Forgotten families

Life has not been straightforward for Jan* since her daughter Elizabeth*, 12, was diagnosed with autism spectrum disorder (ASD) and sensory issues.

A few years ago, Jan, a graphic designer from Hackney, witnessed Elizabeth having panic attacks over her primary school uniform. “She found clothing really difficult,” says Jan. “Often, getting out the door felt impossible. We would make it halfway to school and suddenly she freezes on the ground and would not move forward.”

Elizabeth then started having “meltdowns every morning” and “anxiety about attending school”. She would also leave “little notes saying she wanted to die”.

“We were not aware of any difficulties because it did not reflect the girl we knew at home; her safe space. She was like a swan on the surface. Everything about her appeared to be calm. But underneath, she was paddling away at 100 miles per hour just trying to cope.”

Then came the coronavirus pandemic. Following the first national lockdown on 16 March 2020, Elizabeth and millions of children were told not to come into school and stay at home. Not only that, but the people Elizabeth relied on for guidance – from specialist teachers to therapists – suddenly disappeared.

Pre-pandemic, Elizabeth would be provided a “whole raft of measures”, including face-to-face meetings with a psychiatrist. “But support [during lockdown] has been ineligible,” says Jan. “It has been a juggling act. I am now having to put part of my life on hold in order to care for my daughter. Each day feels like a battle.”

Special attention

Jan is just one of the hundreds of parents in Hackney looking after a child with Special Educational Needs and Disabilities (SEND), a broad term describing those who have cognitive problems with learning.

The borough has no data about the total number of young people with complex needs. Some children do not have a formal diagnosis, but they are given information showing what services are available to them – known as a Local Offer. This can include everything from impartial advice for those moving into adulthood, to leisure and sporting opportunities.

In Hackney and the City of London, there are estimated to be over 15,000 residents under the age of 25 with a disability, a large proportion of whom suffer from a learning disorder. With a population of around 250,000, Hackney has a higher percentage of SEND children not only in London but across England.

The borough has found itself at the centre of controversy over its SEND management. In 2018, Hackney and City Council – who are responsible for identifying and providing outcomes for disabled children – was criticised by the Local Government and Social Care Ombudsman for “lengthy delays” in approving learning packages.

More recently, a group of locals sent a legal challenge to the Court of Appeal over cuts to SEND resources in schools, a decision they claimed was made without consultation. The last fifteen months have brought with it completely new sets of challenges to families, who say access to support has dwindled.

Fighting for an education

Niamh*, whose 11-year-old daughter Lily* suffers from high-functioning autism, says that provision has been “completely removed” during the pandemic. Normally, Lily has specialist teaching hours and contact with a language therapist, as well as sensory-motor circuits that help improve her physical health and wellbeing. But according to Niamh, “everything was absent”.

Parents and senior figures have complained that children with complex needs across Hackney have not been receiving an adequate amount of teaching. Last month, at a children and young people’s scrutiny commission meeting, Richard Brown – executive headmaster at Urswick School – said that some pupils with SEND had only been receiving “an hour of education a day”.

Jan says home schooling for Elizabeth was just a "pile of downloaded resources" which were "more-or-less abandoned".

“The last few years has been like a job. I cannot earn a professional salary because of it. I cannot afford legal advice because it was cost a minimum of £10,000 to [pay for] a solicitor. People [in Hackney] just don’t have that level of money.

"They load this thing on top of you. It’s like [they’re saying], ‘You want provision? Fight me.’”

Niamh is not the only carer who feels abandoned over provision in Hackney during the pandemic. In a survey conducted in April and May 2020 by the Hackney Independent Forum for Parents/Carers of Children with Disabilities (HiP), 74 per cent of families said they were not getting therapeutic interventions set out in their EHCP. Moreover, 53 per cent received no support for their child’s social, emotional or mental health needs, with over a third saying their young ones exhibited difficult behaviours at home.

As a result, struggling families have been dependent on charitable organisations to get the help they deserve:

C rumbling support structures and tensions caused by COVID-19 has pushed many families in Hackney to breaking point – including parents. Last year, a study by the Journal of Applied Research in Intellectual Disabilities (JARID) found that the measures implemented to manage the spread of coronavirus disproportionally impaired the mental health of carers of people with intellectual disabilities.

Parents in Hackney are feeling the pressure of responsibility:

Judith Davey runs the Advocacy Project in Hackney. The charity works across all care groups in the area, including carers with mental health needs, to lobby policymakers and signpost residents towards relevant support networks. She says the situation for families of children with complex needs has become “increasingly desperate” and that demand from these groups has increased drastically.

“Lockdown magnified everything,” notes Davey. “The number of calls exploded. That would have been heightened by mental health issues and social isolation. It was like a pressure cooker… the stresses SEND parents experienced.”

She added: “There was guidance, but there was nothing in how residents should interpret that in the context of their own lives. It was really difficult for people with learning disabilities and those that supported people with learning disabilities. That step about making [quarantine] relevant to them didn’t happen.”

Like other agencies, the Project was forced to move online. They organised drop-in sessions so that carers of special needs children could talk to one another. Due to budgetary constraints and logistical issues, many of the charity’s services will need to remain virtual for the foreseeable future.

Davey comments: “How much difference does it really make though given that those families are already in an environment where they don’t have a support network? That cannot be easily reconstructed over Zoom.”

For many families in Hackney, the final easing of lockdown on 19 July will come as a sigh of relief. Pupils have fully returned to the classroom and more services will soon be able to return in person. But despite signs of optimism, many are anxious about what the future has in store for them and their children.

According to a recent survey by Family Fund, Britain’s largest charity for families raising disabled or seriously ill children, 42 per cent of carers predict it will take a whole year to get their lives back on track, with one in ten saying “normality” will never return. By contrast, 29 per cent of the general population say it will take 12 months to have their lives back on track.

Ann-Marie Dawkins, chair of HiP, says the “future does not look bright at all” and says that students – especially those with SEND – should be able to “re-take” the academic year. Her worries echo that of an Ofsted report published at the end of last year showing that children with additional needs have regressed in their development during COVID.

“[My daughter] has missed so much,” says Jan, who also sits as a governor. “For her [Elizabeth], the idea of catching up… is a mountain to climb.” She believes there needs to “be greater provision for schools without it being a traded service” because “a hell of a lot of children aren’t being captured”.

An additional complexity, Jan says, is that “access to budgets is limited within schools. It’s woefully underfunded and barely keeping up with the minimum costs. Earlier interventions are better at every level for everyone, but it doesn’t happen".

Hackney Council are bracing itself for a £13 million deficit in its SEND budget this financial year, which has meant austerity cuts in other areas of spending, says Cllr Woodley. She has written to Gavin Williamson, the Education Secretary, calling for additional funds so that those seeking care can be reached. “Our EHCP applications are increasing and our current high needs budget cannot meet the demand without going into overspend.”

As part of its recommendations into special needs reform, the All-Party-Parliamentary Group (APPG) for SEND says that government needs to provide extra funding to local authorities like Hackney.

The Department for Education has already part-reimbursed the Council’s COVID-related expenditure and says they have already given local authorities additional funding. They have also promised a £500 million mental health recovery plan to fund mental health services for children and adults.

Same world

As discussions surrounding studying and mediations continue for those in SEND continue, Jan reflects on what the COVID experience has been like for her. “An uphill battle,” she replies.

What separates someone like Jan – not only a mother but also a therapist, a chef, a teacher, a caregiver and an advocate of a child with complex needs – from everyone else?

“The life of a SEND parent compared to other people in this pandemic is that everyday life for a SEND parent is, to some extent, what life has been like during the pandemic for other people: restricted options for going on, restrictions on what you can do. It is welcoming them into our world. That is how we live all the time.

"We are still in lockdown. We don’t know when ours is going to end.”

*All carers in this article have asked for them and their child to remain anonymous.