DISABILITY RESOURCES, PERSONALIZED
This guide is available as a PRINTABLE PDF: click HERE.
“AbleThrive is a one-stop platform for people with paralysis and their families that shares customized information and resources to adapt and thrive.”
My daughter, Beth, serves on the Board of Directors for this nonprofit, founded by her passionate friend, Brittany Dejean. “Quality connections and relevant information” drive this growing venture because “everyone deserves a chance to thrive!”
Adaptive Sports USA (formerly Wheelchair and Ambulatory Sports, USA)
“To engage, evolve, and empower individuals with a disability to be involved in adaptive sport through education, coaching and advocacy.”
Junior Nationals is the oldest continuously held competitive sports event for young athletes with physical disabilities and/or visual impairment in North America. Beth competed at the 2003 Junior Nationals in Connecticut.
Adversity 2 Advocacy Alliance
“Promoting and fostering the power of turning personal challenges into service to others with similar challenges.”
Jeff Bell, founder, hosts a radio show and podcast. Jeff interviewed me for his A2A Spotlight Podcast in August of 2018. The A2A site also includes mental health resources. “We help ourselves by helping others.”
American Association of People with Disabilities (AAPD)
“A convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities.”
The summer of 2006, Beth was one of six Congressional Grant Interns sponsored by AAPD and the Mitsubishi Electric America Foundation. She worked for then-Senator John Kerry and joined him on the Senate floor for the stem cell debate. After, she revisited the same summer program as a mentor for Grant Interns.
American Chronic Pain Association (ACPA)
“To facilitate peer support and education for individuals with chronic pain and their families so that these individuals may live more fully in spite of their pain.”
I joined a support group in Tiffin, Ohio, in the 1990s with a constant low-level headache. One of the ACPA steps recommended accepting the pain. I resisted that good advice until many years later in Boston.
Americans with Disabilities Act (ADA)
“Information and Technical Assistance on the ADA.“
This resource includes wheelchair ramp specifications that we used for our Tiffin home as well as a wide range of facts. At national conferences, Beth learned the history of the ADA from those who led the fight. She attended the 20th anniversary celebration of the ADA at the White House in 2010. For the 25th anniversary, she planned a successful diversity event for her law firm.
“Is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families.”
I volunteered in The Arc’s youth wing in the 1970s at the county and state level before I managed group homes in Ohio. The Arc website shares resources as well as contact information for local chapters.
Association of University Centers on Disabilities (AUCD)
“Is a membership organization that supports and promotes a national network of university-based interdisciplinary programs.”
Beth volunteers for this active organization which supports numerous programs that provide needed services. The website includes a Diversity and Inclusion Toolkit and the location of AUCD centers.
Challenged Athletes Foundation (CAF)
“Opportunities and support to people with physical disabilities, so they can pursue active lifestyles through physical fitness and competitive athletics.” challengedathletes.org
Through CAF’s Access for Athletes grants, Beth appreciated travel funds for one swim meet a year. “CAF believes that involvement in sports at any level increases self-esteem, encourages independence and enhances quality of life.”
Christopher and Dana Reeve Foundation
“Is dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy.”
Call a Reeve Information Specialist to ask questions, request a peer mentor, or to receive their free Paralysis Resource Guide. I’m a guest blogger, peer mentor, and regional champion for the foundation. The late Christopher Reeve directed the 2004 movie, “The Brooke Ellison Story.” Ellison was featured in 2002 billboards that said, “Quadriplegia at Harvard: A+.” Billboards that planted the seed of Harvard in Beth’s mind.
“Helps simplify the transition into life with paralysis.”
Beth met founder Josh Basile when he co-founded SPINALpedia. Determined2Heal provides “information and advice for people with spinal cord injuries, their families and friends, as well as rehabilitative adventures.”
“Created to connect families who suddenly have to deal with a spinal cord injury to people like them who have already been there.”
My guest blogs are included on Facing Disability, created by Thea Flaum of the Hill Foundation. They also produce professional videos. “Designed to help families cope effectively, resiliently and creatively with the changing realities of all their lives.”
Fishing Has No Boundaries
“Provides recreational fishing opportunities for all anglers with disabilities regardless of their age, race, gender, or disability.”
Fishing Has No Boundaries supports chapters across the country. My family looked forward to the annual event in Sandusky, Ohio, for three years in a row, with our friends in the Northwest Ohio spinal cord injury group. Firemen volunteered to lift participants with manual and power wheelchairs in and out of the boats.
Giving Voice to Depression
“To start healthy, healing conversations that reduce stigma, and promote understanding.”
Two sisters founded this nonprofit and host in-depth podcasts. The site includes the podcast about my story, “Guilt and Depression: Cindy Kolbe.”
Help Hope Live
"We support community-based fundraising for people with unmet medical and related expenses due to cell and organ transplants or catastrophic injuries and illnesses."
This nonprofit featured a lovely blog about my story (thanks, Emily!), and Beth and I met some of the friendly staff at the Warrior Moms summit. Contact Help Hope Live to learn the best ways to avoid loss of benefits while raising needed funds.
International Paralympic Committee (IPC) Swimming
“Athletes can have a physical, visual or intellectual impairment. Both male and female competitors, who are classified on their functional ability to perform each stroke, test their skills in freestyle, backstroke, butterfly, breaststroke and medley events.”
Official website of World Para Swimming. At the 2008 Paralympics in Beijing, 547 athletes from 62 countries competed in 141 medal events. World Rankings between 2002 – 2010 include Beth's swim times as high as third place in the S3 women’s classification.
Mitsubishi Electric America Foundation (MEAF)
“Investing in innovative strategies to empower youth with disabilities to lead productive lives.”
Co-sponsor of Beth's 2006 Congressional Intern Grant with the American Association of People with Disabilities. MEAF supports youth with disabilities through Leadership Development, Employment Preparation, and Ability Awareness.
“Our mission is to bring together current and accurate information on issues of interest to our community.”
My guest blogs have been published on this site. MobileWOMEN “believe that women with disabilities steer their own lives.”
National Association of Youth Leadership Forums
“To improve employment and independent living outcomes of youth with disabilities transitioning from high school.”
This site includes contact information for all of the chapters across the country for students with a disability. Beth credits the Youth Leadership Forum in Ohio (ohioylf.com) for introducing her to disability rights and connecting her to a dynamic community.
National Collegiate Athletic Association (NCAA)
“Dedicated to the well-being and lifelong success of college athletes.”
A 2008 article in the NCAA Champion magazine publicized a hopeful trend for swimmers with a disability. It featured four U.S. Paralympics National Team swimmers who also competed on varsity college teams, including Beth. She was a member of the Harvard Women's Swimming and Diving team.
“Helps people build resilience and find meaning in the face of adversity.”
Sheryl Sandberg’s nonprofit shares resources in the following categories: grief & loss; incarceration; health, illness & injury; raising resilient kids; abuse & sexual assault; resilience; and divorce & family challenges. In April of 2018, Option B published my first story.
“Assisting and supporting survivors of spinal cord injury resulting in quadriplegic paralysis.”
The Quad Foundation raises funds for activity-based therapy. The foundation also hosted the first Warrior Momz Summit/Walk & Roll on DC in March of 2018 to coincide with the end of Kay Ledson’s cross-country Warrior Momz Walk.
Rehabilitation Services Administration (RSA)
“To provide leadership and resources to assist state and other agencies in providing vocational rehabilitation (VR) and other services to individuals with disabilities.”
An Ohio RSA counselor helped Beth with driver’s training and the modified equipment to drive her car. Counselors also provide job training opportunities. Attending college out of state made Beth ineligible for RSA tuition assistance.
Shriners Hospitals for Children®
“Provide the highest quality care to children with neuromusculoskeletal conditions, burn injuries and other special healthcare needs within a compassionate, family-centered and collaborative care environment.”
Beth and I loved the Chicago hospital where we met with a large interdisciplinary team in the spinal cord injury program. We returned for follow-up visits over four years and highly recommend the Shriners Hospitals for outpatient or inpatient care.
Spaulding Rehabilitation Network
“Delivering compassionate care across the healthcare continuum to improve quality of life for persons recovering from, or learning to live fully with, illness, injury and disability.”
Spaulding achieved a “Best Hospitals” rank of #2 in the 2018 US News and World Report. Beth sailed in the Boston harbor through Spaulding's popular adapted sports and recreation program, and a wonderful Spaulding physiatrist, Dr. Ariana Vora, treated her elbow bursitis before the Beijing Paralympics.
“A social mentoring network and video archive that allows the spinal cord injury community to motivate each other with the knowledge and triumphs gained from our individual experiences.”
Brittany Déjean recruited Beth in 2006 to help develop the concept. Brittany co-founded SPINALpedia in 2007 with Josh Basile. When Brittany traveled to the 2008 Beijing Paralympics, she made video clips of Beth eating with chopsticks, swimming the backstroke, and getting help on a crazy ramp at the Temple of Heaven.
“A mental health nonprofit dedicated to helping real people living with mental illness.”
Sarah Fader and Allie Burke founded Stigma Fighters in 2014 to fight the stigma of mental illness, one story at a time. In 2018, Sarah Fader also launched Eliezer Tristan Publishing with co-founder Sarah Comerford. They publish books with
a focus on survival, including this memoir.
Struggling with Serendipity
“A mom on a mission to offer hope to those in crisis.”
My website includes a printable PDF of this resource list, signed copies offer, my weekly blog, book news, photo gallery, resource newsletter, and more!
Swim With Mike
“To provide financial resources for advanced education that pave the way for physically challenged athletes to overcome their tragedies and realize their full potential.“
Mike Nyeholt is Chairman of the Board. We learned about his scholarship fund through a mentee. Beth participated in their annual swim-a-thon at Stanford, grateful for help with her law school tuition from the Swim With Mike community.
This Is My Brave
“To end the stigma surrounding mental health issues by sharing personal stories of individuals living successful, fulllives despite mental illness.”
This Is My Brave hosts live shows across the country. Cast members share their stories on stage in front of a live audience through poetry, essay, and original music. Videos of the shows may be found on YouTube. I participated in the Washington, DC, This Is My Brave Show in November of 2018.
United Spinal Association
“Dedicated to enhancing the quality of life of people living with spinal cord injuries and disorders (SCI/D).”
Thank you, Northwest Ohio chapter, for the warm welcome after Beth’s injury. Membership in United Spinal is free and the national website offers a wide variety of resources.
“Promoting excellence in the lives of people with Paralympic-eligible impairments, including physical disabilities and visual impairments.”
U.S. Paralympics includes more than two-dozen sports, with elite, military, and community programs. For five years, Beth enjoyed the camaraderie of her talented teammates on the U.S. Paralympics Swimming National Team as she set 14 Paralympic American Records. A decade after retiring in 2008, nine remained.
“Promotes the culture of swimming by creating opportunities for swimmers and coaches of all backgrounds to participate and advance in the sport through teams, events and education.”
Local USA Swimming coaches are valuable swimming resources for children and adults with a disability. Our hometown coach dedicated countless hours to help Beth move more effectively in the water. I supported swimmers with a disability as Adapted Chairperson for Ohio Swimming. State websites offer additional information.
Wounded Warrior Project (WWP)
“To honor and empower Wounded Warriors.”
Beth’s roommate at the Beijing Paralympics was a young woman injured in the Iraq War who led the U.S. Paralympics team into the Bird’s Nest for Closing Ceremonies. Check out the WWP website to support wounded veterans.
YouTube Channel, Struggling with Serendipity
My Struggling with Serendipity channel shares my video about dealing with a new spinal injury plus my podcasts. I also gathered Beth’s how-to videos in a playlist on this channel; this includes putting her hair up in a ponytail, inserting contact lenses, opening a wine bottle, tying shoes, eating with chopsticks, and swimming.