Four years ago, we were on our metaphorical knees. The previous 18 months of getting a diagnosis, attending endless medical appointments, fighting for essential equipment and services and trying somehow to keep jobs and a roof over our heads had been hard work. It had been all the harder because somehow all of this had to be done around the much more fundamental and necessary job of caring for our lovely, but severely disabled little boy, who needed 1:1 supervision all day and on the many, many occasions he woke in the night, if he ever went to sleep at all.
We had hit a wall, but were mercifully scooped up by a charity who offered us two to three hours of respite a week in the form of an extra pair of hands in the home, a new friend who could lend a supportive and non-judgemental ear. It was bliss. And then, six months later, it had to stop. There were too many people in greater need than us. We had to move on.
We threw out lifelines to every organisation we could think of. One of them offered to meet us. We talked through our situation, our child’s needs and the toll it was taking on us all, including on our daughter. There was so much sympathy, so much real compassion and recognition of need, but inadequate resources. We would go on a waiting list. How long was it, I asked. No direct answer came. ‘Still’, said the service representative, ‘you do work. Work is respite of a kind, isn’t it?’
I wasn’t in the right place to hear this. I had been up for 36 hours straight. I had just seen my GP the day before and he had referred me urgently to a back clinic because of chronic pain caused by the strain of repeatedly lifting our son in our waiting-to-be-adapted house. I didn’t respond to the clearly rhetorical question. Instead, I choked back tears of exhaustion and desperation, politely said goodbye, got into the car to go to yet another appointment and cried in the car park when we arrived. We never got to the top of that waiting list, by the way.
Caring More than Most
Our experience is a far from isolated one. This week sees the launch of the Caring More than Most report by the charity Contact, which has worked with the University of Leeds and the University of Sheffield to assess the number of hours of care provided by parents of disabled children in the UK. The findings are staggering.
- Sick and disabled children are twice as likely as their peers to live in families where there no parent in paid work (34% compared to 17% of non-disabled children) with1 in 5 parent carers saying they had left paid employment because they were unable to stay in work and maintain their caring responsibilities.
- Sick and disabled children are also more likely to live in households with no access to a car, in a home with no central heating and in overcrowded accommodation
- More than a third (35%) of disabled children and young people are more likely to live in lone parent households (compared to 24% of other children).
- 36% of families with disabled children experience financial difficulties (compared with 21% of other carers).
- Carers of sick or disabled children under 20 were more likely than other carers to report that the care they provided had an effect on their own health with nearly a third (31% ) saying that it had made them depressed and nearly half (47%) saying that it had caused them to be stressed.
Three full-time jobs
A quarter of parents of disabled children (that’s 150,000 adults) are providing 100 hours of care a week. That is not a full-time job, it’s three, undertaken at all hours of the day and night and with no employee benefits. Parent-carers can’t get sick (heck, getting themselves lunch or making a cuppa can prove complicated enough). They don’t get holiday pay, sick pay or pensions.
But it gets worse. Contact’s report shows that 1 in 5 parent-carers have had to leave paid employment to maintain their caring responsibilities. 36% of families with disabled children experience financial difficulties compared to 21% of other carers. Families with disabled children are also more likely not to have access to a car or central heating. No wonder, then, that they are more likely than other carers to report health problems with 31% citing depression and nearly half acknowledging that their responsibilities have caused them stress.
These pressures are intensified by difficulties in accessing respite in the form of health and social care support that can provide parent carers with invaluable time to spend with their other children, their partners or, crucially, looking after themselves. Yet, families who have spoken to Contact report unacceptable delays, and misinformation about, accessing support as well as the appalling effects of recent funding cuts on services. On the day that I have written this post, I have signed two petitions against the closure of respite centres in different counties on which vulnerable families rely and, closer to home, my son loses access to 1.5 hours of term-time after-school care he has been able to attend once a week for the past two months as the scheme is being closed due to a ‘rationalization’ of the service.
“Providing 100 hours of care a week – often emotional and stressful, sometimes physical and backbreaking - is not sustainable. Something will break." Amanda Batten, CEO of Contact
Difficulties in accessing health and social care come at a great personal cost to individuals and families and the current system of crisis management fails to represent good value to local authorities and health bodies. As Amanda Batten, CEO of Contact says: “Many families with disabled children are not getting the support they need before reaching that crisis point – when the services they need have a higher cost. If this isn’t urgently addressed it will just continue to be a never-ending cycle of disadvantage for families and rising costs for the state’.
On the back of their report, Contact has joined with 50 other charities, including the Disabled Children’s Partnership (SNJ is a supporter member of DCP) to call on the government to commit to early intervention services - including short breaks – to help end this damaging cycle.
Read the Caring More than Most research here
The Secret Life of Us campaign was launched in parliament last week, calling on the government to follow our five-step plan to address this growing crisis in health and social care for disabled children.
Step 1: Make disabled children a priority
Step 2: Review current funding
Step 3: Clarify existing rights
Step 4: Create a fund
Step 5: Change the system
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