UCP Board Chair to Run National Human Services Assembly

Gloria Johnson-CusackUCP is thrilled to announce that the chair of our national Board of Trustees, Gloria Johnson-Cusack has been selected to head the National Human Services Assembly as its new president and CEO beginning in April. The Assembly is a Washington, D.C.-based organization comprised of nearly 90 national nonprofits and is focused on shaping public dialogue and building capacity for the human services sector. Gloria has served on the UCP Board for several years, becoming Chair in October, 2014. We are proud to have a leader of her caliber helping guide UCP. Read more below from today’s press release from the National Human Services Assembly. 

 

National Human Services Assembly Names Johnson-Cusack as New President and CEO

WASHINGTON, March 2, 2015—The National Human Services Assembly, a D.C. based organization composed of nearly 90 national nonprofits, announced the selection of Gloria Johnson-Cusack as president and CEO effective April 6, 2015.

“Gloria’s stellar record in leadership positions across the nonprofit, for-profit, and governmental sectors gives us complete confidence that she is the right person to continue to grow the National Assembly’s ability to deliver, both for its members and for society at large,” said Cindy Lewin, executive vice president and general counsel at AARP, and part of the search committee at the Assembly.

Brian Gallagher, president and CEO of United Way Worldwide and standing vice chair of Leadership 18 echoed Lewin’s sentiment, “Gloria is well-suited and well-prepared to lead the Assembly. She is all about collaboration, knowledge sharing and innovation within the nonprofit community.” Gallagher continued, “I’m certain she will draw on her years of experience working with our CEO cohort. Together at Leadership 18, they have tackled the toughest community and leadership challenges of the day.”

Johnson-Cusack brings more than 20 years of expertise informed by leadership positions in the private sector, charitable sector, U.S. Congress, federal and municipal government, national presidential campaigns and the White House. Before joining the Assembly, she was executive director of Leadership 18, which is an alliance of CEOs responsible for leading the oldest and largest human services nonprofits. Almost all Leadership 18 organizations are members of the Assembly.

“I have proud working-class roots and feel a deep, personal sense of responsibility to create more opportunities for more people. The status quo is not good enough,” explained Johnson-Cusack.

“At its heart, that’s what the Assembly is about and it is my honor to champion change in partnership with these passionate, innovative leaders.” Johnson-Cusack is national chairman of the board of trustees for United Cerebral Palsy. She served as senior vice president at GMMB, a D.C. based strategic communications and advertising firm where she advanced social and health causes on behalf of key nonprofit organizations, foundations and national associations—from improving supports for low-income students completing college to advancing diversity in the practice of law and medicine to addressing obesity nationwide.

In the public affairs arena, Johnson-Cusack served as director of the Office of Congressional Relations at the Peace Corps, special assistant to the President in the White House Office of National Service, and director of constituent relations at the Corporation for National Service. She was chief of staff for the D.C. Office of the Inspector General and was policy advisor to Congresswoman Eleanor Holmes Norton and Senator Albert Gore, Jr.

Johnson-Cusack holds a bachelor’s degree from Columbia College, Columbia University and a master’s degree in public administration from the Key Management Program at American University. She is a founder of the Eli J. Segal Citizen Leadership program at Brandeis University.

“I’ve been impressed with Gloria’s willingness and ability to forge coalitions among very diverse partners nation-wide,” stated Adam Meyerson, president of the Philanthropy Roundtable. “She demonstrated this ability in our shared advocacy to protect charitable tax incentives for the last few years. She listens and looks for shared interests and goals.” Meyerson added, “The philanthropic community needs more of that.”

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About the National Human Services Assembly The National Human Services Assembly, a D.C. based organization comprised of nearly 90 national nonprofits is focused on shaping public dialogue and building capacity for the human services sector. Assembly members, and their local service networks, collectively touch, or are touched by, nearly every household in America—as consumers, donors or volunteers. They comprise a $62 billion sector that employs approximately 1.2 million workers operating from 100,000 locations. The Assembly facilitates a robust learning community among nonprofit professionals and provides group purchasing services to more than 3200 organizations.

From Pain To Passion: One Parent’s Roller Coaster Journey

IMG_143881634762405Stefanie Boggs-Johnson is owner of Stefanie Lynn Creations and published author of “I See You, Little Naomi.” In addition to being a parent and mobile cosmetologist, she is a crew supervisor for adults with special needs, working as the on-site job coach at a local grocery store. She also volunteers for Djanai’s Angels Special Needs Prom in North Hollywood.  She is currently training to facilitate beauty classes for American Cancer Society’s “Look Good, Feel Better” program. She and her family live in Concord, California.

 

 

March is National Cerebral Palsy Awareness month. For many families like mine, there is cerebral palsy (CP) awareness every hour and day.  As a mother of an in utero stroke survivor diagnosed with right hemiparesis CP, this “mama bear” ended up on a grief roller coaster ride that included the dark lows of despair and the heights of determination.

The story I share with you today is a result of the whirlwind of emotions, adjustments and new endeavors that swept up my family upon my daughter’s birth. And it is about the choices I made, which resulted in a new perception and passion for life.

I had no issues during my pregnancy with my daughter Naomi, who is now six years old. No one saw any signs of medical trauma until the day I went to the hospital to check on the baby in my womb, who was normally very active but had stopped moving. After an emergency c-section on March 18, 2009, Naomi immediately suffered from multiple seizures per hour due to a stroke at seven months gestation. She was not expected to survive.IMG_225861807037805

However, she did survive and is living proof that miracles do happen. She defied a grim diagnosis, eventually achieving each developmental milestone, and causing a ripple effect of new priorities, joy and choices in many people’s lives– including mine.

I became a parent consumed with therapy and medical appointments, pharmacy and emergency room visits and tears.  As overwhelming as it all was for my entire family, I knew I had to maintain my sanity. The pain and despair that overwhelmed me at times could not stay! I had to do something! I had to turn my daughter’s trial into a testimony that would help others jump off their own personal roller coasters.

So, I took action to help other special needs families. I began by making hair accessories and other crafts. And, I returned to my lifelong passion of writing children’s books – about my daughter, of course. Then, in 2013, (at the age of 43!) I went to beauty school to become a mobile cosmetologist, jumping onto an entirely new roller coaster. As a mobile cosmetologist, I visit the homes of people with disabilities who may have difficulty going to a salon for a hair appointment or other grooming needs.

I’m now on an extraordinary path filled with priceless rewards, such as the multiple visits to the home of a tenderhearted teenage boy with autism, gaining his trust and eventually getting his permission to cut his hair. The round of high-fives with his parents was pure joy. This task, to which most others don’t give a second thought, was a real dilemma for this family. To be able to offer a service that relieved their burden made it all worth it!

As with anyone’s life path, mine has its bumps and bruises. But these are offset by meeting wonderful people, seeing the good that still exists in this world and knowing that I somehow added to that good. Sometimes, the circumstances of our lives aren’t what we originally ordered but they can turn into so many miracles. My hope is that all who read this will see the miracles in their lives, no matter what the day may bring. May the pain of letting go of old dreams turn into a passion for new dreams to come true!

 

UCP of MetroBoston Battles Snow

Even with 8 ½ feet (not inches – feet) of snow on the ground, UCP of MetroBoston has been able to keep most programs and services operating smoothly.  Primary concerns were insuring staff could get to and from work and consumers safe and sound.

CEO Todd Kates said “Staff has done an incredible job insuring the well-being of the individuals we support.”

Check out these amazing images from one of UCP MetroBoston’s apartment complexes. This is after staff shoveled the roofs to keep them from collapsing under the weight of the snow.

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Young Inventor Focuses on People with Disabilities

Srijay KatsuriAt 14 years old, Srijay Kasturi was the youngest person ever to compete in the Enabled by Design-athon innovation challenge held last November by UCP’s Life Labs program. Along with his mother Sudhita, Srijay was on the winning team which came up with an idea for an app for people with autism. UCP was thrilled to discover that Sirjay was an inventor with another concept, called STRIDE, already in progress. Although he has no personal connection to disability, his creations have centered on the concept of helping people with disabilities better navigate, and as a result, participate in the world. In this interview, Srijay describes his motivations and the evolution of STRIDE for people with visual impairment.

 

UCP: When did you first realize you had an interest in innovating with technology?
SRIJAY:
I have no idea when I realized I had an interest in innovating. My parents say that I have been thinking of creative solutions for day-to-day problems from a young age. One of my first innovations was around the age of 12, so about 2 years ago, and I’ve just been going since then!

UCP: What was your inspiration for STRIDE? Do you know someone with vision impairment?
SRIJAY:
No, unfortunately (or fortunately!) I don’t know anyone with vision impairment. STRIDE is really the evolution of one of my old(er) inventions, the Camera Centering Tripod Mount (CCTM). Once I finished my proof of concept for the CCTM, I submitted it to the Discovery Education 3M Young Scientist Challenge where I, and the CCTM, were selected to be finalists in the competition. Once selected, I worked with a mentor from 3M, Dr. James Jonza, to develop the CCTM further. However, once I started working, my mentor and I discussed if there was a way for the CCTM to help more people… and from there, STRIDE (stepwithstride.com) was born. STRIDE eventually went on to win 3rd place in the competition, and well, the rest is history.

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UCP: Tell us how it came to be and how you envision it working for people.

SRIJAY: I envision people using STRIDE in their everyday lives, 24/7. They put it on when they put on their shoes, and walk around all day using it. STRIDE alerts the user to any objects in their path. The closer the object the stronger the alert. One of the advantages of STRIDE is that if the user changes shoes they can move the device from one pair of shoes to another. STRIDE involved a lot of hard work, and a bunch of trial and error. They say to do anything, it takes 1% inspiration, and 99% perspiration! This is definitely the case for STRIDE

UCP: Is this your first invention?

SRIJAY: Nope! STRIDE is based on an older invention of mine and shares a lot of the same ideas with said older invention. Since childhood my dad has encouraged me to think creatively and outside the box which has led to innovation and inventions.

UCP: What other areas of design and technology interest you? 

SRIJAY: Hmm… that’s a tough one. I love programming software, to the point that I used programming to finish an English class project – an innovative approach to English class! I love web-design, and I have created various dynamic websites using the Flask framework for the backend, and the Bootstrap framework for the frontend.

UCP: How did you hear about the November 2014 Enabled by Design-athon event?

SRIJAY:In March of 2014, there was a Mini Makers Faire, in Northern Virginia, near where I live. I was one of the Young Makers at the Faire and Mr. Patrick Timony from the D.C. Public Library stopped by my table to learn about STRIDE. Mr. Timony is their Adaptive Technology Librarian. He told me about the Design-athon and encouraged me to register.

2014 DesignathonUCP: What motivated you to want to attend?
SRIJAY:
When I realized that the aim of the Design-athon was to help people with disabilities, I realized that it would be a great event to go to, not only to help me understand what I needed to do with regards to STRIDE, but to meet other like-minded people, including the great people here at UCP! The event gave me a better understanding of the challenges faced by people who have disabilities and how many things we take for granted.

UCP: Tell us about your team, idea and experience at the event.
SRIJAY:
My team, called Stars at War, consisted of 8 people. We all came from various viewpoints, and different perspectives, so we each brought something unique to the table. Our idea was a product called Simplyfi. We learned that people with autism sometimes take take idioms literally. Simplyfi helps translate hard-to-understand idioms into simpler easy-to-understand straightforward English.

For example, if you say that the Design-athon was “a piece of cake”, a person with autism may think quite literally that the event was a piece of cake, while we’d understand that by a “piece of cake,” you really meant it was very easy. To help alleviate this problem, we built an app that defines these idioms, so that they can better understand the figurative language.

UCP: Are you interested in developing this idea further – possibly bringing it to market?

SRIJAY:Yes I am! There still is a lot of work that needs to be done for the programming of Simplyfi. However, I have been so busy developing STRIDE that I really have not had much time to focus on Simplyfi and finish programming it – but I do intend on finishing it sometime in the near future!

There is also a competition called DECA. For this event we have to write a marketing plan for a product and my partner and I decided to write a plan for Simplyfi. Here’s to hoping we move on to ICDC (International Career Development Conference)!

UCP: What is the status of your current project?
SRIJAY:
I decided to revamp STRIDE so it would better fit the needs and wants of the visually impaired. I would like it to be Bluetooth-enabled so access to building maps etc. via an app are available to users. For STRIDE to be more sleek, I am working on a hardware redesign using smaller components. I’m looking for advice in the fields of case-design and software to make the device more accurate and usable. I would also like to consult with a patent attorney and look into funding sources so I can take STRIDE to production. My goal is to have STRIDE ready for market by the end of the year. This of course, will mean getting some help in the area of marketing, if anyone wants to collaborate with me.

UCP: Do you collaborate with anyone on your ideas?
SRIJAY:
Yes! There are two amazing Facebook groups that I just love. The first is Hackathon Hackers (HH), a group of over 1000 people dedicated to helping others write programs and compete at hackathons. Also, I am a part of a Facebook group called High School Hackers (HSH). HSH was created for the sole purpose of getting high schoolers interested in programming, and attending hackathons. Aside from Facebook groups I am also heavily involved with a makers space in Reston called Nova Labs. Nova Labs is a great place full of people who are extremely knowledgeable about all kinds of things. In fact, I owe most of the success of STRIDE to Nova Labs, since I have learned so much from the mentors there!

UCP: Tell us more about your thoughts on open-source and why you would want to keep a part of this invention proprietary?
SRIJAY:
I believe that open-source is the future. Open-source projects basically allow for improved sharing of ideas, and allows for these ideas to help the most number of people. I decided to release enough of STRIDE for anyone to create it, but I am keeping enough of STRIDE proprietary so that I can still sell a unique product and have control over it’s pricing and future development.

UCP: What are your plans for the immediate future? Your career?
SRIJAY:
I am a freshman in highschool so a lot of my efforts are dedicated towards learning and doing well in school. I am also studying Sanskrit, an Indian language, learning to play the Mridangam, an Indian classical instrument, and I am a 2nd degree Black Belt in Tae Kwon Do. In the immediate future I would love to take STRIDE to market. Making Simplyfi available as an easy to use Google chrome extension is another goal. I also want to pursue a career in filmmaking, so we’ll see how that goes…

Replacing Pity with Power: A Former Poster Child Speaks Out

Lorraine C_ChildhoodLorraine Cannistra is an author and speaker who was once a “poster child” for United Cerebral Palsy in 1974. UCP was founded by by Leonard H. Goldenson, then-President of United Paramount Theaters and ABC Television. He used his television background to establish very successful fundraising telethons and advertising campaigns featuring “poster children” with obvious physical disabilities. As you will read in her brutally honest account, this part of UCP’s history was a very different time. UCP is proud of the work we did during that era to help people with disabilities and their families, much of which was supported by telethon donations. But it did have a negative impact of children such as Lorraine, so we are equally proud that she chose to share her experience with us to make a powerful point. You can read more from Lorraine at www.healthonwheels.wordpress.com or contact her at lorrainecannistra.com.  

 

When I look at the picture now, I can see it so clearly. I can see the braces. The braces were made of metal and leather and weighed more than I did. They were cumbersome and hideous and confined my movements almost as much as a straight jacket. My pigtails, new dress and big smile only magnified the orthopedic braces. And that was the point. I was not only crippled, but I was cute too, and that combination made for a perfect picture of pity. The image said, “Look at me. I can’t stand upright without braces and the aide of crutches. Isn’t that sad? Isn’t it tragic? I can’t run or play hide and go seek. My life is full of heartache and so much pain that you must want to look away. You want to create distance between you and I. That’s okay. It is only fate that made your kids strong and healthy. Does that make you feel guilty? I have an easy fix. You can donate money to United Cerebral Palsy so there won’t be as many kids like me. That way you have done your part and you can sleep peacefully tonight.” Donation cans were all over town, with that picture plastered on the front. People could throw in their spare change and not have to think about me anymore.

It was all lost on me at the time. As a six-year-old kid, when I was chosen to be poster child for United Cerebral Palsy in Bergen County New Jersey, I was excited. I thought it was cool. I thought it was important. I thought it was an honor.

My parents have told me a story repeatedly about the year I was poster child. Halfway through the year, my orthopedist told them I didn’t need my long leg braces anymore. They had served their purpose and were no longer necessary. Back in 1974, the powers that be at United Cerebral Palsy told my parents that I could not be photographed as poster child unless I was wearing the braces. They didn’t think I looked pitiful enough without them.

In the forty plus years since then I have thought often about their motivation. On the surface I can sort of see that at the time the idea was to raise as much money as possible, and back then the most effective way to accomplish that was to pull hard on the community’s heart strings.

What I don’t understand is why nobody at UCP considered the potential damage of what they were doing on me. Didn’t anybody realize how demeaning it is to be the object of somebody’s pity? Didn’t they know that by trying to make people feel sorry for me they were making sure the playing field was never going to be equal? They were making a division between the “us’s” and the “them’s” of society. It has taken me a while to erase that line. Some people will never let me do it completely.

The other thing I believe happened in the year when I was poster child was that I began to internalize that message. I began to see my physical weakness as a deficit that was going to limit what I was capable of in life. That was the goal of the picture. The sad part is, in the process, it rubbed off on me.

Do I think that being poster child has really stopped me from doing what I want to do? No. But I will admit I have struggled with confidence and having a positive self-perception. There have been many times when that struggle has gotten in my way. Honestly, I don’t lorraine_cannistra and Leahknow how much of that comes from the fact that I was poster child forty years ago. There are times even now when I go to a restaurant with friends or out to the grocery store and people look at me with pity. Some still avoid eye contact or watch me struggle and want to look away.

Ironically, these days I have a career as a writer and public speaker. The main topic I explore is disability awareness and empowerment. I figure if I can tell a group of people something they didn’t know about disability or maybe challenge some negative perceptions a bit, then there is potential for some kids with disabilities not to experience some of the things that I did. If that is the outcome, then I can live with all I went through.

When I look at the UCP website today, I am convinced that the organization and I have the same goals. We want people with disabilities to be seen in a context of power not pity, and we want the community to view those with disabilities with a “one of us” attitude.

When I get ready to speak, I feel this odd mixture of nerves and excitement, and get so worked up that sometimes I think I am going to be sick. But at that point, I take a deep breath, exhale slowly and examine the crowd. I make a point to make eye contact with as many people as possible.

My message is simple. “Look at me, I am just like you.”

A Sixteen-Year Success Story

In the mid-90s, United Cerebral Palsy of Oregon and Southwest Washington changed the way it served people with disabilities seeking employment. The old model – offering “sheltered” employment in a workshop setting run by UCP – gave way to a new emphasis on finding opportunities for individuals to work at businesses in their communities. Jeff Corwin

In 1998, Jeff Corwin worked with a UCP Employment Specialist to land a job at Erickson’s Automotive in Lake Oswego. He started off coming into the shop three days a week to help owner Bill Erickson clean up tools and move garbage and recyclable metals to their proper containers.

16 years later, Jeff is as loyal to Erickson’s as ever. In addition to his commitment to his employer, Jeff has earned his Master Recycler certification and now volunteers his spare time to help a nonprofit organization with its recycling. Bill Erickson’s life and business have been impacted for the better as well. Erickson said that working with Jeff was a “blessing in disguise.”

Although UCP’s Employment Specialists established systems and written instructions to help Jeff be successful, he still needed verbal instructions from Bill. But once Bill understood how Jeff worked best, he was able to put Jeff’s near-photographic memory and attention to detail to work for the business. Jeff’s work ethic and reliability are also valuable assets to Bill in a small business where young, inexperienced workers tend to come and go quickly.

The current iteration of UCP of Oregon & Southwest Washington’s employment service, Employment Solutions, began in 2006 through a grant which allowed for just one full-time Employment Specialist supporting just a dozen job seekers. Since then the service has thrived and can boast about long-term success stories like Jeff Corwin’s.

Employment Specialists each invest approximately 500 hours of training in the first year and 100 hours each year thereafter. Each one focuses on the person with a disability who they are serving as a customer purchasing their employment services, adhering to a guiding principle of personal customer service.

Program Manager Melissa Miller explains that the jobs must be community-based and integrated so that people with disabilities are working alongside people without disabilities and offer minimum-wage or better in order to be considered.  As they once did with Jeff Corwin, Melissa’s team seeks to match employers with job seekers who have particular skills or talents that are valued by the employer to ensure satisfaction on both ends.

Find out more about the Employment Solutions program at this UCP affiliate or find employment information and resources for people with disabilities at www.ucp.org.

Jeff Corwin_Erickson's Auto

Be Part of the Great Bike Giveaway

Great Bike Giveaway BannerDo you remember the freedom you felt, the confidence you gained, the pride you had when you received your first bike? UCP is proud to partner with the Great Bike Giveaway to help give children with disabilities the same feeling you had when that shiny new bike arrived at your home.

For the forth consecutive year Friendship Circle is holding the Great Bike Giveaway, a national contest giving away adaptive bikes to children with special needs. They are partnering with Freedom Concepts, Rifton, Buddy Bike, Ambucs, Triaid,Flaghouse, Mobo Cruisers Strae Sports, the Duet and Strider Bikes to give away adaptive bikes to children and young adults with special needs.

Why The Great Bike Giveaway?

Many children with special needs miss out on the childhood joy of bike riding because their physical or cognitive limitations make riding a bicycle near impossible. The Great Bike Giveaway will give children and young adults with special needs the chance to win an adaptive bike and have the feeling of pride, freedom and confidence that bike riding brings.

How The Contest Works

Adaptive bikes are tailored to a child’s needs. To meet the needs of the recipients in this contest, a separate contest is held for each bike type. The contest starts with two bikes of each type and money is raised to add more bikes as the contest progresses. Last year the Great Bike Giveaway ran eight different contests and gave away a total of 108 bikes! This year Friendship Circle hopes to give away 300 bikes to individuals with special needs.

Each bike page has a space where users can enter the contest. Submit a picture of your child with special needs along with a short explanation of why your child needs an adaptive bike.

From the winner of a Parent:  Judd, received his Rifton tricycle that he won through your bike giveaway. He loves it so much. His first time out with it , he pedaled .75 miles! Everyone at the track had a smile on their faces watching him enjoy his bike. The biggest smile there belonged to him though.

Two Ways to Win

Most Votes One bike in each contest will be given away to the entry with the most nominations. Nominations are received from friends and family clicking the “nominate button” on an entrants submission

Bike Raffle All the remaining bikes will be placed in a drawing. To be eligible for the drawing each submission must be nominated by at least 50 friends and family members.

How You Can Help

Whether you have a child with special needs or not you can help more children with special needs win an adaptive bike.

1. Donate To Add More Bikes

In addition to the bikes that have been sponsored, Individuals have the ability to donate to the Great Bike Giveaway to get more bikes added. Every time the donation meter is filled another bike gets added to the drawing!

2. Share and promote

Let as many people as possible know about the opportunity to win an adaptive bike by sharing the the contest via your social networks and email. You can also check out the resources page for additional tools you can use to share the contest.

Contest Timeline

March 4th 11:59 am

Contest submission deadline, no entries will be accepted after this time.

March 5th

Drawing (Drawing date is tentative and subject to change) Will be held and winners will be announced.

To enter the Great Bike Giveaway visit www.greatbikegiveaway.com For contest rules visit www.friendshipcircle.org/bikes/rules.

A Special Thank You To the Sponsors

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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

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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!