Champions of Change Honored at White House

WHChaps 1This week, staff from UCP National, along with several participants in our summer intern program, attended the Champions of Change ceremony at the White House in Washington, D.C. The program, “Disability Advocacy Across Generations” recognized the 25th anniversary of the Americans with Disabilities Act and nine “Champions of Change” selected by the Obama administration. Each champion has been very influential in the disability community and has brought about major changes, while facing obstacles of their own.

Champion Dilshad Ali, a mother of a son with autism, spoke about how disability is something that is hidden and never spoken of in her Muslim community. Ali discussed the importance of being able to access the support of one’s religious or cultural institutions as part of a panel on Effective Disability Advocacy. There was also Dior Vargas, a Latina woman who suffers with depression and anxiety. Vargas emphasized how many times disabilities are ‘invisible’, and therefore go unnoticed. She brought an interesting aspect to the table, and channeled people’s focus on another kind of disability, mental illnesses, which are often left out of the conversation on disability advocacy.

The day’s speakers included Jim Abbott, a former MLB pitcher and Olympian born without a right hand. Abbott has faced physical obstacles his whole life – especially in sports. He spoke about how he had to do things a little bit differently, but that is what got him to where he is today. He showed the audience how he adapted to pitching a baseball with one hand, and told stories about how former teachers and coaches who were open to “doing things differently,” giving him the opportunity to excel.

Another panel on Owning the Future: Disability, Diversity and Leadership included some Champions, who faced more communication barriers than others. Mike Ellis, who is deaf, explained more about his role at AT &T and working to ensure communication technology was accessible to all. Another champion, Catherine Hutchinson, experienced a severe brain injury and is now quadriplegic used a speech synthesizer to communicate.

At the end of the second panel, Derrick Coleman from the SuperBowl champion Seattle Seahawks worked to motivate the crowd to follow their dreams. He lost his hearing at the age of 3 and is the first deaf player in the NFL. Coleman told the audience to be themselves and love themselves.

U.S Secretary of Labor Thomas Perez closed out the event with information about current initiatives to improve upon worker rights, such as raising the federal minimum wage for all workers and echoed some of the panelist’s comments about the importance of participation in the workforce to true inclusion and independence.

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. 

UCP Releases Case for Inclusion Rankings and Report

Arizona, Maryland, Missouri, New York & Hawaii Top 2015 List

 

Washington, D.C. (July 16, 2014) – 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).

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 and support and transitioning 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 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.”

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

 

Significant Takeaways from the 2015 Ranking

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. 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), according to the University of Minnesota’s Research and Training Center on Community Living. Another 13 more are projected to close by 2016 in California, Massachusetts, New Jersey (3), New York (2), Oklahoma (2), Tennessee (2) and Virginia (2)
  1. 26 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.

Tracking Health, Safety and Quality of Life

  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.

Keeping Families Together

  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.

Promoting Productivity

  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 and three States reporting at least half of those served getting 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.

Serving Those in Need

  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).

Making Technology Accessible for Everyone

The following post from Microsoft Chicago’s director and community advocate Shelley Stern Grach first appeared on www.microsoft-chicago.com on April 23. United Cerebral Palsy’s Life Labs initiative is hosting it’s first Innovation Lab at Microsoft‘s Technology Center in Chicago May 19-20. Find out more about the event and how you can be a part of this intense two-day design challenge at www.ucpinnovationlab.org

 

How many of you are aware that 2015 marks the 25th anniversary of the American Disabilities Act?

I wasn’t until a few months ago, when I received  a call from United Cerebral Palsy. They were interested in hosting a hackathon for 100 people in May, and were looking for space to hold the hackathon. Fortunately, the Microsoft Technology & Innovation Center is ADA-compliant, and we are now thrilled to be hosting this wonderful program on May 19-20, when developers will be creating apps to help people with disabilities. At about the same time, I received a call from Chicago Public Schools to see if we could host a job shadow day for CPS students with disabilities. Those two calls sparked my interest, and  I also started to pay more attention to ADA 25 and to how meaningful technology can be to those who have a disability. To recognize and celebrate the important strides for people with disabilities, 2015 will be celebrating ADA 25 all year long and Chicago will be celebrating ADA 25 Chicago. This blog is the first in a series recognizing ADA 25 and its impact.

Our mission and social responsibility at Microsoft is to enable people throughout the world to realize their full potential with technology. To that end, we invested in creating an environment that capitalizes on the diversity of our people, and the inclusion of ideas and solutions, that meets the needs of our increasingly global and diverse customer base.

And that means developing technology that is accessible to anyone – regardless of age or ability. Technology has the potential to become our sixth sense.

People with disabilities are among the most marginalized groups in the world. People with disabilities have poorer health outcomes, lower education achievements, less economic participation and higher rates of poverty than people without disabilities.

Microsoft has a long history and commitment to accessibility. For more than 25 years, Microsoft has focused on creating technologies that make devices easier to use for individuals with a wide array of difficulties and impairments. Microsoft has listened, gained insights, and applied what it’s learned. The result is an increasing momentum toward the goal of making devices accessible and useful to all people. Today we empower hundreds of millions of people of all abilities around the world to use technology to enter the workforce, stay connected with friends and family, get things done and take full advantage of a digital lifestyle. We’ll spend more time in May looking at how apps can positively impact the lives of people with disabilities.

Today, I want to share with you how impressed I am with the teachers and students at CPS who visited us last week.

Making Technology Accessible for EveryoneLet’s start with CPS teachers like James Taylor. First, you just have to love his name! But more importantly, James spends his time focusing on all the students with disabilities at CPS, and one small part of his day is putting together field trips for the students to businesses, so the students can experience the corporate world. Originally, James thought we would have 2 or 3 students sign up. We had 27! Everyone arrived early and we began our day with a wonderful presentation by Paul Edlund, Chief Technology Officer – Microsoft Midwest, about the future of technology. It was a highly interactive session, with lots of questions and student engagement.

We then had a full tour of the Microsoft Technology & Innovation Center, led by Beth Malloy, Director, Microsoft Technology Center – Chicago and Bradley Trovillion, Technical Solutions Architect. The students examined our Internet of Things Fishtank, played Xbox and used the Kinect to understand motion capture of movement and worked real time on our PPI.

Making Technology Accessible for Everyone

After lunch, we had a terrific presentation via Skype by Patrick Maher, Director of Civic Engagement, SPR Consulting. SPR is a Microsoft Partner and Pat suffered a spinal cord injury during college. In addition to his very motivational personal story, Pat emphasized the great opportunities for careers in technology for people with disabilities. Pat runs a meet up group called ITKAN, which supports people with disabilities in the Technology field.

Making Technology Accessible for Everyone

He also showed an amazing video which I highly recommend:

The entire staff of the Microsoft Technology and Innovation Center were honored to support these wonderful teachers and students at CPS. It’s most rewarding when we received the following thank you note from James, which told us that our message hit home and that we have helped to fill the pipeline of students who are interested in careers in technology:

“Pat and Shelley I want to say thank for participating and hosting the students.  Overall the students enjoyed the experience and I’m hoping to get a few involved with ITKAN in the next few months.  A majority of the students are gearing up to graduate and after this job shadow day, some are being swayed over to the computer field.  Pat I want to say thank again for sharing your experience with us, and giving motivation to the students.  And again, thank you and the rest of the team for being great hosts.  Hopefully we can do this again later this year or next year and open some doors for upcoming graduates.  I will share these videos and get some feedback, hopefully this will generate some questions for opportunities and get the students more involved with the IT world.” 

To learn more about Microsoft’s investment in accessibility, see how our products have built-in accessibility features.

Advocate Explains Basics of the ABLE Act

Guest blogger Melissa theSeed is a mother, wife, advocate & blogger with two children with medical needs. She advocates for social and civil justice for people with disabilities through her blog and online communities. She is co-founder of a NY-based nonprofit called “Forward RISE” that is committed to bettering communities and improving disability awareness through education and social experiences.

You can contact her via email at info@forwardrise.org or call Forward RISE at 631-291-9328. Check out her blog at theseed9811.blogspot.com or her website at Forwardrise.org. And, she is on Facebook. Feel free to contact her with any comments or questions.

ABLE ActThe Achieving a Better Life Experience Act (ABLE) was finally signed into law by the President on December 19, 2014. It is now up to each State to implement the new law which would allow for tax-free savings accounts to be built for a population that has historically been forced to live in poverty. Up until now, in order to be eligible for SSI and Medicaid, a person could not have more than $2,000 in cash and property ($3,000 for couples) or make more than $700 monthly (!) in order to be eligible for Medicaid or SSI.

This means they can’t save money for things that Medicaid and SSI don’t cover like education, housing, a job coach or transportation. While the rest of society is encouraged to save for emergencies, unforeseen expenses and rainy days, people with disabilities – who have naturally higher expenses and higher medical needs – were forced to scrape pennies and do without due to archaic laws and discriminatory notions held by society in general.

What Is the ABLE Act?

 

Once enacted by the States, this bi-partisan piece of legislation will give people with disabilities and their families freedoms and security never before experienced. It amends the IRS code of 1986 to allow savings accounts to be set up for individuals with disabilities much like the college tuition accounts known as “529 accounts” that have been around since 1996. The Treasury Department is currently writing all of the regulations. There will then be a period of time where public comments on the proposed rules will be allowed. Before the end of 2015, every State is expected to establish and operate an ABLE program.

  • Allows savings accounts to be set up for individuals with disabilities
  • Recipients do not have to count funds as income
  • Recipients do not have to pay taxes on funds if they are used for disability-related expenses

How does it work?

In a nutshell, once enacted by a State, an ABLE savings account can be opened up by an individual with a disability or by someone else on their behalf. Up to $14,000 may be deposited yearly untaxed, with that amount to be increased as inflation rises. If an account surpasses $100,000, the owner of the account will no longer be eligible for SSI but would not be in danger of losing Medicaid. When a person dies, Medicaid will be reimbursed first from the account before it is dispersed to the person’s estate.

  • Can be opened up by an individual with a disability or by someone else on their behalf
  • Up to $14,000 may be deposited yearly
  • Up to $100,000 can be accrued without affecting SSI

Who is eligible?

Individuals with a disability wanting to establish an ABLE account must have acquired their disability before turning 26. If an individual is over the age of 26 but their disability onset was prior to turning 26, they will be still be able to establish an ABLE account. Individuals who meet this requirement and receive SSI or SSDI are automatically eligible to establish an account. Individuals who do not receive these services may still be eligible if they meet SSI criteria regarding who is eligible. The Treasury Department will further explain standards of proof in the regulations they are currently completing.

  • Onset of disability must have occurred prior to turning 26 years of age
  • Must meet SSI eligibility criteria

What can the funds be used for?

While the details are still being finalized, it is anticipated that the funds will be allowed to cover any disability-related expenses, including:

  • Education
  • Housing
  • Transportation
  • Employment training and support
  • Assistive technology and personal support services
  • Health, prevention and wellness
  • Financial management and administrative services
  • Legal fees
  • Funeral and burial expenses

This is a great step forward in the right direction for this community. Let’s hope the regulations are completed sooner rather than later and that the States take quick action in adopting them so that individuals and families can begin saving for a better life! Equality for All, ALWAYS!

Because of My Disability, Not in Spite of It

Lorraine Cannistra is an author, speaker and wheelchair ballroom dancer who writes mostly about her personal experience with disability.The guest post here is an intimate look at her life, recalling the first moment she truly understood what she could accomplish when she focuses on what she can do.You can read more about her journey on her blog atwww.healthonwheels.wordpress.com or contact her at lorrainecannistra.com.  

lorraine_cannistra and Leah

 

Leah, my black Lab service dog, lies at my feet. She has just had breakfast and done her thing outside. After we cuddle for a bit, she sighs deeply and goes back to sleep.  We have been together long enough for me to know the drill.  She will wake every ten minutes or so to make sure all is well.  If she senses something wrong, she will take things as they come, do her best to fix it and then go back to sleep. Sometimes I tell myself I need to take “laid back” lessons from my dog.

******************************************************************

I took a deep breath and tried to wrap my mind around what I had just heard, in a moment that was both surreal and wonderful.  “Could you say that again?” I asked my coach through the phone.  I wanted to be sure I wasn’t just a young teenager who was dreaming.

“I just got word Lorraine,” he repeated. “You are one of 37 athletes that have been chosen from across the country to compete in the International Games for the Disabled. (What is now the Paralymics) You did it! Let it soak in for a minute.”

It was hard to describe what I was feeling, an overwhelming mixture of pride, excitement, relief.  But in that moment something else happened as well. My mindset shifted.  I understood, deep in my soul, that I had accomplished something huge because of my disability, not in spite of it. I knew that none of this would be happening if I had been born with the ability to break dance.

I had joined a sports team specifically for people with cerebral palsy almost four years previously. Being an awkward and painfully shy freshman at the time, I was used to being excluded.  Being part of that team meant that I met people with disabilities who were older than I was for the first time. Not only was I part of the group but they helped me to see a positive future.

Over time I excelled in sports and with the training of the head football coach at my high school, I was challenging international records in track. At every practice I pushed myself hard, being motivated by all the times in the past when I was expected to be content to sit on the sidelines and watch. Every lap I completed took away a bit of the sting of not being able to play tag or hopscotch. I knew I couldn’t walk. But I could race, and I was good at it. I started to concentrate on what I could do.

A few months later I went to college.  Coming from a big city, it was important to me to find a very small school that was completely accessible. In the days prior to the passage of the Americans with Disabilities Act, finding a school that met that criteria was like searching for the wizard on the yellow brick road.  But in 1987 I started attending Emporia State University in Kansas, where I eventually earned a Bachelor’s degree in English with a minor in Creative Writing, as well as a Master’s degree in Rehabilitation Counseling.

Lorraine CannistraBrandon and Lorraine Dancing

It was in college that I found that writing helped me make sense out of the world. If something made me angry or upset, writing about it could get the negative emotion out of me. It was also in college that I fell in love with advocacy.  I found that when I use my voice to speak about programs that enhance the lives of people with disabilities, I feel understood in a profoundly positive way. Over the years I have provided testimony to senators, representatives and the governor. When those programs become reality, the high I feel always outweighs my desire to climb a tree.

In 2007 I had the honor of being crowned Ms. Wheelchair Kansas.  It was during that year that I started speaking to various groups about disability awareness and empowerment.  In doing so I discovered what I was born to do.

I have to be honest and say I have my share of difficult days, when I wish for a world where everyone is treated with the respect they deserve.  But when my reality is different, I try to do what my dog does.  When I sense something wrong I take things as they come, do my best to fix it and then go back to sleep.

 

 

 

 

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!

Looking Back: UCP’s Top Ten of 2014

UCP has shared many stories about people and their famililes living with disabilities this year, but these 10 deserve revisiting for their ability to capture our emotions from empathy and inspiration to innovation or even outrage. Here are the Voices of UCP blog’s top 5 stories of 2014:

#10. Hey Candidates, People with Disabilities Can Help Elect You…Or Not

#9. Enabled by Design-athon from an OT’s Perspective

#8. First Comes Love, Then Comes Marriage

#7. Ms. Wheelchair Michigan Shares Journey to Parenthood

#6. Who Cares About Ken Jennings? A Teachable Moment

#5. UCP Chats with the U.S. National Paralympic Soccer Team

#4. Austin’s Journey

#3. #HalloweenwithoutLimits Crowns Most Creative Costume

#2. Teen Gets a Yes! to Prom

#1. From an Orphanage in Africa to a Life without Limits 

 

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Engage Series Kicks off with Financial Education and Networking!

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IMG_3188On September 24, 2014, United Cerebral Palsy (UCP) and Student Veterans of America (SVA) kicked off their new educational and networking series, called “Engage: A Diverse Event Series,” with an evening filled with food, drinks, networking and financial education at the National Youth Transitions Center. As will other events in this series, this event welcomed youth and young adults with disabilities and young veterans with and without disabilities throughout the Washington, D.C. metro area. It featured a specific subject of focus (financial education) and addressed key social and educational components for the attendees.

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As The HSC Foundation’s signature program, the National Youth Transitions Initiative assists youth and young veterans with disabilities in creating and living a self-directed path to adulthood and employment. Through this initiative, the Foundation developed the National Youth Transitions Center and the Youth Transitions Collaborative, which serve as sponsors for the event series. “We hope that ‘Engage: A Diverse Event Series’ will not only provide useful information for youth and young veterans with disabilities, but also allow a welcoming atmosphere to connect and network with each other,” said Ryan Easterly, manager of the Foundation’s National Youth Transitions Initiative. “The financial-education event was a great start and we look forward to watching the series grow over the next few months.”

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Attendees were given various financial information and statistics and participated in interactive activities, led by representatives from TD Bank. “We were pleased to participate in the kickoff event of UCP and SVA’s Engage series,” said Mary Ann Francois, Vice President and Store Manager of TD Bank’s 20th & K Street location in Northwest Washington, DC. “So many of us work hard to make the most of our funds and resources and plan for the future. This, of course, is no different for young veterans and individuals with disabilities and we were all very excited to be a part of such an interactive and fun evening.”

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“At Student Veterans of America, we know how challenging the transition can be from the military to civilian life,” said John Kamin, Program Manager at SVA. “Through the Engage series, we’re showing our veterans that they are not alone in the journey. We are excited to be a part of it, and believe it brings many educational and networking benefits to those we serve, as well as offer the opportunity to connect with others who may share similar experiences.”

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The series blends well with UCP’s upcoming launch of its My Life Without Limits program, which has a large focus on the transitions in life for individuals with disabilities. “UCP understands the importance of supporting people with disabilities through transitions in life,” said O’Ryan Case, UCP’s Director of Membership and Public Education. “As will our My Life Without Limits program, the Engage series helps us to support these individuals by bringing information to everyone and helping to connect them with others who may share the same or similar interests and challenges. We thank TD Bank for helping us launch this series, as well as the National Youth Transitions Center and Youth Transitions Collaborative for supporting this project. It has been great working with SVA and we look forward to watching our series grow.”

 

Check out the video below to learn more about the event!

 

 

UCP and SVA look forward to the next event in the series, an “Adaptive Sports Networking Reception,” which will be held on October 21, 2014 from 6:00 – 8:00PM EST at the National Youth Transitions Center (2013 H Street NW, Washington, DC 20006) and feature representatives from Disabled Sports USA who will share their stories, answer questions and introduce the world of adaptive sports to attendees. Like all of the events in the series, it is free to attend and food and drinks will be provided. Please be sure to REGISTER HERE. Learn more about the series HERE!

If you have any questions, contact O’Ryan Case at (800) 872-5827 or ocase@ucp.org.

Enabled by Design-athon Happening This Fall

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United Cerebral Palsy is bringing you another great event this fall! Sign up now to attend Enabled by Design-athon: D.C. Edition November 5-7. UCP’s Life Labs initiative is hosting this dynamic event to encourage innovation by designers, inventors, hackers and makers for the benefit of people with disabilities.

Spread the word to those you know who have the big ideas and perspective that have made three previous events in London, D.C. and, recently, Sydney, Australia, such a success. We’re looking to bring together teams of dreamers, including people with disabilities, to design and prototype accessible products which provide innovative solutions for the everyday challenges faced by people with various disabilities.

We’ll kick things off Wednesday evening, November 5 at the Great Hall at the Martin Luther King Memorial Library, where the public is invited to network and hear from keynote speaker Adrienne Biddings, Policy Counsel for Google. Adrienne will bring her expertise in making communications media accessible, diverse and responsive to the needs of all segments of the community. Other speakers include Brett Heising of www.brettapproved.com and Maria Town, the influential blogger who created http://cpshoes.tumblr.com/ and representatives from iStrategy Labs. Also participating is the Corcoran/GWU School of Arts + Design.

Thursday, November 7, begins the two-day design workshop at Google’s D.C. offices where team will compete to come up with the best design. A $25 registration fee is required for the workshop, however, the Wednesday evening event is free and you do not have to participate in the full workshop to attend (registration is required and space is limited)

“This is an opportunity for designers, technologists, engineers, students, caregivers and people with disabilities to collaborate and learn from each other how to use human-centered universal design concepts to solve every day challenges,” said Marc Irlandez, Director of Information, Technology and Life Labs at UCP. “We believe good design goes a long way towards helping people live as independently as possible by making day-to-day tasks just a little easier.”

The event is sponsored by Google, Sprint Relay, PCS Engineering, Sugru and the CEA Foundation.

Registration opens today! Get more information at http://ucpdesignathon.org/.

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