This initiative is a natural companion to UCP’s My Child Without Limits program, which was developed for the parents and family members of children with disabilities. A flagship website and online community, www.mylifewithoutlimits.org, will serve as the new program’s focal point and is intended to become an online hub for people with a range of disabilities.

My Life Without Limits is designed to allow people with disabilities to join and receive the latest news and other benefits of community membership such as writing guest blogs, commenting on posts and resource pages and participating in polls and surveys. In the forum – coming soon – members can stir up conversations and ask for advice. Information and resources pertaining to education, entertainment and lifestyle, health and wellness, travel, relationships and more will be available and updated, with guidance from community members themselves. And, people can share new resources or upcoming events on the site or using the #MyLifeWithoutLimits hashtag on social media

UCP’s Director of Membership and Public Education talks about his personal connection to this project in a new blog: “Connecting with others who have a disability is something that I never really did until I started working at UCP. Until then, I must have known less than a handful of others,” he said.

“When I joined UCP, my life changed. I began to understand how there are so many other people with disabilities (one billion worldwide). Immediately, our stories were shared– those related to growing up and our relationships, jobs, goals and more. This connection is one that everyone should have the opportunity to experience.”

The initiative’s flagship website, http://www.mylifewithoutlimits.org, launched Monday, January 5 and  an online forum will be added soon. Later this year, we will announce more activities – both online and off – for the program.

UCP Launches New Resource for People with Disabilities

ORyan Case

O’Ryan Case

O’Ryan Case is the Director of Membership and Public Education for United Cerebral Palsy’s national office. He grew up in Maryland and lives there now, the proud dad of a three-year-old son. As a person with CP and the director of several of UCP’s programs, he has a very personal connection to UCP’s newest initiative, My Life Without Limits, which he writes about here. 

Introducing My Life Without Limits

All of us at United Cerebral Palsy (UCP) are excited to see the launch of My Life Without Limits (www.MyLifeWithoutLimits.org). Connecting with others who have a disability is something that I never really did until I started working at UCP. Until then, I must have known less than a handful of others. My visits to the Nemours/Alfred I. DuPont Hospital for Children, or “The duPont Institute,” as I remember it were big deals– not just because I was meeting with doctors and nurses who understood my cerebral palsy (CP), but because I would see other kids and teens who had visible disabilities. Though I had the best family and friends and great times in and outside of school growing up, the visits brought a feeling of comfort– there, I felt “normal.”

When I joined UCP, my life changed. I began to understand how there are so many other people with disabilities (one billion worldwide). It was interesting how there are so many, yet I hardly knew of any others. Immediately, our stories were shared– those related to growing up and our relationships, jobs, goals and more. This connection is one that everyone should have the opportunity to experience. Social media has been wonderful by allowing people with disabilities to connect. I’ve met great friends through Facebook groups and Twitter chats and certainly plan and hope to continue doing so.

CP Hand

“CP Hand”

Though these connections through social media have been great, I can’t put into words how excited I am for our new My Life Without Limits (and mobile-friendly!) website. UCP gets it– how it’s so important for people with disabilities to be able to communicate, bounce ideas, exchange advice and vent about latest stories, hot topics, edgy subjects and whatever else is on our minds. For example, have you ever heard of the “CP hand?” Of course, this isn’t a medical term but after chatting with others who “have it,” it seems about as good of a term as any other. I’m sure many people reading this will know exactly what I’m talking about. If not, it’s basically a resting position of the hand that, apparently, seems common among people with CP. I used to see it and wonder why I kept doing this weird thing with my hand but after discovering others doing it (and sharing some good laughs about it), I know it’s just another part of my disability.

MyLifeScreenShotMy Life Without Limits will be community-driven, allowing people with disabilities to join and receive the latest news and other benefits from being a member, write guest blogs, comment on blog posts and resource pages and participate in polls and surveys. Soon, the site will have its own forum, where members can stir up conversations and ask for advice. Information and resources pertaining to education, entertainment and lifestyle, health and wellness, travel, relationships and more will be available and updated, with guidance from members themselves. People can share new resources or upcoming events that others should know about. They can use the #MyLifeWithoutLimits hashtag on social media to connect with us and highlight a day-in-the-life of someone with a disability. Whether it’s a photo of a broken escalator (oh boy) or graduation or marriage pic (whoop!), we’re excited to see it. There’s a good chance others can relate and will appreciate seeing someone else going through the same experiences. And our “What’s Hot” button is a good daily dose of entertainment, news, stories and more that is trending in the world of having a disability.

Remember, just like UCP, My Life Without Limits serves people with a range of disabilities– those with CP, spina bifida, autism, multiple sclerosis, amputation, traumatic brain injury and more. It’s a resource for all disabilities and I’m certainly excited to be able to connect with so many others (including those with CP, of course) who have gone through alike experiences or are looking ahead to similar goals and challenges– and I’m excited for others everywhere to be able to do the same things. I’ve had some of the best conversations (at the office, during a road trip, over a drink, through a chat on social media) with others who have disabilities about topics that, at one time, I never would have imagined being able to discuss– the stagefright at graduation, getting into that first relationship, not being allowed in a bar because the bouncer thinks I’m ridiculously drunk– I’ll stop there but the list goes on and on. My Life Without Limits will allow these conversations to happen even more and reach a much wider audience.

If you have a disability, we hope you’ll check out this new resource. If you don’t have a disability but know somoeone who might be interested, please let them know. And, if you have a child or a loved one with a disability, we have a resource just for you, too. Check out UCP’s My Child Without Limits program which serves as the go-to resource for the parents and families of people with disabilities. This is an exciting start to 2015 and we hope to get to know you soon!My Life Without Limits
Have a Happy New Year from all of us at UCP!

LEADING DISABILITY GROUPS USE NEW MEDICAID REPORT FINDINGS & RESROURCES AS GUIDE IN ADVOCACY FOR PROGRESS, AGAINST FAILURES IN STATES SERVING AMERICANS WITH ID/DD

FOR IMMEDIATE RELEASE

CONTACT:

Kaelan Richards, UCP: 202-973-7175,

Lara Schwartz, AAPD: 202-521-4309, lschwartz@aapd.com

LEADING DISABILITY GROUPS USE NEW MEDICAID REPORT FINDINGS & RESOURCES AS GUIDE IN ADVOCACY FOR PROGRESS, AGAINST FAILURES IN STATES SERVING AMERICANS WITH ID/DD

 

 

 

The Case for Inclusion should be used a tool to determine how to build state support and service systems that work for Americans with intellectual and development disabilities

Washington, DC (May 23, 2012) – While progress has been made and there is more quality assurance of services provided, some states are failing to adequately serve Americans with intellectual and developmental disabilities (ID/DD), according to The Case for Inclusion 2012, a new Medicaid report released today. United Cerebral Palsy (UCP) and the American Association of People with Disabilities (AAPD) are calling on advocates to use The Case for Inclusion as a tool to determine how to build state support and service systems that work for people. The findings for 2012 reveal that:

  1. While progress has been made, there is room for improvement: 36 states can now show that 80% of the individuals with ID/DD in their states are served in the community;

     

  2. States are becoming more involved in ensuring the quality of the services they provide: 29 states have established a comprehensive quality assurance program to measure the outcomes of the community services they deliver;

     

  3. But there is still more to do, particularly in providing services: waiting lists for critical community services continue to climb with more than a quarter of a million, or 268,000, people with ID/DD.

 

The 2012 report tracks the progress of community living standards, and it shows that the states with the best services and supports for Americans living with disabilities are Arizona, Michigan and California. The lowest performing states are Arkansas, Texas and Mississippi, which have remained at the bottom of the rankings since The Case for Inclusion was first published in 2006.

While many states appear to be financially stable, the coming intersection of an aging population, people living with disabilities, and limited financial resources, will have a significant impact on the country’s entitlement programs.

The report 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, the findings develop a comprehensive analysis of each state’s progress or failures in providing critical services to individuals living with disabilities.

Since 2006, these rankings enable families, advocates, the media and policymakers to fully understand each state’s progress or lack of improvement, and help to protect successful efforts against unwise funding cuts, as well as guide future reforms to promote inclusion and enhance the quality of life for these, and ultimately all, Americans.

“Each year, UCP publishes The Case for Inclusion as part of its continuing efforts to advocate for civil rights protections and public policies that provide support for individuals living with disabilities, ensuring fair and full citizenship for all Americans,” said former UCP President & CEO, Stephen Bennett. “The Case for Inclusion clearly identifies the states that are successful in providing the supports and services that people living with disabilities need, as well as states that are struggling. I urge all states and advocates to utilize The Case for Inclusion as a tool to strengthen their efforts, and to advance the independence, productivity and full citizenship of people with disabilities.”

“It is critical that states honor their obligations to people with disabilities by providing comprehensive and high-quality services through their Medicaid programs. That is why people with disabilities and our allies are fighting to preserve and improve Medicaid at the state and federal levels. The Case for Inclusion makes clear that some states are falling short and provides a roadmap for advocacy. AAPD encourages our community, members, and supporters to use this tool in our continued efforts to preserve the vital services and supports that enable eight million people with disabilities to live the lives we deserve,” said AAPD President and CEO Mark Perriello.

Online features, reports and data:

The 2012 report and data from all previous reports is available on UCP’s website using a robust new web module and design at ucp.org/public-policy/the-case-for-inclusion. Users can:

  • Compare state & national data
  • View state scorecards
  • Interact with the ranking map
  • See highlights of the 2012 report, top and bottom 10 states, most improved states and those with biggest drops, and  facts about the best performing states
  • Advocate for areas needing improvement in states, and promote achievements that maintain high quality outcomes, like eliminating waiting lists and closing large institutions
  • Download the full 2012 report and previous reports

 

Users can pull individual state outcomes and measures, track each state’s performance over time, and compare states among one another and to the US average. The Case for Inclusion data, tables and graphs are exportable and printable as needed for personal and professional use.

For further detail about the report itself, there will be a press briefing at 1:00 p.m. ET (10:00 a.m. PT). Author Tarren Bragdon will provide insight into the rankings and data, which advocacy groups and individuals can use to raise awareness for key outcomes for people with disabilities.

  • Toll-free: 1-888-450-5996
  • Participant passcode: 786597

 

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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 100 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 the American Association of People with Disabilities (AAPD)

The American Association of People with Disabilities (AAPD), the country’s largest cross-disability membership association, organizes the disability community to be a powerful force for change – politically, economically, and socially. AAPD was founded in 1995 to help unite the diverse community of people with disabilities, including their family, friends and supporters, and to be a national voice for change in implementing the goals of the Americans with Disabilities Act (ADA). To learn more, visit the AAPD Web site: www.aapd.com.