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.  

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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.

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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.

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“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

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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The Camp SMILE Spirit

 
by Megan Maher, UCP’s Special Events Coordinator
 
Special Meaning in Life’s Experience. That’s what Camp SMILE stands for, and strives to achieve. Hosted by UCP of Mobile, Camp SMILE is a residential summer camp for individuals with disabilities (ages 5-50) and their siblings. With adapted rules and specialized equipment, campers not only have the chance to participate in physical activities like kayaking, fishing, swimming, boating, and horseback riding; they also meet others whose abilities and life experiences are similar to their own.
 
Founded in 1972, Camp SMILE has grown exponentially – from originally serving 27 campers for four days in the summer to now serving over 300 campers across four five-day, four-night sessions and two seasonal respite weekends. The camp offers a unique one-to-one camper-to-counselor ratio, which helps campers adjust to life outside their normal routine and helps foster genuine relationships between campers and counselors.
 
My journey with UCP began as a Camp SMILE counselor in 2004. After spending five full summers at camp, I went to college and based my education off my camp experiences. I bounced from special education to psychology, worked at an autism center and on an autism research project, and fueled the search for my future career based upon the inspiration camp had instilled within me across my high school days. Now the Special Events Coordinator for UCP’s national office in Washington, D.C., I journeyed back to my camp family this summer to rediscover the Camp SMILE spirit, and learn what it truly means to everyone involved.
 
The Camp SMILE Spirit for Counselors
 
This was Emily Kendall’s 15th summer as a camper, but her counselor’s first. “We’re friends at school,” her counselor Emma Erwin explained. The pair are students at Baker High School, where Emily would frequently talk to Emma about camp and her summer experiences. “After my grandfather died,” Emma said, “Emily came to me and said: ‘Don’t be sad, because in heaven he’ll get to ride the zipline just like you can at Camp SMILE.’ I knew then I wanted to be a counselor, and waited every year until I was finally 16 and could sign up to volunteer.”
 
 
 
For Mallory Schum, the Camp SMILE spirit is about making her camper have the best week possible. “I like that camp makes us feel equal, like they aren’t the minority.” Schum states the experience is like working for any other summer camp, and then some. “I try to make sure my camper gets the most out of their week, but feel like I might get even more out of it myself.” Her favorite moment? Struggling for hours to get a wheelchair-bound camper up a waterslide, but then getting to see the look on her face when she slid down. Mallory sees the Camp SMILE spirit to be a beautiful thing, stating that: “As long as this place is around, it will continue to give counselors and campers alike a meaningful and life changing summer experience.”
 
A counselor for six years, Mallory intends to go into the field of nursing and continues to volunteer with UCP of Mobile throughout the year. Over a third of all volunteers follow suit by choosing college majors and future careers that relate back to their summer camp experiences.
 
The Camp SMILE Spirit for Campers
 
Waylon Rogers, a camper for virtually his entire life much like Emily, says that camp means “you always have to smile.” Waylon, known for his dance moves and remix to the “Mr. Sun” flagpole song’s chorus, values the friendships that camp has given him. After all, he says, “even when you have to leave, camp is about knowing you can come back next year.” And indeed the campers do come back. As Camp SMILE’s model separates by age, not disability, campers have the opportunity to grow up together and proceed through the different summer sessions as a group.
 
Marcus Williams (pictured here) has been coming to camp for “a long time” he tells me. For Marcus, camp is family. His favorite part of camp are his friends, a group that bring energy (and maybe a little bit of trouble) to the entire camp and are notorious for having the most rambunctious cabin of the week.
 
His message to someone who has never come to Camp SMILE before: “You have to come see it for yourself, cause you’re gonna love it.”
 
 
 
 
 
 
 
The Camp SMILE Spirit for the Community
 
This summer was Matrisza Alvarez’s 21st year at Camp SMILE. This camp journey has taken her from counselor to staff to UCP of Mobile employee, and now, Camp Director.
 
For Matrisza, the Camp SMILE spirit embodies more than just the summer camp experience – generating true community and family benefit. “We are the only residential camp in the greater Mobile area for all disabilities. Camp SMILE encompasses everyone – and means just as much to the families as it does to our campers. Through this program and our respite weekends we strive to provide a safe, loving, and fun environment so that parents can get a break themselves and feel confident that their child is being cared for.”
 
Camp SMILE is also sustained by a strong volunteer force – from teen counselors to dedicated staff who decide to spend their summers to continue building this program. “How many teenagers we have doing great work with us all summer is amazing,” says Alvarez. “Camp is not only a huge service to our campers, but provides a volunteer experience to hundreds of teenagers in the Mobile community each summer.”
 
 
To learn more about Camp SMILE, visit http://www.campsmilemobile.org or contact Camp Director, Matrisza Alvarez at malvarez@ucpmobile.org.

Ms. Wheelchair Michigan 2014 Shares Journey to Parenthood

Are you a person with a disability who has ever wondered whether or not you would one day become a parent? Or are you a parent or caregiver who has ever had the same question regarding your son or daughter? Ms. Wheelchair Michigan 2014, Kelsey Kleimola, recently shared her story with UCP and discussed this very topic. See her story below!


by Kelsey Kleimola, Ms. Wheelchair Michigan 2014

 

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From a very young age, I’d always known I wanted a family.  I fantasized about being a mother, imagining a world in which my wheelchair didn’t exist.  Not because I felt sorry for myself, or because I didn’t think parenting would be a possibility, but because I honestly didn’t think all that often about having a disability, or that it might keep me from my dreams.  To me, having a disability was as much a part of me as breathing– something I’d lived with my entire life.  I’d learned early on that I could either let it define me or let it drive me.

 I was diagnosed with cerebral palsy when I was ten months old.  After being told, throughout many times in life, that I would never be able to do anything, and that any hope for a bright future looked grim, I worked hard to prove my naysayers wrong.  When they said I couldn’t do something, I pushed forward– and I did it.  I attended a public high school, even though I was told I’d never talk.  I was accepted into an amazing college, though I was told that would be an impossibility.  I continued to dream, despite those who were quietly whispering, “You can’t.” Always, though, my heart went back to one thing– wanting to be a mother.

Then an amazing thing happened.  Some might call it miraculous.  Right there, in the middle of my everyday life, I met my husband.  We met in an online chatroom and during the first several weeks of us talking, I was upfront and honest.  “I have cerebral palsy,” I said.  His response? “So what?” It was then that I knew, this was the man God had chosen for me.  On a snowy February day, two years after we’d first met, we got married.

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A month before our second anniversary, we were blessed with a beautiful baby boy.  I’d gone through a normal, healthy pregnancy.  I was elated.  My thoughts rushed back, not for the first time, to the little girl who longed for a family of her own. I was wrapped in a perfect bubble of happiness, knowing no one could burst it. But people tried.  They questioned how I would care for a baby on a daily basis.  What would happen when my son grew older and began to walk?  What if he ran away from me and into a dangerous situation?  What would I do?  How would I cope?

 But do you want to know the truth?  While everyone else was busy worrying, I was busy loving. I reveled in the sweet smell of my baby boy– the fact that I could make him laugh so easily, that I could make him happy and that I was his mommy.  I chose not to live in a world of “what ifs.” Instead, I savored the moments that I knew would pass all too quickly. I focused on what I could do as a parent, instead of the little things that I needed help with.  I could change his diapers, give him baths, feed him and snuggle him.  But most importantly, I wrapped my son in the certain knowledge that I was his mommy, and that was enough for both of us.

That was five years ago.  Since then, we’ve added a gorgeous baby girl to our family.  Neither one of my children have ever questioned why I’m in a wheelchair. This is their normal, and that’s OK.  But when the difficult days and voices creep in, once again whispering, “You can’t,” the sweet laughter of my children reminds me that I did.

 

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Kleimola is from Grand Rapids, MI and currently lives in Ypsilanti, MI with her family. She will compete at the Ms. Wheelchair America 2015 competition in Long Beach, California on August 4 – 10, 2014. Feel free to follow her on Facebook!

 

Time to Swim! UCP’s Interview with Dr. Deborah E. Thorpe

by O’Ryan Case, UCP’s Manager of Public Education Programs

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Debbie Thorpe, PT, PhD
Associate Professor
The University of North Carolina at Chapel Hill

 

 

 

Summer is underway! A short while ago, we talked about the importance of inclusive summer camps and, this month, we are highlighting the many benefits that swimming brings to individuals with a range of disabilities (well, all individuals to be exact!). 

I recently had the pleasure of speaking with Dr. Deborah E. Thorpe, a physical therapist who who is an Associate Professor at The University of North Carolina at Chapel Hill. Dr. Thorpe led Project ACT NOW (Adults with Cerebral Palsy Training to Increase Overall Wellness), which investigated the effects of aquatic exercise on fitness and participation of adults with cerebral palsy (CP). See below to check out the interview!

Interview with Dr. Deborah E. Thorpe (DT):


Thanks so much for speaking with me and sharing your expertise around aquatic exercise with our UCP audience! I’ll begin with the workout that swimming brings. I have spastic diplegic CP and, whenever, I swim, it really feels like a complete workout. Can you tell me a little more about why this is and why I feel this way?

DT: It’s because aquatic exercise is a whole-body workout. When you exercise in the water, you’re moving against resistance the entire time– and this is a lot more resistance than what is felt on land. Water applies variable resistance, so the slower you move through water, the less resistance you experience against your movements. Conversely, the faster you move through water, the more resistance you experience. When you push ten pounds worth of force through water, you’re getting ten pounds pushed against you. Every muscle group can be exercised against resistance much easier in the water than on land. Also, for individuals with muscle weakness and limited range of motion, different movements, such as abduction, can be very difficult on land. But in the water, properties like buoyancy (the upward force of the water pushing against the object that is being submerged) make these movements much easier.


You’re right. I’m able to do much more with my legs when I’m in water than when I’m on land. Can you explain water’s buoyancy a bit more?
 

DT: Water’s buoyancy affects the amount of weight bearing on your legs. When you’re in waist-deep water, your legs are only having to support 50% of your body weight. In chest-deep water, your legs are only having to support 25% of your body weight. In neck-deep water, your legs are only supporting 10% of your body weight. Moving in water is so much easier for individuals with neuromuscular challenges, such as CP. If individuals have a hard time standing, I’ll put them in chest-deep water and they can stand and many times walk with their feet flat on the bottom of the pool. Once they get stronger, we’ll move to waist-deep and then knee-level water. Then, before you know it, they’re in mid-calf water.

 

So in addition to making the movements much easier, what other kinds of benefits come with swimming and other aquatic exercises?

DT: Well, it’s a safer environment in which to try more risky movements. I can’t get all of the kids I work with to jump off a step when they’re on land. But if I ask them to jump while they’re in the water, they feel safer and safety isn’t much of an issue. I can get people to jump up and down, or stand on one leg without losing their balance, which may be very difficult on land. If they fall in the water, they will not get injured. 

I mentioned it brings a total-body workout and helps with increasing range of motion in most muscles. In chest-deep water, the hydrostatic pressure produced by the water pushes against and gives a quick stretch to your diaphragm. It works the muscles in your chest– kids with CP tend to take short breaths, which is why some have softer voices, as they’re not filling their lungs all the way up with air and have trouble pushing air out of their lungs. When water is pushing against your diaphragm and providing resistance, by breathing you’re building up its strength and increasing the ability for the lungs to expand more and, ultimately, you can take in more air; it can definitely help with breathing.

Additionally, this hydrostatic pressure pushes on organs, such as the bladder and bowels and helps these organs to better perform. What do we all do after a half hour or so of aquatic exercise? Go to the bathroom!

 

Wow, that’s a lot! Do these benefits tend to last? 

DT: Anecdotally, adults with CP and parents of children with CP have told me that they’ve seen these types of benefits last for up to 24 – 48 hours.

The hydrostatic pressure produced in the water is a natural pump. Being in water is almost like wrapping an ace bandage around your calf moderately tight. The pressure of the water pushes lactic acid (which you build up while exercising and is what makes your muscles sore) out of the muscles at a faster rate than when doing land-based exercises.

 

So just to confirm, would you say these benefits apply to individuals of all ages and with all types of disabilities?

DT: Absolutely. I’ve worked in the water with babies, as well as individuals in their 70s. And I’ve worked with individuals with CP, Down syndrome, spina bifida and more. There is no one who can’t go in the water. For someone who has a tracheostomy, more precautions need to be addressed, such as making sure water doesn’t get into the trach.  If someone has a seizure disorder, you have to make sure the seizures are controlled and monitor him or her closely.

Let me tell you about one woman with whom I have worked with in the water. She has spastic quadriplegic CP and has used a power wheelchair since she was a child. She basically has only limited movement in her hands out of water– but in neck-deep water, I have seen her running!

 

That is incredible. Another thing about swimming that I’d point out is that it’s something people of all abilities can enjoy– it’s fun! Can you talk a little bit about that? 

DT: It also brings so many psychological benefits. I put all kids, no matter what their ability level is, in the water together. It’s amazing to watch them play basketball in the pool. Water “levels the playing field” and they all have a lot of fun. So in addition to the physiological and safety advantages, there are psychological ones involved as well.

Take kids who want to play t-ball. We play in the water! With the water resisting their movements and them having to fight the currents that are created in a pool from people moving around, the core is being strengthened. So you not only get stronger, but your balance improves.

 

What kind of timetable do you see with these types of results? 

DT: Everyone is different, so it all depends on the person and their abilities. But I’ll give you an example. I worked with a twenty-one year old man with spastic diplegic CP, who was an assistant head coach for his college’s baseball team. He told me he was always tired and that he wanted to gain strength so that he could do fun things after class and baseball events (just like every other college student). His upper body was very strong but his legs were very weak and atrophied. He came into my program and we worked for 45 minutes, three days per week for ten weeks. At the end of those ten weeks, I measured his function– he gained 200% in strength in both of his legs! Also, he was able to walk around the living room for the first time without using his forearm crutches! 

I also did a study with adults, where we worked three times per week for twelve weeks. Results indicated a trend toward improving their bone-mineral density. I can’t say this was directly a result of  aquatic exercise but they were definitely increasing their strength. The ones who walked were walking further and faster– and the water seemed to be the catalyst. Unfortunately, at a six-month follow-up assessment, a majority of their assessment measures were back to their baseline. Only a few had joined a facility where they could exercise in the water.  When they were in the study, they were provided with a pool membership for the course of the study and had camaraderie during their exercise sessions and tons of support. When the study ended, those supports went away.

 

I can say that having a chance to interact and train with other individuals who have disabilities would be fun and bring a sense of comfort. It’s certainly different when I may be the only person in the water or at a gym with a disability.

DT: I understand. I’ve been researching these types of barriers. Cost is a major barrier– a pool or gym membership that costs $35 per month is tough. Transportation is a barrier. And feeling like no one at a pool or gym knows what you can and cannot do is another barrier to exercise. Let me point out that there are personal trainers out there who are American College of Sports Medicine (ACSM)- certified in working with individuals with chronic disabilities. These trainers will likely have at least some familiarity working with individuals with disabilities– so that would be something for individuals and families to consider is to check with exercise facilities to see if any of their staff has this certification.

 

All of this information is helpful. What would you tell an individual with a disability or a family member who wants to know ways to become involved with aquatic exercise  or aquatic therapy?

DT: First, I’d suggest getting a physical therapy evaluation. Get a prescription for an aquatic therapy evaluation from your primary care provider. The physical therapist will evaluate the individual on land and tell them the areas needing improvement (i.e. strengthening, flexibility, cardiorespiratory conditioning, etc). Insurance should pay for the physical therapy evaluation. After this evaluation, the therapist will then take the individual in the water and develop an aquatic exercise/therapy program for them. Note that aquatic exercise and aquatic therapy are different. You have to have a doctors prescription to get aquatic therapy but, with aquatic exercise, you can go to any pool and exercise in the water. Also, a  good resource to check out is the National Center on Health, Physical Activity and Disability (NCHPAD). There are a lot of exercise videos on its website.

 

So, as we wrap up, do you have any other closing remarks that you would like to share? 

DT: To the parents and caregivers that UCP serves, I would say get your children comfortable in the water. Parents can get very apprehensive about putting their children in the water– but consider enrolling them in swimming lessons. Remember, there are safe flotation devices out there. I would also suggest finding a physical or occupational therapist who does aquatic therapy and can do an evaluation and come up with an individualized program. Finally, remember that a big factor with swimming is its social aspect. Kids can become bored with physical therapy but aquatic exercise and swimming can happen anywhere– like we said earlier, it’s fun! I’m a huge proponent in getting involved in community-based physical activity. I want individuals of all abilities to go out and participate with their peers.

– 

It was such a pleasure learning more about the types of physiological, psychological and other benefits that come with aquatic exercise. Dr. Thorpe was also kind enough to share this video of someone she has worked with. 

 

If you would like to learn more about aquatic therapy, you can contact Dr. Thorpe at dthorpe@med.unc.edu or me at ocase@ucp.org.

 

 

Teen Gets a Yes to Prom! UCP’s Interview with Allan and Morgan Assel

by O’Ryan Case, UCP’s Manager of Public Education Programs

I recently had the pleasure of speaking with Allan Assel and his daughter, Morgan, whose recent story which included professional quarterback, Robert Griffin III (RGIII), was shared all over the country. Morgan, whose close friend and classmate, Juwaan Espinal, happens to have cerebral palsy (CP), used social media to come up with a fool-proof plan of making sure she was the lucky one who Juwaan would accompany at their Centreville High School prom in Virginia. When Morgan,joined by United States Olympic Fencer, Nzingha Prescod and Juwaan’s favorite football player, RGIII, asked Juwaan to prom, he quickly accepted. See below to check out the interview with Allan and Morgan! 

Interview with Allan Assel (AA) and Morgan Assel (MA):

 

Thank you both so much for taking the time to share your story with our UCP audience! First, we all want to know– how did prom go?

MA: Prom was awesome! Juwaan really likes to dance, so we danced a lot and ate some really good food. We had a lot of fun and it was an amazing time.

 

That sounds like a great time! Were you tired from all of that dancing?

MA: Oh yes, we were definitely tired the next day.


So, as part of our work here at UCP, we work to ensure that everyone of all abilities can live their lives without limits. Your story was shared all around the country. However, it wasn’t the fact of Juwaan going to prom that caught our attention, but rather the great lengths you went to in order to make your ask so special. Can you talk about what it was that made you go these great lengths?

MA: Juwaan absolutely deserved all of it. He goes through a lot but always remains positive. It   wasn’t difficult for me to want to find a way to help make the day so special. If anyone deserved it, it was Juwaan. And if there’s anyone I’d want to go to prom with, it was definitely Juwaan.

 

 

It sounds like throughout all of your planning, your thinking wasn’t centered around whether or not Juwaan could go to prom, but instead around how to make the ask so special that he would tell you yes.

MA: Yeah, he’s pretty popular so I had to make sure I was the one he would take to prom. I didn’t want anyone else to beat me to him!


Allan, what were your thoughts when you heard of Morgan’s plan and what did you think would happen?

AA: The very first thought was that I was impressed with her reverse social-engineering skills! I was impressed by how she contacted a U.S. Olympic Fencer, Nzinga Prescott, who helped her get in touch with RGIII. Initially, she organized an event at the school to help add to all of the excitement. But it kind of fell through and she had to work with the school and other officials to make everything happen. We were all very proud of her.

 

Morgan, when did you decide you were going to try to make this happen?

MA: I’ve known all year that I wanted to ask Juwaan to prom. But I came up with my plan around the end of April.

 

 

So you’ve known Juwaan for a little while. Can you tell us a little about your friendship?

MA: We’re juniors now and we met during our freshman year at gym class. We text a lot, chat on social media and do all kinds of things like bowling and going to our school’s football games. We just went to Chipotle for his birthday!

 

Have you ever known anyone else with a disability? What would say Juwaan has taught you about CP and other disabilities?

MA: I’ve known other individuals with disabilities but no one else who has CP. I’ve learned that he’s just like me and all of our other classmates. People may assume he’s different but he likes to go to the same places, do the same things and has the same sense of humor as everyone else. He’s not “special needs,” he’s a special guy.


And he likes to go to Chipotle, just like almost everyone else!

MA: Exactly!


I’ll open this up to both of you. What would you say are your biggest takeaways from all of this?

MA: Mine is to be kind to people. A lot of people have been messaging me on social media and telling me that I’m a good person but it doesn’t take much to be kind and a friend to someone. It shouldn’t be as big of a deal as it was but instead, it should be a common place where we include everyone and be kind to one another.

 

AA: Outside of seeing him at the football games, I didn’t really know Juwaan before all of this. I knew he was a part of the football team and figured he was cool. But the coolest thing was when I had the chance to meet and see him interact with everyone. You can almost feel the love. I was happy he took my daughter to prom; although I did tell him to not keep her out too late!

 

Another thing that impressed me was the amount of love that he and his family share. After we took pictures right before prom, it took almost twenty minutes to get Juwaan and his wheelchair into the car. I was amazed at how long it took and how much work he and his family go through to transfer in and out of a vehicle.

 

With so much going on and your story spreading everywhere, what would you like to see come out of all of this?

MA: I would love it if people would include everyone of all abilities more throughout life. In high school, it can be difficult to open up your eyes and see that everyone around you goes through similar challenges, but I would love it if everyone would spend more time with and include one another.

AA: The thing that I took away from everything is, again, getting to know Juwaan and his family. After prom, I learned that Juwaan’s mother has been trying to buy an accessible van. Juwaan hasn’t gone to the mall or grocery store in a long time because getting in and out of his family car takes a lot of extra work. This story is good on so many different layers and prom will be a phenomenal memory, but I’d like to see it touch the quality of life for Juwaan and his family. I’ve pitched in to his mother’s GoFundMe site, which can be found by searching online for “van for Juwaan.”

 

One last question, Morgan. You’re a junior and may have set the bar just a little high this year for when it comes to asking someone to prom. Will you fill us in on any ideas you may have for next year?

MA: I honestly have no idea. I don’t really know how this can be topped so I’ll have to think about it for a while!

 

You really went above and beyond– not just with your ask to prom but for opening your eyes to get to know others around you. Thank you both again for taking the time out to speak with UCP and we look forward to sharing this and some of your photos with our audience!

MA: Sounds great!

AA: Awesome! We look forward to it!

 

 

It was great to chat with Allan and Morgan Assel. If you have any questions or would like to learn more about this story, you can contact me at ocase@ucp.org or Allan (@aja4304) or Morgan (@morganassel) on Twitter. You can find UCP (@UCPnational) on Twitter as well!