Parents of disabled children in Sussex feel abandoned in lockdown
Parents of disabled children in Sussex feel abandoned in lockdown, a survey has found.
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 per cent of families say support has stopped altogether, leaving parents and young siblings taking on all care responsibilities around the clock.
Parents already struggling before the pandemic 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.
“As the DCP 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.
“As members of the DCP, 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.”
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
• 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 care 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 – twothirds 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.
Amanda Batten, DCP chief executive, said: “Our survey reveals that families of disabled children feel abandoned in lockdown.”
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 Mash@westsussex. gov.uk or to contact Carers Support West Sussex.”
Brighton & Hove City Council and the Department for Education, the lead on support for children, were also contacted but had not responded at the time of going to press.