parent incarcerated, exposure to child abuse, and exposure to violence. Adversity in childhood carries a “long tail” that can impact growth and development throughout the life course, she said. Moreover, some disabled children are impacted by racism, discrimination, classism, sexism, and other types of discrimination. These intersectional identities and multiple challenges, said Boynton-Jarrett, compound the risk of marginalization and compound the impact of the COVID-19 pandemic for children with disabilities.

Moving Forward

Moving forward, it is critical to adopt an ecological approach that addresses trauma and trauma experiences for children with disabilities who lived through the COVID-19 pandemic, said Boynton-Jarrett. The foundation of trauma-informed and trauma-sensitive care is building a sense of community and belonging, she said, although this has been a challenge during the pandemic when routines and connections were disrupted. Trauma-informed care also requires a mindset change in order to address the root causes of challenges. She noted, for example, that the experiences of children with disabilities are shaped by our social structures, policies, and economic systems; it is essential to address the structures that are creating the inequities we hope to solve. In addition, it is critical to intentionally build resilience at the level of the individual, family, and community, and to root out ableism that often pervades notions of resilience. Systems need to have a process for screening families and children for trauma, and for incorporating strengths and protective factors. During the pandemic, there were incredible successes that created new pathways for collective leadership among parents and caregivers; Boynton-Jarrett said we need to identify these “bright spots” where people are thriving so that we can learn and promote approaches that are working. Finally, she said, we need to care for and about caregivers, including educators, researchers, providers, and others for whom the pandemic has taken a toll. These caregivers may be experiencing secondary traumatic stress, vicarious trauma, compassion fatigue, and burnout. There is a need for community-informed and community-led supports for children, families, and caregivers, in order to begin to heal the trauma and build a resilient future.

TELETHERAPY FOR CHILDREN WITH DISABILITIES

There was a rapid shift to telehealth and teletherapy for children with disabilities during the pandemic, said Kristen Choi (University of California, Los Angeles School of Nursing), and these experiences were not always positive for families. Choi shared the results of a survey of parents that asked about their experiences with virtual delivery of applied

behavior analysis, speech therapy, occupational therapy, and psychotherapy (Figure 8-1). Most families, she said, rated teletherapy as worse than in-person therapy. Choi and her colleagues looked at the differences between families that liked teletherapy and those who did not, and found that families who had favorable experiences with teletherapy had higher levels of COVID-related stress, had older children, and had multiple children with a disability. Families who rated teletherapy the lowest were those who had higher caregiving strain related to caring for their child with a disability.

One of the lessons learned from the pandemic experience with teletherapy, said Choi, was that telehealth was used to increase options for those who already had access to care, but it was generally not used to increase access to care for those who did not. Choi reminded workshop participants that the mental health burden of the pandemic was significant, particularly for individuals with disabilities and their families, and that there was an increased need for mental health care services. One of the great promises of telehealth is that it could be used to increase access to care, but it was not leveraged in the best way it could have been, she said.

Moving Forward

Based on the experiences during the pandemic, Choi identified three ways that telehealth could be utilized to meet its potential and to help improve and expand care for disabled individuals and their families.

First, there is a need to sustain high-quality teletherapy options for those who can benefit from this modality. This will require integrating

telehealth infrastructure with existing healthcare technology, ensuring that reimbursement for telehealth is sufficient and sustainable, and training providers on how to provide high-quality mental health services via telehealth. Choi noted that building a good therapeutic relationship is essential for effective therapy, and that this can be more challenging to achieve when not in-person.

Second, Choi would like to see telehealth leveraged to increase access and address unmet needs among marginalized populations. There are a number of challenges that will need to be addressed in order to do so. Some patients do not have the Internet access, physical space, quiet environment, or privacy required to successfully engage in telehealth. For example, Choi said that some of her patients are children who live in a two-bedroom apartment with multiple generations and many family members. Choi suggested that this barrier could be addressed by leveraging community spaces and assets such as schools, health centers, churches, and community centers. Another barrier to increased access for marginalized populations is the cultural appropriateness of technology and telehealth. Choi said that studies have shown that certain communities prefer to see providers in person; increasing access to these populations will require cultural awareness and sensitivity and tailoring services to make them a good fit.

Finally, COVID highlighted a number of existing problems in mental health, including the shortage of mental healthcare providers. One way to address this issue, said Choi, is to leverage the nursing workforce to help meet some behavioral health needs. Nurse practitioners are more likely than physicians to practice in rural and underserved areas, and there are programs to train nurse practitioners in mental health care so that they can serve these communities. In addition, there are programs such as the Nurse-Family Partnership that have strong evidence of prevention in vulnerable families. Other long-standing needs that worsened during the pandemic, said Choi, include the need for interventions to support the mental health of parents of disabled children, and the need for affordable and accessible childcare.

LONG COVID

The morbidity of Long COVID may exceed the morbidity associated with acute COVID-19 infections, particularly in young and healthy populations, suggested Ian Ferguson (Yale University School of Medicine). Post-acute infection syndromes are fairly common across many bacterial and viral infections, although they were not previously associated with coronaviruses. Post-Acute COVID Syndrome (also known as Long COVID) is the specific set of symptoms associated with COVID-19 infection, and there are several subsets. Estimates of the prevalence of Long COVID in

children and adolescents vary widely, depending on the time frame used and the symptoms studied; estimates range from six percent to 46 percent. Symptoms are diverse and spread across many systems and includes fever, chills, cough, fatigue, shortness of breath, and headaches. The predominant symptom in both children and adults is fatigue, which can have a profound effect on school performance, said Ferguson. Evidence on who is most at risk for developing Long COVID is still accruing, but early evidence suggests that older adolescents and females with poor baseline mental and physical health may be more likely to be impacted. Ferguson noted that the risk factors for severe acute COVID-19 infection are not the same as for Long COVID, and that identification and management of Long COVID should begin with recognition of symptoms and empathy for the patient.

There are several entry points at which a patient may begin the process of diagnosing and managing Long COVID. One would be a school-based clinic or health program; the advantages of this setting are a low barrier to entry, and the ability to identify students based on unexplained absences or school-related function issues. Another entry point is the primary care office, where a provider can screen for other etiologies of symptoms and refer to a specialist if needed. Finally, patients may enter care at a large subspecialty clinic for Long COVID; Ferguson argued that this is the worst entry point because it indicates that the patient has spent a great deal of time suffering symptoms without meaningful therapy. Regardless of where a patient enters, Ferguson said that they benefit most from an empathetic and person-centered approach to their evaluation, with special attention paid to the impact of symptoms on daily function in school and social situations. The goal of treatment should be to increase function in successive days; while symptoms may be treated individually, optimization of the patient’s daily function and activities should be the end goal.

ENGAGING AND EMPOWERING COMMUNITIES

Academics have a long history of paternalistic and exploitative models of collaboration, contended Maurice Sholas (Sholas Medical Consulting, LLC). Sholas argued that the model needs to be flipped, so that the power of families, neighborhoods, and communities is recognized, and health professionals seek to speak a common language with the community. This approach of making the academic world and the community culture bearers equal, said Sholas, is the emPOWER NOLA method for community elevation and centering of communities to solve complex problems.

Sholas shared examples from New Orleans to illuminate how social networks can be used to improve communication and health outreach within communities. There are several naturally occurring social networks in New Orleans, he said, including Second Line Krews, Social Aid and

Pleasure Clubs, and Mardi Gras Indians. These groups have decades of history in the communities of Orleans Parish, and they serve a strong healing purpose for people who have been historically disenfranchished from traditional mental health and social supports. During the pandemic, these groups participated in a number of efforts, including calling on residents to wearing face coverings, using the motto, “Mask up so we can mask next Mardi Gras season!” Another example, said Sholas, was the Zulu Social Aid and Pleasure Club partnering with the New Orleans Health Department to provide vaccines to 200 Zulu members and nearby residents.

emPOWER NOLA leverages and connects naturally occurring social networks to create community-based, trauma-informed spaces for children. It uses a collaborative model of respect and exchange, and trains culture bearers and mental health professionals to speak a common language. The goal of emPOWER NOLA is to help more children living with trauma access services by (1) increasing the cultural competence of our already fragmented mental health treatment network and (2) empowering communities to more effectively access resources to support and heal their children.

Moving Forward

Sholas noted that structural and systemic inequities present barriers to the well-being of children with disabilities, and made several suggestions for making changes on this front. First, he said, when a disparity or inequity is observed, make every effort to collect data so that action can be taken. Second, insist that institutions of higher education have classes and providers that represent the diversity of the community. In addition, the leadership and professional staff of the healthcare system should reflect this diversity. Third, review plans for new or expanded health systems with an eye towards access to public transportation and proximity to populations that are historically marginalized. Sholas shared an example from New Orleans: to get to Children’s Hospital from one predominantly Black neighborhood, it takes over an hour and a half and three bus changes. With these types of barriers, children from this community are likely to only come to the hospital if they have been very sick for a long time.

In closing, Sholas gave workshop participants ideas for theoretical activities they could use to empower their own communities, based on the model and experiences of emPOWER NOLA:

• Identify community culture bearers;
• Listen to and incorporate the priorities of the community equally with the priorities of research or public policy;
• Engage with naturally occurring social networks as peers, not pawns, for mutually beneficial interventions;

• Develop instruments to measure programs (surveys, cultural competence analysis, and focus groups) that emphasize collaboration and cohesion;
• Provide mechanisms to elevate the voices of those served;
• Elevate community partners to find solutions that do not require perpetual sponsorship or dependence; and
• Offer continuing education credits and certificates of completion to community partners in order to leave something tangible.

DISCUSSION

Who are the relevant stakeholders who are necessary for the next stage?

We need to include “not just the usual suspects with the right resumes,” but the people who have the right skill set, said Sholas. If we are doing things to people rather than with people, he said, there are not the right people in the room. Boynton-Jarrett agreed and said that there is a need to be proactive about developing resilient community systems that are more prepared for future disasters. To do so, we need to tap into existing strengths and social connections, and utilize and formalize the leadership that exists. By setting up formal structures of power that are shared with members of the community that tap into local leadership, systems are in place to deal with the next disaster. Choi added that as we think about stakeholders, we need to reach out to stakeholder groups who are on the ground, such as school nurses, rather than just people with the right academic credentials.

What is the first step in getting to know communities who are grappling with Long COVID and children with disabilities, with an equity lens in mind?

“I always come back to language,” said Sholas. Language can be infantilizing or empowering, strong or weak, inclusive or exclusive. Every community has an infrastructure, an organizational structure, and a language; when we are considering how to relate to and empower communities, we need to think about how to talk to communities in a language that resonates. Sholas gave examples of this phenomenon, noting that it is in part responsible for why Black women are dying more in childbirth, or why non-English speaking children wait longer for pain medication. Choi added that it is essential to build trust and build a relationship with a community, particularly when the trust may not be there historically. She noted that this can take many years to accomplish. It is critical to think about where the mistrust may be coming from, and building trust first before jumping in with a project, she said. Ferguson added that the community of people with Long COVID faced mistrust and disbelief for a period of time, and it

took a groundswell of local support in order for people to listen to these patients and hear their perspectives.

What is the role of public health in regard to providing greater access for services?

During the COVID pandemic, it was communities who responded first and most effectively around social connections, said Boynton-Jarrett. There is community wisdom around ways that neighbors can support neighbors. There is a need to create a society in which there are people on every block who can support their neighbors and get honored for their time. “We are way beyond waiting for our traditional system,” she said; we need to tap into community leadership and grow it. Sholas said that while public health is important, public policy can be even more critical. For example, some individuals cannot access medical care without multiple bus transfers and several hours; “this is a physical barrier that no amount of public health is going to fix.”

If you had a magic wand, what would you make happen? If there is one imperative mustdo, what would it be?

• Choi: Make strategic investments in the nursing workforce in order to leverage nurses for behavioral health. There is a serious nursing shortage, and investments in nursing—especially in school-based health centers, public health settings, and behavioral health settings—are needed to make a difference.
• Boynton-Jarrett: Respect and honor the dignity of children and youth with disabilities and their families by incorporating them as co-designers and leaders in thinking about research, programming, and service. There is a need to shift the balance and be more proactive about breaking down silos and working collaboratively across sectors and in partnership with the community.
• Ferguson: There is a need to explore and make accessible approaches such as non-pharmacologic modalities, physical therapy, biofeedback, meal planning, and lifestyle changes that can improve the lives of those with Long COVID.