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Outgoing NPR Health Policy Correspondent Reflects On Her Favorite Story

MARY LOUISE KELLY, HOST:

You meet a lot of people in a 40-year reporting career. That is how long Patti Neighmond has worked for NPR, much of it with our science desk. As she retires this month, she looks back on one person who stuck with her - a young woman named Jenny Langley, who was paralyzed from the neck down. Her fight with the state of Georgia in the early '90s made a difference for countless people with disabilities like hers. Here's Patti's reflection.

PATTI NEIGHMOND, BYLINE: I've always felt that as a journalist, it's a privilege to be allowed into people's lives and hear their stories, especially stories like Jenny Langley's. I met Jenny when she was 28 and living with her sister's family in Atlanta, Ga. Jenny takes long breaths from the ventilator so she has enough oxygen to speak.

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JENNY LANGLEY: And if I didn't have my family and friends, I wouldn't have the will to go on and have fun and do what - they make life fun for me.

NEIGHMOND: The day I met her, Jenny was seated in her wheelchair at the dining room table with her sister. Jenny was all smiles, joking that she sounds like Darth Vader when she breathes. But then she tells me about the diving accident that paralyzed her from the waist down at 14 and, 10 years later, the car accident that paralyzed her from her neck down and left her dependent on a ventilator. For years, her parents cared for her at home, but the costs were overwhelming. Eventually, they went bankrupt and lost their home. Her sister, Sheryl Langley, wanted Jenny to move in with her and her family.

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SHERYL LANGLEY: I can do the physical. I can do the love. I can do every bit of it. I can't come up with the money. Jenny is a very expensive young lady, through no fault of her own.

NEIGHMOND: Jenny had no choice but to go on Medicaid, which only paid for long-term care in a nursing home, and that scared her. She knew her roommates could be decades older and maybe demented.

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J LANGLEY: I would have laid in the bed all day with them. No contact with the outside world, nobody to talk to. And if I did get up, they wouldn't have let me go outside. And one of the most favorite things in the world to me - just to go outside and sit in the sun.

NEIGHMOND: Jenny and her family decided to fight the state's Medicaid policy. They partnered with the Shepherd Center, which specializes in spinal cord injury and cared for Jenny after her accidents. Together, they built a case to prove to the state of Georgia that it was cost-effective and more compassionate to allow Medicaid to pay for long-term home care. At the time, Mark Johnson was director of patient advocacy for the center. He took Jenny to the state Capitol, where she boldly approached and talked to lawmakers.

MARK JOHNSON: Her willingness to tell her story encouraged other people to tell their stories. And ultimately, that led to some policy change in Georgia.

NEIGHMOND: It took two years, but Jenny was victorious. In 1992, the state of Georgia changed its laws. It gave Medicaid recipients a waiver, a choice to pay for long-term care in an institution or at home. Only about five other states offered such a choice, but since then, Johnson says, a lot has changed.

JOHNSON: If you think about Jenny's story, it was almost 30 years ago. Through the efforts of more people advocating, every state has some form of waiver.

NEIGHMOND: Jenny was able to move in with her sister. The family cared for Jenny until she died in 2002 at just 40 years old. Sarah Morrison was Jenny's physical therapist. Today, she's president of the Shepherd Center and says that now quadriplegics can have a normal life expectancy, thanks to advances in technology. For me, the most poignant advance is one that could have helped Jenny - a diaphragm pacing system.

SARAH MORRISON: This is an electric stimulation that is implanted into your diaphragm muscle that helps you inhale, which is a much more natural way of breathing because you're breathing through your mouth, not having air forced through a tube into your lungs, which is what a ventilator essentially does.

NEIGHMOND: And Morrison says some people can go for years without using a ventilator, something that would have transformed Jenny's life. Even so, I remember Jenny as a self-possessed, grateful woman who relished life despite her disability and cherished the time she had with her boyfriend.

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J LANGLEY: He plays a piano in a band. Yeah, we like to go to Bennigan's and hang out, eat fried mushrooms, drink margaritas (laughter). He's a real nice guy. I've known him for years. He knows me, the real person. He doesn't see a wheelchair and a ventilator.

NEIGHMOND: Jenny is no longer with us, but her legacy is strong. And today, because of her effort and accomplishment, people with disabilities like hers now have greater power and choice over how they live their lives.

Patti Neighmond, NPR News. Transcript provided by NPR, Copyright NPR.

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