Sally Wants a Sponge House

Sally, a six-year-old child from the UK who has cerebral palsy inspired this year’s World CP Day project by saying she wants a “sponge house” to “stop me banging into things.”

The World CP Day project seeks ideas from people with disabilities like Sally, their families and supporters and then challenges designers and innovators to turn one of those ideas into reality in a global competition for thousands of dollars in prizes.

Like Sally, many children and adults with CP can be prone to knocks, bumps and falls because of unsteady movements. Every aspect of living spaces can be a physical challenge for people with CP. Furniture, household fittings and fixtures, appliances, even walls and floors can be hazardous.

Take the Challenge:

Design a living space that that would minimize the risk of injury from knocks, bumps and falls for people with cerebral palsy. The design may incorporate one or more of these elements: physical layout, furniture, furnishings, fixtures, fittings, appliances, surfaces – e.g. walls, floors, and/or lighting.

Who Can Enter?

The competition is open to everyone, including students and industry practitioners in the fields of interior design, architecture, industrial design, furniture design, etc. An individual, group, university or company can submit an entry.

Applications are accepted until Friday June 19, 2015. There is no entry fee.

Prizes:

Institution prize (e.g. university team or company): $5,000

Individual prize:

  • Winner – one $3,000 prize
  • Highly Commended – two prizes of $1,000

In addition to the prizes, winners will be awarded certificates, acknowledged on the World Cerebral Palsy Day website and social media channels, and promoted to design media.

To Enter:

Register your expression of interest on the World CP Day website. We will send you the full competition guidelines and keep you posted throughout the competition.

www.worldcpday.org

Proudly supported by The Allergan Foundation

WCPD15_Logo_World_Hi-Res

 

Share Your Insights on Families, Disabilities and Post-Secondary Success

The U.S. Department of Labor’s Office of Disability Employment is launching their next Connecting Families Online Dialogue starting Monday, January 26 and running through Friday, February 6, 2015. This online dialogue on Families, Disabilities and Post-Secondary Success is for the families of students/young adults with disabilities who are currently or were recently enrolled in a post-secondary education program  (e.g., certificate, apprenticeship, community college, college).

To participate, family members can register here and post their comments beginning Monday morning at 8 a.m. EST. Once registered families will be prompted regarding when subject-specific experts will be providing feedback on the topics of

Don’t miss your chance to join the conversation: The U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) wants your input through this “virtual town hall” where you’ll be able to share your ideas and insights on ways that post-secondary institutions and other providers can better assist you in supporting your student’s educational and employment success. Register now and start chiming in on Monday morning!

 

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!

Design Innovation Program Wins Grant from Mitsubishi Electric America Foundation

United Cerebral Palsy’s Life Labs to Take Universal Design Thinking to Apple’s iTunes U

Washington, D.C. (January 20, 2015) – United Cerebral Palsy’s (UCP) Life Labs initiative was  awarded a significant grant from Mitsubishi Electric America Foundation. The grant will help fund a unique new approach to fostering innovation in design and technology for people with and without disabilities.

The project embraces the principles of Universal Design, which strives to create products and environments that are inherently usable and accessible to all people, including people with disabilities. It will deliver an open-source event toolkit and a full curriculum built around UCP Life Labs “maker fair” event concept and distributed through Apple’s iTunes U. UCP is one of less than 100 nonprofit partners – and the only disability organization – curated by iTunes U for educational materials offered to more than 250,000 students.

UCP’s Life Labs held a small-scale version of the event in Washington, D.C. in each of the past two years, bringing together people with disabilities, inventors, hackers and other innovators with and without disabilities. In a friendly competition, attendees developed ideas for revolutionary products and services using a Universal Design approach. With input from mentors with disabilities, team members collaborated to create workable solutions for everyday problems that they then pitched to judges in an atmosphere similar to the hit TV show “Shark Tank.”

“It’s time to take this to the next level,” said Marc Irlandez, director of UCP’s Life Labs. “We were looking for a way to bring the event to a greater number of people in more locations. Mitsubishi Electric America Foundation saw the possibilities and iTunes U was the perfect platform to help make sure that anyone who wants to learn how to make the world a better place through Universal Design can do so.”

“By providing opportunities for people with and without disabilities to work together with industry leaders in a creative way to design accessible consumer products, this project not only exposes students to careers in science and technology, but it also helps raise the awareness of the capabilities of people with disabilities,” said Kevin R. Webb, senior director, Mitsubishi Electric America Foundation. “Ultimately, it will help empower youth with disabilities to make changes for the better in society, which is the mission of our Foundation, and why Mitsubishi Electric is proud to provide support to help replicate and expand this innovative project.”

The initial goal of the materials to be made available via iTunes U is to introduce college-age students to the concept of Universal Design and inspire innovation. Eventually, other materials will be developed as part of a school’s STEM lessons that K-12 learners can adopt.

“It’s significant that a large national nonprofit such as UCP is able to work with a recognized brand as iTunes and be supported by such a well-known foundation as Mitsubishi Electric America Foundation,” said Stephen Bennett, president and CEO of UCP. “With this level of credibility and this unique learning platform, this project is bound to bridge the gap between designers and engineers and people with disabilities, to the collective benefit of us all.”

# # #

About United Cerebral Palsy
United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a broad range of disabilities and their families. Together with nearly 100 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, visit www.ucp.org.

About Mitsubishi Electric America Foundation

The Mitsubishi Electric America Foundation, based in the Washington, DC area, was established in 1991 by Mitsubishi Electric Corporation and the Mitsubishi Electric U.S. companies, which produce, sell and distribute a wide range of consumer, industrial, commercial and professional electronics products. The Foundation has contributed more than $13 million to organizations that are empowering young people with disabilities to lead more inclusive and productive lives.

To learn more, visit the Mitsubishi Electric America Foundation’s website at www.MEAF.org.

Join Us for an International Day of Acceptance

United Cerebral Palsy and #MyLifeWithoutLimits has proudly pledged our support of 3E Love’s annual International Day of Acceptance. Please consider joining us in the movement for acceptance by wearing your heart on your sleeves and sharing your #DayofAcceptance story this Tuesday! January 20 is dedicated to the social acceptance of disability and to honor the late Annie Hopkins, founder of 3E Love and creator of the International Symbol of Acceptance pictured below. Learn how you can get involved at www.dayofacceptance.com. What does acceptance mean to you? Share your #DayofAcceptance story and photos here. And, use the #DayofAcceptance or #MyLifeWithoutLimits hashtags and tag @UCPNational to share on social media. Here are some stories that have already come in:

UCP-DayOfAcceptance 2015
At UCP, we focus on a single goal: ensuring people with disabilities and their families have the opportunities we all deserve. We want to remove barriers that might stand in the way of seizing those opportunities. And, one of the biggest barriers can be simple acceptance. Most people don’t set out to deny opportunities to the rest of us. It happens because most people are concerned with their own challenges and don’t stop to think of others. People with disabilities deserve to enjoy the same opportunities as their neighbors. We are all valued members of our communities. We all want the same things in life, some of us just have different challenges.” – Stephen Bennett, UCP President & CEO

IDOA_Lauren

 

I imagine a world where people with disabilities are empowered to be fully functioning members of a society where we, people with disabilities, are accepted for who we are and the stigma of difference no longer exists.  A world where people can look past what makes us physically different and see what all we are capable of doing. #DayofAcceptance” - Lauren

ZIDOA Zachach and I met at MDA camp, became friends, and then more. We celebrate acceptance because it allowed us to find each other. We’re looking forward to our wedding in September where we can celebrate our love with our wonderful friends and family who support us! #DayOfAcceptance – Dawn
IDOA Whitley
My name is Whitley Hodges and I was injured in a car crash in 2009. I spent 3 months in the hospital with broken ribs and a crushed spinal cord. I now live with a spinal cord injury and use a wheelchair for daily mobility. My life has changed dramatically since my accident. 
Knowing the life I had before and living the life I live now makes me really appreciate the little things in life. Everyday is worth living, as hard as it may be it is important to accept yourself and others for the people they are. No matter what other human beings look like or despite any type of stigma society, people or the media have placed on people with disabilities, we all have the same need in life to be wanted and accepted. Acceptance is important to me, because I am able and discriminating against others is wrong.” – Whitley

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.

 

 

 

 

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.

I Don’t Need a Cure

Daman Wandke is an accessibility analyst and disability advocate in the Washington, DC area. 

Daman Wandke

Daman Wandke

My name is Daman Wandke and I work as a User Interface Analyst at SSB BART Group, an information technology (IT) accessibility consulting company.  In this role, I provide consulting to large corporations on how to make their IT accessible.  I am also a national disability advocate, currently serving as a Board Member of PolicyWorks, where we advocate to improve public policy that would increase employment access for people with disabilities.  Previously, I served as the Student Advisory Council Chair of the US Business Leadership Network.  My advocacy efforts focus on accessible information technology and increasing disability employment.  I earned my Master of Business Administration in an accelerated one-year program. My resume includes accessibility work at many federal agencies: NOAA, USDA, NASA and FHFA. Oh…and I happen to have Cerebral Palsy (CP).

Having CP taught me how to accomplish tasks differently.  I use an electric scooter and forearm crutches for mobility.  I lack in the fine motor department, so I need help with some tasks. My speech is moderately affected by CP, so sometimes I have to get creative in verbal communication if people do not know me well. Having a disability has taught me a lot in life that has contributed to my successes.  I am a good problem solver and creative.  What do you do when you can’t use keys? Install a keyless entry lock on your apartment’s door that works with a remote, just like a car. My disability also taught me about management and teamwork. I have been hiring and managing personal care attendants since I entered college.

I recently saw a sweatshirt advertised on Facebook page dedicated to CP awareness that said: “Someone I know needs a cure.” I found that sentiment to be somewhat offensive. I am a successful 25 year old that would not be where I am today without CP. My disability is my “normal.”  Where would I be today without CP? I wouldn’t be consulting with large companies on how they can improve their IT accessibility.I wouldn’t be advocating side-by-side with national leaders for the disability community.  Yes, my body works differently but it’s not broken, nor sick, nor does it need to be cured.

Instead of a cure, let’s advocate for equality. Not only do I not want a cure, I do not want to be “baby talked” because my speech sounds a little different. I do not want to be turned away from an event because the only entrance has stairs. I do not want to have to pick between working full-time and having access to the personal care attendants. Cerebral Palsy doesn’t worsen over one’s lifetime like a disease. Let’s focus on creating a society of equal opportunity for all people with disabilities, including people with Cerebral Palsy, rather than searching for some kind of “cure.”

 

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 

 

Israel2From an Orphanage in Africa to a Life Without Limits