Supporting Children with Disabilities

Lessons from the Pandemic

During the COVID-19 pandemic, children and youth with disabilities suffered disproportionately compared to their non-disabled peers. To better comprehend the impact of the pandemic on children with disabilities and their families, the National Academies of Sciences, Engineering and Medicine’s Board on Children Youth and Families hosted a virtual open workshop on June 13-15, 2022. The workshop focused on lessons learned from the pandemic for how to support children with disabilities and their families going forward. The Maternal and Child Health Bureau (MCHB) of the United States Health Resources and Services Administration (HRSA) sponsored the workshop.

KEY FACTS

73

MILLION

Number of children in the United States

14

MILLION

Number of children and youth with special health care needs (CYSHCN) in the United States—those who have a chronic physical, developmental, behavioral, or emotional condition and require health/related services of a type or amount beyond that required by children generally.

7.3

MILLION

Number of CYSHCN with disabilities in the United States. Children with Disabilities are defined as children with health conditions that consistently and often affect their daily activities a great deal.

10%

PERCENT

of children overall are disabled, including a disproportionate number of children living in poverty and children of marginalized racial and ethnic groups (Amy Houtrow)

Impact of the COVID-19 Pandemic on Children with Disabilities

Families and CYSHCN experienced fear of infection from the virus, as well as fears about how children would be treated if hospitalized, and about how scarce resources such as ventilator and hospitals would be allocated

Families and CYSHCN experienced immediate loss of services 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, 2021)

Families and CYSHCN experienced difficulty accessing vaccines, a lack of access to special education services, and a 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.

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.

Blueprint for Change

The Blueprint for Change is a national framework for a system of services for CYSHCN. The development of the Blueprint for Change was spearheaded by the Health Resources and Services Administration (HRSA)’s Maternal and Children Health Bureau, and was presented in a supplemental issue of the journal Pediatrics.

Elements of the Blueprint for Change: These components are necessary in order for CYSHCN to enjoy a full life and thrive in their community from childhood through adulthood.

Critical Areas for a Well-Functioning System

Click an area for more information

Looking Forward from the Pandemic 7 Main Themes

As we look forward beyond the pandemic, the innovative strategies and lessons learned to support children with disabilities and their families can be organized into seven main themes:

Engaging people with lived expertise Partnerships and coalitions Flexibility Technology Children with disabilities have rights Coordination and communication Political and social determinants of health

Engaging people with lived expertise

  • Forge formal partnerships such as including individuals with lived expertise on advisory boards
  • Individuals with lived expertise should be leaders in the field and should be engaged every step of the way (from inception to implementation to evaluation - not as an afterthought)
  • Some families have a limited capacity to participate, but it is essential to recognize their needs, and respect and value their perspectives
  • Address the needs of people from multiple marginalized identities and understand the intersection between different identities
Amy Houtrow

“When we don’t engage with people with lived expertise, we miss the opportunity to know what we don’t know, and we fall back on our assumptions about the value or quality of life of people with disabilities, and we set up to perpetuate discrimination and oppression.”

Amy Houtrow, M.D., Ph.D., M.P.H. (Committee Chair), Endowed Chair for Pediatric Rehabilitation Medicine in the Department of Physical Medicine and Rehabilitation at the University of Pittsburgh School of Medicine

Partnerships and coalitions

  • Partnerships and coalitions are key. Existing partnership/coalition structures should be supported and new coalitions should be formed, including between schools and public health systems.
  • Undo structural hierarchies and work to minimize or eliminate their role in partnerships.
  • Title V agencies and/or the Maternal and Child Health Bureau could bring together stakeholders to collaborate

Flexibility

  • Telehealth flexibility – expanding access and reimbursement flexibility with administrative roadblocks such as prior authorization requirements or state-to-state licensing rules
  • Medicaid flexibility - increasing flexibility in Medicaid enrollment and programs (for example, extend Medicaid waiver flexibilities)
  • Workforce flexibility – allowing families to be paid for the care work they provide
  • Flexibility as an integral part of ensuring the rights and dignities of children with disabilities and their families
Shasta Kearns Moore

“States also get a solution to their labor shortage. Connecticut saw a six-fold increase in their labor force when they allowed family caregivers. That means fewer families fighting over the inadequate number of folks who choose these jobs and increase in the quality of workers and a career path for parents if and when their child no longer needs their services.”

Shasta Kearns Moore, Writer for Medical Motherhood, MedicalMotherhood.com

Technology

  • Telehealth and other technological applications that supported remote care access were valuable to children with disabilities who required care during the pandemic
  • Disparities in access to the technology required for telehealth present a challenge for future use and expansion
  • Potential approaches for improving equity: make broadband access a public good, continue and expand payments for telehealth, and respect families’ preferences about technology use
Doris Tellado

“I think there’s a need for telehealth. Some families have to travel long distances to get to a provider. Having remote therapies helped me to fully participate with my son, be creative, and show what was happening in our home. It also supports families who have busy work schedules.”

Doris Tellado, Family Resource Specialist for University of Florida, North Central Early Steps

Ensuring the rights of children with disabilities

  • Respect their rights and ensure that they receive accommodations and services that they are entitled to
  • Issues: Unfunded mandates, lack of clarity around children’s rights, lack of adequate training
  • While children with disabilities are guaranteed a free appropriate public education, the pandemic disrupted many services and virtual school was not always appropriate
  • It is critical that those who are tasked with ensuring the rights of children have adequate funding and training to do so.
  • Enforce and clarify Medicaid access and equity entitlements for CYSHCN. Medicaid entitles CYSCHN access to all necessary care and diagnostic services through the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit and its Equal Access Provision. Increasing the Federal Medicaid Assistance Percentage could also improve access to needed services.
Kasey Hodges

“The pandemic seriously affected disability services. Organizations stopped supporting individuals in fear that the virus would spread. Also, people with disabilities stopped applying to organizations, either because of the virus directly or because of the stimulus and unemployment funds they were receiving. So, individuals with disabilities were left without adequate support.”

Kasey Hodges, Ethics and Mission Integration Director for Arkansas Support Network

Coordination and communication

  • Need for improved coordination and communication with children and their caregivers
  • Important to have a range of decision-makers and those directly impacted at the table, including children with disabilities and their families
  • Improved communication can better ensure that policies and programs are focused on what children and families need
  • Maternal and Child Health Bureau and Title V agencies could help facilitate such communication, particularly during emergencies
Emily Cowen

“I would like individuals that are similar to me to know how important it is to advocate for yourself and your needs. If you don’t learn how to advocate for yourself, you will never get what you actually want.”

Emily Cowen, Marketing Committee Board Member for Youth as Self Advocates (YASA) and Youth Coordinator for CT Kids as Self Advocates (KASA)

Political and social determinants of health

  • Importance of political and social determinants of health such as food security, adequate housing, economic stability to health outcomes
  • Children are not able to access needed health care due to barriers, red tape, and perverse incentives – and barriers may have disparate impact depending on a child or family’s existing resources 
  • Need to simplify access to programs and improve access to all families
Shasta Kearns Moore

“A lot of children with disabilities are growing up in poverty, and this has long-term socioeconomic effects. Many states offer in-home caregiver hours for children, but this program was designed for care for adults and it doesn’t work that well for young families. Families need the choice to employ parents, when that makes sense for them.”

“There needs to be a clearer program for single parent households because it is more complex if you don’t have a legal representative that you can identify as being in charge of the child’s person-centered plan in the household. In some states, they have the home health agency or the state play that role.”

Shasta Kearns Moore, Writer for Medical Motherhood, MedicalMotherhood.com

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Action Steps

Workshop speakers highlighted a number of programs and policies with potential to improve the well-being of children with disabilities – these promising practices are organized into four key areas here. One common theme emphasized across many presentations was that support programs should be simpler and easier to navigate.

  • Convert the Child and Dependent Care Tax Credit to a fully refundable credit that concentrates benefits to the families with the lowest incomes
  • Increase the Supplemental Nutrition Assistance Program
  • Increase housing vouchers
  • Expand the Earned Income Tax Credit to increase payments
  • Reduce burden of accessing programs that support economic stability through single-point- of-entry
  • Eliminate sub-minimum wage
  • Extend Family and Medical Leave Act (FMLA) coverage
  • Expand Vocational Rehabilitation programs (partnering with schools and Title V services)
  • Make sure home and community-based services are covered and available for all who need them
  • Recognize the extra cost of having disabilities and pay families
  • Revolutionize Supplemental Security Income
Molly Fuentes

“My magic wand would include things that aren’t traditionally covered underneath the medical umbrella. Those things are so necessary for community integration, for full participation within a community, such as accessible transportation, accessible recreation, and a social environment where attitudes have been adjusted – starting with kids in school being more inclusive of people with disabilities. Kind of a culture shift where it is the environment that’s shifting rather than people trying to shift to the environment.”

Molly Fuentes, MD, MS, Assistant Professor, University of Washington Department of Rehabilitation Medicine and Seattle Children’s Hospital

  • Federalize Medicaid - eliminates state-to-state variations in coverage and enrollment requirements, the need for children to be covered by private insurance, de-stigmatizes Medicaid because it allows all children to be covered regardless of income, eliminates churning and allows families to maintain consistent coverage, massively decreases administrative burdens
  • Pay providers appropriately for their services including preventative services, care coordination, team-based care, and addressing family needs
  • Authorize people with disabilities as a “health disparities population” under 42 USC Section 285t(d)(1)
Emily Cowen

“In March of 2020, all students went to remote learning. Prior to this, I had to take public transportation to school, which was very unreliable. I also needed a personal care assistant to attend classes with me. So, because of the pandemic, it actually made me more independent with my schooling.”

Emily Cowen, Marketing Committee Board Member for Youth as Self Advocates (YASA) and Youth Coordinator for CT Kids as Self Advocates (KASA)

  • Include marginalized individuals at every stage , prioritizing their perspectives and needs
  • Assess one’s own implicit biases
  • Create and assess programs/interventions through a health equity lens
  • Leverage medical-legal partnerships
  • Teach healthcare professionals about ableism and how it impacts how they evaluate and treat/address the needs of children with disabilities

GET THE WORKSHOP PROCEEDINGS

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Download the proceedings

Learn more about this project

The workshop highlighted promising approaches and innovative strategies employed during the pandemic to address the challenges that children with disabilities and their families faced. It also considered what policies and programs should be sustained or implemented beyond the pandemic to support children with disabilities and their families. In particular, the committee identified practices that could help in efforts to move forward, improving the system of care and increasing access to services for underserved populations. Workshop presenters included service providers, researchers, government leaders, and youth with disabilities and caregivers of youth with disabilities. The workshop also aimed to attend to the inequities that exist among children with disabilities, with a focus on the needs of underserved and oppressed children and families.

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