Neece 2020

Journal of Intellectual Disability Research doi: 10.1111/jir.
12769
739
VOLUME 64 PART 10 pp 739–749 OCTOBER 2020
Brief Report
Examining the impact of COVID‐19 in ethnically diverse

families with young children with intellectual and
developmental disabilities
C. Neece,1 L. L. McIntyre2 & R. Fenning3
1 Department of Psychology, Loma Linda University, Loma Linda, CA, USA
2 Special Education & Clinical Sciences, University of Oregon, Eugene, OR, USA
3 Department of Child and Adolescent Studies, California State University Fullerton, Fullerton, CA, USA
Abstract loss of many essential services. Parents reported some

positive aspects of the pandemic, especially being
Background The COVID‐19 pandemic introduced
together as a family. Although there were positive
challenges to families with young children with
aspects of the situation, many parents expressed
developmental delays. Beyond the widespread
concern about long‐term impacts of the pandemic on
concerns surrounding illness, loss of employment and
their children’s development, given the loss of
social isolation, caregivers are responsible for
services, education and social engagement
overseeing their children’s educational and
opportunities.
therapeutic programmes at home often without the
Conclusion Results suggest that parents of young
much needed support of professionals.
children with IDD report significant challenges at
Method The present study sought to examine the
home during the pandemic. Professional support,
impact of COVID‐19 in 77 ethnically, linguistically
especially during the reopening phases, will be critical
and socioeconomically diverse families with young
to support family well‐being and child developmental
children with intellectual and developmental
outcomes.
disabilities (IDDs) in California and Oregon, who
were participating in larger intervention studies. Keywords autism spectrum disorder, coronavirus,
Parents responded to five interview questions about COVID‐19, developmental delay, Hispanic/Latinx
the impact of the pandemic, services for their child, ethnicity
silver linings or positive aspects, coping and their
concerns about the long‐term impact of the
pandemic.
Results Parents reported that their biggest challenge Background
was being at home caring for their children with the
The COVID‐19 global pandemic has introduced
many challenges to daily life including quarantine and
Correspondence: Dr Cameron Neece, Loma Linda University, other social distancing measures to prevent the rapid
Loma Linda, CA, USA (e‐mail: cneece@gmail.com). spread of infection and serious illness or death.
© 2020 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
Journal of Intellectual Disability Research VOLUME 64 PART 10 OCTOBER 2020
740
C. Neece, L. L. McIntyre & R. Fenning • COVID‐19 and families of children with IDD
Schools, daycares and after‐school programmes have discomfort. Fontanesi et al. (2020) conclude that the
closed, placing additional burden on parents to serve pandemic and quarantine place increased stress on
as their child’s teacher, while juggling the demands of parents, especially those parenting children with spe-
employment, household tasks and other caregiving cial needs.
responsibilities. Working parents have reported The marked uncertainty of the pandemic and
incredible strain on their time, resources and ability to associated disruptions in routine may be particularly
manage the day‐to‐day needs of parenting and deleterious for children with IDD, who often benefit
homeschooling (Fontanesi et al. 2020). from heightened structure, clear expectations and an
The negative effects of the COVID‐19 quarantine array of services, and may have difficulty
on mental health have been documented (e.g. Mazza understanding changes necessitated by COVID‐19;
et al. 2020). According to a recent review, the increased child difficulties may in turn exacerbate
psychological effects of quarantine in the general parent stress. For parents raising children with IDD,
population include post‐traumatic stress symptoms, including autism spectrum disorder (ASD),
confusion, anger, frustration, boredom, financial loss quarantine means not only serving as their child’s
and stigma (Brooks et al. 2020). The psychological teacher, but also serving as their child’s special
impacts of COVID‐19 on children and youth are still educator, social skills coach, speech–language
unfolding; however, evidence from a study conducted pathologist or behavioural/mental health therapist,
on a sample of 1143 Spanish and Italian parents of sometimes with little support from professional
children between 3 and 18 years old suggest negative helpers (Eshraghi et al. 2020). Children with IDD
effects of quarantine on youth (Orgilés et al. 2020). often require more intensive services and supports
Nearly all (85.7%) parents reported changes in their than children with typical development, which may
child’s emotional state during school closures and intensify parental strain during the pandemic.
lockdown, with the most common symptoms Examples of these intensive services and supports
reported being difficulty concentrating, boredom, include specialised instruction in the form of special
irritability, restlessness and nervousness. In turn, education, behavioural programming based on
parenting stress was positively associated with applied behaviour analysis, speech therapy,
increased reporting of child emotional symptoms occupational and physical therapy and social skills
(Orgilés et al. 2020). These findings are consistent instruction, to name a few (National Research
with evidence suggesting transactional parent–child Council 2001).
effects and interdependence in parent and child Even without considering the effects of the global
adjustment following major negative world events pandemic, the literature unequivocally suggests that
(e.g. natural disasters, Juth et al. 2015). parents of children with IDD experience heightened
Less is known about the impact of COVID‐19 on parenting stress in relation to parents of children with
American families, but studies from Europe suggest typical development (Woodman et al. 2015). Further,
that the COVID‐19 pandemic has impacted families parents of children with ASD often report more
caring for children with intellectual and developmen- parenting stress than parents of children with other
tal disabilities (IDDs) even more than the pandemic IDDs (Barroso et al. 2018). Parenting stress is
has impacted the general population. For example, heightened in the presence of child challenging
Fontanesi et al. (2020) conducted a study of 1126 behaviour (e.g. Baker et al. 2003), with this
families in Italy to understand the impact of association bidirectional in nature (Neece et al. 2012).
COVID‐19 on parents and children. Fontanesi That is, child challenging behaviour impacts parents’
et al.’s (2020) data suggest that parents of children adjustment and parents’ adjustment affects child
with mental or physical disabilities reported higher behaviour.
levels of parental burnout and perceived less social Ethnically and linguistically diverse families, such
support than did parents of children without disabil- as Hispanic (sometimes referred to as Latinx) families
ities. Further, parents of children with mental and in the USA, may experience additional challenges
physical disabilities were more likely to report changes accessing care, resources and support for their
in their child’s behaviour, such as distractibility, in- children with IDD. The Pew Research Center (2020)
ability to concentrate, irritability and general estimates that the US Hispanic population makes up
741
nearly 61 million of the US population, approximately Primary caregivers who were participating in the
18% of the overall American population. Recent clinical trials were invited to participate in a short
prevalence estimates suggest that Hispanics represent five‐question telephone interview to discuss the
the fastest growing population in ASD (Maenner impact of COVID‐19 on their families. Interviews
et al. 2020). Unfortunately, several studies document were conducted in the parent’s preferred language
that US service systems may not meet the needs of (54% Spanish; 46% English) between 31 March 2020
Hispanic/Latinx children with IDD and report to 5 May 2020. Parents provided their consent to
disparities in identification, diagnosis and treatment participate in this interview, and the interview was not
(Liptak et al. 2008; Nguyen et al. 2016; Zuckerman a requirement to participate in the larger ongoing
et al. 2017), in part due to language proficiency studies.
(Stahmer et al. 2019; Zuckerman et al. 2017), Parents were asked the following questions. (1)
socioeconomic status (Escarce and Kapur 2006) and Please tell me how have you been doing during this
other factors such as mental health literacy, stigma time, that is since the current ‘lockdown’ situation
and discrimination (e.g. DeFreitas et al. 2018). The due to COVID‐19? What has been most difficult? (2)
caregiving burden and experiences of Hispanic/Latinx Have your child’s services changed during this time?
caregivers may be compounded by these contextual (3) Have there been any benefits or surprising silver
variables, which may contribute to increased support linings for your child or your family during this
needs (Blanche et al. 2015). pandemic? (4) What coping strategies are you using to
In light of contextual risks that families of children help you and your family during this time? (5) How do
with IDD may experience, especially those from you see the coronavirus pandemic impacting your
ethnically and linguistically diverse backgrounds, family in the long term? These questions were asked
coupled with the extraordinary financial, physical in an open‐ended format and follow‐up prompts were
health and mental health effects of the COVID‐19 not given.
pandemic, the purpose of the present study was to Interviews were approximately 25 min in length and
investigate parental perspectives on the impact of were audio recorded for later coding. Interviewers
COVID‐19 in a sample of predominantly also took notes on parents’ responses to each
Hispanic/Latinx, Spanish‐speaking families of young question. The lead author and a research assistant
children with developmental delay or ASD living in reviewed the interviewer notes for each participant
the USA. and analysed all responses using standard qualitative
data analysis procedures: briefly, all notes were coded
and organised into categories with subcodes. This
Method allowed systematic review of themes in the responses
(Berg 2009) for summary (Corbin and Strauss 2008).
Procedure
The lead author and research assistant then
Seventy‐seven parents of children with independently coded participants’ responses to each
preschool‐aged children (3–5 years old) with question. The reliability between the two independent
developmental delay or ASD participated in the coders was good (intraclass correlation coefficients
study. These parent participants were currently ranged from .78 to .95), and, where there was
involved in larger randomised controlled trials in disagreement in the ratings, the coders discussed and
California and Oregon investigating the effects of reached a consensus rating. Data from these
parent‐focused interventions to promote parent and responses are reported descriptively and are based on
child well‐being (McIntyre and Neece 2018; Neece the consensus codes.
and Fenning 2018). All current participants were
invited to participate in the COVID‐19 interview
Sample
(N ¼ 107), and 77 (72.0%) chose to participate. The
only notable difference between the families that Table 1 depicts the demographics of the current
chose to participate and those who did not is that the sample. Of the 77 parent participants, the majority
families who chose not to participate were more likely were married and identified as Latinx and
to have dropped out of the trials. monolingual Spanish speaking. The sample was
742
Table 1 Participant demographics (N ¼ 77)
Demographic variable n (%) M (SD)
Parent characteristics
Age 37.75 (7.27)
Gender (% mothers) 55 (71.40)
Ethnicity (Latinx) 59 (76.60)
Monolingual Spanish speaking 45 (58.44)
Marital status (married) 53 (68.60)
Parent education (without high school diploma) 32 (41.60)
Family income (<$50 000) 43 (55.80)
Receiving government financial assistance 44 (57.14)
Child characteristics
Age 3.91 (0.81)
Gender (male) 58 (75.32)
Diagnosis (ASD) 48 (62.34)
ASD, autism spectrum disorder; SD, standard deviation.
economically diverse, with a significant portion of our concern was their family’s health and not getting
sample receiving some sort of government financial COVID‐19. Lastly, a group of parents stated that
assistance. The majority were male children. All their child’s behaviour problems had been the biggest
children had a developmental delay or intellectual challenge since the stay‐at‐home order had gone into
disability diagnosis, and 62.34% had a comorbid effect.
diagnosis of ASD. Even though parents were asked to report their
primary challenge, several parents (36.4%)
spontaneously reported a second significant
Results challenge. The most common secondary challenge
parents reported was having a lack of services and
Biggest challenges
unmet educational and developmental needs.
Parents were asked to identify what had been most
difficult for them. Table 2 details the challenges raised Changes in services
by parents in the sample. The most frequent challenge
Parents were also asked to report on how their child’s
centred around difficulties being home during the
services had changed since the stay‐at‐home order
pandemic. Among those who reported difficulty being
had gone into effect. The vast majority of parents said
at home, the majority (47.8%) said that being stuck at
that their child’s services had decreased (77.9%),
home and unable to leave the house was most
while 18.2% said that the amount and intensity of
challenging, followed by balancing work, caring for
their services had stayed the same but that they were
young children and lack of childcare (17.4%). Other
now delivered online. Two participants (2.6%) said
challenges include changes in routine (15.2%),
that changes in services had been mixed (some
emotionally supporting family (10.9%) and finding
services increased and some decreased), and one
activities and preventing boredom for children
parent (1.3%) said that their child’s services had
(8.7%). Parents reported financial concerns as well,
increased during the pandemic.
most commonly due to one or both parents losing
jobs as a result of the stay‐at‐home order. Parents also
Benefits or silver linings
expressed dealing with significant challenges related
to their children’s developmental services decreasing Parents reported on whether their family had
or stopping and feeling like they could not meet their experienced any benefits or surprising silver linings
child’s educational and developmental needs at during the pandemic (Table 3). A subset of families
home. A subset of parents said that their biggest reported that there had been no benefits (13.8%);
743
Table 2 Frequencies of parent challenges
Type of challenge n % Illustrative quote Translation of quote if applicable
Primary challenge (N ¼ 77)

Difficulty being home 43 55.8 ‘Lo mas dificil ha sido para los ninos ‘The hardest thing has been for my
que no pueden salir, que se d children because they cannot go out,
esesperan, y se aburren de lo mismo.’ they are starting to go crazy, and are
bored of doing the same things.’
Finances 9 11.7 ‘Es que mi pareja le descansaron de ‘It’s that my partner was laid off from
trabajo. Ya a veces estamos pensando work. So now we are thinking about
que hacer con la renta y el pago del what to do with the rent and the car
carro. Son las más estresantes.’ payment. Those are the most stressful.’
Lack of services and unmet needs 9 11.7 ‘Definitely loss in access to services
that includes social interaction for my
children, especially my kid with special
needs. That’s kind of the big one.’
Health concerns 8 10.4 ‘Lo mas dificil ha sido saber que mis ‘The most difficult thing has been
hijos mayores han tenido que seguir knowing that my older children have
trabajando porque son trabajadores had to continue working because they
esenciales, y me preocupa saber que are essential workers, and I am
anden en la calle. Pido a Dios que worried knowing they are out on the
me los cuide y que me los protege street. I ask God to take care of them
del virus.’ and protect them from the virus.’
Child behaviour problems 8 10.4 ‘Esta semana [mi hija] tuvo más ‘This week [my daughter] had more
comportamientos porque ya no behaviours because she does not
tiene su rutina y en ratos no quiere have her routine anymore and has
hacer nada.’ moments where she does not want
to do anything.’
Secondary challenge (N ¼ 19)
Child behaviour problems 6 31.6
Lack of services and unmet needs 4 21.1
Difficulty being home 4 21.1
Finances 4 21.1
Health concerns 1 5.3
however, the majority of the families reported some assistance, that they had not contracted COVID‐19
benefits, most commonly having more time together and that they had learned to be more patient.
as a family (49.2%). Some parents also said that their
child continued to make developmental gains, mainly
in language, since being home despite experiencing a Coping
reduction in services. A subset of parents mentioned Parents described the coping skills they were using to
enjoying a slower pace of life, with some saying that get through this challenging time (Table 4). Parents
they were able to sleep more, go outside more and reported a range of coping skills, the most common
meditate and reflect. A handful of parents said that being implementing behavioural strategies (e.g.
they were happy to see communities coming together reinforcement systems) and routines as well as
to support each other during the pandemic, and some engaging in enjoyable activities with the family (e.g.
noted that they were surprised how well their child family games, walks outside). Parents also reported
had adjusted to being at home. A small number of practicing meditation, exercising and eating healthy,
parents also said that they were thankful they had providing space for family members to decompress
been able to get more government financial and taking breaks from each other and connecting
744
Table 3 Parent‐reported benefits and silver linings of the pandemic
Benefits and silver Translation of quote if

linings variables n % Illustrative quote applicable
More family time and 32 49.2 ‘Nos hemos integrados mas como ‘We have become more
improved family familia. Antes, [hija] estaba en la integrated as a family. Before,
relationships escuela y yo estaba esperando [daughter] was at school and I
en casa… Estamos valorando estar was waiting at home… We are
juntos.’ valuing being together.’
No benefits or silver 9 13.8 ‘Beneficios? No creo. Ha sido muy ‘Benefits? I do not think so. It has
linings difícil durante este tiempo.’ been very difficult during this time.’
Child has made some 7 10.8 ‘[Hijo] no habla nada, no diga ‘[Son] does not speak at all, he
developmental gains palabras… ultimamente he escuchado does not say words… but lately
during quarantine que el anda cantando como los ABC, I’ve heard him singing things like
los numeros, y estoy escuchando mas ABCs, numbers, and I’m hearing
sonidos que él está tratando de hacer.’ more sounds that he’s trying
to make.’
Slower pace of life, able 6 9.2 ‘Habian muchas terapias, por aca, por ‘There were many therapies, over
to try new things, more allá, recogieranlos, hacer la comida. here, over there, I had to pick them
present/mindful Ahora tengo el tiempo para dejar lo up, make food. Now I have the time
que estoy haciendo para ponerme to stop what I’m doing and get on
en el piso a jugar. No se podría hacer the floor to play. That wasn’t
antes.’ possible before.’
Observe resilience in 6 9.2 ‘Creo que esa, la resilencia de mi hijo. ‘I think it’s that, the resilience of
child and community Si, afectó un poco el cambio pero my son. Yes, he was affected by the
at large esta feliz. Esta contento en casa. No change a little, but he is happy. He is
me pide salir.’ happy at home. He does not ask me
to leave.’
Able to get government 2 3.1 ‘Me aprobaron el beneficio ‘My foodstamps were approved.’
assistance to meet basic de la comida.’
needs
Continued to stay healthy 2 3.1 ‘No nos hemos enfermado. Antes ‘That we have not gotten sick.
and safe [hijo] estaba enfermo pero creo Before [son] was sick but I think
que ha ayudado esa de no poder it has helped him to not be able to
salir a la calle.’ go outside.’
More patience 1 1.5 ‘He aprendido a tener mas paciencia ‘I’ve learned to be more patient
con [hijo].’ with [son].’
N ¼ 65.
with other people, usually by phone or computer, to would have a significant impact on their family or
be helpful during the stay‐at‐home order. A subset of were unsure of the impact; however, most of these
families (7.6%) did not report using any specific families reported that if restrictions continued for an
coping skills to manage current circumstances related extended period of time (e.g. an additional 30–
to the pandemic. 60 days, into the summer), the pandemic would have
a range of negative impacts on the family. Specifically,
Long‐term impact parents expressed that if the pandemic continued for
several months and into summer 2020, they had
Lastly, parents indicated how they thought the
concerns about the long‐term impact of the pandemic
pandemic and stay‐at‐home order would impact their
on their employment and finances, as well as on their
family in the long term (Table 5). At the time of these
own and their children’s emotional health. Families
interviews, families most commonly reported
also expressed a variety of other long‐term concerns
economic concerns about the pandemic (28.6%), but
including lack of educational and developmental
several other families did not think the pandemic
745
Table 4 Parent‐reported coping skills used during pandemic
Coping skills n % Illustrative quote Translation of quote if applicable
Implementing behavioural 17 25.8 ‘Poner una rutina, como un ‘Create a routine, like a calendar,
strategies, implementing calendario, para que mis so that my other children
routines and schedule otros hijos entiendan a que understand what time they have
hora entran a clase porque to log in for class because I have
tengo que estar pendiente a to be paying attention to [son]
[hijo] para sus trabajos y for his work and therapies.’
terapias.’
Engaging in enjoyable 13 19.7 ‘Tratar de estar en el parque ‘Trying to be in the park or yard
activities, finding fun things o la yarda lo mas que se as much as possible and allow [son]
to do pueda y dejar que [hijo] se to climb things, run around, etc.’
sube, corre, etc.’
Meditation 9 13.6 ‘Estoy haciendo mucha ‘I am doing a lot of meditation to
meditacion para mantenerme keep calm. I try to do at least 10
tranquila. Trato de hacer todos minutes every day, and once a
los dias por lo menos 10 minutos, week I do it in a group with a
y una vez a la semana hago en professional teaching us.’
grupo con un profesional
enseñandonos.’
Exercise 7 10.6 ‘Estamos haciendo ejercicios.’ ‘We have been exercising.’
Reported having no specific 5 7.6 ‘La verdad es que no tengo tiempo. ‘The truth is I do not really have
coping strategies for the En realidad no ha cambiado tanto time. In reality, not much has
pandemic porque sigo trabajando.’ changed because I’m still working.’
Providing space and taking 5 7.6 ‘I’ve asked to take a break and
breaks asked for help from my husband
… I’m not going try to hold
everything when I cannot do it, I’ll
just ask him for help like I’m
frustrated right now, I need to go
take a break.’
Trying to have patience 4 6.1 ‘Lo que he tratado de hacer es ‘What I have tried to do is try to
tratar de tener un poco mas de have a little more patience or try
paciencia o sea tratar de entender to understand that this is even
que para ellos es aún más difícil.’ more difficult for them.’
Positive reframe, change 3 4.5 ‘Tratar de pensar positivamente y ‘Trying to thinking positively and
perspective estar tranquilos, pensando que todo remain calm, thinking everything
va a estar bien.’ will be okay.’
Connecting with others 2 3.0 ‘Poder hablar con ustedes y todos l ‘Being able to talk to all of you
os demas padres del grupo ha sido (research study staff) and the other
de gran ayuda.’ parents in the group has been the
biggest help.’
Religious coping 1 1.5 ‘La que mas he utilizado es que ‘The strategy I have used most is
actuamos con fe, creer que existe un acting with faith, believing that
poder que nos va a ayudar a salir de there is a power that will help us
esta y que el mejor camino es seguir through this, and that the best path
a dios porque no hay de otro.’ is to follow God because there is
no other.’
N ¼ 66.
progress in the child if school and services did not emotional concerns for themselves and their child
resume, worries about long‐term social changes (e.g. (e.g. fear of what the future will look like, feeling
wearing masks, not seeing people for a long time) and constant panic, getting very bored).
746
Table 5 Potential long‐term impact of the pandemic on families
Long‐term impact n % Illustrative quote Translation of quote if applicable
Economic challenges 18 28.6 ‘Lo único que me preocupa es los ‘The only thing that worries me is the
pagos que se tiene que hacer: la payments that have to be made: rent,
renta, los carros, la comida. Me the cars, food. I am concerned that
preocupa que no haya mucho there will not be much income.’
ingreso.’
No impact 11 17.5 ‘Honestamente, no creo que nos ‘Honestly, I do not think it will affect
afecta mucho.’ us much.’
Lack of child educational 10 15.9 ‘Creo que en la escuela, porque ‘I think that in school, because I do
and developmental progress como no se mucho de internet, not know much about the internet,
y las maestras no me contestan, and the teachers do not answer me,
no puedo acesar las clases de su I cannot access his classes… and I’m
escuela… y me preocupa a largo concerned long term about his studies
plazo sus estudios y en el desarrollo and development because it’s a long
porque es mucho tiempo de estar time to be without classes.’
sin clases.’
Social changes (e.g. wearing 8 12.7 ‘En la cuestion de socializar, eso es ‘In the issue of socialising, that is what is
masks, not seeing people) lo que está afectando todo nosotros. affecting all of us. It affects us not being
Nos afecta no poder salir a las able to go shopping, take the children to
compras, llevar a los niños a la school or to the park. Those are the
escuela o al parque. Esas son las things that are affecting us.’
cosas que nos estan afectando.’
Positive impact 6 9.5 ‘You know what it’s an eye opener
for sure … being at home you
appreciate what you normally do not.
We do a lot more family activities,
you know, boards games, things like
that, then we did before.’
Emotional impact (e.g. anxiety, 5 7.9 ‘Va a afectar demasiado, porque ‘It will affect everything, because I am no
fear, boredom) yo ya no estoy tranquila. Porque longer calm. Because they say so many
dicen tantas cosas en las noticias. Un things on the news. One day they say
dia dicen una cosa, otro dia dicen one thing, another day they say another.
otra. Como ahora estan diciendo Like now they are saying that the
que la pandemia puede venir igual pandemic can come back the same in
en invierno, y ya estoy pensando en winter, and I am already thinking of
invierno, que pasa otra vez lo mismo. winter, that the same thing happens again.
Y pienso que ya las cosas no van a And I think that things are not going to be
ser igual. Para mi, cambió todo todo the same. For me, it changed everything,
todo.’ everything, everything.’
Unsure 5 7.9 ‘Ay dios mio. Creo que no lo sé, ‘Oh my god. I think I do not know, really.
de verdad. Espero que no. Si no, I hope not. If not, it will hurt us a lot.’
nos daña mucho de esto.’
N ¼ 63.
Discussion main concerns expressed by these caregivers focused

on their children’s needs and the challenges of being
Parents in this sample reported a range of
at home, losing services and anxiety about the
experiences associated with the COVID‐19
future. That being said, many parents reported
pandemic and stay‐at‐home orders. Importantly, the
unexpected ‘silver linings’ or positive aspects of
747
staying at home including spending more time with and adjustment, especially under difficult
family and improved family relationships. Almost all circumstances (Ayón et al. 2010). These strong
families reported positive coping strategies, such as family ties may be associated with improved coping
establishing routines at home, using behavioural (Perez and Cruess 2014) and may be partially
strategies to support their children’s development or responsible for parents’ reports of improved family
engaging in exercise, meditation or social support. relationships and more family time as unexpected
Although our findings are similar to other recent positive aspects of the pandemic. Resilient
reports on the impact of COVID‐19 on families, perspectives are particularly notable given the health
there is consistent evidence that the burden on and socioeconomic disparities disproportionately
parents who have children with disabilities, or affecting individuals from racial and ethnic minority
educational or social vulnerabilities, is greater than backgrounds during the COVID‐19 crisis in the
in the general population (Coyne et al. 2020; USA (Webb Hooper et al. 2020). Although the
Fontanesi et al. 2020; Masters et al. 2020). Because overrepresentation of ethnically, linguistically and
we do not have a comparison sample of ethnically, socioeconomically diverse families in this sample is a
linguistically and socioeconomically diverse families notable strength, caution must be taken in
of young children without IDD/ASD in the USA, it interpreting findings as the experiences reported by
is difficult to say with certainty that our families this group of participants may not generalise to
parenting young children with developmental other populations.
disabilities are experiencing the pandemic Although findings from this study represent just a
differently. However, there is ample pre‐pandemic snapshot of challenges faced by families with children
evidence supporting heightened parenting stress, with IDD during the spring of 2020, the long‐term
increased caregiving burden and heightened impacts of the pandemic have yet to be fully identified
challenges with child behaviour in families of by both families and professionals. During the
children with IDD/ASD in comparison with lockdown in spring of 2020 and associated school
counterparts with typical development (e.g. Hayes closings, parents reported significant challenges
and Watson 2013). Given the transactional associated with being at home with their child with an
relationship between parenting stress and child IDD and providing full‐time care and services
challenging behaviour (e.g. Neece et al. 2012; without the same level of support from professionals.
Woodman et al. 2015), increases in child difficulties At best, services moved to telehealth and remote
during the pandemic (Fontanesi et al. 2020) are platforms, and at worst, services were simply
likely to adversely affect parents’ stress and ability to eliminated. More research needs to be done on the
cope. Further, decreases in services for young short‐term and long‐term impacts of COVID‐19 on
children with IDD/ASD as a result of COVID‐19 children with IDD and their families. Additional
are likely to have detrimental short‐term and investigation of the utility of novel telehealth and
long‐term consequences given that the early remote platforms for clinical care to support both
childhood years represent a critical window for children with IDD and their families is also required,
intervention due to brain plasticity and the potential with particular attention to those from ethnically,
for rapid developmental gains (National Institute of linguistically and socioeconomically diverse
Child Health and Human Development 2017; backgrounds.
National Research Council 2001; Reichow and
Wolery 2009).
The current sample was ethnically, linguistically
and socioeconomically diverse, with the majority of Source of Funding
participating parents identifying as Hispanic/Latinx
and almost half as monolingual Spanish speaking. Research reported in this publication was supported
This diversity is unusual for studies of families with by the National Institute of Child Health and Human
IDD in the USA (Safer‐Lichtenstein et al. 2019). Development of the National Institutes of Health
Past studies suggest that the Latino cultural value of under award numbers R01HD093667 and
‘familismo’ is associated with improved well‐being R15HD091726.
748
Conflict of Interest COVID‐19 lockdown on parents: a call to adopt urgent

measures. Psychological Trauma: Theory, Research, Practice,
The Authors declare that there is no conflict of and Policy 12, S79–81.
interest. Hayes S. A. & Watson S. L. (2013) The impact of parenting
stress: a meta‐analysis of studies comparing the experience
of parenting stress in parents of children with and without
autism spectrum disorder. Journal of Autism and
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Journal of Intellectual Disability Research doi: 10.1111/jir.

Examining the impact of COVID‐19 in ethnically diverse

Abstract loss of many essential services. Parents reported some

Table 1 Participant demographics (N ¼ 77)

Demographic variable n (%) M (SD)

ASD, autism spectrum disorder; SD, standard deviation.

Table 2 Frequencies of parent challenges

Type of challenge n % Illustrative quote Translation of quote if applicable

Primary challenge (N ¼ 77)

Table 3 Parent‐reported beneﬁts and silver linings of the pandemic

Beneﬁts and silver Translation of quote if

Table 4 Parent‐reported coping skills used during pandemic

Coping skills n % Illustrative quote Translation of quote if applicable

Table 5 Potential long‐term impact of the pandemic on families

Long‐term impact n % Illustrative quote Translation of quote if applicable

Discussion main concerns expressed by these caregivers focused

Conﬂict of Interest COVID‐19 lockdown on parents: a call to adopt urgent

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