HOW CAN WE EMPOWER CHILDREN WITH MULTIPLE disabilities?
Together, we can help empower children by removing as many barriers as possible. But, accessibility is costly.
You may not even be aware of some of the barriers children like Nikhil face. Often, simply accessing their communities can be a challenge.
Nikhil loved to watch kids playing baseball at Bedford Village Park. As he became older, it became very difficult to push his everyday wheelchair in the grass to get closer to the field. Having an all-terrain adaptive stroller at the time would have made things so much easier, but a price-tag of $5,000-$6,000 is not a small investment. In fact, for most families it is simply not affordable, and items for daily living are of higher priority.
A patient lift and a wheelchair van were two high-priority items for us. As Nikhil grew, it required two people to lift him to avoid injuring ourselves. We lifted him into and out of his wheelchair at least 8-10 times every day just for activities of daily living. There was no question that we needed some adaptations to help us care for him. The wheelchair-accessible van allowed us to easily take Nikhil to school, medical appointments, and the community. Having the accessible van allowed us to wheel Nikhil directly into and out of the van in his wheelchair without having to lift him. This van was a luxury, as modifications to an existing van cost up to $25,000 while a fully modified van can cost up to $70,000.
When Nikhil's weight approached 90 lbs., caring for him in our home required frequent lifting, which was beginning to cause physical strain on us. When Nikhil qualified for a motorized ceiling lift, transferring him in and out of his wheelchair to the bathroom and his bed was far easier for us and much more comfortable for him. It was life-changing for our day-to-day lives and most parents of children with needs like Nikhil's would definitely agree.
While NY offers financial assistance for adaptations, families are permitted to apply for one adaptation at a time and the process for approval can take over one year. This adds a considerable amount of stress on the families and their daily living.
Medical insurance does not offer financial assistance for any home or vehicle modifications. A child qualifies for one wheelchair every 3 years and items such as adaptive strollers and bikes are not covered because they are considered "leisure items". The initial submission for equipment often results in a denial, leaving parents to embark on a lengthy appeal process.
Through Team Nikhil, we hope to gift adaptive equipment to families in NY who may have limited insurance benefits, have been denied adaptations by state funds, have a high medical or financial need, or wish to improve the quality of life of their child with a piece of equipment for leisure activities.
Last year, we partnered with LGS foundation to gift our wheelchair-accessible van to another family. The family sent us a beautiful picture and note about how they were finally able to go out as a family to an aquarium and could travel to medical appointments without lifting their daughter in/out of the car. It was one of the most rewarding experiences for us and inspired to continue to help other families.
You can help us attain this goal by contributing below!
