Medical-legal partnerships, such as the Pediatric Advocacy Clinic with Michigan Law School and CS Mott Children’s Hospital, address the social conditions that affect the health and well-being of people and communities. This article follows three patients through their medical-legal partnership experience.
Doctor’s Orders: Call Your Lawyer
By Katie Vloet
April 30, 2015
“Chrystal Zuniga recalls a time, not long ago, when her daughter could say mom. ‘It was nice,’ she says. ‘But now it’s just not there anymore.’
Her daughter, Savannah, is 8 years old and has Rett Syndrome, a neurological disorder, as well as DiGeorge Syndrome, a chromosomal disorder that affects her internal organs. Each condition is rare on its own, and the combination is even less common—with odds of about 1 in 34 million for a girl.
Chrystal lists what her daughter can do: grunt to communicate, eat with her hands and sometimes a spoon, stand, turn on Mickey Mouse Clubhouse, crawl, stand on her head. And she talks about what Savannah can’t do: play with toys, say words, eat with a fork or knife, get dressed, climb stairs without a railing, use a toilet. Large blood vessels were wrapped around her esophagus when she was born; this was repaired when she was 4, but she still has had some difficulty with swallowing, making it hard for her to gain weight. ‘I pretty much take care of her 24/7,’ Chrystal says while sitting next to Savannah on a couch at their house in Jackson, Michigan.
Savannah bounds up suddenly and then crawls across the hardwood floors. Her younger sister has left a door open, and open doors are intolerable for Savannah. She closes it, walks back, and sits next to her mother, seeming slightly calmer.
The job of caring for Savannah is exhausting, to be sure, but the situation was made far more frustrating for Chrystal in the past year and a half. Savannah was doing better—or, at least, not regressing as quickly—thanks to speech, occupational, and physical therapies. She could hold objects with greater ease, she generally walked rather than crawled, she could make more sounds than just ‘eh.’
Then her Medicaid managed care plan began denying coverage of those treatments. She was still receiving some therapies at school, but not as much as her pediatrician, Dr. Joseph Zickafoose at the U-M Health System, thought she needed. ‘They were using criteria to deny coverage that are used for adults but that should not be applied to children,’ Zickafoose says. He and his staff appealed, to no avail. ‘I was incredibly frustrated.’
Zickafoose knew the family needed help of another kind. He told Chrystal to call a lawyer.”