Older Posts
It doesn’t matter your circumstances, anyone can be a successful disability advocate. All you need is a voice and an important issue, and Larry Lindstrom’s story exemplifies this perfectly. He fought one of the most unfair laws to limit power wheelchair-use of residents in nursing homes (in New Jersey) and won.
Instead of accepting the law as status quo, read how Lindstrom reached out to the right people for help in his fight and witnessed the magic that comes from successful disability advocacy.
Paralyzed in His 60s
The world can fall out beneath you when you least expect it. This is what happened to Lindstrom, who for the majority of his career worked as an instructor at Rutgers University helping people with disabilities learn how to use public transportation.
He was suddenly a candidate for his own teachings after he was paralyzed in a car accident in 2021 at 66 years old when the car he was driving hydroplaned, and he became a C4 incomplete quadriplegic as a result. And since he was injured during Covid, it was difficult for him to transition home successfully.
“I could not live independently,” says Lindstrom plainly, “and as a result my apartment was vacated.” Never getting a chance to try a power wheelchair in rehab, he was admitted to a nearby nursing home for long-term care and shortly after he was told he could not have a power wheelchair in a nursing home, as Medicaid allowed a private company to decide if he needed a power wheelchair and he was consistently denied.
Their argument was that he did not need a power wheelchair since aides were present and could push him whenever he needed to go somewhere, but as any power wheelchair-user knows, this is not independence. “I accepted that nursing homes provide wheelchairs. When I realized I needed a power chair I became involved in trying to change the law. I cannot move a manual chair. Without the power wheelchair I am not able to get around the nursing home.”
Ready-Set Legal Battle
This is when Lindstrom decided to call in the big guns – disability advocates Jonathan Sigworth, a C6-7 quadriplegic, and SPINALpedia founder Josh Basile, Esq., a C4 quadriplegic. “Jonathon and Josh helped with the fight,” says Lindstrom. “I initially contacted the United Spinal Association for support for ideas on how to get a power wheelchair.”
Lindstrom finally reached out to a local newspaper, The Asbury Park Press, in May 2024 which ran a frontpage story, with his story picked up by other markets. He also reached out to Disability Rights New Jersey, who helped provide legal assistance. “The fact that I had not gone out in the community in 3 years was a factor in winning the case,” says Lindstrom. Within a few days, Lindstrom had received a loaner power wheelchair.
“What was important (in getting a power wheelchair) was that to travel around the nursing home, I would need an aid to push me to my destination and an aide to push me back. There would always be the possibility that I could be stranded in the location and many times there weren’t enough aides so I was stranded in bed.”
Just because Lindstrom received a power wheelchair did not mean however it was a done deal for everyone who needs a power wheelchair in a NJ nursing home. Instead, a bill needed to be passed, which finally happened in February of this year. Disability advocates, along with congressional support from the Senate Health, Human Services and the Senior Citizens Committee, came together to pass a bill that expanded motorized wheelchair Medicaid coverage to nursing home residents.
“This wasn’t just for me to get a power wheelchair. I wanted to help others as well,” says Lindstrom. He has been enjoying using a power wheelchair for over eight months, and it has completely changed his life and outlook. “A power chair allows me to go where I want when I want. I navigate elevators and power doors to get to activity rooms and the outside courtyard. I will be able to travel around a community when I am located near stores and businesses.”
Now fully mobile and a disability advocate, Lindstrom has big plans and the first step is moving out of the nursing home. “I plan to transfer to a location that has a business district close by. Currently the nearest store is two miles away. I want to be able to use my wheelchair to go places outside of the nursing home and possibly to go on public transportation.”
by Tiffiny Carlson, Communications Manager at SPINALpedia
— Disability Advocacy Resources from United Spinal
ideas@spinalpedia.com
