RAPID Survey
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RAPID Survey

The Forgotten Households

Households of young children with disabilities are not getting the support they need during the COVID-19 pandemic.

By the RAPID-EC Project Team

When we launched the RAPID-EC weekly nationally representative survey on April 6, we were sure that we would find that households with children age five and under would need additional support during the COVID-19 pandemic.

We were less prepared to see dramatic results for households in which there is a young child with a disability.

Our data suggest that these households are facing particularly difficult circumstances and require additional resources and supports.

One subgroup that stands out dramatically in our data but hasn’t received much attention elsewhere is households in which there is a young child with a disability.

Given the size of the subgroup—over 1.9 million children under age five have a disability, which is nearly 8% of all U.S. children in this age group—it is all the more surprising that the problem has received little attention elsewhere.

What we are hearing in survey data

Rates of stress, depression, and anxiety in adults are significantly higher in households where a young child has a disability than what is being reported for all other households in our surveys.

Reported rates of child behavior problems and anxiety are similarly high.

Young children with disabilities and their caregivers fare worse across a range of mental health markers than their counterparts.

These reports of distress have been elevated since we began conducting the weekly surveys, meaning that they are not getting better as households adjust to life during the pandemic.

Reported distress is high for caregivers of young children.

Of particular concern are the reports of elevated levels of child anxiety, which are noteworthy in several ways.

First, our survey data suggest a “double hit” from having a young child with a disability and having financial difficulties. The data show that child anxiety levels appear to be especially high in households in which a child has a disability and there are financial difficulties, including those that have sustained a loss of employment, in which there are difficulties in paying for basic necessities, and more generally in which income is below the federal poverty level.

Behavioral problems declined less and remained higher in young children with disabilities than in those without.

Second, anxiety levels have not improved. When we look at trends across time, we see that although levels of child anxiety actually diminished at the outset of the pandemic for all children (likely as a result of children being at home with parents and experiencing fewer daily transitions), and have subsequently remained fairly stable since then, the initial and ongoing levels of child anxiety among those with a disability diminished significantly less and have remained significantly higher than for other children. This indicates an ongoing need for supports in this area for both children with disabilities and their caregivers.

Anxiety levels for young children with disabilities declined less and have remained significantly higher than for other children.

Possible explanations

Many factors may be contributing to the differences we are seeing in households in which a child has a disability.

Research conducted before COVID-19 found that caregivers of young children with disabilities often feel isolated; the pandemic may be further cutting caregivers off from social networks that understand the complexities of their daily lives.

In addition, the daily stresses of providing care for a child with special needs can be considerable, including assisting with mobility, feeding, and other basic life skills.

The daily stresses of providing care for a child with special needs can be considerable.

Prior to the pandemic, if a child was enrolled in an early childhood special education setting during the day, adults in the child’s household had some time in which the child was not in their direct care — allowing for income-generating activities as well as needed rest and relaxation.

In contrast, during the pandemic, many in-home and community-based early intervention services have diminished. The services that continue to be delivered have shifted to remote delivery, and equity issues in access to those services are likely to exist based on whether households have broadband, computers, and smartphones.

In addition, some disabilities may make it difficult for children to interact virtually with service providers.

Notably, increased time at home caring for a child with a disability may not be all negative.

  • Parents and other caregivers are more likely to be present when their children accomplish challenging tasks or reach developmental milestones, which is especially meaningful for parents of children with disabilities.
  • Families also have more time together to deepen their relationships and attachment.

Nevertheless, it appears from our survey data that the net effect of the pandemic on households in which a young child has a disability is negative.

The state of the research

We cannot yet discern from our data what is contributing to the challenges that households of young children are experiencing. It will require greater understanding of the causes of these difficulties before we are able to suggest specific actions to help these households.

The data indicate that this sector of the population clearly needs enhanced support.

However, the data do indicate that this sector of the population clearly needs enhanced support and innovative approaches to service delivery, and that federal and state requirements for services should be monitored.

Because of our ability to launch a new survey every week and include additional questions, we have the opportunity to probe deeper into these issues. Expect to hear back on this topic in future postings.

It is also important to note that childhood disability, as defined in federal law, is an umbrella category that includes individuals with:

[a] physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.

At present, we don’t have data from enough households of young children with a disability to examine whether particular types of disabilities are creating specific types of challenges. However, as our data collection continues, we will be able to focus on this information and will publish what we learn along with policy recommendations.

Stay tuned.

About the project

When the COVID-19 pandemic emerged last winter, there were over 24 million children age five and under living in the United States. This period of early childhood is a critical window that sets the stage for health and well-being across the lifespan. As such, it is essential during the current health and economic crisis to listen to the voices of households with young children.

The weekly survey of households with children age five and under launched on April 6, 2020. Since then, we have been gathering weekly data about child and adult emotional well-being, financial and work circumstances, availability of healthcare, and access to child care/early childhood education.

We are also examining impacts of federal, state, and local policies designed to support households with young children. In the coming weeks we will assess the effects of different strategies being considered for the reopening of states, and we will learn whether certain groups of families with young children are faring better or worse over time.

The project will help us direct resources to those in greatest need.

To date, we have analyzed data from four weeks of surveys, with information from over 2400 caregivers. We have heard from all regions of the country across the entire economic spectrum, including those with little or no income as well as middle-class and affluent households.

Our survey participants are racially and ethnically diverse, and include rural, urban, and suburban households. Many of the trends in the weekly data confirm what has been reported elsewhere. We are seeing greatly increased levels (compared to retrospective pre-pandemic reports) of caregiver and child distress.

Not surprisingly, many (although not all) of these challenges are greatest in lower-income households.

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Amplifying parent and caregiver voices and their experiences of well-being, economic hardship, child care, health care, employment and working conditions.

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