Perhaps you have experienced the snow packed, ice-covered sidewalks of Summit County, Colorado. You crunched your way along annoyed, but never thought much of it after. Imagine you approach the same treacherous sidewalk, only this time you are in a wheelchair. For those living with disabilities relying on mobility and other assistive devices, such a sidewalk is an impassable obstacle, and the unfortunate daily reality for much of the year in our winter-laden towns. No simple walks to morning coffee. No easy access to run errands or get to your doctor’s appointment. Nothing is a simple task.
Meet Leo Santos, a 26-year-old Summit County local who understands such challenges better than most. Since the age of three, Leo was brought up in our own Colorado mountains and knows the life of long winters in a rural town, but at the young and healthy age of sixteen his perspective would change. What started as joint swelling and pain progressed into the debilitating chronic condition known as gout. The disease became so severe it limited Leo’s physical mobility and forced him into a wheelchair. In 2018 Leo developed osteomyelitis, an infection deep in the bones of his left foot. The infection required immediate life-saving treatment, transfer by ambulance to Denver, and intensive care. Leo returned home to Summit as an amputee.
This was a dark time for Leo, now further limited in mobility and relying on in-home nursing care for recovery, an unusual fate for a young man. It was during this recovery Leo’s nurses, provided through Bristlecone Health Services, suggested he reach out to the NorthWest Colorado Center for Independence. After constant prodding from his caregivers, Leo reluctantly agreed to explore the program. The rest was life-changing.
The NorthWest Colorado Center for Independence (NWCCI) is a non-profit organization dedicated to helping individuals with any disability get their independence back. NWCCI serves youth, adults, and seniors alike, connecting them (consumers) with resources including independent living services, housing, transportation, assistive technology, and employment opportunities. Their only requirement? Be a willing participant and have at least one goal toward living independently. The organization has their headquarters in Steamboat Springs, CO, but serves individuals across North West Colorado, including chapters in Craig, Grand County, and Summit County. NWCCI is supported by grants and donations and offers services free of charge to their consumers.
Leo recalls the anger and frustration of his new reality post-amputation and his own reluctance to do anything. Leo remembers the day he decided to make a change, stating, “I can sit here and be miserable or get back out there and do what I love”. He instantly made his first goal: to physically leave his house. It was here he met Carlos Santos, a staff member of NWCCI and now dear friend, who helped Leo accomplish his first goal. Leo fondly recalls his first outing with NWCCI, a group trip to go painting in Breckenridge, and then to Downstairs at Eric’s for pizza and games. Goals were met, a community was found, and life-long friends were made that day.
Despite Leo’s improved outlook with his newfound community, he was not spared of continued challenges. In Fall of 2019 Leo became a double amputee. In addition to another devastating change, he continues to live with intense chronic pain related to gout. He describes his journey away from addictive pain medication and commitment to being free. Leo confessed he does not consider himself to be strong or tough but has learned to deal with it in his own way. Leo hopes to receive his first prosthetic leg this March.
Many challenges face those living with disabilities in the High Country. Anyone needing a prosthesis or wheelchair must travel to Denver for fittings and supplies. Transportation which accommodates disabilities is an ongoing challenge, both with lack of properly adapted vehicles and volunteers to drive them. As the COVID-19 vaccine becomes available to this population and the seniors NWCCI serves, transportation to receive the vaccine is a major concern, as well as getting members on the waiting list. NWCCI hopes to reduce this obstacle. Other challenges outside of mobility include isolation among the disabled and elderly, long winters, and lack of general resources. Additionally, Leo brings to light the continued need for American Disabilities Act (ADA)-compliant housing, a regional challenge even for those without disabilities.
After almost three years as a consumer of NWCCI, Leo now proudly serves as the NWCCI Summit County Youth Coordinator. Leo hopes to inspire and connect with youth by sharing his own story and continued struggles. This year Leo will help plan and attend the Youth Leadership Forum, an annual conference which draws in youth from all over the state and provides education about ADA rights, being a self-advocate, and ultimately providing an opportunity for youth to transition independent from their parents. The conference will be held virtually this year. Leo gives a shout out to the other local programs supporting the disabled community in getting out on the mountain, such as the Keystone Adaptive Center (KAC), and Breckenridge Outdoor Education Center (BOEC).
“NWCCI staff and consumers are here to support anyone who is ready. We are willing to help and teach you if you are willing to help yourself,” he says. Leo stands firmly by this statement, saying they are not intrusive, but rather they are here with a supportive like-minded community with resources for independence when you are ready.
Even the smallest of goals accomplished can change a life Leo explains,
“You don’t have to go anywhere; you can just go outside and sit in the sun. The better you feel the more you will want to do.”
Programs of NWCCI are spread much by word of mouth through consumers. More information can be found on their website at https://www.nwcci.org/. The organization is open to new consumers, volunteers, and donations. Opportunities for connection and support are available to all individuals including virtual gatherings. NWCCI is committed to supporting individuals living in their own homes and the communities they love, regardless of age or disability.
To learn more about the United States’ largest minority group and the world of disabilities, view the inspiring true Netflix documentary Crip Camp: A Disability Revolution. Produced by Barack and Michelle Obama’s production company in 2020, Higher Ground Productions, Crip Camp tells the true story of a group of summer campers in the early 1970’s and their fight for recognition and civil rights. View the trailer here.
Ruth Nash is a second-year family nurse practitioner student at Colorado University, Anschutz Medical Campus. Born and raised in Cleveland, OH, Ruth attended Hocking College earning her Licensed Practical Nurse Diploma and licensure, followed by an Associates in Applied Science and Registered Nurse licensure, then completing a Bachelor of Science in Nursing from Ohio University. From the New England Appalachians, to the Midwest, and now here in the Colorado Rockies; Ruth has served in long-term care, bariatric surgery, pediatrics, special-needs adult programs, youth summer camps, and in the emergency room. Ruth lives full time in Keystone, CO and currently works in the emergency department at St. Anthony Summit Medical Center. Outside of the ER and pursuing an advanced practice license, Ruth enjoys mountain biking, hiking, skiing, rafting, art, and teaching barre fitness at a local dance studio.