Being Independent at iLevel® in Winnemucca
By Madonna Long
Monday, May 17, 2019
Sometimes a little bit of sunshine comes through your door. In January of this year I was at FedEx office in Winnemucca, Nevada, a small mining town in Northern Nevada close to Battle Mountain where I live. Our rural mountain sagebrush towns are 400 miles from Salt Lake City and 230 miles from Reno, and this makes having the right equipment for complex rehab technology consumers difficult, if not sometimes impossible. In addition, there is often a disconnect, as consumers don’t have information on the newest technology and equipment to help them, since they live in rural areas.
I realized how true this is on my visit in January to the FedEx office. As I entered in my pink iLevel® Power Wheelchair, I was fully elevated. This is how I prefer to travel when I am going from place to place. Inside, a woman said to me, “I wish my daughter had a wheelchair like that.” I said back to her, “What is your daughter’s disability and what kind of a wheelchair does she currently have?”
She said that her daughter, Sarah, was 15 years old, and she had cerebral palsy. Sarah used a manual chair she got three years ago. Cheryl, the mother, showed me the photo of this amazing little red-headed girl in her wheelchair. It was a stroller wheelchair that Sarah had clearly outgrown. I realized that Sarah could not operate this type of wheelchair independently. I told Cheryl that we were going to get Sarah a new fitted power wheelchair that works for her needs.
Cheryl then told me that Sarah was using a donated power wheelchair at school. She showed me a photo of this cutie in a standard power wheelchair. This type of power wheelchair is not meant for a 15-year-old girl who is in the chair all day, it is meant for senior citizens with limited mobility. So, although I was not happy with this type of power wheelchair, I realized she could operate a new power wheelchair efficiently and independently. So, I went to work.
I tweeted my frustration on how Sarah needed the right wheelchair to my friend Senator Pat Spearman. One hour later I received an awesome email from the acting Nevada Medicaid Administrator on how they could help with Sarah’s problem. So, we went to work on a plan to get Sarah her new power chair customized to her.
I called my friend Maxine who is an amazing provider in Las Vegas, and I explained to her Sarah’s story. She put me in touch with NuMotion in Reno so we could make sure to follow the process to get Sarah’s power chair approved. Sarah also need to be evaluated by a therapist, so I called my friend Mary Bengoa, a physical therapist at Battle Mountain General Hospital, to evaluate Sarah. Mary got Sarah in and I brought my iLevel Power Wheelchair to her assessment, so we could see how she operated it. She drove it like a champ.
In May, Sarah received her first ninja turtle green (as she puts it) Edge 3 with iLevel, specially fitted to her. Seeing Sarah’s face and her smile meant so much to me. On that following Monday, Sarah for the first time in her life, independently boarded the school bus, went to school and was at iLevel with her friends.
Many people in rural areas, like Sarah’s family, are unaware of new technologies and that they qualify for this type of equipment. I am so happy that I went to FedEx in January, because it means the world to me that one little girl now has the independence she deserves. Her mom says I am an angel, but it was not just me who helped provide Sarah her independence, it was through the help of many people. An excellent provider who had knowledge of how to document what Sarah needed. It was Nevada Medicaid who helped us through the process and understood that Sarah needed a new chair that fit her needs. It was the complete complex rehab technology solution from Quantum with iLevel seat elevation that allows Sarah to transfer independently every day. It was an amazing physical therapist! And, it was me, who thinks everyone deserves mobility and independence. Through teamwork, we helped Sarah become independent and now she can be active and independent in her life at iLevel.
About Madonna: Madonna Long works as a disability advocate to educate policymakers and congressional leaders on disability issues. She is a mother to four children and lives life on her terms, despite a spinal cord injury. Click here to learn more about Madonna.