Parents of disabled children in Sussex ‘crying out for more support’ during lockdown

Parents of disabled children in Sussex feel abandoned in lockdown, a survey has found. 

Friday, 3rd July 2020, 3:13 pm
Updated Friday, 17th July 2020, 9:32 am

According to the survey by the Disabled Children’s Partnership (DCP), which campaigns for improved health and social care for disabled children, young people and their families, 76 percent of families say support has stopped altogether, leaving parents and young siblings taking on all care responsibilities around the clock.

And parents already struggling before the pandemic due to lack of support say they feel ‘locked out’ during lockdown and fearful for their own physical and mental health.

Helen Hewitt, chief executive of Chailey Heritage Foundation in North Chailey, which is a member of the DCP, said: “Chailey Heritage, with its specialist services and partnership with the NHS, has been able to open its school to children whose parents want them to attend but others have not been so fortunate.

Chailey Heritage Foundation. Picture: Peter Cripps

“As the Disabled Children’s Partnership research suggests, these parents feel abandoned and fear for their child’s learning and mental health while they are out of school and don’t know when they will be able to return.

“Many families have been affected both financially and with their mental health and well being.

“Where short breaks or support in the home have been cancelled, the pressure on parents and siblings is immense. Parents have told us they are exhausted.

“As members of the Disabled Children’s Partnership, we are asking the Government to acknowledge and respect their situation and the challenges they face; and to offer information guidance and financial support specifically for families with disabled children.”

Chailey Heritage Foundation in North Chailey. Picture: Google Street View

Survey results

The DCP survey of 4,074 parents found that:

• Most parent carers (72 per cent) are providing a lot more care compared with the amount before lockdown. Just over two thirds (68 per cent) said non–disabled siblings were also providing a lot more care

• For those who had previously received support, 76 per cent have seen it stop

Amaze charity in Brighton. Picture: Google Street View

• Half of parents whose children had been receiving crucial therapies or other extra support have seen this stop – 86 per cent say lockdown has had a negative impact on their disabled children’s learning and communication

• Lockdown has led to some parents not seeking necessary medical health for their disabled children (44 per cent), themselves or their partner (54 per cent) or their non-disabled children (17 per cent). Nearly half (45 per cent) say their disabled children’s physical health has declined and 54 per cent say the same about their own health

• The majority (70-80 per cent) report worsening emotional and mental health for both their children and themselves

• The majority (70 per cent) of parents whose children were eligible for a school place had not taken them up; mainly because of concerns about their children’s health or because the right provision was not available.

• The majority (64 per cent) of parents were worried about how much home schooling they were doing with their disabled child and 32 per cent said they were receiving no support specific to their child’s needs from school; on the other hand, a quarter were getting good support

• 83 per cent say the lockdown is having a negative impact on their disabled child’s friendships

• The lockdown is impacting on the statutory rights of disabled children – two-thirds going through an assessment process had seen it delayed; 43 per cent of annual reviews had lapsed or been put on hold

• Families are facing financial pressures, through either, or both, a reduction in income (39 per cent) or increased costs (61 per cent). One in five (21 per cent) said they will go into debt as a result

‘Families crying out for more support’

Amanda Batten, DCP chief executive, said: “Our survey reveals that families of disabled children feel abandoned in lockdown, dealing with intense pressures as support is stripped bare, during the Covid-19 pandemic.

“As many begin to emerge from lockdown, spare a thought for those left in it. Families with disabled children are crying out for more support.

“Education support, therapies, respite and equipment have all been reduced or are inaccessible. Families have filled this void for 12 weeks but it is neither ethical nor sustainable for much longer.

“The health and social care system was already in crisis, without the resources to support disabled children. It will be even more stretched in future. The government needs to start planning now for enhancing funding for disabled children’s health and social care so that they are not left even further behind their peers.”

‘On edge of crisis’

Amaze, a charity in Brighton working to provide information, advice and support to families with disabled children across Sussex, is also a member of the DCP and said it has been hearing from several local families who are ‘on the edge of crisis’.

Many are now wanting their child with an Education Health and Care plan to return to school, but have been told this isn’t possible yet, it said, despite this group being a priority.

“We are working closely with local schools and other services to share what we are hearing they desperately need on the ground,” said CEO Rachel Travers.

“We are also hearing from many families who are really worried about their child’s (with SEND) worsening mental health – with increasing levels of anxiety and challenging behaviour.”

Families and the DCP are demanding that the government recognises and respects disabled children’s increasingly vulnerable situation during the pandemic and provides resources, acknowledging health, social care and education funding was already inadequate before the pandemic.

They are also asking it prioritise disabled children and their families as the most in need; produces a practical plan to support families caring for vulnerable children at home and a medically-sound route map for their eventual return to school and society.

Regular funded support with care and emotional and physical well-being needs at home or in the community is also needed, they said, and priority must also be given to those children who cannot attend school due to complex health conditions or who are needing to shield with their families. 

What parents said in the survey

Bev Cohen, of Brighton, and mum to Liora, 13, who has complex needs and epilepsy, said there have been times of real desperation and a combination of emotional and physical exhaustion.

“Liora needs 11 doses of medication administered every day and constant attention,” she said.

“Then there is the endless worry for her safety. Nobody in the government seems to understand about our situation.

“There’s an increased feeling of isolation because this isn’t being taken seriously.”

Another parent said: “We just felt we were beginning to cope with life with a disabled child when lockdown happened. Suddenly we were on our own. It has been exhausting meeting Keira’s needs and those of her baby brother. I feel completely isolated and can’t imagine when this will end for us.”

One parent said the impact has been huge with no break from caring. “It’s really, really intense and quite overwhelming and you’re just left to it,” they said, adding: “No-one seems to want to have the debate or talk about those with children with complex needs how they’re dealing with it.

“It isn’t just home-schooling it’s living, breathing physio, communication, lifting, feeding, stimulating, interaction, trying to keep yourself sane, home-school another child. The list is non-stop and endless and no one to help or make you feel like they actually care by checking on you.”

In response, East Sussex County Council said: “We appreciate that this has been a worrying time for families who care for a disabled child and whose day to day life can already present them with many difficulties.

“As with all local authorities, the pandemic has forced us to change the way we work and how we provide services, creating significant challenges.

“In East Sussex, The Children’s Disability Social Care teams have maintained contact throughout lockdown with the families known to them, and have been open for new referrals.

“We have been able to help families access support through the Community Hubs and the Family Fund, and have provided additional resources to help families ease the pressure of isolation.

“Some families have had their support disrupted because it has not been possible to safely provide their usual packages, but we have kept in contact with these families and offered alternatives wherever possible.

“Throughout this period we have worked closely with parents/carers and special schools who have continued to offer provision for all children with SEND.

“Where it is safe to do so, those services that it was not possible to continue to provide during lockdown are now beginning to reopen.”

West Sussex County Council also said: “We know recent months have been difficult for many people, and especially for those who already face challenges in their day-to-day lives.

“Our teams have maintained contact with vulnerable children and their families, working with partners to ensure continued support is provided.

“To meet the challenges during Covid-19, our education, social care and health teams have developed creative alternatives and remained committed to providing help to children and families in need of support. We have maintained regular contact with those families already known to us, offering advice and guidance, and have continued to respond to new referrals and requests for support received during lockdown.

“Where necessary we have brought in additional carers to ensure families continue to receive the support they’ve needed.

“We have also worked closely with schools to ensure priority places are given to vulnerable pupils throughout.

“If any families feel they are struggling or need help, we would encourage them to contact us on 01403 229900 or email [email protected] or to contact Carers Support West Sussex.”

Brighton & Hove City Council commented: “We understand how difficult lockdown has been for parents and carers of children with SEN needs, as well as the children and young people themselves.

“This is why we’ve continued to work closely with PaCC and Amaze over the lockdown period to implement a range of initiatives to help families during this extremely challenging time.

“However, we would urge any families who are struggling or needing support to contact us and we’ll do everything we can to help.”

“Some of the initiatives are:

• Written a letter for families of children with SEND to allow them access to supermarkets in the vulnerable people slots.

• Listening to the local SEND community about their experiences of Covid-19 through a survey carried out by Amaze.

• BHISS has also been using Educational Psychologists, SEND Specialist teachers, Primary Mental Health Workers, SEMH and Early Years Practitioners and Family Support Workers to support families.

• The BHISS team have also provided support for SENCo’s through workshops to help them support children and young people with SEND back into school.

• BHISS team have been supporting parents/carers through regular phone calls, emails and virtual learning platforms and virtual coffee mornings that focus on mental health, anxiety, low mood and sleep.

• BHCC will continue to work with PaCC and Amaze to ensure that, wherever possible, gaps in support are addressed.”

The Department for Education, the lead on support for children, including those with disabilities, was contacted for a response.