Stories

Finding Legal Solutions to Health Barriers

Lawyers, doctors and donors collaborate to provide the services and benefits families need to raise healthy kids.

Attorney Scott Crain, Michelle and Ethan ShortAttorney Scott Crain (right with Michelle Short and her son Ethan) often meets with families where their child is being treated rather than in his law offices at the Northwest Justice Project. “Medical-Legal Partnerships are a great way to reach vulnerable families who need legal help, because they have to see their doctor even if they don’t have the wherewithal to see a lawyer,” says Crain.

Like many parents of children with complex health needs, Michelle Short found herself battling a stubborn bureaucracy to obtain a critical service for her son, Ethan.

Ethan, now 12, breathes through a tube because of a facial malformation. He needs a nurse within sight to clear or reinsert the tube if it becomes clogged or pops out at school. But just before Ethan started second grade, the school district assigned him to a school that had a nurse in the building but not in his classroom.

The time it could take for the teacher or another student to notice if Ethan was struggling to breathe – he can’t always communicate his needs – and for trained help to arrive would put him at grave risk. “It doesn’t take long before brain injury occurs,” says Short, who lives in Marysville. “Leaving Ethan without a nurse in the classroom would be a huge gamble.”

Ethan’s mom pleaded with the school district to restore nursing assistance, but the pushback was overwhelming even though the law was in her favor. “I felt like I was two inches tall and up against a brick wall,” she says.

Short seemed to have only two choices – both of them costly. She could hire an attorney and go to court or quit her job and assist Ethan herself.

"It’s amazing how many times there are legal solutions to health barriers. The MLP model helps those of us in healthcare connect the dots so families get the help they need."

— Dr. Ben Danielson

Riding to the legal rescue

Dr. Ben Danielson and Dr. Brian JohnstonThanks to a grant from the Robert Wood Johnson Foundation, Dr. Ben Danielson (left) of Seattle Children’s and Dr. Brian Johnston of Harborview Medical Center co‑founded the Washington Medical-Legal Partnership (MLP) in 2008. The program is one of about 300 MLPs in the country — and the only one in the Pacific Northwest.

But there was a third choice: the Washington Medical-Legal Partnership (MLP).

Based at Seattle Children’s, the MLP helps patients and families with rights to a service or benefit navigate the legal system to get the assistance they need. MLP attorneys battle for systemic change, train healthcare providers to be advocates, and provide free legal services to people like Short who hit a wall and need a lawyer by their side.

Short told Cassy Aspinall, a social worker at Seattle Children’s who works with Ethan’s craniofacial team, about her dilemma. Aspinall, who has MLP training, knew school districts must make reasonable accommodation for students with special needs and immediately referred Short to MLP attorney Scott Crain.

Crain, who had the Americans With Disabilities Act and years of advocacy on his side, quickly convinced the school district to restore assistance before the first day of school.

“Everything happened so fast after Scott met with the school district,” Short says. “I’m not sure what we would have done if Scott and Seattle Children’s hadn’t gone to bat for us.”

Social factors of health

Cassy Aspinall and Annette QuayleThe Washington Medical-Legal Partnership has been a game-changer that helps us help the families we serve resolve unfair barriers to their health, says social worker Cassy Aspinall, left, with Annette Quayle, who manages the program.

Helping a child attend school might seem outside the orbit of healthcare. But education, food, housing, personal safety and medical insurance are all social determinants of a child’s current and future health. If those basic needs go unmet, it’s difficult for a child to thrive.

“When you work with vulnerable populations, you quickly realize you can’t address all of their health issues within the walls of the clinic,” says Dr. Brian Johnston, chief of pediatrics at Harborview Medical Center, who helped co-found the Washington MLP. “Many of these families are trying to raise children in environments that seem absolutely impossible.”

Being cold or hungry or exposed to unsafe living conditions doesn’t just threaten a child’s immediate physical health. “The stress of growing up in a challenging environment can create a host of problems later in life – from mental health issues to interactions with the criminal justice system to heart disease,” Johnston says.

Recognizing the threat of unmet basic needs to a child’s health is one thing. Knowing what to do about it is another. Healthcare systems across the country face this quandary every day. That’s where medical-legal partnerships – there are now nearly 100 partnership networks nationwide – come in.

“It’s amazing how many times there are legal solutions to health barriers, but they’re not always obvious to the untrained eye,” says Dr. Ben Danielson, who leads the Seattle Children’s Odessa Brown Children’s Clinic and co-founded the Washington MLP. “The MLP model helps those of us in healthcare connect the dots so families get the help they need.”

Empowering providers

Seattle Children’s, Harborview and the Northwest Justice Project (a publicly funded civil legal aid program) launched the Washington MLP in 2008 with a grant from the Robert Wood Johnson Foundation (RWJF), which works to improve health for all Americans. RWJF has been providing financial support to create new MLPs and strengthen existing ones since 2005.

MLP lawyers train medical providers and social workers to recognize when families have rights to a service that is not being provided, advocate on their behalf and make referrals to an MLP lawyer if a family can’t afford a private attorney.

“The training is invaluable because it empowers providers to make a difference – whether it’s educating families about their rights or contacting a state agency or referring them to an attorney,” Danielson says.

MLP lawyers also give medical providers and social workers templates to write compelling letters for families with common legal questions like how to stop a utility from cutting service or force a landlord to remove mold from an asthmatic child’s bedroom.

“We used to write letters full of medical information and heartbreaking stories, but they didn’t have teeth because we didn’t cite state codes or federal law,” Aspinall says. “The templates include the legal language necessary to get results.”

2,000 Medical providers, social workers and others trained by the Washington MLP

Reaching out to families

Most MLP clients are disadvantaged families who, because of income, language and other barriers, are often unaware of their rights and don’t know where to turn for help.

If a medical provider or social worker makes a referral, MLP lawyers can meet a family where their child receives care. “Asking families to go to a law office would put one more barrier between them and the help they need. This way they come back to a familiar clinic environment,” Johnston says.

Crain is one of three Northwest Justice Project lawyers who form the Washington MLP legal team. They directly assist 300 families a year and indirectly help thousands more by addressing systemic problems that come to their attention – often during their one-on-one work with families.

“That’s the beauty of the MLP model,” says Annette Quayle, who manages the program. “These problems might remain under the radar if lawyers weren’t onboard to bring them to light and fight for solutions.”

Advocacy helps thousands

Charity Hollingsworth and her two childrenCharity Hollingsworth and her two childrenThe quality of everyday life has vastly improved for Charity Hollingsworth and her two children, Kelcy (above) and Jackson, both of whom are on the autism spectrum. Daily sessions of Applied Behavior Analysis therapy — and Hollingsworth’s commitment to reinforcing the skills at home — have dramatically reduced the anxiety and disruptive behavior that once made it difficult for the family to play a game, go grocery shopping, or even sit together for a meal. The costly one-on-one therapy is covered by Medicaid thanks to the legal support and advocacy of the Washington Medical-Legal Partnership, which is made possible with gifts from donors like you.

Getting in-home nursing care to children with serious medical needs is one such widespread issue. Though many of these children could be cared for at home, they must spend months in hospitals and other institutions because Medicaid’s comparatively low reimbursement rates make it difficult to hire enough nurses to meet demand. The MLP is suing the state to come up with a solution.

Previously, MLP lawyers prevented the state from cutting welfare benefits for more than 8,000 families with disabled children. They also succeeded in gaining Medicaid coverage for an expensive but clinically proven autism treatment called Applied Behavior Analysis (ABA) – a victory for more than 9,000 Washington families.

ABA therapists work one-on-one with children for up to 40 hours a week during planned sessions and naturally occurring activities. Children acquire and practice skills that improve their communication, perform better in school and manage other important aspects of daily life.

Charity Hollingsworth, a single mom from West Seattle, has two children with autism spectrum disorder who were able to start the therapy (which can cost up to $40,000 a year per child) as a result of the MLP’s work.

Like other kids with autism, Hollingsworth’s children have trouble understanding what’s happening around them. Before they started the therapy, their anxiety and uncertainty triggered disruptive behaviors that made it difficult for Hollingsworth to take them anywhere.

“Now we can go to the store and other places together. We can even eat in a restaurant – which is something I never thought we’d be able to do,” Hollingsworth says. “The therapy is life-changing for me and my children.”

After securing coverage for ABA therapy for Washington families, the MLP helped advocate for a ruling from federal authorities requiring that all states include the therapy in their Medicaid coverage.

Not every MLP action results in such a huge win, but they all have the same goal. “What the MLP tries to do,” Danielson says, “is get everyone to do the right thing.”

Published in Connection magazine, Spring 2016