A trip to the doctor’s office or hospital can be challenging for children who have autism and other neurodevelopmental disabilities.

In response, UC Davis Health has pioneered a first-in-the-nation program called PATH (Promoting Accessibility To Healthcare) to improve health care experiences for neurodiverse children and their families. The program is funded by a Children’s Miracle Network at UC Davis grant. 

“Individuals with disabilities are more likely to have medical trauma that contributes to care avoidance and are four times more likely to have unmet health care needs,” said Scott Akins, chief of developmental pediatrics, medical director of the UC Davis MIND Institute and co-medical director of the PATH Program. “We’re aiming to change this by adapting our environments to better serve those neurodiverse children and their families who need this care.”

They are starting with the Children’s Surgery Center (CSC) at UC Davis Children’s Hospital. As of this month, 80% of center staff are trained on the PATH curriculum, making it the first unit in the hospital to achieve PATH certification.

Making surgery less scary

What makes a surgical experience less scary for children with neurodevelopmental disabilities?

The PATH program starts by getting basic information from families and patients about their likes and dislikes.

For example, the program asks the patient how they prefer to communicate with providers:

• Nonverbal
• 1-2-word responses
• Sign language
• Gestures or pointing
• Full sentences
• Communication device

The program also asks patients or their parents or guardians to share their sensory needs.

For some autistic patients, lights that are too bright, noises that are loud or jarring can be unpleasant and painful. For those with previous medical trauma, the sight of lab coats or medical equipment can be upsetting. These elements can be the difference between a successful visit and a traumatizing one.

Once families can identify these preferences, they are added to the child’s medical chart. That way every medical provider can find those preferences. This patient-centered approach helps inform the way that the health care team interacts with the patient each and every time they come for care.

“Trying to create an environment and a set of best practices that lets them have the most effective visit possible is going to create a pattern of success that we think will have lifetime implications,” said Jonathan Kohler, medical director of pediatric trauma, pediatric general surgeon and co-medical director of the PATH program. “That’s what we’re trying to address. Not just how do we make care better for neurodiverse patients in the moment, but how do we make the whole spectrum of care that patients get across a lifetime better?”

Training the team for success

Patient navigator Katharine Harlan Owens says that it starts with the employees, who are now trained and PATH certified.

“We have created a corps of skilled and compassionate nurses and technicians who now have the tools to better understand the experience of our neurodiverse patients and provide accommodations that make their visit better,” said Harlan Owens, navigator, who is with the MIND Institute’s Center for Excellence in Developmental Disabilities and program manager of the PATH Program.

As part of the PATH certification process in the CSC, a number of improvements have also been made. These include expanding the selection of sensory items, fidgets and visual distraction tools. Team members also ensure that the most sensitive patients are given priority access to morning appointments, quieter rooms and spaces in the pre- and post-operative areas.

Harlan Owens adds that good communication and advocacy are essential to making the PATH program work. She noted that the PATH Advisory Committee — which includes individuals with lived experience and their caregivers – is critical to the program’s success. She encourages families to provide feedback to the team to let them know what the team can do to make every child’s visit a happy and successful one.

“PATH is a work in progress and we want to know how it is — and isn’t — working for the patients and families that we serve,” Harlan Owens said.

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