Locked out in lockdown

Not all families in need of SEND services are being supported, says local resident

Zack Leveson
Credit: Wendy Charlton

By Luchia Robinson

Lockdown has posed many challenges, particularly for families in the borough with children with disabilities.

Brian Leveson, a training manager who lives in West Green ward, said: “We’ve not been managing. It’s been very, very different, there’s lots of extra pressure.”

Brian is the father of 15-year-old, Zack Leveson. Zack has cerebral palsy, which affects his limbs. He is unable to walk, talk or eat solid foods, and requires ongoing personal care. He also has a form of epilepsy and a condition called Gastroesophageal Reflux Disease (GERD).

During lockdown, Zack’s parents have been working full-time from home whilst looking after their son’s needs – and they have struggled to cope.

Physiotherapy and speech and language sessions, as well as many other activities, which would normally have been provided at Zack’s school, have to now be carried out at home, in addition to Zack’s many care requirements.

“We ensure all of Zack’s basic needs are met, but it has been difficult to balance those two areas – his school needs alongside our work, and our own needs as well,” said Brian.

Brian also says that his family has had no direct guidance or advice from the local authority’s Children with Disabilities Team (CWDT), especially since having limited services available to them because of the coronavirus pandemic.

In May, the CWDT was severely criticised by the High Court for failing to adequately protect two vulnerable children in a case that was referred to has having ‘fundamental errors.’

Brian said: “The council say it was a one off, but the evidence of lockdown says it isn’t a one off – and the failings continue.”

A recent, independent survey of parents of children of special educational needs and disabilities in Haringey, conducted by Markfield SENDIASS (Special Educational Needs Information Advice and Support Service), which looked at parents’ experiences during lockdown, found that only one-in-ten
respondents were ‘coping fine’. Many others had experienced high levels of anxiety and mental distress, as well as increased difficulties managing their children’s behaviour.

None of the respondents said they had received sufficient support from the council’s Special Education Needs services, and many said that they hadn’t received any short breaks or personal budgets for respite. Of those who had, the majority were unable to use the budget in the lockdown.

Haringey Council says that since lockdown, the CWDT has been contacting parents of children who have an allocated social worker in the CWDT, twice a week, offering them support. This support, it says has included provision of food, laptops and opportunities to access education.

The council also adds that a multi-agency forum that includes staff from health, education and adult services meet weekly to review the support offered to these children with allocated social workers, based on the assessment of need.

Zack doesn’t have an allocated social worker. After many years of trying to access one, in order to obtain ongoing care provisions, the Leveson family have only been able to access direct payments.

Brian said: “Zack has severe cerebral palsy and multiple disabilities. He is paraplegic. Most people are shocked that he is not allocated a social worker.

“That said, we believe that Haringey social services should have contacted all direct payment users and everyone in their care. They were given guidance to do so (by the Department of Health and Social Care) in May 2020.”

Brian feels that there has been a lack of effective communication between the council and local families in need of SEND services. He said: “Parents are the experts with their children, they know what’s going on and they need to be treated as those experts – not as a hindrance.”

Last month, an independent review centred upon improving relationships between families and professionals in the local authority via co-production, was released. It found that there was ‘a lack of continuity in leadership, repeated movement of the SEND team between portfolios, staff turnover and inconsistent practice, which have hampered Haringey’s attempts to deliver the systematic cultural changes that have been needed over the last six years.’

63% of respondents to the survey felt that they did not feel involved, in any way, in shaping local services.

“We know the problems, we’ve known the problems for years – the judge knew the problems, Ofsted, and the Care Quality Commission know the problems – they’re not new problems. COVID-19 hasn’t changed the situation [the problems] are pre-existing,” said Brian.

Following May’s damning High Court ruling, which brought many of the problems to public attention, the council has said there will be a peer review of the CWDT, and of cases in the service. There’ll also be a learning review focused on that particular court case.

Cllr Kaushika Amin, cabinet member for children, education and families, said: “Haringey children’s services continues to work to improve standards across the whole department including children with disabilities.

“A full programme of work has been put in place to ensure that this happens for this case and to ensure that this is not a systemic issue in the CWDT.

“We were very disappointed with the outcome of the court case and as a service it is important that we listen, consider and reflect on the criticisms.”

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