Three of the five areas in UK with the most disabled children are in Scotland and caring for them is taking a major toll on families.
A quarter of parents of disabled children provide more than 100 hours of care every week – the equivalent of working three full-time jobs simultaneously.
These are the findings of charity Contact’s Caring More Than Most report, which offers the most up-to-date and comprehensive profile of the half a million households who have a disabled child in the UK.
It found families of disabled children are significantly disadvantaged in all key aspects of life and that there is a “shameful lack of support”.
Disabled children are twice as likely to live in a home where there is no parent in paid work, more likely to live in a lone parent household and more likely to live in an overcrowded household or one without a car or central heating.
Real lives: Miriam sometimes snatches a bit of sleep when her children are at school
Miriam Gwynne from Lanarkshire is mum to nine-year-old twins Isaac and Naomi, who both have very different disabilities. Isaac has severe autism, is non-verbal and has global development delay. He has neurofibromatosis type 1, a brain tumour and a visual impairment. Naomi has severe anxiety, autism and an eating disorder. Miriam’s husband also has autism and neurofibromatosis type 1.
She said: “I have a degree and ran my own business but even part time work is now out of the question. I have no option but to rely on benefits as I need to be here for both my husband and the children. After school care is not an option for children like mine and no employer would be able to give me all the time I need to attend to the needs of those I care for. Financially it is a huge struggle especially at times like Christmas. It is hard to find hope when you know your situation won’t change. I want to give my children more but there is never the money to do so.
“It’s hard to quantify but some weeks I provide 50+ hours of care just to Isaac. My son needs lots of physical and personal care including feeding, dressing, changing nappies as well as attending frequent appointments with professionals like neurologists, eye specialists, social workers and school, which are all intense one to two hour-long meetings. My daughter needs lots of emotional care and support and again we have many meetings with CAMHS (Child and Adult Mental Health Services) and social services.
“I say to my husband once Monday is over, that’s the Carers’ Allowance earned for the week already. I don’t even qualify for the full amount of Carer’s Allowance because we are on income support. I sometimes catch up on sleep when the children are at school, if not I’m organising, tidying up and gathering my strength for the next stage. It would help so much to have more support and better acknowledgement of my role as carer in addition to parenting.”
Amanda Batten, chief executive of Contact, said: "This report lays bare the significant disadvantage families with disabled children face in all key aspects of life - health, employment, economic situation and housing.
“Providing 100 hours of care a week – often emotional and stressful, sometimes physical and backbreaking – allows no time for work, social opportunities and leads to poor health.”
The report reveals that one in five parent carers leave paid employment because they are unable to stay in work and maintain their caring responsibilities.
Parent carers are also more likely to say the care they provide has affected their health with nearly a third (31%) saying that it had made them depressed.
They are also more likely to have financial difficulties compared to other carers (36% compared 21%).
The charity says public funding cuts is seeing services for families with disabled children being cut back even further and is calling on the government to protect respite services for families.
Susan Walls, Contact manager in Scotland, said: “There is an unacceptable and marked difference between the quality of life and social and leisure opportunities available to disabled children and their families compared to those without disabilities in terms of housing, their economic situation and their employment status. This means parent carers are more likely to be managing on a low income, struggling without a car or central heating.
“Following the Scottish Parliament’s unanimous vote to set child poverty targets, our report makes clear that families with disabled children must be a priority because they are particularly vulnerable to living in poverty. We are calling on the Scottish Government to tackle the never ending cycle of disadvantage faced by disabled children and their families.”
The Caring More than Most report was compiled by the University of Leeds and estimates there are 641,500 disabled children living in the UK and 620,000 adults caring for disabled children under 20.
Dundee City is place in the UK with the second highest percentage of disabled children at 6%. However Inverclyde and Glasgow also have a high number of disabled children at 5.9% and 5.8% respectively.
More than a third of disabled children (34%) are classed as limited a lot by their disability. East Dunbartonshire and East Lothian have the fewest disabled children in Scotland at 3.8% of the population.
