Behavioral Health

Hands holding letters that spell autism

Increasing access to autism spectrum disorder services through enhanced training

Hands holding letters that spell autismMany service providers struggle to keep pace with advances in autism-specific knowledge and tend to refer children to autism specialty clinics when the diagnosis of autism spectrum disorder (ASD) is in question. Unfortunately, it is in these settings where children most often wait for months or, worse, experience barriers to accessing any care at all. This has resulted in an access crisis for children and families with ASD concerns contributing to delays in diagnosis and treatment, particularly for children of color and for under-resourced families. Service disruptions and challenges related to the COVID-19 pandemic have only added to delays. As the need for autism-related services continues to grow, innovative models must be used to enhance competence among frontline medical, behavioral health and community-based providers who currently serve these children and families on a regular basis.

Children’s National Hospital has initiated a number of endeavors focused on increasing access to ASD services through enhanced training experiences, mentorship of allied mental health and frontline professionals and utilization of multidisciplinary approaches. These approaches enhance the skills and knowledge of treatment providers, which allows them to accurately address the needs of autistic patients while they await more comprehensive evaluations and sometimes reduce the need for additional evaluation. The following are efforts currently underway.

Virtual ECHO (Extension Community Healthcare Outcomes) Autism Clinics

The Center for Autism Spectrum Disorders (CASD) is hosting virtual ECHO (Extension Community Healthcare Outcomes) Autism Clinics aimed at building autism knowledge and competencies amongst community providers by creating shared learning forums with a multidisciplinary group of autism specialists for dissemination of knowledge and mentorship.

Clinics run in 6-month sessions on a bimonthly basis and target professionals in medical, community and educational/early intervention settings. There is no requirement for prior autism-related knowledge or training. The emphasis in learning stems from case-based discussions primarily, along with targeted autism specific didactics.

We have found good satisfaction with the program overall, as well as self-report of gains in ASD-specific knowledge and care competencies as a result of participation in ECHO. To date, CASD’s ECHO Autism program has reached 290 professionals and trainees serving autistic children and their families.

Integration of autism evaluations into primary care sites

The Community Mental Health (CMH) CORE (Collaboration, Outreach, Research, Equity) within the Children’s National Hospital Child Health Advocacy Institute (CHAI) has been working collaboratively with several other divisions, including CASD, to integrate autism evaluations into primary care sites for young children with high concern about ASD. We aim to increase capacity and access to autism services by training embedded psychologists in primary care settings in autism diagnostics.

By increasing behavioral health provider capacity and integrating in primary care, this clinic has been able to drastically decrease waits for ASD services by months to years. Families served by the program were predominately Black (81%) or Latinx (10%), and most (87%) had public insurance. Nearly one third (32%) were not primary English speakers. An ASD diagnosis was provided in 68% of all cases.

All referring PCPs surveyed indicated that they were “satisfied” or “very satisfied” with the program, that they “strongly like the integrated clinic model,” and that the program “is increasing equitable access to ASD. Currently, CHAI-supported ASD-focused embedded clinics in primary care have served 94 children and their families.

2021 neurology infographic

2021 at a glance: Neurology and Neurosurgery at Children’s National

2021 neurology infographic

3d render of brain form

LEND program to support physicians with interdisciplinary training for NDD and ASD

3d render of brain form

In a time with dearth of specialties, LEND will train allied health professionals, parent advocates and self-advocates, provide continuing education and technical assistance, research and consultation while preparing professionals for leadership roles in the provision of health and related care.

A new program at Children’s National Hospital, known as The Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND CN), will provide interdisciplinary training to enhance clinical expertise and leadership skills while reducing the shortage of medical specialists — a hurdle also present nationwide. Participating institutions such as Children’s National Hospital, Howard University and University of the District of Columbia will enhance the care for children and families with neurodevelopmental disorders (NDD), including autism spectrum disorder (ASD).

The program seeks to improve the health of infants, children and adolescents with or at risk for NDD and related disabilities. LEND CN will also prepare future leaders in this space that offer a comprehensive support tailored to a child’s specific condition.

“There are very few opportunities for training a broad multidisciplinary team to work with and provide leadership in the neurodevelopmental and autism space,” said Andrea Gropman, M.D., neurodevelopmental pediatrics and neurogenetics division chief at Children’s National Hospital and principal investigator of the LEND CN program. “This grant funding will allow the LEND CN leadership and curriculum team to develop innovative training and leverage community resources, universities and institutions to provide a broad, diverse and inclusive training.”

The Health Resources and Services Administration (HRSA) awarded the program with $2,200,000. The funding will help develop, implement, evaluate and innovate the curriculum and experiential activities of LEND CN. These efforts will be led by Dr. Gropman and Anne Pradella Inge, Ph.D., clinical director of the Center for Autism Spectrum Disorders at Children’s National Hospital and LEND educational content director.

In a time with dearth of specialties, LEND will train allied health professionals, parent advocates and self-advocates, provide continuing education and technical assistance, research and consultation while preparing professionals for leadership roles in the provision of health and related care.

“We have a broad multidisciplinary team of specialists in developmental pediatrics, neuropsychology, speech and hearing, and other allied health specialists,” Dr. Gropman said, adding that Children’s National is uniquely positioned to participate in this grant opportunity. “This grant is exciting because it allows us to take advantage of the full potential the D.C. area has to offer to establish comprehensive and individualized training.”

Many of the trainees of this program remain local and in the field of developmental disabilities and autism, while many others also have risen to leadership positions. Some who have completed the program return as LEND educators to the next generation of trainees, proving the many doors this program can open for those seeking a career in neurodevelopmental pediatrics and work that intersects with developmental disabilities and their families.