‘Families are coming to their wits’ end’ - half of short breaks for SEND children cancelled

PUBLISHED: 09:06 13 August 2020 | UPDATED: 07:32 14 August 2020

Nicki Price, founder of SENsational Families. Picture: Victoria Pertusa

Nicki Price, founder of SENsational Families. Picture: Victoria Pertusa


Families have raised concerns after up to £1m could be going unspent on a lifeline service offering short breaks to children with complex needs.

Caroline Karimi-Ghovanlou with her 11-year-old grandson Gabriel Karimi-Ghovanlou who has cerebral palsy. Picture: Caroline Karimi-GhovanlouCaroline Karimi-Ghovanlou with her 11-year-old grandson Gabriel Karimi-Ghovanlou who has cerebral palsy. Picture: Caroline Karimi-Ghovanlou

Up to half of the short breaks for youngsters with special educational needs and disability (SEND) paid for by year-long personal budgets, given out by Norfolk County Council, have been cancelled since March 23, according to a council spokesperson.

Its service covers a range of support and respite services, including short-breaks fostering, residential, group sessions and personal support in the community and the council spokesman said just over £2m was budgeted for the 2020/21 financial year.

John Fisher, cabinet member for childrens services. Picture: Norfolk County CouncilJohn Fisher, cabinet member for childrens services. Picture: Norfolk County Council

Sessions are held in specialist venues including The Hamlet, in Norwich, Shine Centre in Gorleston or could be used for after school clubs, swimming or music lessons.

MORE: ‘Not what I want for Norfolk’s children’ - council admit SEND weaknesses

These activities offer children and teenagers social opportunities as well as families a break from caring, according to Nicki Price, chief executive officer and co-founder of Norfolk-based SENsational Families support charity.

John Fisher, cabinet member for children’s services at Norfolk County Council, said: John “We completely understand the added pressures families are facing during the pandemic, particularly those who have a child who has special educational needs or disabilities. Early on it was clear that the public health measures in place would make it extremely difficult for providers to run their usual short breaks services, which is why we adapted funding, so that families could access toys and equipment to use at home. Where activities aren’t able to run, we have given families flexibility to use funding to pay for alternatives, where these are available.

“About half of our residential short breaks and fostering breaks have continued and we’ve also asked providers to be flexible so that we can support those families who are facing the greatest challenges. It’s clear that there is a need for more of this kind of support, which is why we have just commissioned some additional outreach help for families that are in crisis.

“As restrictions are further lifted we will work with providers to ensure that they can safely support more children. We understand that families rely on this respite support and we will continue to work with parents’ groups to look at what further help might be needed.”

The play equipment scheme will continue during summer.

MORE: ‘I’m not sure how we would have survived without it’ - toys bring lockdown joy to children with special needs

Mrs Price said: “Families have not been able to access the short breaks. The council is offering sessions now but the ones that have been cancelled are not being given back.”

She added lockdown had increased caring responsibilities for families of youngsters with complex needs as well as feelings of low mood and anxiety within adults and children.

County councillor Mike Smith-Clare, Labour lead for children and young people, said: “In a world affected by Covid-19 carers have been in many instances sadly ignored. They deserve prioritising and above all they need to be listened to and understood.”

Families frustrated and exhausted

A councillor who cares for her grandson who has cerebral palsy has said families are at their wits’ end after losing out on short breaks.

Caroline Karimi-Ghovanlou, from Kingswood Avenue in Taverham, who represents the area on Broadland District Council, is a full-time carer for her 11-year-old grandson Gabriel Karimi-Ghovanlou while his mother works.

She said Gabriel, who cannot walk due to his condition, has lost £1,921 of his short break sessions due to the coronavirus pandemic.

Cerebral palsy is a lifelong condition that affects movement and co-ordination and is caused by a problem in the brain.

Mrs Karimi-Ghovanlou said: “Families are frustrated. They are coming to their wits’ end. They need their respite.”

She added that carers and families of children with complex needs were exhausted due to lockdown after many of them had to shield.

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