other parts of Alaska to her Anchorage clinic. During the pandemic, her care shifted to telehealth, which worked for some patients but not all. There are no high-speed internet providers in many areas of Alaska; some of Fuentes’ clients in the high rural and frontier populations simply could not access telehealth.

Moving Forward

In order to provide quality care for children with disabilities in areas like Alaska, said Fuentes, there are several changes that need to be made. First, communities need affordable access to high-speed internet. Second, providers need reimbursement for telemedicine, including telephone calls, that is equal to the reimbursement for in-person visits. Fuentes noted that whether in-person or on the phone, the provider is spending the same amount of time and making the same types of care decisions. Third, there is a need for more providers so that patients can receive the hands-on care they need. Patients and their rehabilitation team members—including physical therapists, occupational therapists, and speech therapists—need some in-person sessions to continue to make progress. Fuentes said that in Anchorage, AK, some patients faced year-long wait times for referral services because of a lack of providers. She emphasized that the situation was even direr for patients in other parts of the state who already have limited access at baseline. One approach for increasing the number of rehabilitation professionals, she said, would be to include physical therapists in loan repayment plans that are available to other medical professionals. Additionally, there should be incentives to encourage people to go into the pediatric rehabilitation field, and to enter community-based practices. Fuentes shared a quote that she tries to keep in mind in her practice:

This perspective, she said, encourages her to bring all aspects of herself to her role, and also to consider how all families and communities have both challenges and strengths. While the pandemic highlighted many of the challenges, it also provided opportunities to harness strengths in order to meet the family’s goals. Fuentes emphasized that the priorities of providers may not always match the priorities of families, particularly during times of stress or hardship. The pandemic forced families to focus on what was important for daily function, she said, and forced her to take a step back and

follow their lead. Fuentes encouraged other providers to adopt a family-centered approach to care and to make sure that the child’s lived experience is driving treatment, rather than the provider’s ideas of the appropriate care. Self-determination and participation in one’s care are critical not only to indigenous communities, said Fuentes, but all communities.

PADRES EN ACCION

Research has demonstrated that parent participation in early intervention is critical to enhancing outcomes for children with autism spectrum disorder (ASD) and reducing parent stress (Estes et al., 2014; Magaña et al., 2017), said Kristina Lopez (Arizona State University School of Social Work). This research, along with other studies identifying the informational needs of Latino families, was the basis for the development of Padres en Accion, or Parents Taking Action (PTA). While there are a plethora of autism intervention programs, there are very few like PTA that are culturally-informed and developed by the community itself, she said. The development of PTA was motivated by disparities in the diagnosis and treatment of Latinx children who have autism and their families. There are a number of reasons for these disparities, said Lopez, including poor clinical encounters, a lack of community trust, erroneous expectations, poor patient-provider communication, and mismatches in autism service offerings and minority service needs. Fuentes said that PTA was based on the ecological validity model (Bernal et al., 1995); she explained that this means that instead of simply translating an existing autism intervention into Spanish and assuming it is appropriate for Latinx families, the development of the program was informed by focus groups and an advisory board who ensured that it matched the needs and wants of the community. The ecological validity model includes multiple dimensions to be considered when creating a culturally-informed program, said Lopez. She presented a table that demonstrated how PTA addressed these dimensions (Table 6-1), and highlighted a few. While materials are available in Spanish and delivery is provided by bilingual speakers, she noted that not all Latinx families speak Spanish. The program utilizes promotoras, community health workers who are from a similar culture and geographic community as the participants, and incorporates common Spanish sayings and cultural values. Lopez stressed that fostering relationships with the family is an essential part of the program, and that home visits reduce barriers to participation.

PTA recruits underserved mothers of children at-risk or diagnosed with ASD ages up to age eight; recruitment is done through service agency referrals, support groups, and word of mouth. Participants are randomized into two groups, one of which receives the intervention now, and one of which receives the intervention later. Intervention families attend 14 sessions that

TABLE 6-1 Dimensions of the Ecological Validity Model, as Applied to Parents Taking Action

SOURCE: Lopez presentation, citing Bernal et al., 1995 (2022), slide 4.

cover topics including child development, autism information, advocacy, and skill-based sessions on communication, making friends, and addressing challenging behavior. During COVID-19, said Lopez, the intervention continued remotely, and community partners worked together to maintain connections between families and the program. Lopez noted that one lesson learned was that building strong partnerships allowed the program to withstand unexpected changes. In addition, she said, it was essential to create and maintain flexible expectations, to have trusted community members as champions of the project, and to have diverse organizational partners including those from schools and clinics.

ECHO AUTISM

The current system for autistic children and their families is set up around a lot of inequities, said Kristin Sohl (University of Missouri-Columbia School of Medicine). Programs are often located at academic medical centers, which restricts access to urban populations and higher-income families. Many primary care providers are not sufficiently trained in disability, and specialty centers have long waitlists. Those who can access

care are often families who have the resources to travel and take time off of work. Lack of access to diagnosis and intervention leads to increased health disparities around socioeconomic, racial, and geographic lines. Sohl emphasized that while she focuses on autism, the inequities of the system extend to most, if not all, areas of disability. When the pandemic hit, Sohl said that it gave all people a glimpse of what it was like to not be able to access healthcare. She stressed that the temporary difficulties of clinic closures and difficulty connecting with providers were not equivalent to the disparities and challenges that many people face on a regular basis, but that the pandemic highlighted the areas in which the system needs to do better.

The Extension for Community Health Care Outcomes (ECHO) program originated at the University of New Mexico to make treatment for Hepatitis C available to all people across the state, and has grown exponentially in the years since. ECHO is designed “to move knowledge, not people,” said Sohl. ECHO is not dependent on in-person visits, but instead uses other methods to improve care for people, wherever they are located. The program focuses on moving scientific discoveries and best practices into clinical practice in a more efficient manner, using the four “ABCDs”:

• Amplification uses technology to leverage scarce resources;
• Sharing Best practices to reduce disparities;
• Using Case-based learning to master complexity; and
• Web-based Database to monitor outcomes.

Sohl explained the details of the ECHO Autism Primary Care program. ECHO uses an “All Teach, All Learn” approach, in which specialist teams, local care teams, and individuals with autism participate in an interactive, collaborative process of teaching and learning. An interdisciplinary team of content experts partner with primary care clinicians; they hold 90-minute meetings twice a month. The team uses de-identified cases about early diagnosis and co-occurring symptom management in order to build capacity for best practice care. The goal is to develop local expertise and community access to care; Sohl said that in the state of Missouri, all children are within 45 miles of an ECHO autism primary care clinician. In addition, the virtual nature of the program allows them to reach individuals across the world in order to empower local experts to lead and share.

Moving Forward

In order for programs like ECHO to meet their potential, said Sohl, there is a need for changes to policy and practice. First, there is a need for payor advocacy reform to change insurance practices that currently create diagnostic and treatment bottlenecks that further existing inequities.

Second, federal or state funding is needed to support the professional development of generalists so they can provide appropriate supports and services in their local clinical practices. Finally, there is a need for intentional integration of disability best practices within general clinical education and training. Sohl emphasized that education on disability needs to be expanded not only in medical training, but also in the training of other professionals such as speech therapists and occupational therapists.

DISCUSSION

After the presentations, Myrick moderated a discussion session with the panelists, asking questions and relaying questions from the audience as well.

How did you and your programs adapt and pivot during the pandemic?

There were a lot of assumptions made early on in the pandemic, said Raphael, “we assumed that all patients wanted to stay home and wanted telehealth.” While this may have been true in the beginning, many families eventually wanted to come back in because their connection with providers was so critically important. As other speakers have noted, said Raphael, it is essential to talk with patients about their values and their priorities, rather than making assumptions about what they want. Sohl said one of the most powerful things that happened during the pandemic was learning what was actually possible, because it is what had to be done. For example, Sohl talked to clinicians who felt as if there were no options for diagnosing autism because they couldn’t perform the usual in-person assessments. However, she said, waiting two years to evaluate a patient was simply not an option. At ECHO Autism, Sohl said, they continued to develop strategies and partnered with primary care colleagues to figure out what could work. Leaving people out, whether because of the pandemic or because they live too far away, she said, cannot be an option. Lopez echoed these thoughts, noting that in PTA, people do what they need to do to make the program work in their communities. For example, the version of PTA for Latinx families is called promotoras, but in Black or Navajo communities, they are called something different. Lopez said that professionals and leaders need to be comfortable with their programs and ideas being tailored to the needs of communities, rather than insisting on implementing a program that may not work in a new context.

Where are the greatest opportunities to expand your current programming, and are there stakeholders that need to be added to the conversation?

Fuentes responded that during the pandemic, families who had access to adaptive recreation outdoors and had equipment to support their outdoor

recreation fared much better than families who relied on indoor places that closed down. There is an opportunity to improve the well-being of children with disabilities and their families by expanding families’ access to different types of recreation, she said. For example, she said, the Challenge Alaska program does a great job of keeping people with disabilities active and moving.¹

Lopez shared that her work has generally involved working with parents of children with disabilities, and relying on their perspectives and needs to guide programming. She said that it would be enormously helpful to know what the youth themselves think about their needs and how they are feeling about the stage of life they are in, and noted that youth are key stakeholders she would want to hear from. Myrick agreed and added that if we want youth to become adults who can self-advocate, we need to start supporting them in that process when they are young.

What approaches are most effective in taking on the power dynamic between providers and children and families?

This is a real issue, said Sohl, and particularly in the disability space where there is already a significant power differential. To address this issue, we need to consider how clinicians are being trained, and what role models do they see in their training. Are they seeing leaders that demonstrate how to minimize power differentials, or how to elevate people whose voices historically have not been heard? In addition, we need to challenge the assumptions that people with disabilities are less than or incapable. Clinicians need practice and modeling in order to get to a place where they view people with disabilities not as people to be cared for, but as people who are capable of making decisions and collaborating in their own care.

If you had a magic wand, what transformational or incremental change would you make to care of children with disabilities?

• Sohl: Clinicians in every community would feel confident and competent in their ability to partner and care for people with disabilities, and payers would pay for the care that is needed.
• Lopez: Promotoras and other community health workers would be adequately paid for the valuable services they deliver to the communities, regardless of their ethnicity, education level, or immigration status.
• Fuentes: There would be funding and resources for things that are necessary but not considered medical equipment, such as accessible transportation, accessible recreation, and accessible social environments.

___________________

¹https://www.challengealaska.org/

• Raphael: Families who are not typically part of the process would be included in the conversation and given a seat at the table; when we don’t include all perspectives, health inequities are often propagated or worsened.

This page intentionally left blank.