Support lacking for parents of children with disabilities

Beena Nadeem reports on the challenges facing parents of children with disabilities.

Child

 

Sandy, 40, of Chigwell, Essex, is a qualified lawyer and single mum to Sajeed, aged five. Sandy stopped working in 2015 to care for Sajeed who has autism and sensory processing disorder. When she looked into returning to work, she was told that a specialist nanny would cost her £60,000 to cover the hours she needed.

Claire from South East London is a single parent, working full time as an IT manager. Despite needing to take time off for daughter Amber, 11, who has autism and learning disabilities, she says having a ‘sympathetic employer’ ensured she kept her job. However, like many women in her position, Claire would not consider a more senior role for fear that a new employer wouldn’t understand.

Claire and Sandy’s stories are common for mums of disabled children. The charity Working Families says a quarter of working mums with disabled children don’t seek promotion or have turned one down. Combined with other factors such as unaffordable childcare and inflexible hours, it’s little surprise to learn that only 16% of mothers with disabled children work compared with a more sizable 61% of all other mothers.

A report by Working Families shows the stark reality for these mums: 80% can’t find suitable for affordable children, nine out of 10 say finding the right working pattern is a barrier to returning to work, while four in 10 say it’s a barrier to keeping their jobs.

Patchy childcare

The lack of appropriate childcare is an especially stark issue, which, according to Una Summerson, head of policy at Contact, an organisation for families of disabled children, leads to qualified and skilled mums around the country being forced out of work. She says: “Recently sustained cuts to disabled children’s services have left more families than ever before without any kind of support, leaving mums feeling unable to work due to the demands of caring at home.”

Of course, there are things in place which aim to help, but availability is often sketchy and take-up can be impractical. As Eva Juusola, a development worker at Sheffield Parent Carer Forum, which provides support for working parents with disabled children, says: “Finding childcare can be hard – especially for children with more complex needs… even though local authorities have a duty to ensure there is sufficient childcare for all children, in practice, provision is very patchy.”

Other things which could really help such parents stay in their jobs include what Working Families term ‘a period of adjustment leave’ – something that would enable parents to time off during periods of diagnosis or changes in circumstances. At the moment though, parental leave of this nature is unpaid.

“Being pushed out of work leads to long-term unemployment, child poverty and lost skills and talent from our economy,” says Julia Waltham, head of policy and campaigns at Working Families. This is sadly backed up by Contact’s conversations with long-term unemployed parents with disabled children which reveal a third of these parents are going ‘without heating their home or eating properly as they are plunged into poverty’.

Online help

The situation is compounded by the exhaustion, loneliness and isolation many parents feel, whether they are fighting to keep the jobs they are in or seeking to start work again after having their child. And although looking for practical advice has become easier, finding much needed emotional support isn’t.

As Eva says: “There’s very little support available. Parent carer forums do sometimes offer peer support, and some may have groups specifically for working parents – but there’s little around.” She advises parents to look for fora here.

Working Families rights advisor Elena Cornaro helps run its network for mums who work and have a disabled child: Waving not Drowning. She says: “There’s no one to help them negotiate that conversation with managers. No one to talk about the isolation you feel,” she says, “but that’s when online groups are so useful – people who have been in the same situation can offer practical advice and support and can be emotionally really encouraging.”

The network provides a helpline, peer-to-peer support and information on rights and legislation changes, but it’s the support from other parents through its Facebook site where she sees tens of mothers responding to posts within minutes. And it seems, despite the lack of official sites, peer to peer support is where most of the support
still comes from.

Two women who have experienced navigating work alongside caring responsibilities are now forming services to help women who are in the same position as them.

Environmental consultant turned life coach Jenni Donato uses any profit made from her coaching business to help mothers with children and additional needs regain some confidence and get back into work. Jenni’s now five-year-old daughter was diagnosed at the age of two and a half with hip dysplasia. After a string of broken bones and missed diagnosis, her daughter was finally diagnosed. She underwent months of operations, wore a full body cast
and had to have a stake holding her legs together.

“I got help with how to deal with her needs from how to seat her at a table to preparing to help her deal with post-traumatic stress disorder which these children often get,” she says, “but while I had all this stuff, quite rightly, focusing on my daughter there was little focus on just me.” Jenni has also set up a Facebook group `More to me than Mum.’

Navigating a different world

Writer and journalist Sera Johnson says the week after returning to work after having her baby was diagnosed with cerebral palsy at 13 months, her ‘world fell apart’.

“I had no contact with disability prior to having my daughter. I was unaware of how different this world was. A different language is spoken, there is a set of rules to abide by – a very different world to the one I had known all my life.”

Sera, who has set up support for mums of disabled children, says she herself got no such support and instead buried herself in her job. “I was hiding behind a professional label. The truth was I was depressed and lost. I found myself in a cycle of constantly being signed off sick and then returning to work in the same toxic pattern.”

Now an author and life coach, she offers free meetings and face to face help, as well as mentoring and workshops for parents of children with cerebral palsy.

Sera, whose daughter is now in her third year of studying law at university, says: “I don’t want parents to carry guilt, feelings of being trapped and losing their identity.”



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