The Crucial Role of Developmental Specialists in Advocacy

On September 16th, 2024 a group of 145 developmental and behavioral specialists headed to Capitol Hill in Washington, D.C. to speak with legislators (over 90 total) regarding the HEADs UP Act of 2023 and the Autism CARES Act of 2024.  

By Jennifer Cervantes, LCSW-S and Dinah Godwin, LCSW-S

When you imagine an “advocate,” who and what comes to mind?  Do you imagine a caregiver of a child with developmental concerns – fighting to get your child access to the healthcare and services they need?  Do you imagine a group of parents and caregivers – working tirelessly to advocate for their loved ones in systems that were not created with access, inclusivity and acceptance in mind?  Do you think about self-advocates – persistently fighting for equality of opportunity and fair pay?  What about teachers – many frustrated by the lack of support for their students in the classroom?  Or lawyers, who devote their careers to advocating for the disability community?  Or politicians who stand as allies?

When you imagine an advocate, do developmental specialists come to mind? 

When we talk about developmental specialists, this includes professionals such as developmental-behavioral pediatricians, neurologists, social workers, psychologists, nurse practitioners, general pediatricians, therapists, and others who use their expertise in development and behavior to address the medical and developmental needs of the disability community.  Although there is a national shortage of developmental-behavioral pediatricians and a similarly low number of other specialists in developmental care, most neurodivergent individuals or their family members will likely connect with a developmental specialist at some point in their lives, whether during childhood or adulthood. The professional knowledge and understanding of systems-based care that developmental specialists possess makes them excellent advocates and champions for change.

All developmental specialists have a distinct skill set grounded in evidence-based practice, theory, and patient-centered care. Additional skills that contribute to their effectiveness as agents of change include:

·       Expert Knowledge: They possess an in-depth understanding of development, disabilities, the transition to adulthood, and the range of services available in the community.

·       Comprehensive Approach to Care: They consider the social, emotional, and environmental factors that may be influencing a child’s development and behavior.

·       Collaboration Skills: They take a coordinated approach to care, often collaborating with schools, therapists, other healthcare professionals, families and self-advocates.

·       Resourcefulness: Developmental specialists are skilled at navigating systems, identifying resources, and helping individuals navigate systemic barriers to care.

·       Cultural Competence: They understand and respect diverse backgrounds, considering the impact of culture and diversity on an individual or family’s view on developmental care and mental health services.

·       Passion for Change: Their commitment to improving outcomes for children, as well as their first-hand knowledge of needs and barriers, drives them to advocate for policy changes and better services.

How should developmental specialists and other healthcare providers be champions for change when it comes to the issues important to neurodivergent individuals and their families? How can we ensure that developmental specialists engage in advocacy and utilize their unique expertise and perspective to help push access and equality forward?

The Society for Developmental and Behavioral Pediatrics (SDBP) was founded in 1982 by a group of forward-thinking pediatricians and their colleagues. SDBP is now an interprofessional organization dedicated to improving the developmental and behavioral health of children by providing exceptional leadership and promoting research, education, advocacy, and practice. SDBP advocates for a comprehensive and team-based approach to the biological, psychological, social, educational, and cultural influences on children, youth, and their families. SDBP’s strategic plan focuses on quality, access, sustainability, and growth to support their mission to improve the developmental and behavioral health of all individuals through interprofessional collaboration.

“The professional knowledge and understanding of systems-based care that developmental specialists possess makes them excellent advocates and champions for change.”

The SDBP Advocacy Committee has promoted this mission in various ways, including national education on topics such as basic advocacy skills, school-based advocacy, advocacy in the media, etc. One key focus is to help developmental specialists and learners recognize their potential as advocates and to develop strategies for engaging in advocacy, even within the demands of a busy clinical role.

Developmental specialists and other healthcare providers can become champions for change by:

·       Empowering Individuals and Families. Developmental specialists can be key sources of information in helping individuals and families understand their rights within various service systems, and supporting them in making informed decisions. 

·       Teaching Advocacy Strategies. Providers can educate individuals and families on various entry points for advocacy. For example, explaining the chain of command within the school system (principal, school district, state educational agencies, and ultimately the U.S. Department of Education) or providing information on things as simple as voter registration deadlines.

·       Creating Connection. Individuals and families frequently express frustration when it comes to access to care, long waiting lists, lack of funding, etc. Developmental specialists can create connections by helping individuals and families understand the relationship between legislative processes  and the programs and services they are trying to access.

·       Modeling. Developmental specialists can demonstrate advocacy in action by demonstrating how to communicate effectively with other providers or local officials.

Another key focus of the SDBP Advocacy Committee is engaging developmental specialists in direct advocacy opportunities. SDBP members visited Washington, D.C. back in 2019 when more than 100 developmental specialists visited Capitol Hill to discuss topics ranging from the Autism CARES Act to gun safety. SDBP co-chairs and Board members again visited Capitol Hill in July of 2024 to participate in a roundtable discussion regarding the HEADs UP Act of 2023, with Congressman Seth Moulton’s office and other prominent national disability organizations. On September 16th, 2024 a group of 145 developmental and behavioral specialists headed to Capitol Hill in Washington, D.C. to speak with legislators (over 90 total) regarding the HEADs UP Act of 2023 and the Autism CARES Act of 2024.  

Given the national shortage of developmental specialists, it is imperative that local, state, and federal legislators understand the impact that bills such as these have on the quality of life for self-advocates and families, as well as sustainability of the developmental-behavioral field over time. Developmental specialists have a responsibility to harness their expertise and dedication to engage in advocacy alongside the individuals and family members with lived experience, with the goal of moving our society toward greater accessibility, inclusion and equity.

About the Authors
Jennifer Cervantes, LCSW-S, is the Director of Community Outreach and Education at the Meyer Center for Developmental Pediatrics and Autism at Texas Children’s Hospital and an Assistant Professor of Pediatrics at Baylor College of Medicine in Houston, TX. Jennifer provides education to individuals, families, multidisciplinary learners, and various professionals on inclusive and ethical care for neurodiverse individuals. She is currently co-chair of the Society for Developmental and Behavioral Pediatrics Advocacy Committee.

Dinah Godwin, LCSW-S, is the Director of Social Work for the Meyer Center for Developmental Pediatrics and Autism at Texas Children’s Hospital and an Associate Professor of Pediatrics at Baylor College of Medicine.  Dinah provides clinical social work services for children with developmental diagnoses and their families. She also facilitates educational groups for families and multidisciplinary professionals from a wide range of disciplines. Dinah is a current board member for the Society for Developmental and Behavioral Pediatrics.