By Clare Kassa, Partnership Development Manager, Family Fund
Poverty and disability are often interlinked. The Family Resources Survey 2013-14 reported that 37 percent of families with at least one disabled child were in receipt of income-related benefit, compared to 12 percent of families with no disabled child.
This is due to several interdependent factors – parents often have to reduce the number of hours they work in order to care for their child, with many two-income households becoming single-income. Benefits, including DLA or PIP awards, do not necessarily keep pace with the extra costs involved in raising a disabled child.
It is often forgotten that the everyday cost of raising a disabled child can itself be a significant factor, with costs estimated as being up to three times more expensive than that of raising a child without a disability, often owing to the extra equipment and services required and the premiums that can also be charged. Research from Scope estimated that disabled people spend, on average, £550 a month on disability-related expenditure, with one in ten paying over £1,000 extra per month.
These costs were highlighted by the Extra Costs Commission’s 2015 report, Driving down the extra costs disabled people face, which called for more to be done to recognise the importance of the disabled consumer market.
Family Fund is a member of the End Child Poverty Coalition and we provide grants to families on low incomes raising disabled or seriously ill children. This means that we hear stories from families every day that give these statistics a human face.
Everyday costs add to the financial, physical and emotional challenges parents can face raising a seriously disabled child. A survey of parents/carers in London who were raising a disabled child and had previously received support from us highlighted clothing/bedding and replacing damaged items/equipment as the most prevalent extra costs. A typical comment from a parent read:
“I do not work; the rent has increased along with the council tax. I cannot afford payments on utility bills as they are too expensive. Despite being on prepayment meters the electricity is too expensive. I understand we have a lot of increased usage within our household but this is necessary as my son has a lot of needs. He always soils his clothes hence why we have to load at least three washing machines, use of dryer of course. He has to be washed three times daily. We need help with cost of storage, household appliances and his care.”
The range of help that a family can need is reflected in the range of grants provided. Frequently requested grants include washing machines, sensory toys, family breaks, bedding, tablets, furniture, outdoor play equipment, clothing and computers. The grants can help break down many of the barriers families face, improving their quality of life and easing the additional daily pressures. In 2014/15, we helped 72,043 families with £33 million in grants and services.
As part of our application process, we also look to signpost families towards extra information and support that may be available or relevant to them during phone assessments and visits. Many families face a ‘knowledge gap’ when it comes to available support, meaning they often miss out on vital sources of help. We are currently running a project to support families eligible for, but unaware of, the disabled child element of tax credits (worth an extra £60 per week) to submit their claim. Over 350 families have been helped to date, claiming up to £9,000 in backdated payments.
Life changed dramatically for Philippa and her family when she was six years old and started having seizures. Philippa was diagnosed with Subcortical Band Heterotopia (SBH), a neurological disorder caused by extra layers of grey matter being located in the brain. As a result of this, Philippa developed Lennox-Gastaut Syndrome (LGS), a regressive life-limiting condition.
“Philippa regressed significantly, and now, aged 17, needs 24-hour care” says mum Deborah. “I used to be a teacher but gradually gave up work as Philippa’s needs increased. I’m her full time carer and she also has two Personal Assistants to help.”
The first grant the family received was for a washing machine with a large drum to help cope with the large amount of washing that Philippa produces. This was followed by floor covering so Philippa could be pushed on it in her wheelchair, and if she falls the flooring would be softer. It can also be cleaned easily.
“Without the Family Fund we wouldn’t have been able to afford a washing machine with a large drum so would have ended up doing six loads of washing a day instead of three. We needed to get rid of the carpets throughout the house and we needed something Philippa can wheel on from her bedroom, through the lounge and hall to the soft, safe play area.”
“We have just had our final grant from the Family Fund and booked a bungalow on the beach in Dumfries and Galloway. Philippa is due to have two major brain operations this year, the first one in July, so we just want to have some special time together before the enormity of it all.”
There are many more family stories just like these on Family Fund’s website www.familyfund.org.uk. A running theme throughout many stories is how families raising disabled children and young people are in a constant battle juggling finances to cover daily essentials, additional care needs, appointments, equipment on top of the basics of running a family home. Family Fund’s help is needed more than ever – often referred to as a lifeline by the families who receive a grant.
If you have a disabled or seriously ill child, you might be eligible for a grant from Family Fund. For more details and to apply, visit their website at www.familyfund.org.uk