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Introduction
BACKGROUND
On June 13–15, 2022, the National Academies of Sciences, Engineering, and Medicine held a workshop entitled “Supporting Children with Disabilities: Lessons from the Pandemic.” The workshop was planned by a committee in accordance with a Statement of Task (Box 1-1), with the purpose of exploring and highlighting promising approaches and innovative strategies that have been employed during the pandemic to address the needs of children with disabilities and their families.
At the outset of the workshop, speakers explored key concepts and frameworks necessary to understand efforts to support children with disabilities, reviewed the challenges facing children with disabilities and their caregivers during the pandemic, and highlighted lessons of lived experience from youth with disabilities and caregivers of youth with disabilities (see Appendix A for complete workshop agenda). A primary aim of the workshop was to explore innovative strategies employed during the pandemic, with an emphasis on underserved or under-resourced children and their families.
ORGANIZATION OF THE PROCEEDINGS
This Proceedings describes the workshop panel presentations and the discussion that followed each panel. The chapters are organized around the key topics of the workshop, with some chapters including summaries of related content from multiple panels. Chapter 1 highlights key concepts and definitions, including an overview of how the pandemic impacted children
with disabilities and their families, and features presentations of people with lived experience—those with disabilities and their family members. Chapter 2 focuses on telehealth in the hospital and outpatient settings, and describes how pandemic-era innovations could be utilized moving forward. Chapters 3 and 4 examine school and home care settings, and summarize discussions about how care in these arenas could be improved. Chapter 5 looks at the protections provided to children with disabilities under state and federal policy, and how changes to policy during the pandemic provided much needed flexibility to families. Chapter 6 features presentations and discussion about health equity, both in general and in specific communities. Chapter 7 focuses on programs aimed at public health and emergency planning, and looks at how emergency plans can be inclusive of children with disabilities and their families. Chapter 8 takes a forward-looking approach, considering how recovery efforts can be inclusive, effective, and help heal communities as we move out of the pandemic. Finally, Chapter 9 summarizes the reflections shared in the workshop’s closing sessions.
The full meeting agenda alongside biosketches of the planning committee members and workshop presenters appear in the appendices. A full recording of the workshop and speaker’s presentations have been archived online.1 This proceedings has been prepared by the workshop rapporteur as a factual summary of what occurred at the workshop. The views contained
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1 For more information, see: https://www.nationalacademies.org/event/08-25-2021/reducing-inequalities-between-lgbtq-adolescents-and-cisgender-heterosexual-adolescents-a-workshop
in the proceedings are those of the individual workshop participants and do not necessarily represent the views of other workshop participants, the workshop planning committee, or the National Academies of Sciences, Engineering, and Medicine.
OPENING REMARKS
Amy Houtrow (Committee Chair) began the virtual workshop by welcoming participants, thanking the Health Resources and Services Administration (HRSA) for their sponsorship, and introducing the planning committee. Houtrow gave participants a brief overview of the topic of the workshop, and presented relevant terms and definitions.
There are about 14 million children and youth with special health care needs (CYSHCN) in the United States, said Houtrow; CYSHCN are children or youth who have a chronic physical, developmental, behavioral, or emotional condition and require health and related services of a type or amount beyond that required by children generally. Houtrow introduced participants to the Blueprint for Change, a national framework for a system of services for CYSHCN. The development of the Blueprint for Change was spearheaded by HRSA’s Maternal and Children Health Bureau, and was presented in a supplemental issue of the journal Pediatrics.2 The Blueprint for Change describes the four critical areas for the well-functioning of a system for CYSHCN: quality of life and well-being, access to services, financing of services, and health equity. These components are necessary, said Houtrow, in order for CYSHCN to enjoy a full life and thrive in their community from childhood through adulthood. Houtrow described the goals for each of these components.
- Quality of Life and Well-Being: The service system prioritizes quality of life, well-being, and supports flourishing for CYSHCN and their families.
- Access to Services: CYSHCN and their families have timely access to the integrated, easy-to-navigate, high-quality health care and supports they need, including but not limited to physical, oral, and behavioral health providers; home and community-based supports; and care coordination throughout the life course.
- Financing of Services: Health care and other related services are accessible, affordable, comprehensive, and continuous; they prioritize the well-being of CYSHCN and families.
- Health Equity: All CYSHCN have a fair and just opportunity to be as healthy as possible and thrive throughout their lives (e.g., from
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2https://publications.aap.org/pediatrics/issue/149/Supplement%207
school to the workforce), without discrimination, and regardless of the circumstances in which they were born or live.
Of the 14 million CYSHCN in the U.S., about half have disabilities; which are defined as health conditions that consistently and often affect their daily activities a great deal. Houtrow noted that there are varying ways to measure and define childhood disability, as well as smaller subgroups, such as children with the most complicated healthcare needs who require the most extensive supports and services. Houtrow explained that the accepted language used in this space varies: some speakers at this workshop used the person-first term “children with disabilities,” while others use the identity-first language of “disabled children.” Some children are more likely than others to experience disability. While around 10 percent of children are disabled, this group includes a disproportionate number of children living in poverty and children of minoritized racial and ethnic groups. Houtrow explained that the term “minoritized” is used to emphasize the impact of racism and discrimination on health outcomes. She noted that children with disabilities often hold intersecting identities subject to systems of oppression including racism, classism, ableism, and are also overrepresented in systems such as the juvenile justice system and foster care system. In addition to being overrepresented in the population of children with disabilities, children of minoritized groups and those from lower-income families are less likely to have their needs met by current systems of care, she said.
It takes a village to raise a child, said Houtrow, but not all villages are equipped with the resources necessary to meet children’s needs. The social and political determinants of health shape the services and supports that are available and accessible to children with disabilities, and there are ample opportunities to improve the system in order to address the root causes of disparities and differences in health outcomes. To highlight the importance of improving the system for children with disabilities, Houtrow shared a quote from the Blueprint for Change (Brown et al., 2022):
Over the past 2 years, families have felt the weight of the pandemic, natural disasters, social and economic unrest, and the traumatic toll these crises have on their children. Families with children and youth with special health care needs (CYSHCN) often experienced this trauma more acutely in their ability (or inability) to access needed health care and supportive services.… Families of CYSHCN tell us that the current system of services is not working for their children. There are vast inequities experienced by families in accessing and paying for services and support to care for their children; the system is not responsive to their needs or values. If the system is not working for CYSHCN, it is likely not working for children generally, any of whom could
have a special health care need at some point in childhood. We have opportunities to take advantage of rapid changes in the health care landscape, including advances in technology and new mechanisms to finance care to advance the existing system and address equity through a fresh new lens.
This workshop, said Houtrow, was designed to use this “fresh new lens” to draw insights from the pandemic to improve services and support for children with disabilities. Specifically, the workshop aimed to:
- Explore promising approaches and innovative strategies employed during the pandemic to address challenges faced by children with disabilities and their families, including access to clinical service and treatment needs, home caregiving, and mental health treatment with an emphasis on underserved/under resourced children and families; and
- Consider policies and/or practices that might be sustained or implemented beyond the pandemic to support children with disabilities and their families.
Houtrow noted that speakers were asked to focus on how lessons from the pandemic could be applied to the future, rather than on describing the challenges faced during the pandemic itself. In order to provide this important context for the workshop sessions, Houtrow gave a brief overview of how the COVID-19 pandemic impacted children with disabilities. Following this overview, workshop participants heard from a panel of youth with disabilities and caregivers who provided insight into their lived experiences. The remainder of the workshop was divided into panel presentations and discussions on specific topics; this workshop summary follows the structure of the workshop (full agenda in Appendix A).
Impact of the COVID-19 Pandemic on Children with Disabilities
Children with disabilities and their families were impacted in numerous ways by the COVID-19 pandemic that began in early 2020, said Houtrow. She focused on five specific impacts: fear, immediate loss of services and routines, feeling overlooked or not prioritized, financial strains, as well as the loss of loved ones. Families feared infection from the virus and wondered how their child would be treated if he or she were hospitalized. At times during the pandemic, a shortage of ventilators and hospital space triggered discussions of how to allocate scarce resources. One mother, said Houtrow, feared that her son’s disabilities would put him in the back of the line for care, worrying that ideas of ableism would result in ranking the value of his life below others.
Children and families also experienced the immediate loss of services and routines such as school, therapy, or community services; one survey found that 92 percent of families with CYSHCN experienced these types of disruptions in their daily lives (AAP, 2021a). In addition, during the pandemic, many children with disabilities and their families felt overlooked and not prioritized, said Houtrow. This took many forms, she said, including difficulty accessing vaccines, lack of special education services, and the shift toward a personal model of risk assessment (e.g., one-way masking) that left vulnerable people less protected. Families with CYSHCN reported more employment changes, including layoffs and reduced hours (AAP, 2021b), and some were forced to quit their jobs in order to care for their child or to reduce their household exposure to the virus. Finally, said Houtrow, families were impacted by the loss of loved ones. As of October 2021, an estimated 150,000 children in the U.S. had lost a primary caregiver during the pandemic (Unwin et al., 2022), with children of minoritized racial and ethnic groups bearing their burden disproportionately. To summarize, said Houtrow, it is well-known that the systems of services and supports were not meeting the needs of children with disabilities generally, and the situation was even worse for multiply marginalized children. In this sense, the COVID-19 pandemic exacerbated many existing challenges but it also presented an opportunity to do better.
LIVED EXPERIENCE
The first panel of the workshop featured the voices of individuals with direct experience living with disabilities during the pandemic or acting as a caregiver for a child with a disability during the pandemic. This session, said Emily Hotez (Committee Member), was designed to highlight how the irreplaceable knowledge and expertise of individuals with lived experience can guide the conversation about lessons learned from the pandemic and the future of supporting children with disabilities. Hotez moderated the conversation by asking a series of questions to panelists Emily Cowen (Youth as Self-Advocates, Kids as Self-Advocates), Kasey Hodges (Arkansas Support Network), Roseani Sanchez (Family Voices National), Doris Tellado (University of Florida North Central Early Steps), and Lauren Ware.
During the pandemic, which services and supports did you/your family find to be particularly helpful? Can you tell us about an experience with that service or support?
Tellado began by saying that technology was vital for the well-being of her son with complex medical needs during the pandemic. However, the successful utilization of technology was due in large part to elements that
were in place before the pandemic. Tellado’s son receives care through a medical home coordinated care clinic, and this pre-existing system facilitated communication and care once the pandemic struck. For example, the clinic had a portal for sharing information and communication between providers and families; Tellado used the portal to share a picture of her son’s skin wound and they were able to receive care over a weekend and without an in-person visit. Further, said Tellado, the system worked because of trust, good communication, and a willingness on the part of staff to make it work. Hodges concurred that technology was essential during the pandemic, noting that Zoom and Google Meet allowed her to talk with friends and family, hold meetings, and attend doctor’s appointments. These technologies prevented her from feeling isolated, which would have made everything more difficult, she said.
“Before the pandemic, telehealth was not an option for our family,” said Sanchez. Once the pandemic began however, Sanchez and her twin boys were able to access telemedicine and teletherapy appointments, with insurance having covered this care. While it took several months to get set up, she said, this was a service that was a benefit during the pandemic. Cowen agreed that she experienced some benefits from the expanded use of technology. For example, prior to the pandemic, attending university classes were challenging due to unreliable transportation and the need for a personal care assistant. Once all classes shifted to remote learning, attending classes was easier and Cowan was able to be more independent with her education. Ware had a similar experience with accessing services. Many of her pre-pandemic appointments were an hour or more from her home so shifting to telehealth services saved time and money. Ware noted that she still uses telehealth appointments because she finds that they are easier.
What are some challenges brought on by the pandemic that you continue to have that you want to make sure service or healthcare providers address moving forward?
Despite the many successes of technology during the pandemic, there were also challenges. Ware said that, unlike many providers, her primary care doctor did not offer online appointments during the pandemic, making care “completely inaccessible.” Sanchez expressed her fear that the option for telehealth will be taken away or that insurers will stop paying for it. Telehealth should always be an option in order to make the healthcare system more accessible, said Ware. Another challenge, said Sanchez, is that many providers have left the field, making healthcare even less accessible.
What were some misconceptions about people with disabilities during the pandemic?
Many people, said Cowen, assumed that all disabled people were at higher risk for developing complications from a COVID-19 infection, which is not true. Ware agreed, going on to say that there was stigmatization and an assumption that people with disabilities would need to quarantine longer than others. Tellado noted that the opposite idea was also circulating; people assumed that the crisis equally impacted all people, when in fact some people with disabilities were impacted to a far greater degree. Another misconception, said Ware, was that the social isolation and lack of communication due to the pandemic would be less difficult for people with disabilities. To the contrary, Ware said that the pandemic taught her how much she needs communication as an autistic person.
What would you like other individuals/families who might be in similar situations to your own to know right now?
“Advocate for your needs and ask for help if your needs aren’t being met; your voice has power,” said Hodges. Cowan agreed, “if you don’t learn how to advocate for yourself, you will never get what you actually want.” Sanchez said that she is trying to teach her two boys how to self-advocate and that she was very proud of the youth on the panel for advocating for themselves. Tellado added that the role of a caregiver is to support the self-advocacy of children and youth with disabilities, and to remember that “our children have the right to care that respects their dignity.”
Ware encouraged workshop participants to remember how life slowed down during the pandemic and to learn from this experience. “We were moving so fast and the pandemic kind of taught us what was important to us and what mattered to us,” she said. “Nothing will really ever go back to normal and we will all be impacted by this for the rest of our lives,” she said, “and it is important to support each other and treat people with kindness.”
What have you learned about yourself during the pandemic?
Ware explained that the pandemic encouraged her to slow down. She said it taught her to recognize and focus on the things that are important to her, such as music, friends, and family. Moreover, the pandemic highlighted the fact that “everything can change in a day,” and that it is important to live every day to the fullest. Similarly, Tellado agreed that she learned the need to slow down and appreciate what she has, such as the resources and people that support her and her family. Sanchez said that during the past three years in Puerto Rico, she and her children have experienced hurricanes, earthquakes, and the pandemic. These experiences have helped her learn “to survive, to be brave, and to worry about what really matters.” She strives to teach her children to focus on the positive, to work with what they have, to share with others, and to never give up.
