When 14-year-old Ryan Hribernick of Shoreline, Wash., started having trouble propelling his manual wheelchair, his healthcare team at Seattle Children’s recommended he add power-assist devices to give his wheels an extra boost.
But instead of approving the modification, Washington state – which pays for a portion of Ryan’s medical equipment through Medicaid – offered him a motorized wheelchair.
Not a good solution, says Susan Apkon, MD, chief of rehabilitation medicine at Children’s.
“Pushing a manual wheelchair helps Ryan maintain upper body strength and overall health,” says Apkon. “He needs power-assist wheels to safely go up and down ramps and keep pace with his friends, but he doesn’t need a motorized wheelchair to do this.”
Ryan’s mom, Kristina Ray, was concerned about the social and emotional impact on her son, who has cerebral palsy and is successfully navigating life – and middle school – with a disability. “More than anything, Ryan wants to fit in,” she says. “Putting him in a power chair would make him stick out.”
And then there’s the financial fallout for the family. Ryan’s twin brother, Cole, also has cerebral palsy and uses a wheelchair. Kristina can barely squeeze her growing sons and their equipment into her minivan – not to mention her house – as it is. To fit a power chair for Ryan, they would they need a new car – and possibly a new place to live.
“Dr. Apkon and others at Children’s wrote letters, and we submitted documentation showing exactly why Ryan needed the power-assist wheels and not a motorized wheelchair,” says Kristina. “The state denied our appeal.”
That’s when Scott Crain – a lawyer for the Washington Medical-Legal Partnership (MLP) stepped in to help.
A little goes a long way
“The state’s job is to control utilization of healthcare benefits and maintain the budget,” says Crain, who works full-time with families from Children’s, Odessa Brown Children’s Clinic and Harborview Medical Center’s Children and Teens Clinic. “They’re not going to go to bat for every kid who needs something that they don’t ordinarily cover.”
That’s the purpose of the MLP – to go to bat for low-income families and help them overcome civic legal barriers that threaten their health and wellbeing.
“A little bit of legal advocacy can go a long way,” notes Annette Quayle, who coordinates the MLP, which is housed in Children’s Protection, Advocacy and Outreach Program. “Scott knows the system, he knows the legal requirements and he knows our families. His involvement can make a huge difference.”
Children’s launched the MLP in 2008 in collaboration with Northwest Justice Project and Harborview. In 2011, Sea Mar Community Health Centers joined the program. MLP employs two full-time attorneys – Scott’s colleague Amy Alexander works with Sea Mar patients – and just hired a third to work with families of Children’s patients with poorly controlled diabetes.
Attorneys from local law firms also donate their time and services.
The Washington MLP is the only medical-legal partnership in the Pacific Northwest, but it is part of a network of 97 such partnerships in the United States that serve 54,000 patients at 275 healthcare institutions.
Crain’s cases involve insurance issues (like Ryan’s), and also things like income stability, housing, education and personal safety (the program does not represent families in criminal or medical malpractice cases).
In addition to providing direct legal counsel to families, Scott also:
- Trains providers, residents, social workers and other clinicians to screen families for signs of unmet legal needs
- Creates tools and provides behind-the-scenes advice
- Advocates for system-wide legal changes that improve the health of groups of kids: Recently, Scott initiated a mediation process that led the state’s Medicaid program to start paying for an autism therapy, giving 9,000 low-income families access the treatment.
Legal backup for social workers
The MLP team works closely with social workers at Children’s.
“Our patients don’t live at Children’s – they live in their communities, where all sorts of variables can negatively affect their health,” says Cassy Aspinall, a senior social worker at Children’s. “For instance, a family’s home might have mold that makes their child sick, or a child could be blocked from getting the services they need in school.”
Before the MLP, says Aspinall, “We would construct beautiful, emotionally compelling letters to landlords and schools with social and medical details about why their actions were putting a chronically ill child at risk,” she says. “But without citing Washington state code, we could not compel change.”
The MLP fills those blanks with critical legal details, notes Aspinall.
“When social workers run into roadblocks with their advocacy – because someone’s not taking them seriously or because they’ve pushed as far as they can within the scope of their job description – then it’s appropriate for a lawyer to step in,” says Crain.
The MLP has worked directly with more than 400 families since 2008, and Crain gets about 16 new referrals each month. “Most of the families we serve would not have access to legal services if we weren’t here,” he says.
A happy ending for Ryan
For Ryan’s case, Crain spent about 25 hours talking to experts, researching power-assist technology and preparing legal documents before representing the family at a hearing (he says it’s not unusual for him to spend up to 100 hours on a case).
“Scott did his homework, and it really showed at the hearing,” says Kristina. This time around, the state agreed to cover the power-assist conversion.
“Ryan was so happy when I told him – he just had a huge smile on his face,” says Kristina.
Ryan’s healthcare team was celebrating, too. “This family had been denied a necessary piece of medical equipment multiple times,” says Apkon. “Without Scott, they probably would have been denied again.”
For Crain, working with families in need is a calling. “I went to law school because I wanted to work for social justice,” he says. “This program lets me do that – we have a real impact on people’s lives and their health.”
If you’d like to arrange an interview with Kristina, Scott Crain or Dr. Apkon, , please contact Children’s PR team at 206-987-4500 or at firstname.lastname@example.org.