Disabled Children's lifeline

It made perfect sense that Melissa had chronic back pain. She lived near the top of a classic London postwar block of flats. When, as often happened, the lift didn’t work, she had to bump her son Jack’s adapted wheelchair down an interminable, bleak stairwell. To leave it permanently at the bottom of the stairs would be to invite theft or vandalism.

Melissa lives alone with Jack and had applied for a grant from the Family Fund. Jack was a lively three-year-old with huge saucer eyes, an engaging smile and the inherent ability, already, to work the DVD and television. He has cerebral palsy, limited use of his legs and strong arms that he manipulates to propel himself across the flat’s uncarpeted floor. The flat itself is poorly furnished. An old fridge has been provided by a friend, Melissa and Jack share the same bed, and their old sofa has seen much better days.

The Family Fund was established 40 years ago this week, working on behalf of government and private donors to support families raising disabled or seriously ill children. Its origins lie in the funding set aside to support families and individuals affected by Thalidomide, and eventually the remit was widened to include low-income families in need of practical assistance for a wide range of disabilities.

Last year, the fund helped more than 59,000 families across the UK with £33m of grants on essential items such as hospital appointment costs, kitchen appliances, beds, sensory toys and laptops. It also operates in Wales, Scotland and Northern Ireland with additional separate funds which the devolved nations release.

The grants also help enhance a family’s wellbeing by contributing towards a family break or day trips to maintain ordinary family life. In 2012/13 the fund expects to receive well over 80,000 applications and aims to grant support to at least 60,000 of these. As with other smaller grant makers, the challenge increases each year, as demand grows and funding remains limited.

As this was the first request made to the fund by Melissa and Jack, they were visited by a Family Fund adviser to determine both what help the fund might be able to offer, but also to signpost them to other services to which they might be entitled.

Skilfully, the adviser moved Melissa to talk, describing the daily struggles she experiences to answer Jack’s growing needs and make ends meet. Her life is a series of appointments and deadlines to ensure that playgroup times are met, hospital consultations take place, physiotherapists are seen and, if possible, the appointments for the treatment her back badly needs.

The local church provided Melissa with some support, but for most of her existence she was locked in the intensity of her lonely but demanding relationship with Jack.

Gradually, the adviser coaxed from Melissa a list of those practical things she really needed. Asking was clearly hard: people did not usually turn up offering support and it was all too evident that there were not many fairy godmothers in Melissa’s life.

The fund has 196 advisers who work locally to support families. In 2011/12 they visited 6,785 families in their own homes to discuss the needs of the family and opportunities for further support.

Inevitably, given the large number of requests, it is not possible to visit all new applicants and the fund has difficult decisions to make as to whom should be targeted. Research by the Family Fund into the importance of home visits indicated that more than half of the respondents had no-one else in a professional capacity visit their home and see their child. Forty-six per cent of families had received further advice from a Family Fund adviser about benefits, 10 per cent of those visited were able to increase their weekly income as a direct result of the visit, and almost three-quarters were positive about the visit itself.

Since many of the advisers are recruited locally, they often have invaluable knowledge of what is available in the area and can point to special facilities, support groups and voluntary organisations of which families may be unaware. The difficulty for the fund is that resources do not allow this initial visit to be made to all applicants.