Lauren Messer beams as she's greeted by nurses and doctors at Children's Hospital Los Angeles' Rett Syndrome Clinic.
Lauren's mom, Sherri Brady, first got news that her daughter might have the rare, severe neurological disorder when she was 18 months old. A blood test when Lauren was 3 confirmed it was Rett Syndrome.
"It has taken away her ability to walk independently," says Brady, who manages all of her daughter's care. "It makes it very hard for her to use her hands functionally. Thankfully, she’s able to communicate, but she isn’t able to speak."
Brady feeds Lauren through a tube, helps her walk and watches out for the seizures associated with Rett.
"Sometimes they’re worse than others," she says. "Right now, we’re kind of in an in-between phase where she is having them at least weekly, unfortunately."
Brady brings Lauren to the Rett Syndrome Clinic once a month to help other families dealing with Rett. Right now, Brady could use a little more support herself.
In February, Lauren celebrated her 21st birthday, a milestone that presents new challenges as she ages out of many of the pediatric services she and her mom have come to rely on.
Women can live into their 40s and 50s with Rett Syndrome, but Brady is having a hard time replacing Lauren's pediatric team, which included a neurologist, an orthopedist, a gastrointestinal specialist, an eye doctor, a dentist, a physical therapist and an occupational therapist.
Families with children who have Rett, cerebral palsy, and other severe physical or cognitive disabilities often struggle to find quality care for their kids. That only intensifies when they age out of pediatric services they can get at school or through state-sponsored programs.
California Children’s Services provides support for therapies and equipment for low-income families with children who have a variety of serious medical conditions. There are more than 46,000 kids in the program in L.A. County, over 14,000 in Orange and Riverside counties, about 13,000 in San Bernardino County and abut 4,500 in Ventura County.
Children's Service has one person in each county (in Ventura it’s a part-time position) who helps kids transition from pediatric to adult care. The California Department of Health Care Services, which oversees the program, said in an email that it "believes that most children who qualify are identified and transitioned appropriately."
Brady says she doesn’t remember being contacted by anyone from Children's Services about helping Lauren with her transition.
Dr. Diane Tanaka runs Children's Hospital's My VOICE Adolescent Transition Program. She says doctors don’t feel prepared to care for young adults with so-called childhood conditions.
For example, she notes that until recently, kids born with congenital heart conditions weren’t expected to live to adulthood.
"Now, most of those children are making it to adulthood and [doctors are] like, 'We didn’t train in how to take care of these conditions, we trained with adult cardiac issues,'" says Tanaka.
The transition program at Children's helps families find the right care and trains kids how to manage their own conditions. Tanaka says the program has limited resources, limiting it to kids who can take charge of their own care.
Adults with disabilities
"There’s nowhere for our kids to go," says Maura Byron, mother of an 18-year-old daughter with cerebral palsy, says she also is struggling to find a new set of providers now that her daughter is coming of age.
"We’re getting left behind," she says.
"I hear that story over and over again," says Dr. Michelle Catanzarite, chief medical officer at Achievable, a community health center that specializes in the care of people with disabilities. She relates what her patients tell her about their troubles finding care: "'They wouldn’t see us because they say they don’t take people like me.'"
Dr. Catanzarite is proud that Achievable prioritizes care for people who would have a hard time finding it elsewhere. Fifty-six percent of its patients between 18 and 25 live with a disability, and she notes that among the clinic's patients with disabilities, there are about twice as many adults as there are children.
Still, Catanzarite says Achievable can only do so much.
"We’re at the point where we’re reaching capacity in the space that we’re in to accommodate new patients," she says.
And then there’s the cost
Finding care can be challenging for most people with disabilities, regardless of insurance. For people on Medi-Cal it’s even harder.
"In pediatrics, it's fine to be on Medi-Cal because there's lots of systems of care," says Tanaka. "You get to adult services, forget about it. You're now very, very limited where you can go."
The overlap on the Venn diagram of providers who are willing to take people with severe disabilities and those who accept Medi-Cal is small.
"Just because you’re a Medi-Cal provider, it doesn’t necessarily mean that you are able, willing or capable of treating a patient with special needs. That already limited list is now limited even more," says Sherri Brady.
When she finds specialists who both accept Medi-Cal and are willing to see Lauren, the waitlists to get in are often several months long, she says.
Part of the reason is Medi-Cal's low provider reimbursement rates, says Children's Hospital's Tanaka.
"I pay my plumber more than what you get from reimbursement from Medi-Cal," she says. "That’s why I encourage my young people who are able to work to work so they can get health insurance."
Lauren's support system
For now, Brady gets ideas and support from an online community of parents whose kids are dealing with similar issues.
Brady stays hopeful about getting Lauren what she needs.
"I made a promise to Lauren early on that her life was going to be full and that it was going to be the best that I could help her make it," she says.
Mother and daughter did get some encouraging news recently. Lauren’s pediatric neurologist has agreed to continue seeing her as an adult, and she’s found a general practitioner. But Brady continues to search for the rest of the health care team Lauren needs to manage her disease.
If you have a story about having trouble finding health care, contact Michelle Faust at firstname.lastname@example.org.