A Multisystem Approach to Improving Autism Care Free

We describe multiyear efforts (2017–2022) to improve autism care within CNH and the District of Columbia more broadly. Our advocacy efforts are aimed at multiple levels of the health care system and include:

1. infrastructure-building initiatives (eg, systems-level approaches);

2. enabling services that focus on population- and community-level services to build capacity and connect providers and families to needed resources; and

3. direct services that provide innovative, gap-filling services to children and families until such services can be more sustainably and broadly supported (Fig 1).

Our advocacy work has been guided by the collective impact framework,¹¹  which highlights the importance of a common agenda (including defining goals and priorities), shared measurement, mutually reinforcing activities, continuous communication, and infrastructure support. Although our core team provided the backbone support to move initiatives forward, our advocacy efforts were codeveloped and amplified by the larger group of stakeholder collaborators (Table 1). The smaller core group has more dedicated time to provide support, including meeting and communicating more frequently, and carrying a greater share of the workload. When referencing our team, we are referring to authors and core partners of our advocacy initiatives, including professionals from CNH’s Child Health Advocacy Institute, Center for Autism Spectrum Disorder (CASD), Divisions of Psychology and Psychiatry, Goldberg Center for Community Pediatric Health primary care clinics, and a parent advocate. Our team’s parent advocate has lived experience and professional experience, on both the local and national level. We began by deliberately strengthening partnerships between our advocacy team and CASD. Professionals from CASD were critical for providing autism expertise across advocacy objectives, including cocreating the model for service delivery in primary care and providing training and mentorship for our direct service and enabling service initiatives. The administrative and organizational home for many of our efforts has been in the Child Health Advocacy Institute’s Community Mental Health Collaboration, Outreach, Research, Equity (CORE), a multidisciplinary team focused on improving mental health care access, equity, and sustainability. Together with this internal team, key stakeholders from across the District of Columbia, including education providers, health insurance groups, and legal and local government organizations, played a significant role in advancing advocacy initiatives (Table 1).

Several citywide collaborative initiatives also laid the groundwork for this work. An early example was the development of the DC Collaborative for Mental Health in Pediatric Primary Care, a citywide, public–private coalition that strengthened relationships with a range of stakeholders and garnered credibility across health, education, and government sectors.¹²  Over time, the CORE increasingly integrated a focus on improving access to autism care in their work. Funding for these efforts has involved a mix of private (eg, philanthropy and hospital grants) and in-kind support. In this article, we describe our autism-focused advocacy methods across 3 levels of our work: Infrastructure-building, enabling, and direct services. We provide specific details on advocacy initiatives within each level in Table 2. We have created a timeline (Fig 2) and discuss key anchor points throughout, though acknowledge that events frequently overlapped and projects built off one another in a way that may not be fully captured in linear form.

Our infrastructure-building initiatives facilitate sustainable systems-level solutions to promote accessible and equitable behavioral health care through coalition-building, policy, and advocacy. Our efforts include internal and external multidisciplinary partners from government, health care, education, advocacy, public health, and the community (Table 1). One example of an infrastructure-building advocacy initiative is the CNH Neurodevelopmental Workgroup, which was developed to address barriers to seamlessly caring for children with neurodevelopmental concerns across departments within CNH. Before the creation of this group, departments providing autism care often functioned independently, siloed in different locations and satellite clinics. Initially, the workgroup conducted a needs assessment of CNH providers to clarify the barriers preventing children from accessing autism diagnostic evaluations. Since 2017, the group has met quarterly to address strategic priorities by (1) better understanding the landscape of autism services, (2) identifying gaps or concerns, and (3) brainstorming and implementing solutions to clarify referral pathways.

Although the Neurodevelopmental Workgroup addresses concerns internal to CNH, the group could not sufficiently address citywide needs. To address these broader systemic concerns, our team identified barriers and community needs for children in the District of Columbia insured by Medicaid, shared priorities related to autism advocacy, and outlined 10 comprehensive recommendations, which were summarized in a thought paper.¹⁰  This paper was used as an advocacy tool and resource with stakeholders and government agencies to promote awareness of systemic issues and collaboratively derive solutions. The paper included a recommendation to establish a citywide convening group focused on autism. In 2020, our team established the DC-Autism Collaborative (DC-AC), a multidisciplinary, public–private coalition of professionals, community leaders, and parents aiming to strategically address barriers to equitable access to high-quality autism diagnosis, treatment, and coordinated care. The DC-AC has quickly gained credibility and traction thanks to the extensive partnerships with a range of stakeholders. The DC-AC team conducted a citywide needs assessment to identify priority areas, which led to the development of 5 subcommittees: Developmental monitoring, screening, and evaluations; education, outreach, and engagement; early childhood transition points; policy; and data. Each subcommittee established goals and met regularly to develop initiatives related to improving autism care.¹³ 

Enabling services focus on population- and community-level supports that increase provider capacity and connect providers and families to needed resources.⁶  Consultation with, discourse among, and education of frontline professionals such as health providers (eg, primary care providers [PCPs], general psychologists), early childhood educators (ECEs) and specialists (eg, early intervention providers), and support staff (eg, insurance-based care coordinators, clinic administrators) can improve care. These professionals have the potential to play a critical role in identifying autism in young children and connecting families to resources, but many report limited knowledge about autism and related resource navigation.^3,14,15 

To understand and address ECE providers’ autism-related training needs, we conducted interviews with leaders from the District of Columbia’s educational and early intervention agencies, as well as ECE mental health consultants. We then developed a set of replicable trainings to cover identified gaps in knowledge and skills, including general autism knowledge (eg, diagnostic criteria and tools, treatment), engaging families, and navigating local services. We used a train-the-trainer model to maximize sustainability and dissemination. To address PCP needs, we developed the “Autism Toolkit for Pediatric PCPs in DC.”¹⁶  The toolkit included District of Columbia-specific content on autism screening, diagnosis and treatment planning (including differences between educational classification of autism and medical diagnosis of autism), and resources.

Additionally, we amplified existing professional supports by connecting community champions to our hospital’s ongoing Extension for Community Healthcare Outcomes (ECHO) Autism program. This program aims to build autism knowledge and competencies by establishing shared learning forums between community providers and a multidisciplinary group of autism specialists, to increase equitable access to autism services.¹⁷  ECHO clinics occur virtually and target professionals in medical, community, and educational/early intervention settings.

The foundation and partnerships established through the aforementioned enabling services and infrastructure-building methods encouraged us to develop, refine, and scale promising direct services. In our Autism in Primary Care (APC) Program, embedded psychologists are trained and subsequently supervised by a psychologist specializing in autism to provide diagnostic evaluations for young patients (aged <5 years) referred by their PCP with high concern for autism. The Goldberg Center for Community Pediatric Health primary care clinics (where our APC program is housed) are the largest provider of pediatric primary care in the District of Columbia, serving high percentages of youth who are publicly insured. Through APC, families receive care coordination after evaluation, and PCPs receive direct feedback about the case. This initiative, which focuses on targeted use of scarce specialty resources through mentoring and triage of patients with high concern for autism, facilitates more streamlined and equitable access to a comprehensive evaluation, which is often a critical preliminary step in obtaining autism services. Our ultimate goal is to scale up APC to other primary care clinics regionally over time. We also encourage all community PCPs and integrated behavioral health providers to use ECHO to support their ability to diagnose autism.

Working collaboratively on the infrastructure-building, enabling, and direct service advocacy initiatives outlined above and described in Table 2 allowed us to support several changes to autism care in the District of Columbia, including the following:

• Surveyed stakeholders (in health care and education/early intervention) and synthesized findings (including barriers and proposed solutions) in a policy paper¹⁰  and in hospital-specific memos. The goals were to create a shared understanding of the issues (eg, barriers to care faced by families and providers, such as long wait times and the need for more coordination) and potential solutions (eg, increased autism navigators and autism education, such as ECHO). Summary documents developed have been used to advocate to leaders within the hospital and across the District of Columbia about needed improvements like staff increases and program expansions.

• Decreased regulatory barriers by contributing to advocacy for changes to local policies that had previously limited access to autism care for some children. This included successfully expanding the types of behavioral health care providers (eg, psychologists) who can be credentialed with District of Columbia Medicaid and bill for outpatient behavioral health services; advocating for policy changes and funding in the District of Columbia’s budget to improve access to autism services; and advancing policies that support integration of behavioral health services within local managed care organizations without subcontracting, that may support more effective and efficient care delivery. We continue to provide input on and monitor implementation of the policy changes, which would include a Medicaid state plan amendment that would permit reimbursement for a more comprehensive range of services.

• Coordinated efforts among multiple partners within the hospital (eg, Neurodevelopmental Workgroup) and across the District of Columbia (eg, DC-AC) to break down siloes and increase collaboration and relationship-building across groups in tackling autism-specific concerns. For example, we collectively developed web-based resources to clarify different autism assessment options locally.

• Disseminated autism-related information, including clinical information (eg, diagnostic criteria and procedures) and systems navigation information, through the creation of provider- and family-facing resources (eg, what to do while awaiting an autism diagnostic evaluation) and trainings (eg, toolkits,¹⁶  train-the-trainer modules), and leveraging existing professional mentoring programs (ECHO clinics). Resources were made freely available and were disseminated at meetings, electronically (eg, newsletters), and on websites targeting families and providers (eg, PCPs) across the District of Columbia.

• Increased access to care for children and families facing significant barriers by developing and implementing CNH’s APC program that has served >150 children and their families in primary care to date. Wait times for evaluations through APC were less than wait times at local specialty clinics, and children were diagnosed younger than the national average of >4 years. Moreover, patients served were primarily those who had historically faced more barriers to accessing case (Black and Latinx families and those who speak a language other than English).

We hope that other institutions and coalitions can learn from our efforts in the District of Columbia, including from the barriers we have faced and from the following lessons learned:

• Identify clear guiding principles for the work: A deliberate focus on access, equity, and sustainability underlies all our efforts. For example, our policy efforts focus largely on children insured through Medicaid, whereas our enabling and direct service work focuses on families who face barriers to accessing care (eg, difficulty accessing services because of insurance barriers and wait times). Similarly, we intentionally developed partnerships with community stakeholders who serve underresourced families to build their capacity to address autism-related needs.

• Start small to ensure initial success and momentum. This can be challenging when the systems issues are large and when demand for autism services far outpaces the supply. For example, our APC program started at 1 primary care site with a focus on children aged <5 years with high likelihood of autism despite the pull to make the service available to a wider range of children from the start. However, starting small (eg, encouraging a student volunteer to help gather and summarize information) helps to encourage measured progress, build momentum, and avoids overwhelm, especially when resources and time are limited.

• Work across different levels of the health care and educational system. Working with children and families informed our educational and policy efforts by providing specific examples of barriers to and facilitators of care. Systems-level work improves direct patient care because it helps to address systems inefficiencies and gaps and gives providers an outlet to advocate for factors that may impact their burnout, increasing their agency. Working simultaneously across systems also maintains momentum and engagement, because there may be progress happening in 1 area even if progress is stalled elsewhere.

• Prioritize coalition-building from the start. Engagement with stakeholders from various disciplines, sectors, and agencies has facilitated problem-solving to address complex yet universal areas of concern and to amplify our collective voice. For those in institutions with limited resources, starting with even 1 connection internally or externally can prove fruitful. We are actively working to enhance the role that families can play in this work. Although we have >10 family members of children with neurodevelopmental differences (including autism) who participate in our coalitions in a professional capacity, we continually seek ways to increase parent involvement (eg, presenting information and soliciting input at parent forums, interviewing families who have participated in our APC program) and aim to do so more in the coming year. Coalition-building takes time and can be challenging given that stakeholders have different priorities and constraints. Balancing the needs of continuing to move the work forward while ensuring agreement and engagement is difficult, though we have been impressed by the level of stakeholder engagement toward common goals related to improving autism care.

• While supporting broad participation, identify champions across groups (eg, individuals who can promote efforts and disseminate information within their organizations). Despite strong interest, many professionals have limited time for efforts that are not directly part of their professional duties. Identifying champions can enhance accountability and keep progress moving forward despite these challenges.

• Consistent with a collective impact framework, obtain backbone infrastructure support from individuals with dedicated time to communicate more frequently, carry a greater share of the workload, and make key decisions. We have been challenged by not always having sufficient backbone support, which can slow progress for periods of time. We recognize that identifying backbone support is especially challenging in underresourced institutions and may require external partnerships. However, even in a setting of limited resources, small incremental changes and development of stronger partner relationships can be very impactful in the long term.

• Diversify financial and in-kind support to ensure sustainability of the efforts and prevent dependence on a single source of funding. Philanthropic funds (often relatively small amounts) gave us the flexibility to address areas that are traditionally not supported through research or operational funding (eg, piloting new initiatives, developing and disseminating resources). Sustainable funding remains challenging because it can be difficult to balance funders’ desire to support new and innovative ideas with the need to sustain enduring efforts. However, we encourage consideration of ways in which impacts can be made without financial supports within the context of standard clinical practice (eg, through quality improvement processes).

• Systematically gather and report on quantitative and qualitative data. Such data (eg, tracking provider concerns, supplementing themes with specific examples) has been helpful in deconstructing silos to document the nature and pervasiveness of challenges. We have built evaluation and continual improvement into our activities, including evaluating the effectiveness and functioning of our collaborative teams. Relatedly, it is important to synthesize and highlight the needs and business case for funders, hospital leadership, and other key stakeholders. We have faced challenges in accessing data (eg, population-level electronic health record data) and in soliciting regular feedback from stakeholders about barriers to autism care. Even once data are synthesized and presented, leaders face competing demands on their time and on resources they can allocate to address concerns.

• Identify and celebrate small wins. Advocacy work takes time to pay off and may come with unexpected obstacles. Recognizing small steps along the way encourages momentum, enthusiasm, and reflections on the progress being made.

We have begun to address clinical and access challenges in autism care through multidisciplinary collaboration and education across our hospital system and the District of Columbia, though we face continued challenges and much work remains. We aim to sustain this work by building on our initial success and using braided funding wherever possible. We are eager to explore federal advocacy efforts that align with our goals and work. Although each state and jurisdiction will face unique challenges, we hope that others can learn from our efforts to improve autism care for children and their families.

We thank the many individuals and groups who have contributed to the advocacy efforts described in this article. We especially thank Renee Williams, Erica Eisenman, and Lauren Kenworthy for their contributions to this body of work. In addition, we thank Cara Biddle, Kelly Fuentes, Vanessa Fuentes, Michael Geraldo, Tonae Jackson, Maria Lauer, Donna Marschall, Xavier Marshall, Hope Rhodes, Sharon Singh, Shalinee Khurana, Colleen Morgan, Lori Kraden, Kelly Register-Brown, Allysa Ware, Sarah Bernstein, Alison Page, Elyssa Sham, and members of the departments of Whole Bear Care and Neurodevelopmental Pediatrics, as well as members of the Neurodevelopmental Workgroup and the DC-AC.

APC

Autism Evaluations in Primary Care

CASD

Center for Autism Spectrum Disorder

CNH

Children’s National Hospital

DC-AC

DC-Autism Collaborative

ECE

early childhood educator

ECHO

Extension for Community Healthcare Outcomes

PCP

primary care provider