Lockdown stresses worse in parents and their children with intellectual disabilities. Things haven’t improved since

with Dr Hope Christie, Edinburgh University

While much of the country is going about their business as if the pandemic is over, many parents of disabled children feel like their needs have been forgotten.

University of Edinburgh researchers are carrying out a "Road to Recovery" project that aims to build a clear picture of the challenges faced by families with children with intellectual disabilities (ID) in particular during COVID-19, and how best to support them in the recovery phases.  They have surveyed parents of children both with and without to compare the impacts of the pandemic and lockdown on families. So far, they've found parents of children with ID have---and still are---experiencing poorer mental health themselves and greater levels of challenging child behaviour, which they say may be due in part to a reduction in support networks caused by the pandemic.

Dr Hope Christie explains more about their work and how you can contribute to the project.

The Road to Recovery is bumpier for children with Intellectual Disabilities and their parents by Dr Hope Christie

The COVID-19 pandemic is recognised as a globally disruptive event that has so far resulted in over 410 million confirmed cases and more than five million deaths worldwide (World Health Organization Feb 22). The first UK lockdown in March 2020 also meant the closure of schools, clinical services, respite, and support services; all of which put considerable pressure on parents of children with intellectual difficulties (ID). 

Why is this so important?

We know from research that parents of children with ID are more vulnerable to mental health difficulties compared to caregivers of typically developing (TD) children. Intellectual disabilities are characterised by adaptive skill deficits, which can be associated with challenging behaviours, including verbal and/or physical aggression, self-injury, disturbed sleep, and destructive tendencies. These behaviours indicate levels of distress or mental stress in those with ID, which are made worse when day-to-day routines are disrupted, or restrictions are placed on activities they enjoy. Therefore, it is likely that the COVID-19 pandemic and subsequent lockdown restrictions have exacerbated these factors for children and young people with ID, which may have a knock-on effect on their parent’s wellbeing. 

The Road to Recovery project is aiming to explore how parents and their children with ID experienced lockdown, as well as learning about day-to-day challenges now restrictions ease. It is important to have a good understanding of how restrictions to school, respite, and support services impact children and caregiver mental health, as these are all known factors to reduce caregiver stress.

The Road to Recovery project

The Road to Recovery project aims to build a clear picture on the challenges faced by families with children with ID during COVID-19, and how best to support these families in the recovery phases.  To date, we have completed a survey and roundtable discussion about the positive and negative impacts of COVID-19 on families of children with ID.

Early study findings show parents experienced

• mild to moderate symptoms of depression (59% of the sample),
• stress (57% of the sample)
• anxiety (51% of the sample) during the pandemic.

Smaller numbers of parents have reported experiencing:

• more severe – or extremely severe – symptoms of depression (15%),
• stress (4%),
• anxiety (30%).

We have also found that an increase in parent-reported difficult-to-manage child behaviours, such as children becoming overwhelmed, overexcited, or resistant to change, is linked to an increase in poor parent mental health. The team has found that parents of children with ID are experiencing poorer mental health themselves during recovery time compared to lockdown time points, which may be due in part to the continued reduction in support networks caused by the pandemic. 

We have made a video about our survey results thus far, which is free to watch here, as well as some parents’ experiences of lockdown

Roundtable discussion

Oanline discussions with parents of children with ID also revealed continued difficulties accessing respite and support services due to COVID-19 and the use of very strict criteria by some services. This meant a lot of families were still unable to receive any help or support they needed. Parents felt that many support services were using COVID-19 as an excuse for on-going reduction of services, which was frustrating. Parents want to see more alternative solutions in place so services can go back to providing support to all families who need it.

Representatives from charity and advocacy groups reported that shortages of support staff and reduced service provision meant families are still not being supported effectively throughout the recovery phases of the pandemic. 

Lastly, education practitioners reported that COVID-19 was still causing increased anxiety in both parents and their children with ID, meaning a lot of children still had not returned to education (although some of these children had physical health needs). Taken together, this meant children were missing out on education, which needs to be addressed.

Recommendations

From these discussions, we have made a number of policy and practice recommendations, which include:

• Children with intellectual disabilities and their parents need continued monitoring and support (specifically mental health support) by increasing service check-ins and improving access to services as the UK transitions through the recovery phase
• It is crucial that higher levels of social care staff are recruited and retained to provide increased support to the children and extending this support to the classroom to help children transition back to education. 
• Teaching staff need the time and training to help children with ID’s social, emotional, and mental health needs as they return to education. 

If you would like to read more about our roundtable discussion, the full report is available here (PDF). We also have an easy-to-read version, if any children or young people would like to read about the event.

Can families still take part in the project?

Yes - we would love to hear from you:

• Photovoice sessions: if your child would be interested in taking part in the online photovoice sessions, you can sign up to sessions using the online google form via this link
• Parent interviews: if you would like to share your experiences as a parent of a child with ID during the pandemic, please get in touch with the lead research fellow Dr Hope Christie

Dr Hope Christie

Also read:

• This Education Policy Institute research proves why every teacher MUST be a teacher of SEND
• Ombudsman responds to our #ProvisionDenied report with news of a COVID team
• Ask, Listen, Act, so disabled learners’ two years of pandemic misery is never repeated
• It’s not just SEND teacher training that’s needed. How we educate all children is broken
• Pupils in special settings suffered significant effects of the pandemic but the “Recovery Plan” won’t help them
• Ofsted / CQC: SEND was bad before the pandemic, it’s worse now
• Will the DfE learn lessons about supporting disabled learners before the next big crisis?
• Coping with uncertainty: Supporting teens who “learn differently”*
• Helping autistic learners recover from pandemic educational losses
• Provision denied: Children with SEND have had their needs and education “pushed to one side, for the convenience of the majority.”
• More parents seeking children’s mental health support in pandemic, with growing pessimism over support delays

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Tania Tirraoro

Founder, Co-Director at Special Needs Jungle

Founder of Special Needs Jungle. (She/Her) Parent of two young adults with autism. New grandma. Tania, who is autistic, is a leading SEND advisor, working with the Special Education Consortium, Ofsted, and Whole School SEND. She is also an Advisory Board member of the Royal Holloway, University of London Centre of Gene and Cell Therapy and an Editorial Board member of Springer Nature Gene Therapy journal.
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.

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