This blog was written by the Center for Translational Neuroscience at the University of Oregon | Transformative Neuroscience for Social Change. It was originally posted on Medium.
Due to the pandemic, families with children who have special needs are experiencing interruptions in healthcare and decreased social support.
My 5 year old has autism and a speech delay. He has regressed so much. Teletherapy simply did nothing for him and even though his teachers and therapists tried so hard to engage him via video chat it simply didn’t work. ~RAPID-EC parent from New York
I am concerned about my youngest getting medical care. He has special needs and has limited physical therapy due to COVID. He also is supposed to be having surgery in the near future and I worry it may be delayed because of a COVID spike. ~RAPID-EC parent from Minnesota
They need to send out more money. They don’t realize the impact this has on families with special needs children. When daycare programs are closed and the special needs school program is only opened two days a week, and you can’t find someone to watch your child while you work, you can’t earn the money to pay the bills. We need more support with housing. It’s impossible sometimes. ~RAPID-EC parent from Georgia
This week we focus on households with one or more children with special needs. We look in particular at how and why the pandemic has interrupted children’s healthcare in these families. We also examine the social supports available to these families and potential consequences of the weight that COVID is putting on caregiver and child mental health.
- Children with special needs are going to fewer wellness visits and receiving fewer vaccinations than other children.
- Caregivers of children with special needs have fewer social supports than other caregivers.
- Both caregiver and child mental health is suffering in families with a child with special needs, with no signs of improving as the pandemic continues.
In this week’s RAPID-EC posting we focus on families with a child with special needs. In one of our first postings last May, we noted that parents who have a child with special needs were experiencing more anxiety, depression, and loneliness during the pandemic than other parents, and that children with special needs were experiencing more emotional distress. Similar findings about the difficulties families with a child with special needs are experiencing have been reported elsewhere. Notably, these trends existed prior to the pandemic, when services were more available and accessible, but the stresses and strains of the pandemic have added to the challenges and burdens that these families are facing.
The pandemic continues to severely limit social supports and access to services that families with a child with special needs rely upon. The situation has become so dire that some families have filed lawsuits to obtain the services they need. To evaluate how the pandemic is impacting families with children with special needs, we looked at data from our RAPID survey related to both caregivers’ and children’s mental health and levels of social support. We also analyzed data about child wellness visits (an especially important touch point for screening as well as evaluation of developmental progress for children with special needs) and vaccinations. We looked specifically at which visits children are missing and why. In all of these analyses, we compared responses from caregivers who have children with special needs to responses from other caregivers. The data below are cumulative from April 6 through November 19th. Our results are as follows:
Households with a child with special needs have lower levels of social support and emotional well-being than other households.
- Caregivers who have children with special needs report lower levels of social support than others.
- Caregivers who have children with special needs are experiencing significantly more emotional distress, which has been consistent since April.
- Children who have special needs are also experiencing significantly more mental health problems (fussiness/defiance and fear/anxiety) than other children, which has also been consistent since April.
Children with special needs are also receiving less preventive healthcare than children without special needs.
- Children with special needs missed significantly more preventive health care visits (36% vs. 28%) and vaccinations (14% vs. 10%) than other children in the survey.
In particular, children with special needs ages 3–5 attend significantly fewer preventive healthcare visits than other 3–5 year olds.
Caregivers of children with disabilities report more structural barriers to accessing healthcare than caregivers without children with special needs.
- Concerns about catching COVID-19 was the single biggest reason for not attending preventive healthcare visits for all families. Over 80% of all caregivers reported that this as a reason for missing a visit. This was equally true both for households of children with special needs and other households.
- However, more than other families, caregivers of children with special needs reported that a number of other structural barriers were keeping them from attending preventive healthcare visits. These barriers included cost, inability to take time off work, lack of childcare, and needing to care for family members more frequently than other caregivers.
After 9 months, the disruptions to daily life caused by the pandemic have made life difficult for everyone. In households with young children, working from home, lack of childcare, distance learning, and other structural barriers have created an even heavier weight to bear and have made life particularly difficult.
Not surprisingly, given the well-documented day-to-day stresses and increased isolation, families with a child with special needs in our survey appear to be having an especially difficult time. They report having less access to social support than other families in our survey. The emotional well-being of caregivers with children with special needs is also suffering. We have seen that this caregiver distress can trickle downstream to children. It is therefore not surprising that we are also seeing negative patterns of mental health among children in these households.
On top of these implications for mental health, the missed preventive healthcare visits and vaccinations for young children with special needs will likely result in more negative health consequences as time goes on. Delaying childhood wellness checks and vaccinations could mean missing early developmental screenings, increased risks of contracting deadly childhood illnesses, and less access to resources to support healthy child development.
Without regularly scheduled healthcare visits, caregivers are likely to have significantly limited access to the established therapies that will lead to optimal outcomes for their children over time. While a child may have special needs that can be well managed through pre-pandemic standards-of-care, if caregivers can’t access this care, their children miss out on these supports and may regress in terms of key childhood milestones.
Caregivers in our survey who have children with special needs said the following when asked what their local policymakers and officials could do to help:
Think about families with kids who have special needs. They have a hard time dealing when schools shut down. Also, school is a respite for both the child and the families.
[Provide] affordable and safe childcare support and programs for special-needs children.
Send out more money. [Officials] don’t realize the impact this has on families with special needs children.
Along these lines policy makers must take the following actions:
- Provide the funding needed to increase direct supports for children with special needs, in order to assure their health and overall well-being
- Increase the availability of social emotional and mental health supports for families who have children with special needs, including expanded funding for home visiting
- Increase funding for respite services for families with children who have special needs
In addition to these actions, innovative strategies are desperately needed to increase access to early childhood special education services for children with special needs and their families.
Existing technology-based solutions that may be adequate for others, such as online learning, may not be effective for many children with special needs. This only adds to the burden being placed on parents to supplement conventional services, increasing both stress and isolation.
Coming together to acknowledge the extra burden that families with a child with special needs are experiencing, providing resources to make it through the pandemic, and supporting children with special needs and their families emotionally puts us all on a path to a better future.
“The Forgotten Households,” Center for Translational Neuroscience.
“How COVID-19 Has Affected Special Education Students,” TuftsNow.
“Children with Special Health Care Needs,” kidsdata.org.
“The Pandemic’s Toll on Children With Special Needs and Their Parents,” The New York Times.
“The Pandemic Is a Crisis for Students With Special Needs,” The Atlantic.
“Families Of Children With Special Needs Are Suing In Several States. Here’s Why.” NPR.
“Under the Same Roof, for Better and for Worse,” Center for Translational Neuroscience.
“Returning to Care…But Worried,” Center for Translational Neuroscience.
“Something’s Gotta Give,” Center for Translational Neuroscience.
“A Hardship Chain Reaction,” Center for Translational Neuroscience.
“Health (Still) Interrupted: Pandemic Continues to Disrupt Young Children’s Healthcare Visits,” Center for Translational Neuroscience.
“Social Isolation Among Families Caring for Children With Disabilities,” NCBI.
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.
These analyses are based on responses collected from 8,390 caregivers between the dates of April 6th, 2020, and November 19th, 2020. These caregivers represent a range of voices: 8.50% are Black/African American, 16.77% are Latinx, and 29.26% live at or below 1.5 times the federal poverty line. There were 12.51% of families having at least one child(ren) with special needs. Proportions/percentages are calculated based on the item-level response rates, not out of the total sample size. The data for these analyses are not weighted.
We will continue to report on these issues as we learn more from each new weekly survey. We will also be producing policy briefs that make concrete recommendations about how to address the challenges we are seeing emerge from the family surveys.
Our goal is to use what we are hearing from families to improve the well-being of all households with young children, during the pandemic and beyond.
Center for Translational Neuroscience (2020, December 17). Overloaded: Families With Children Who Have Special Needs Are Bearing an Especially Heavy Weight, And Support Is Needed. Medium. https://medium.com/rapid-ec-project/overloaded-families-with-children-who-have-special-needs-are-bearing-an-especially-heavy-weight-4e613a7681bd.