Covid-19 Means a Lot Extra Work for Households of Kids With Disabilities, however Colleges Can Assist
By Sandra M. Chafouleas, University of Connecticut and Emily A. Iovino, University of Connecticut
Children don’t come with instructions. Even if they did, they would all need their own manual tailored for their unique make and model. This is why care can be rewarding, puzzling, and challenging – especially for family carers for children with disabilities.
Although these caregivers often report that the role gives them meaning, it is usually associated with physical, emotional, and financial burdens. COVID-19 has added major hurdles to access, delivery, and assessment of special education services.
The U.S. House and Senate both passed COVID-19 relief bills to provide schools with more funding to support students with disabilities. What is overlooked, however, is the focus on supporting their family caregivers.
According to a 2020 report commissioned by the National Alliance for Caregiving and AARP, more than 14 million family caregivers in the United States provide unpaid care for children under the age of 18. This is an increase of over 4 million since 2015. These numbers do not explain the unique and often challenging experience of caring for a child with special needs. Additional nursing requirements may include additional appointments for assessments and specialized therapies, as well as increased one-on-one support to complete everyday tasks.
One in six children in the United States has been diagnosed with a developmental disorder such as attention deficit hyperactivity, autism, intellectual disability, or cerebral palsy. These children have a complex range of care needs that affect their health, daily life and educational activities.
We examine the experiences of family carers during COVID-19 through nationwide surveys and interviews with carers for children with and without disabilities. A clear topic: all family carers are looking for peace and quiet.
We have found that caregivers of children with moderate to severe disabilities – such as autism or attention deficit hyperactivity disorder (ADHD) – are exposed to significantly more stress, depression, anxiety and stress from caregivers. These results will be published in a forthcoming issue of School Psychology.
One parent of a child with moderate disabilities said: “My child already had problems with personal school. When I got home and had to do everything independently, even though they had online classes and videos that he could watch, his stress level was super high which then made my stress level super high. ”
These pressures are of concern as research suggests that parental stress can affect outcomes for children with disabilities.
Part of this stress arises from the fact that the roles of several professionals have to be filled with special training. One participant with two children – one with autism and one with ADHD – described feeling “somehow abandoned trying to meet all of the needs of these professionals, including occupational therapists, physical therapists, and speech therapists [and] School psychologists. ”
Another shared, “It boils down to doing a lot of research – one more thing in my bucket that’s always been overflowing.”
Our results also suggest that carers for children with disabilities prior to the pandemic had difficulty recovering in person compared to carers for children without disabilities. This dynamic has only deteriorated under COVID-19.
“I checked my needs and waited for things to settle down,” shared one participant. “But I had one crisis after another and then the pandemic.”
We believe that providing quality educational services to children with disabilities begins with the support of family carers. In our own words, we have gathered some ideas on how schools can support family carers, especially in this time of increasing care burden.
Hear their stories
A key concern for caregivers is to feel alone. One participant found value in a support line with social workers. Another stressed the need to increase empathy and encouragement for family carers: “Sometimes it just goes to the end of the day and just tries to make it through, have fun and not let it get to you.”
Schools can reach out to families and listen to make sure they are heard and feel connected.
Strengthening active cooperation
Educators rely on families to provide critical instruction and therapy for students with disabilities. This means that family carers need to be comfortable asking for specific help. Some schools have built strong home-school partnerships during the pandemic.
Educators can schedule frequent meetings with family carers to review and adjust learning plans. You can also thoughtfully share resources expected by families. One parent told us, “I think it would make more sense for the school to go through these things than just give us a million things to download. I would have to speak to the special needs teacher, as far as it makes sense, my child, with more quality than quantity. ”
Support them in their personal well-being
Personal wellbeing is essential to being able to help others. But big changes to established routines can create more stress for family caregivers. “It would probably have helped me to do some things like mindfulness and meditation already,” said one participant. “Maybe it would be easier for me to do this now if it was already part of a routine.”
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Schools can support family carers by offering tips on how to take small steps to strengthen predictable routines, positive relationships, and pleasant engagement. One step can be as simple as two extra minutes in the shower to allow the brain to calm down.
Sandra M. Chafouleas, Professor of Educational Psychology at the University of Connecticut; and Emily A. Iovino, Postdoctoral Fellow at the University of Connecticut
This article is republished by The Conversation under a Creative Commons license. Read the original article.