Children’s Hospital Association supports Autism & Special Needs Care Initiative; project gains new ground in care for autistic children
By Sarah Colburn
The bright lights glare overhead and the machines beep loudly in a startling pattern, strangers come and go quickly through the door and it doesn’t smell like home. The sights and sounds of the hospital can be overwhelming for anyone, but especially intense for a child with autism.
As children with sensory sensitivities work to cope with a new environment, they often retreat inward, using self-soothing behaviors to relax. Those behaviors may provide some level of comfort but can quickly escalate, making it difficult to provide medical care, especially in an emergency.
As the national number of kids diagnosed with autism continues to climb, leaders at the St. Paul-based Children’s Hospital Association answered the request of doctors and nurses to be trained in helping identify and care for kids with autism. The organization annually donates nearly $1 million to Children’s Minnesota to support programs that provide a better experience for kids and families, programs that insurance doesn’t often cover directly.
“It goes to the core of our mission, to improve the experience children have within the hospital and clinic, we believe it’s essential to the patient and family,” said Erin Bursch, executive director of Children’s Hospital Association.
In a first-of-its-kind grassroots effort, the funding from Children’s Hospital Association allowed staff to receive training from one of the state’s foremost experts in autism, Ellie Wilson, the executive director of the Autism Society of Minnesota (AuSM). The effort and the partnership have garnered national attention and are being held up as a model of what caring for kids with autism should look like.
The work, in part, has helped earn Children’s Minnesota a Magnet designation from the American Nurses Credentialing Center. In reviews of the hospital, the ANCC specifically touted the work of Children’s Minnesota in the field of autism.
Additionally, the partnership between the hospital and AuSM has been so beneficial that Wilson has been asked to create an electronic training module for the National Children’s Hospital Association based in Kansas. The national association is a cohort of more than 220 children’s hospitals around the country, Wilson’s work will outline Minnesota’s training so it can be used to guide care teams around the U.S. as they care for kids with autism.
“This is an opportunity for national leadership,” Wilson said. “It’s such an enormous impact.”
Making a difference
The local work is helping shape the landscape of care for people like Joey Sicoli who is now 21. Sharyl and Robert Sicoli used to spend days prepping for Joey’s appointments, apprehension and fear set in each time. They knew a needle poke without warning or preparation could send him over the edge, spiraling into behaviors that were hard to stop. Sharyl would advocate for her son but a decade ago autism wasn’t as prevalent and she found herself trumped by hospital protocol.
Now, she said, thanks to the work at Children’s Minnesota, and the conversation about autism on the national stage, the landscape has changed. Doctors and nurses partner with her and talk about what will work best for Joey. Though he has limited language abilities they ask him if he wants to lay down or sit up for a blood draw, if they should count to three, and there’s a team approach to distracting him when he’s anxious. Providers are also taking care to limit the number of people coming and going from the room as each entry increases Joey’s anxiety.
“To bring in a child with autism or special needs, it’s a big deal,” Sharyl Sicoli said. “It’s such a new experience for them and (Joey) has an incredible memory, he will remember the experience for an incredibly long time, if it starts off in a negative way that’s the experience he has to build on.”
That experience is exactly why Children’s Hospital Association stepped up to provide doctors and nurses more tools to help kids. The Centers for Disease Control now estimates that 1 child out of every 59 children nationwide has autism, increasing the demand for proper care. Not only did staff ask for the training, they self-identified the need to attend, the directive didn’t come from the top down.
Grant dollars went toward a day-long training where doctors, nurses, and specialists learned how to identify some of the most common behaviors in children with autism and what they mean. During the training, Wilson provided insight into the tools care teams could use to help de-escalate a situation and provide comfort.
The tools come in the form of an autism toolkit, also funded by the local Children’s Hospital Association. The toolkits are filled with sensory objects and include everything from sunglasses, headphones and nose plugs for kids who need a break to bubble tumblers and spiky balls for kids who need visual stimulation and a sense of touch. Each kit includes a set of cards that help kids non-verbally communicate their needs and help staff create a narrative so kids know what’s coming next. The narratives are written like a story, personalized to each child: “First Sally will check in at the desk. Sally will put on the hospital gown. Sally will stand on the scale. The nurses are so proud of Sally.”
Today, the toolkits exist in the emergency departments, pediatric intensive care units, the medical/surgical floors and in the sedation and procedural services departments of the Children’s Minnesota St. Paul and Minneapolis hospitals. The goal is to roll them out to other departments in the future.
In the St. Paul surgical services department alone providers see more than 1,100 kids diagnosed on the autism spectrum a year. Each time a diagnosed child has a procedure planned in the department a social worker reaches out to the family before the appointment to find out how they can best provide comfort when the child visits the site. These call-ahead check-ins have reduced check-in times on site from 90 minutes to 30 minutes, giving kids less time to be anxious. The plan outlines a child’s sensitivities and also allows for accommodations to make their stay more comfortable, like changing into a hospital gown just before a procedure rather than early in the process.
The toolkits provide easy access to a variety of devices but the key to using them correctly is the training.
Robert Sicoli is not only a parent of a child with autism, he’s worked in the emergency department for 25 years and served as the department’s medical director for the last nine.
“Our frontline staff didn’t always possess the skills from an observational standpoint, as well as a therapeutic standpoint, to recognize the factors that make the experience much worse for the child and the family,” Dr. Sicoli said. “In our field, we’re taught to recognize signs and symptoms for treating patients in an emergency, this is the same thing, we needed to equip our front line with the same skills to recognize behaviors and treat them before they escalate.”
For kids who enter the hospital via the emergency department, there’s no luxury of an advanced intake system, providers just have to be aware and use their training. In addition, numbers from the Autism Center of Minnesota indicate there may be as many as 70,000 people in Minnesota living on the spectrum who haven’t been diagnosed yet and some of those are kids who come to the emergency department.
As Children’s Minnesota continues its relationship and training with AuSM the partners are working together to look at the future of care.
Melanie Kuelbs is a clinical nurse specialist with a doctorate of nursing practice at Children’s Minnesota. She explains that though there are a lot of resources on how to screen for autism and assess kids in a school setting or a clinic setting, there aren’t many resources for hospitals.
“That’s the ground-breaking piece, we’re doing this in their time of need, often when it’s an emergency,” Kuelbs said. “I think we have a big opportunity for learning different communication styles, different ways to communicate, to be able to look at different behaviors and what they’re trying to tell us.”
According to AuSM, the average age of diagnosis of autism nationwide is 4 years and 7 months although more credit is being given to even earlier diagnosis. Some behaviors and symptoms of autism emerge as early as 18 months and studies show that early intervention allows for the best outcomes and provides early support to families, Wilson said.
Future of care
As Children’s Minnesota continues its mission of becoming the best place to provide care for children with autism they’re looking for partners. Roberta Basol is the senior director for the Center for Professional Development and Practice at Children’s Minnesota.
“In the future, we want to partner with the schools and others in the community to see where the gaps are in healthcare management,” Basol said.
Often times, she said, just because a child is diagnosed in the school system it doesn’t mean that diagnosis is communicated to their medical team. Children’s Minnesota leaders want to strengthen that relationship and explore solutions.
Additionally, her goal for the next 12 months is to expand the training and the toolkits to the clinics and outpatient settings associated with Children’s. She also plans to host a second day-long conference on autism in the spring of 2019 aimed at providers in Children’s Minnesota specialty areas including endocrinology, orthopedics, cardiology, and gastroenterology.
A lot of providers, she said, never see a child with autism because of their specialty area. But, she said, when that same child develops diabetes or breaks a leg, they end up meeting with a specialist.
“We want to make sure all types of healthcare providers have an understanding of the autism spectrum disorder and behavioral challenges that may come along with that,” Basol said. “If you’re aware of a child’s unique needs and what works best for them we can do a better job reducing their anxiety and providing the medical care they need with tools that work best for them.”
Children’s Hospital Association is proud of how this project has evolved over time.
“We believe a child’s stay at the Children’s Hospital should be as painless as possible,” Bursch said. “The Autism & Special Needs Initiative is exactly the type of project we aim to support. It was initiated by staff that identified a need and it positively impacts the experiences of children and their families. It’s now a model to be shared and expanded.”