St. Luke’s Children’s Autism Program is an example of our ongoing transformation of health care by virtue of its care coordination. The program’s multidisciplinary team members are passionate healthcare professionals seeking to constantly improve the care of children and support to families, and I am very proud of their work.
April is National Autism Awareness Month, and I thought it would be good to share timely information from one of St. Luke’s Children’s Hospital’s experts: Dr. J. Timothy Leavell, a specialist in developmental-behavioral pediatrics. Here is Dr. Leavell:
Let me share with you the type of encounter I have with people in our community on a fairly regular basis.
The family visits and tells this story: We have been concerned about our son, who is now 2½, since he was 18 months old. His language development slowed and he lost words that he used to be able to say. He is our first child and although we were worried, we decided to wait and talk it over with his pediatrician at his 2-year well-child visit.
By the time he was 24 months old, we noticed a few additional things. He preferred to play by himself and he was very difficult to engage. He liked to line up his matchbox cars and became upset if the order was changed. He never really liked to be cuddled and would pace around the coffee table while humming to himself.
At the well-child visit, our pediatrician did a screening for autism and the result was positive.
This example highlights the worries that parents have and the challenges they experience when it comes to this developmental disability. It’s for those reasons that St. Luke’s physicians and clinicians have been working on improving services for children with autism, and I want to share the progress that has been made and our vision for the future.
What is autism?
Autism is a unique brain disorder which usually presents with a combination of language and social deficits in addition to narrow interests and repetitive behaviors.
Symptoms of autism present during early development, producing significant impairment in day-to-day functioning. Deficits can vary from very mild to quite severe.
Autism is a strongly genetic disorder, as shown by twin and family studies, yet an exact genetic etiology has not been described.
Although there is no cure for autism, early recognition is vital in producing the best outcomes.
In order to recognize autism, the American Academy of Pediatrics has recommended screening for autism at both the 18-month and 24-month well-child visits. The Centers for Disease Control and Prevention (CDC) has provided important information about autism: http://www.cdc.gov/ncbddd/autism/signs.html
The CDC has estimated that the prevalence for autism is one in 68 children: one in 42 boys and one in 189 girls. This means that in our geographic area, we would anticipate that more than 5,000 children have some type of autism.
The challenges for families are many. Once a concern about autism arises, there are often delays in obtaining a referral, delays in obtaining an evaluation by a competent clinician, and lack of availability of effective interventions.
The total cost of care is greater by $17,000 per year; the medical costs for autism care are approximately $3,370 per year, or about $15.5 million dollars in the area that St. Luke’s serves. Families facing these logistical and financial challenges are under great stress.
The St. Luke’s Children’s Hospital Autism Workgroup
Beginning in July 2013, a passionate group of professionals from Magic Valley and Treasure Valley began meeting monthly, with a goal of establishing a formal St. Luke’s Children’s Autism Program.
The disciplines represented included developmental behavioral pediatrics, child mental health, neuropsychology, occupational therapy, speech language pathology, and physical therapy.
We began by identifying the core functions that well-recognized autism programs provided. We visited the MIND Institute at the University of California – Davis and explored program development and collaboration. We wanted one St. Luke’s autism program with two centers.
Our efforts culminated in presentations to St. Luke’s Health System’s East and West boards, and we received unanimous approval of our systemwide program, which officially launched in the fall.
We have two autism teams, one in Magic Valley and one in the Treasure Valley, and continue to meet to enhance elements of our program, which includes diagnostic teams, parent training, social skill groups, early intervention, community advocacy, care coordination, and family advisory councils.
Before beginning this collaboration, there was fragmentation of care, and it often took as long as 18 months to finish a thorough evaluation. By establishing multidisciplinary teams in two locations, we are now able to finish a complete evaluation in approximately one to two months, which is a huge benefit to families.
Our autism team has a lot of work to do. We would like to expand partnerships with primary care providers for more effective screening, referral, and co-management of children who have autism spectrum disorder, partner with local school districts for ongoing training and collaboration, and continue our partnerships with autism centers in our region. Our goal is to develop a comprehensive “autism care through the lifespan” guide and training manual for parents.
What is our Why?
We all need a compelling reason to drive us. Why have we undertaken this goal?
Our team believes in the potential of every child, and we are passionate to use our talents, abilities, and collaborative approach to enhance outcomes and the quality of life for children with autism spectrum disorder.
Why am I taking this journey? During my 26 years of developmental behavioral pediatric practice, I have observed the tremendous stress that parents of children with autism spectrum disorder are under. I have also seen great perseverance in the face of daily challenges.
Because of their courage, I am inspired each day to take the journey with them, to give them my very best. Each day in the clinic, we laugh, we cry, but mostly we cheer. My ultimate goal is to leave a lasting legacy of compassion and hope for them through our efforts to improve care.
David C. Pate, M.D., J.D., is president and CEO of St. Luke's Health System, based in Boise, Idaho. Dr. Pate joined the System in 2009. He received his medical degree from Baylor College of Medicine in Houston and his law degree from the University of Houston Law Center.