Share Your Wheelchair Denial Stories

Attention, Advocates! 

United Spinal Association is calling for our members and all wheelchair users to share your stories of coverage denial for essential equipment with us.

Our wheelchair denial stories are powerful and getting them in front of the right people is the best way to get policies and laws that support our independence and right to move about our community.

Share Your Story 

Our Government Relations Team is collaborating with physical therapist and wheelchair clinic expert, Jean Minkel, to document this problem.

"Everyone has a wheelchair story and most of them stem from frustration about denials," says Jean. "Too often, we share stories with each other, but they’re not collected to show the patterns of failure of our current policies and practices. We need to see them in one place to effectively advocate for what our community actually needs."

There is always power in numbers. Our collected stories will illustrate how many people are negatively impacted by coverage restrictions. They will give us tools to demonstrate why all wheelchair users must be able to obtain the equipment they need.

Thanks for your help!

Autism Society of America Partners with Goodnites®

 

The Autism Society of America is proud to announce our partnership with Goodnites, the #1 bedwetting underwear1 brand, to educate, support, and provide solutions for families of children with Autism who need a longer-term bedwetting solution. While bedwetting is a common occurrence among all kids, children with Autism and/or ADHD may face a longer experience with nocturnal enuresis, commonly known as bedwetting.

Goodnites is committed to supporting this underserved group by combating the bedwetting stigma and giving parents and children the comfort that they are not alone. Through an ongoing partnership with the Autism Society of America that extends through 2023, the two organizations will support the community through educational resources, national and local community events, and advocacy.

“Goodnites is addressing challenges faced by many in the Autism community with higher support needs, that are not often talked about,” said Christopher Banks, President and CEO of the Autism Society of America. “The resources this partnership creates will serve as a starting point for conversations that will help break the stigma in a community that can often feel isolated and underserved.”

Learn More

Hopes & Dreams Conference Registration Now Open!

Registration is OPEN for this year's Hopes and Dreams Conference! 

Join us for an exciting in-person day of learning and networking. In addition to our keynote speaker, we will have workshops focused on mental and behavioral health, Medicaid, and education topics including preschool, accessing services, and post-high school transitions. We will also have exciting exhibitor tables highlighting information and services. 

Keynote Speaker: Desmond Kelly, MD

Dr. Kelly is the Associate Dean for Research at the University of South Carolina School of Medicine Greenville and Professor in the Department of Pediatrics. He also serves as the Chief Medical Research Officer for the Health Sciences Center at Prisma Health-Upstate where he leads research development through engagement and support of clinical faculty in collaboration with HSC university partner researchers in transformative health research initiatives. He is the Associate Program Director for the DeLoache Fellowship in Developmental-Behavioral Pediatrics in the Department of Pediatrics and Outreach Director for the South Carolina LEND (Leadership Education in Neurodevelopmental Disabilities) Program. 

Learn more about Dr. Kelly 

Professionals and Students Registration Link

Families, Foster Parents & Self Advocates Registration Link 

Become a Hopes and Dreams sponsor or exhibitor! 

Thank you to our conference sponsors! 

March Youth Newsletter

A Life Well Lived - Our Friend Judy

We join in sharing our condolences for the loss of Disability Rights pioneer Judy Heumann.  

Affectionately known by her podcast listeners as a “certified badass,” Heumann’s influence in starting and expanding the disability-independent living movement worldwide cannot be underestimated.  

As a child, Heumann challenged the systems in place that questioned why individuals with disabilities were separated and not provided the same opportunities as other students. This sparked her trailblazing work in which she was a central figure in every significant piece of disability rights legislation, including the foundations of disability protections: Section 504 of the Rehabilitation Act, Individuals with Disabilities Education Act, and the Americans with Disabilities Act.  

Heumann has long been a friend of Able South Carolina, appearing in podcast episodes, speaking at events, and engaging with our youth. In 2020, Heumann joined the South Carolina Access & Independence Network’s Advocacy Day for Access & Independence and shared this with our community:  

“Disabled individuals, regardless of our ability, have a right to the same quality of healthcare and the right to receive information… This is a time not only for us to speak up and speak out but also to be working actively with other coalitions of organizations…We must fight against any kind of bias which precludes people with different types of disabilities, racial backgrounds, socioeconomic backgrounds, etc. We must be fighting [so that] every vote counts, and we must be fighting against those who are trying to limit and restrict the number of people who can vote…Do not be shy. I encourage you to work in a collaborative way because it’s very important that the messages that are going to be given to your state legislators and others … that we try to speak in a unified voice… try to work cohesively to fight against discrimination across the board.” 

Heuman also spoke to South Carolina Youth Leadership Forum delegates, our youth representing future disability leaders, in the summers of 2021 and 2022. She encouraged and inspired them to be activists and leaders within their communities and the greater disability rights movement. The delegates asked her, what do you want to see from our generation? Heumann shared,  

“Continuing to expand the work of the movement, which includes learning about each other, supporting each other, working for new legislation implementation of legislation… You don’t have to only be working in the area of disability. You can also take your knowledge and drive, and bring it into other groups, sports clubs or sports groups or book clubs, or your religious community, whatever it may be, allowing disability to be a part of who you are and try to show up with it.” 

Always one to never accept the status quo simply because “that’s the way it’s always done.” Heumann envisioned a barrier-free world for all individuals. A world that embraced inclusion for anyone with a disability.  

Since 1994 Heumann’s influence has directly guided the work of Able SC. Our impact is directly related to the paths she created for all of us.  

“Judy’s life is something to be celebrated. While we are devastated by the loss of our friend, we will forever carry her legacy, her passion, and her grit.” Kimberly Tissot, Able SC, President and CEO.  

Huemann led a life well lived and was the ultimate badass. Rest in power, Judy. We will continue the movement you helped create. 

Checkout our 2019 Podcast Interview with Judy

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Why Disability Representation

in Children's Books is Important 

The article “Why Disability Representation In Children’s Books Is Key To An Equitable Future” discusses disability representation in different types of media and why it is important to include characters with disabilities in children’s books. The article also looks at the problems that often come up with disability inclusion in movies and TV and how printed stories can allow the positive representation of individuals with disabilities to grow. Gus Alexiou, the author, writes about accessibility, inclusion, and social justice. 

Read the Article!

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ADA Live Podcast, Episode 113: 

Stories of Parenting with a Disability 

Listen to this podcast to hear an engaging conversation on parenting with a disability and a new book on the topic, “A Celebration of Family: Stories of Parents with Disabilities,” with our four guests: 

• Dave Matheis, Kentucky Coalition for the Rights of Parents with Disabilities 
• Jason Jones, Disability Specialist, Human Development Institute, University of Kentucky 
• Kimberly Tissot, President, and Chief Executive Officer, ABLE-South Carolina 
• Kara Ayers, PhD. Associate Professor, Associate Director, University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEDD), Cincinnati Children’s Hospital Medical Center, Division of Developmental and Behavioral Pediatrics 

"A Celebration of Family: Stories of Parents with Disabilities" contains the stories of thirty families. In every family, one or both parents have disabilities: physical, mental, sensory, and/or intellectual. The stories illustrate the infinite variety of the American family. It is that variety that gives the family both its strength and its beauty. Like individuals, no two families are the same. In the course of discussing their family experiences, the parents cover a number of topics. Click the button below to listen to the conversation or read the transcript. 

Checkout the Podcast!

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Equip Hangouts

First and Third Thursday of every month from 6:00 - 7:00 PM. 

Equip Leaders and Mentors help empower their peers to take charge of their lives, find their unique voice to self-advocate, and engage with their community of peers more fully. Our Equip Hangouts meet on the first and third Thursdays of every month from 6-7 PM. The meeting on the first Thursday is held virtually, and the meeting on the third Thursday is in person at the Greenville and Columbia Able SC offices. If you have any questions about Equip Hangouts, please email mhanna@able-sc.org or hroberts@able-sc.org. 

Upcoming Equip Hangouts: 

Thursday, April 6, 6-7 PM, Virtual 

Thursday, April 20, 6-7 PM, In Person 

Register for the link here!

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Click here to read more of this issue!

Autism Prevalence Rate Jumps to 1 in 36, Ahead of Autism Acceptance Month

Autism is the fastest-growing developmental disability in the United States, with one in 36 children receiving a diagnosis, according to today’s newly released report from the Centers for Disease Control (CDC). In addition to the 5.8 million Autistic adults, this prevalence means that Autism likely touches a vast majority of Americans either through relationships or direct experience, and the support needs across the Autism spectrum are vastly different. During Autism Acceptance Month, the Autism Society is highlighting the diversity of experiences and needs with a reminder that acceptance happens every day.

The Autism Society is committed to sharing the varied and unique experiences across the spectrum. With this goal, we hosted a brand photoshoot in early 2023, to capture Autistic individuals with high support needs, specifically, those who use AAC, may also have intellectual and/or additional disabilities, and require additional levels of care. This Autism Acceptance Month, we are proud to share a new collection of portraits, stories, and experiences featuring Autism community members and their families. 

We are honored to share a preview of these images and our newest video featuring the participating families.

"As a person with Autism and my other challenges - it's not every day that people ask me the kind of questions you all did at the photoshoot, like about my hopes for the future. " - Megan, person with Autism

Help us advance representation this Autism Acceptance Month with a gift.

"Having an opportunity to share bits of our family's journey is invaluable for the community to see how we show up in the world, but also for our family to reflect and put into words what makes us so special to each other." - Corinna, Mom and photoshoot participant

To support our participants, the team provided detailed itineraries for individuals and families to prepare and review what to expect on-site. Our national team members, and photo and video teams provided inclusive, considerate experiences – including low light, private spaces for calm, sensory supports, time considerations and sound management – all things not traditionally provided in a photography studio setting. 

Acceptance happens everyday in big and small ways.

For families and individuals with needs that require specific and around the clock care, the Autism Society of America is committed to amplifying their stories and experiences, and continues to advocate for expanded services and supports that meet their needs. 

Please join us as we work together to create a more accepting world with the resources, supports, services, and connections for the Autism community to live fully.

• Press Release
• Prevalence Rate Statement
• Resources
• Partnerships 

Click here to visit our website.

AAIDD Annual Meeting- Make Your Room Reservation Today!

 

AAIDD 147th Annual Meeting 

The 147th AAIDD Annual Meeting will provide a forum for researchers, practitioners, policymakers, students, early career professionals, and advocates to come together to explore and discuss strategies related to integrated and competitive employment for people with IDD. Join us June 5-7 in Pittsburgh to set new norms for promoting employment and other quality of life outcomes.

Register Here!

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Reserve Your Room Today!

The conference will be held at the Wyndham Grand Pittsburgh.

Reserve a room at the preferred rate, by booking online or by calling the hotel directly (1-888-317-0197)

Deadline for reservations at the preferred rate: May 19, 2023

Book your hotel room early, a limited number of rooms are available on a first-come, first served basis.

Hotel Information

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Questions? 

Check out our General Information page for commonly asked questions and answers. 

Your Health: Choices and Responsibilities

 

Connect to activities for taking care of your health. 

Register for this free training!

Online: April 17  from 3 pm to 4 pm 

In Person at Columbia and Greenville Offices: 

April 18  from 3 pm to 4:30 pm 

Registration will close the day before the training. 

For questions, contact Dori at dtempio@able-sc.org. 

Register Here!

New Drug Therapy Might Hold Potential for Individuals with Autism

School of Medicine faculty member focused on brain receptors affecting habitual behavior

By Chris Horn, chorn@sc.edu

New drug therapies being tested for treatment of schizophrenia hold potential for treating autism, says a School of Medicine Columbia faculty member who studies the brain receptors targeted by the experimental drugs.

Daniel Foster, who joined the Department of Pharmacology, Physiology and Neuroscience this past summer, is using a National Institutes of Health grant to study the relationship between repetitive behaviors and a particular brain receptor linked to such behaviors. Foster’s research suggests that muscarinic acetylcholine receptors could be a prime drug target to treat the habitual behaviors often seen in individuals on the autism spectrum.

"A previous clinical trial with Alzheimer’s disease patients looked at the cognitive benefits of targeting muscarinic receptors, and they surprisingly found that the 33 percent of Alzheimer’s patients who exhibited symptoms of hallucinations and outbursts experienced symptom relief while taking the drug,” Foster says. Gastrointestinal side effects eventually sidelined that experimental drug, but research on more selective muscarinic-targeted drug therapy continues.

“When you’re trying to think about moving a compound into clinical trials, it helps to know why a certain compound works.” 

-- Dan Foster

Click here to read more!

Accessible Roadside Assistance When Your Vehicle Breaks Down

March 16, 2023

NEWS

Community Celebrates Disability Rights Pioneer Judy Heumann

Disability rights icon Judy Heumann died on March 4 at the age of 75. Heumann played a leading role in many of the key events that secured and advanced our community’s civil rights to fully integrate into society: the lawsuit that paved the way for disabled people to become teachers, the landmark Section 504 sit-ins, and the development of the United Nations’ Convention on the Rights of People with Disabilities, to name a few.  See how wheelchair users across the country reflected on Heumann’s legacy and read more about her incredible life.  

NEW AND NOTEWORTHY

Mobility Roadside Assistance Provides Accessible Pickup and Towing Service

It can be hard to feel safe driving by yourself when towing and roadside assistance companies typically have no transportation options for wheelchair users. A new roadside assistance program is changing that by offering a nationwide, fully accessible service that includes towing and pickup in an accessible vehicle. 

Disability Media Network Offers Authentic Disability Content on New Streaming Service

Despite some recent progress, authentic representation of wheelchair users can be hard to find in traditional media. Disability Media Network is a new streaming service with content created by and for people with disabilities. Learn more about how to watch this free service and check out a list of current offerings that feature wheelchair users.   

MENTAL HEALTH

Pandemic Isolation Showed Me That I Needed Help

Hilary Muehlberger had reached the end of her rope in October 2021. Anxiety and depression, fueled by the isolation and stress of the COVID-19 pandemic, left her struggling to function. She made the difficult decision to check herself into a psychiatric hospital. A year and a half later, she calls it “the best decision I’ve ever made.” Read more about how the experience served as “a mental reset” and how she’s moving forward, one day at a time.

Click here to read more of this issue of New Mobility! 

New Mobility is the member publication of United Spinal Association, whose mission is to improve quality of life of people with spinal cord injuries and disorders. It's free to join United Spinal, and members may receive New Mobility magazine for free for one year. Join here.

Wings for All Lands at Charleston International Airport on April 15th! Register today!

What: The Arc of South Carolina and 

The Arc of the Low Country Wings for All Event

When: 12:30 p.m., Saturday, April 15, 2023

Where: Charleston International Airport (CHS) 

at 5500 International Blvd. North Charleston, SC 29418

Register Here:

https://fs30.formsite.com/wingsforautism/0px4cerbuj/index

Visit arcsc.org for more information.

Celebrate Developmental Disabilities Month!

Developmental Disabilities Awareness Month 

March is Developmental Disabilities month. We are celebrating the accomplishments and contributions of people with developmental disabilities. Developmental Disabilities (DD) are defined as a group of conditions caused by physical, learning, language, or behavioral disabilities. 

To celebrate, Able SC is recognizing the achievements of some accomplished people with Developmental Disabilities: 

Temple Grandin

Temple Grandin is an American professor of animal science who has autism. She is a well-known advocate for people with autism and has written many books on the topic, including "Thinking in Pictures" and "The Autistic Brain." Grandin experiences ways of thinking that others do not, and as a result, Grandin may behave, communicate, and learn in ways that are different from other people. Grandin has been recognized for her contributions to the field of animal science and for her advocacy for individuals with autism.

We honor Temple Grandin as a part of Developmental Disabilities Awareness Month.

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Howie Mandel

Howie Mandel is a Canadian comedian, actor, and television personality who has attention-deficit/hyperactivity disorder (ADHD). He has spoken publicly about his experiences as well as the strategies he has used to manage his disability. As a person with ADHD, Mandel experiences symptoms relating to attention, hyperactivity, and impulsivity, which causes impairments in behavioral areas. Mandel has also been a strong advocate for mental health awareness and support. 

We honor Howie Mandel as a part of Developmental Disabilities Awareness Month.

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Maysoon Zayid

Maysoon Zayid is an American comedian, writer, and disability advocate with cerebral palsy. As a person with cerebral palsy, Zayid experiences symptoms that affect muscle control caused by brain development differences. She has used her platform as a performer to raise awareness about disability issues and promote greater inclusion and accessibility for people with disabilities. As an American-Palestinian, Zayid is also the founder of the New York Arab American Comedy Festival. She is known as one of America's first Muslim women comedians. 

We honor Maysoon Zayid as a part of Developmental Disability Awareness Month.

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Lucy Hobbs Taylor

Lucy Hobbs Taylor was an American dentist with learning disabilities. In the 1860s, Lucy became the first woman to earn a dental degree and practice dentistry in the United States. There is limited information about Taylor’s disability. We do know that the 1860s was a difficult time for people with disabilities, as many found themselves sent away to institutions. Taylor likely experienced difficulties in her education stemming from discrimination against her disabilities. Taylor's determination and success have symbolized empowerment for people with learning disabilities. 

We honor Lucy Hobbs Taylor as part of Developmental Disability Awareness Month.

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Do you enjoy learning about disability history? Do you want to learn more? Consider supporting us as we continue to serve people with disabilities by educating the community about the accomplishments of disabled advocates! 

Support Able SC

Save the Date: Advocacy Day for Access & Independence

April 25, 2023

10 AM - 12 PM

SC Statehouse & LIVESTREAM

This year's event is planned with hybrid options, where you can participate in person or online. Participate with us at the Statehouse or anywhere in the world via our Livestream online! 

People with disabilities face unnecessary and discriminatory barriers to transportation, housing, and healthcare. Advocacy Day for Access and Independence will call on South Carolina lawmakers to unlock these barriers! 

We seek to improve the lives of South Carolinians with disabilities by opening our communities up to accommodate disabled and non-disabled people, together! 

Register for Advocacy Day for Access & Independence!

Join us and our official event Emcees, Dori Tempio of Able South Carolina, and Will Farrior of South Carolina Developmental Disabilities Council! 

We will be at the SC Statehouse with speakers on the steps, calling on our lawmakers to make SC Barrier Free 

Register for the event at the following link to receive updates: https://unlockingbarriers-sc.org/register/ 

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Not only will we be in person at the SC Statehouse, but we will also be streaming the event live for you to watch from anywhere in the world!

Dr. Lamondre Pough of Billion Strong will be acting as our virtual Emcee! Dr. Pough will be on-site, accompanied by experts on disability, ready to ask your questions during the event following each issue area presentation. 

Do you have a question you'd like to ask about Discrimination, Transportation, Housing, or Healthcare Access for people with disabilities? 

Send it to us in the chat feature of our YouTube Livestream during the event, and your question might be selected (you must be logged in to YouTube to use this feature)! 

Register for the event at the following link to receive the Livestream link: https://unlockingbarriers-sc.org/register/ 

Advocacy Day for Access & Independence is brought to you by our South Carolina Access & Independence Network Stakeholders: 

• Able South Carolina 
• AccessAbility 
• Adult Enrichment Centers- Rock Hill 
• Babcock Center 
• Beyond BASIC Life Skills 
• Brain Injury Association of South Carolina 
• CarolinaLIFE 
• ClemsonLIFE 
• The COMET 
• Disability Rights SC 
• Equip Leadership Group 
• Family Connection of SC 
• Gullah GeeChee Chamber of Commerce 
• Hire Me SC 
• Lions Vision Services 
• Mental Health America, SC 
• National Federation of the Blind of SC 
• Palmetto Animal Assisted Life Services 
• SC APSE 
• SC Assistive Technology Program 
• SC Association of the Deaf 
• SC Developmental Disabilities Council 
• SC Project SEARCH 
• SC Spinal Cord Injury Association 
• SC Statewide Independent Living Council 
• SC Vocational Rehabilitation 
• SC Youth Leadership Forum 
• Thrive Upstate 
• Together SC 
• United Cerebral Palsy of SC 
• University of South Carolina School of Medicine- Center for Disability Resources 
• University of South Carolina College of Arts and Sciences Collaborative on Race 
• Walton Options for Independent Living 
• Women's Rights and Empowerment Network 
• Work in Progress Inc. 
• York CAN

Freeze Warning! Prepare for Winter Weather!

Winter weather is coming 

to South Carolina! 

Cold temperatures below freezing are in our forecast. Be sure to know what to do when cold weather strikes!

Check out this Easy Read Cold Weather Safety tool.  

Stay indoors when possible: 

• Dress in layers of loose-fitting, warm, protective clothing.  
• Stay updated on your local weather by listening to television or radio news. 
• Keep your pets inside. 
• All other animals should be sheltered and supplied with fresh, non-frozen water.  
• Remember to eat regular, nutritious meals. 
• Stay hydrated by drinking water as well as warm broths and juices. Caffeinated drinks and alcohol should be avoided as they cause dehydration. 

If you go outdoors: 

• Again, dress in layered, loose-fitting clothing; add a pair of gloves or mittens as well as a hat. Your outer layer of clothing should be water-repellent.  
• Wear a scarf or muffler over your mouth to protect your lungs from the cold air.  
• Avoid spending long periods of time outside as that may increase your chance of developing hypothermia or frostbite. 
• Stay dry while outdoors. If your clothing or any part of your body becomes wet, it is time to head indoors to warm up and change clothing. 
• If you must work outside, avoid overexertion as this can be dangerous in extreme temperatures.  
• Take great care when walking on snowy, icy sidewalks.  
• Avoid walking to your destination; use public transportation or request-a-ride apps if you do not drive. 

Learn more: Red Cross, How to Prepare for Winter Emergencies 

803.779.5121 | advocacy@able-sc.org 

The Power of You!

No one knows more about what you need than you do. 

Learn how to make your voice heard!

Learn all about your rights and how to effectively advocate 

for yourself and also for others in the disability community.

Register here for this free training!  

Online: 

March 20  from 3 pm to 4 pm

OR 

In Person at Columbia & Greenville Offices: 

March 21  from 3 pm to 4:30 pm

Registration will close the day before the training. 

For questions, contact Dori at dtempio@able-sc.org. 

Best Spinal Cord Injury Advice

March 2, 2023

NEW ISSUE

Alvaro Silberstein Creates a Better Way to Wheel the World

A trek through the mountains of Patagonia opened Alvaro Silberstein’s eyes to the power and possibilities of traveling through remote regions as a wheelchair user. When he got back, the C5-6 quad started building a company that would make it easier for others to access their own transformative travel experiences.   

PRO TIPS

Best Advice for People with SCI from People with SCI

The best advice on how to live with a spinal cord injury comes from those with experience. We talk with seven wheelchair users who’ve been disabled for more than 25 years about the best advice they’ve given and received on a variety of subjects like staying healthy, dealing with doctors, coping with hard times and more.  

TRIBUTE

New Mobility Writer Richard Holicky

New Mobility’s longest-tenured and most prolific freelance writer, Richard Holicky, died in January. We look back at his life and legacy of articles that covered a wide range of topics, including peer support, wheelchair users escaping nursing homes, family dysfunction and much more. “He explored difficult subjects like pain and depression honestly, but he always held space for hope,” says NM Publisher Jean Dobbs.  

Click here to read more of this issue. 

New Mobility is the member publication of United Spinal Association, whose mission is to improve quality of life of people with spinal cord injuries and disorders. It's free to join United Spinal, and members may receive New Mobility magazine for free for one year. Join here.

Join us for Empower Hour!

EMPOWER HOUR 2023 

Now available in-person and online! 

Peer Networking - Discover your power!

  

Have a disability? Want to build your support network? Empower Hour is led by your peers and meets to discuss independence, share resources, make new friends, and give support to each other. Empower Hour is a great chance to connect with others. 

If you are interested in participating in either the online or in-person support group, please RSVP by email to dwheeler@able-sc.org or by calling 1-800-681-6805, TTY: 803-779-0949 at least one day before the meeting. 

To make a request for an accommodation based upon disability, for either the in-person or online Empower Hour, please call us at 800-681-6805 or email at dwheeler@able-sc.org a week before the event. 

Empower Hour Online: 

Every Thursday from 1 pm to 2 pm.

Empower Hour In-Person: 

Monthly from 4 pm to 5 pm 

in our Columbia and Greenville Offices 

March 16

April 20

May 18

June 15

July 20

August 17

September 21

October 19

November 16

December 14 

To ensure safety people attending Empower Hour in person must have their temperatures checked at office front doors and wear a mask. The number of participants will be limited to allow for social distancing. 

Able South Carolina

720 Gracern Road Suite 106

Columbia, South Carolina 29210

803.779.5121 | advocacy@able-sc.org