A Unique Child: Inclusion - Hard times

There are a lot of difficult things you have to deal with when you have a disabled child, but it is other people and their attitudes and bureaucracy that really make it difficult,' says Stacie Lewis, whose two-year-old daughter May has severe brain damage. Those difficulties look set to worsen as April sees the start of a raft of reforms to the welfare system that will result in the biggest shake-up of benefits for generations.

The changes include Working Tax Credit being frozen for lone parents and couples, a cap on housing benefit and reductions in the childcare element of Working Tax Credit. This will affect families of disabled children, who generally have higher childcare costs.

From October 2013, thousands of disabled children will lose half of the disability element of child tax credit. These top-up payments cover the additional costs that families incur because of a child's disability, such as those for transport, laundry and nappies. Children with higher-rate Disability Living Allowance (DLA) will be unaffected, but children receiving lowand middle-rate DLA will instead receive Universal Credit.

The Department for Work and Pensions insists that the changes will simplify the system and says 'there will be no cash losers'. However, Dr Sam Royston, poverty and early years policy adviser for the Children's Society, has his doubts.

He says, 'The Government has made it clear that for existing claimants, there will be no losers, as they will top up the Universal Credit so they receive the same level of support. However, the level of support will not go up with inflation, so the amount will be eroded over the years, while new claimants will definitely lose out as they will receive the Universal Credit, which will be less.'

Contact a Family, a charity for families with disabled children, claims the Government's welfare reform proposals will have a devastating cumulative effect on vulnerable children and their families.

Chief executive Srabani Sen says, 'We are extremely concerned that the full impact of the welfare reforms on families with disabled children as a specific group has not been assessed by Government. We aren't asking for additional funding, we are asking the Government to retain current levels of financial support.'

It is partly the not knowing that is hard, says Tracy Jones. Her six-year-old son Samuel has severe global developmental delay, daily seizures and visual impairment.

'There is a lot of confusion over these welfare reforms and what is going to happen,' she says. 'It is a very unnerving time for families of children with disabilities.'

LOCAL AUTHORITY CUTS

Families of disabled children will also feel the impact of local authority cuts. Ms Jones and her son have already been affected.

'Samuel used to get two weeks of specialist physiotherapy a year in London, but that has been cut. My son is in a wheelchair that is not the right size for him and they have said that is all they have, because of the budget cuts,' she says.

A recent Daycare Trust survey found that nine in ten family information services have had their budgets cut, with many being merged with general council call centres. Such centres usually lack the expertise to deal with complex queries, though families with disabled children often need specialist advice. They often complain about a lack of information, so to lose these much needed services will leave them even more isolated, according to Daycare Trust chief executive Anand Shukla.

Lisa Massingham, whose two-year-old daughter Angelina has the neurological disorder Sturge-Weber syndrome, believes it is crucial that families are given more information about what they are entitled to.

Ms Massingham says, 'Right from when Angelina was born, I have had to fight to get the right treatment and support for her. It was only after I pushed for a second MRI scan that she was eventually diagnosed after months of seizures. Then I had to push for a referral to Great Ormond Street Hospital, where she had surgery on her brain. It was only by talking to other mums that I found I could apply for Disability Living Allowance, for which we now get the higher rate, and found out about the portage service which helps pre-school children with developmental difficulties.'

A reduction in certain services as the local authority seeks to cut costs has been noted by Jean Lee, principal of Charnwood Nursery in Stockport, which has been praised by Ofsted for being 'wholly inclusive'.

She says, 'One example of this is the removal of local authority transport for under-fives, which has made it impossible for some parents of disabled children to take up nursery places they have been offered. Cuts in health and social care budgets have meant access to certain services has been considerably curtailed - for example, speech and language therapy - and there will inevitably be some further reductions in the support available to families. Also, direct payments, which enabled parents to get some respite care or their child to access activities out of school and nursery, are no longer available.'

CHILDREN'S CENTRES

Another effect of the local authority cuts has been the closure of more than a hundred children's centres. Josephine Drew, inclusion co-ordinator at St Werburgh's Park Nursery School and Children's Centre in Bristol, finds that this is a big loss to families of disabled children.

She says, 'At St Werburgh's Park Nursery School and Children's Centre, we have close relationships with both our culturally diverse community and with the wide range of health professionals we work alongside, and we use these to support parents through the often, to them, baffling process of obtaining appropriate funding and provision. We also help them in coming to terms with their child's disability, which is sometimes a hard emotional journey.

'The coalition Government claims to be committed to early intervention, but with well over a hundred Sure Start centre closures since they came to power, we need to be vigilant and prepared to defend what we know to be an essential service.'

POSITIVE CHANGES

But it is not all doom and gloom. An initiative set to benefit disabled children is the Government's rolling out of funding for 15 hours a week of early education for disadvantaged two-year-olds. At the Children's Society, Dr Royston says, 'This will help families of disabled children, as four in ten disabled children live in poverty. The Universal Credit may also help, as it is supposed to provide incentives to get more people back into work.'

Ms Jones welcomes the special educational needs Green Paper. She says, 'There is a greater understanding of disability and a more positive attitude. People are trying to make it better and that is very comforting.'

On another positive note, nurseries such as Charnwood are showing that by being truly inclusive they can change attitudes to disability.

Ms Lee says, 'There is a "can-do" attitude in terms of involving all children, for example in birthday parties. Parents often ask for advice for any changes or adaptations they may need to make to their plans to ensure the inclusion of the friends of their children who have different needs.'

However, to help families weather the forthcoming changes, Ms Sen at Contact a Family would like to urge early years settings to do more by signposting families to the correct information and places of support.

She says, 'There is support available to families with disabled children, but they often don't find out about it until they're at crisis point. Help families find the specific support that they need and talk to them to find out if there's other support they might benefit from, but are not aware of.'

MORE INFORMATION

To help prepare families for the changes in the welfare system, Contact a Family has put together a leaflet detailing what the changes may mean for parents with a disabled child. Go to www.cafamily.org.uk