Learning Disability Today
Supporting professionals working in learning disability and autism services

Lived experience: what does a family in crisis look like

Darren Devine highlights the experiences of one Scottish family facing struggles common to many during the lockdown.

Miriam Gwynne says the lockdown has driven her family close to breaking point and crisis. The schools that provided vital structure for her autistic 11-year-old twins Isaac and Naomi were closed and lifeline respite care stopped for over a week.

In addition, access to the parks where she takes Isaac and Naomi for exercise has been blocked off, with parking spaces barricaded to prevent anyone venturing too close.

Editor’s note: in England, updated government guidance names learning disabilities and autism as reasons why someone may need to access exercise more than once a day or travel beyond their local area to do so.

Her husband Nigel, who is autistic and has depression, is struggling psychologically with spending much of his time indoors and being denied the therapeutic value of regular trips out.

“We were already considered to be a family in crisis”

The mum, from Hamilton, in South Lanarkshire, Scotland, fears many organisations used the coronavirus pandemic as an opportunity to abandon their responsibilities to those needing support. She is concerned they are focusing almost exclusively on the headline message of “stay at home” without bothering to digest the crucial caveats –  support workers can still leave home for work and special educational schools may still care for pupils.

Miriam, who blogs about her family life, said: “It (the lockdown) is putting us in a very vulnerable position indeed. We were already considered to be a family in crisis.”

Social distancing is being used to justify closing services. But the same agencies, care companies and charities that have used social distancing to stop respite or day services are keeping open their own residential or supported living settings. Just as they can’t simply abandon disabled adults in supported living and residential care, they should not be turning their backs on vulnerable families facing an unbearable struggle without respite, says Miriam.

As well as autism Isaac cannot speak, has epilepsy and neurofibromatosis type 1, which is a genetic condition linked to learning disabilities, while Naomi has selective mutism, severe and generalised anxiety and a restrictive eating disorder. While Miriam says Isaac can be violent and harm himself and others in anger if his sensory needs are not met, Naomi does not have a learning disability or challenging behaviours.

In an email Naomi wrote of how the lockdown has left her feeling “sad and annoyed”. “I can’t learn anymore as mummy can’t be my teacher because she needs to look after my brother. I can’t see my friends or talk to anyone as I am too young for things like Facebook.”

Nigel said he used to read a book in a local park once-a-week to help manage his depression. But he had to give this up while providing round-the-clock care for the children with wife Miriam. He said: “My mental health is deteriorating from day-to-day. I’m getting short tempered with the kids and with the wife.”

Exercise made inaccessible

Despite their challenges the family are not self-isolating – their health problems haven’t made that necessary but the restrictions imposed by the lockdown are still proving a massive test.

Miriam, who says she has no mental health problems, suffered a panic attack when she discovered South Lanarkshire Council was blocking off the car parks at the parks she relies on for safe exercise with her children. She said expecting her to walk alongside roads with Isaac is “unrealistic”.

“We have been going for one walk a day, but we have to drive to the place because I cannot walk to a safe space that is enclosed, that is a set walk, that is a flat ground and that is a familiar place to the children.”

Miriam says she contacted South Lanarkshire Council and told them that putting parks out of reach for families like hers was dangerous, but she was ordered to stay indoors and walk closer to home. But the Coronavirus Act says we are allowed to leave our homes to “take exercise either alone or with other members” of our household.

Writing on professional networking site LinkedIn Julie Norman, a barrister at Drystone Chambers, pointed out that while it is preferable to exercise from your front door, “it may not be possible for everyone”. This would include families of children with disabilities, who don’t understand social boundaries, have no road sense and can bolt off. Norman wrote: “So the law does not stop you from driving somewhere to exercise. You may be stopped by a police officer and asked the reason for your trip, in which case you will need to explain why you have a reasonable excuse.”

Despite this legal advice South Lanarkshire Council confirmed in a statement that it has closed “the car parks in some” of its parks “to ensure that people are not travelling from a distance to access them”.

Lockdown could push people to crisis

From the moment the UK government announced its plans for the Coronavirus Act, concerns were raised about its impact on social care and the rights of the disabled.

Disability Rights (DR UK), Mencap, the National Autistic Society (NAS), Scope and other charities warned councils would no longer have to offer the vital services disabled people depend on.

Instead, they warned councils would only have to provide care where human rights would be breached. Public law barristers Jenni Richards QC, Victoria Butler-Cole QC, Sian Davies, Jonathan Auburn, Joanne Clement and Steve Broach said case law on human rights breaches in social care “sets a high threshold”.

In a joint-statement they said the Coronavirus Act risks leaving “many disabled adults with no entitlement to care (at a time when their need for care may be considerable).”

A spokesperson for South Lanarkshire Council said they understood how “the loss of a structured day for children with additional support needs is a challenge and distressing”. But the authority needs “to balance the health advice for all families to reduce their risk of catching coronavirus against providing specific support for some children who may need it”.

The head teacher at Isaac’s school has now contacted the family this week and offered “limited childcare”, the spokesperson added.

A spokesperson for Action for Children confirmed they were in discussions with South Lanarkshire Council  to “ensure that the children most in need continue to receive” a service. Action for Children began offering Miriam’s family respite again as of Wednesday, April 1, after they went nine days unsupported.

Caption: Miriam Gwynne with her son Isaac, who went nine days without respite support after the start of the lockdown.


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