 |
access key options 
skip navigation what's new home site map search
disability benefits consortium home page
about us | benefits | contact us | frequently asked questions | links | make a donation | membership | publications | tax credits | what we do | what you can claim
Disability Alliance response R42 The 2002 Childcare Review sets out the Government's vision that every parent be able to access affordable, good quality childcare. Is this vision in line with your views?
Although we strongly endorse the Government's vision that every parent be able to access good quality, 'affordable' childcare, we believe that until universal childcare is made available to all parents whether or not they are in work (and can 'afford' it), then childcare - like private schools - will remain the preserve of families on above-average incomes, and children will be subject to hidden or overt selection procedures.
Families with disabled children and/or sick or disabled parents are seriously disadvantaged by both cost and selection. Disability Alliance therefore believes that childcare for these two groups should be made available to parents, irrespective of their employment status. This is not only in the emotional, psychological and educational interests of their children (who we know are likely to be disadvantaged by poverty and social exclusion), but it will provide parents with the sort of support they need to recoup the energies, confidence and skills they need to seek out employment in the longer term.
Meanwhile the provision of childcare irrespective of employment status would go some way to reassure sick or disabled parents and families with disabled children, that they are a priority as far as the Government is concerned. Furthermore, mothers who care for their disabled children - sometimes on a 24 hour a day basis - bitterly resent being told that they are not working. (In a recent survey we conducted with families with two or more disabled children one mother commented 'If there's one thing makes me furious is when people say caring isn't working'). Their contribution to society should be acknowledged.
Families with disabled children and children with sick or disabled parents are two groups that are particularly disadvantaged by the current system. Both groups are at particular risk of poverty and social exclusion and have needs over and above those of other parents. Both groups are relatively small in number, easy to identify, and would benefit from targeted support.
Families with disabled children and families with sick or disabled parents fall into a range of inter-connecting groups each of which is at particular risk of poverty, each of which warrant targeted interventions. Such interventions are essential if the Government is to fulfil its targets on the reduction child poverty.
Disability and poverty: Families with disabled adults are more likely to live in poverty than other families, while families with disabled adults and disabled children are even more at risk of poverty.
Single parents: Because of the stress that poverty and disability imposes upon families, families with disabled children, and sick or disabled parents are more likely to be single parents.
Ethnic minority groups: Families from ethnic minority families are particularly disadvantaged by the current system.
Government statistics highlight the link between disability, poverty and unemployment. The DWP's fifth annual report on poverty - Opportunity for all - notes that 'compared with a household with no disabled members, a household with at least one disabled adult is 50 per cent more likely to have a low income, and one with a disabled child is 20 per cent more likely. A household with a disabled child and a disabled adult is twice as likely to have a low income.' However, it emphasises that 'These figures cover income only, so the total will include disability benefits but there is no deduction for any extra disability-related costs. (for example equipment such as screen readers for computers, or higher costs for such things as heating, diet or laundry as a result of a disability.)' These disadvantages can lead to a high risk of poverty and social exclusion.'
It concludes that 'The increased risk of low income is related to the higher rate of worklessness among households with a disabled member. This in turn is related to the need of some disabled people for extra care, as well as the lower employment rate among disabled people.' The DWP highlights the fact that 'disabled people of working age are around seven times as likely as non-disabled people to be out of work and claiming benefit.'
The direct link between worklessness and poverty is a clear indication that the Government is failing in its commitment to provide security for those who - for whatever reason - are unable to work. Clearly, sick or disabled parents - who are disproportionately represented in workless households - will find it difficult to locate or finance appropriate childcare for their children.
Figures for families on key benefits with children published in November 2002 indicate that there were 649,000 children in families where an adult was on an incapacity benefit. Although statistics on the household composition, and ethnicity of disabled parents are thin on the ground, anecdotal evidence indicates that many disabled parents are also lone parents and/or from ethnic minority groups. Research into young carers indicates that poverty and social exclusion in households with sick or disabled parents is common. The demands of being a parent may exacerbate an existing impairment or illness, thereby increasing the need (and costs) for support services (including childcare) and decreasing the ability to seek out employment.
Given that childcare is generally targeted at families who are in employment, private childcare provision for families affected by sickness or disability (which the Government accepts pose major barriers to paid employment) is understandably limited. However, although disabled parents have greater childcare needs than non-disabled parents (they may need to rest during the day), low levels of employment and reliance upon benefit generates low incomes which are, in turn, sapped by high disability-related costs. Their ability to finance childcare is therefore limited, as is their ability to transport their children to or from the childminder: sometimes they can only do this with the paid help of a personal assistant. Overall, costs are prohibitive.
And yet a recent report by the Joseph Rowntree Foundation on the findings of the Task Force on Supporting Disabled Parents in their Parenting Role, emphasises that 'disabled parents may have to use more childcare, pre-school facilities, nurseries, after-school clubs and holiday activities, etc. These types of services are a vital source of support for disabled parents, giving them time to rest during the day and allowing them to reserve their energies for the highest priority tasks with their children at the beginning and the end of each day. The costs of high quality care and activities for children are considerable.' Furthermore, disabled parents have additional childcare needs during times when they undergo treatment (for example for cancer) or during hospital admissions.
Disability Alliance believes that childcare should be made available to sick or disabled parents irrespective of their employment status for the following reasons:
Although statistics on the numbers of disabled children are seriously out of date, on the basis of 1989 OPCS figures it is calculated that almost half a million children and young people have some form of disability, chronic illness or special need. There are between 17,500 and 20,000 families with more than one disabled child, many of whom also have non-disabled siblings. Approximately 7,500 families care for two or more severely disabled children. Research indicates that these families are more likely to be single parents; less likely to work; more likely to be in semi-skilled or unskilled manual jobs; more likely to be dependent on income support, and less likely to own their own home. Although the need for affordable, good quality childcare for such children is a priority, it is hard to find.
Although the majority of parents with disabled children would like to be in paid employment, barriers include: inflexible employers; ill-health among parent-carers; difficulties finding appropriate housing and schooling in the same area, resulting in complex transport arrangements; day-time medical appointments for their children. It is hardly surprising that a tiny minority of families with disabled children are in paid employment. The chances of finding suitable housing, schooling, health services and employment opportunities in the same area are limited.
While the need for appropriate and affordable childcare for this group of people is clearly of huge importance, they confront barriers to childcare, over and beyond perennial problems with cost, transport and accessibility.
These problems are compounded for families with two or more disabled children who have to juggle the disparate and often conflicting needs of their disabled children and/or non-disabled siblings. Parents with sick or disabled children are expected (and indeed want) to remain with their children during sometimes protracted hospital admissions, but have to organise care for their other disabled and non-disabled children back home. This juggling act is difficult for couples and impossible for lone parents.
Given that families complain that accessing services is already a nightmare (see the Audit Commission's recent report ) although the provision of sporadic, high quality, specialist childcare to cover crises would be welcome, in the long term it is not enough. These families need reliable, high-quality childcare at all times, not just during emergencies. An inclusive childcare system that is available to all children (and like schools, subject to the Special Educational Needs legislation and the DDA) should be the ultimate goal. Such provision is unlikely to be provided by the private sector.
Given very limited overall additional resources in 2004 Spending Review, what should the Government's priorities for childcare funding be?
1. Families with disabled children and sick or disabled parents should be able to access childcare whether or not they are in paid employment.
2. High quality, readily available, specialised and integrated childcare provision needs to be developed in discussion with families with disabled children - and their disabled and non-disabled children - and sick or disabled parents and their children.
3. The focus of childcare provision should not be confined to the 'early years', but should consider the needs of disabled teenagers and young people who may experience widely varying care needs but would benefit from social contact with their peer group. Parents and their children should be able to choose whether they need integrated youth clubs, or more specialised provision (for example for young people with learning disabilities or challenging behaviour.)
What interventions would produce the best outcomes in helping parents into employment, to stay in employment or to increase their hours of work?
Although lack of appropriate, affordable, accessible and often long-term childcare remains the biggest barrier to employment amongst families with disabled children, other barriers to employment include:
Half-terms, holidays, and teacher-training days constantly interrupt working life for all families, but parents/carers with disabled children have the additional burden of juggling medical appointments, hospital admissions and days when their child may be too ill to go to school (and indeed have to cope with their own ill-health brought on by high levels of stress). Few employers are sufficiently flexible to allow parents time off for holidays and half-terms, let alone for unexpected emergencies.
Nevertheless, most mothers with disabled children would like some kind of paid employment outside the home, at least for a few hours a week. A recent survey of parents with disabled children conducted by the National Council for Disabled Children 85% indicated that they would like to be in paid employment.
However, the very few families with disabled children who do manage to work face huge problems. Although employment has psychological benefits, families with disabled children often work below their skill level in order to find flexible employment. While couples may be in a position to share the care of a disabled child by working anti-social hours, lone parents cannot.
Families with two or more disabled children face even greater problems. Balancing the competing and often conflicting needs of their disabled children - often alongside their non-disabled siblings - seriously undermines their capacity (if not their willingness) to take on paid employment outside the home. As one mother in our survey comments, it is "extremely difficult, if not impossible to find a job that fits in with three disabled children. The main difficulty is finding childcare. The second is the number of appointments (psychologists, speech and language therapy, school meetings, doctors etc.) multiplied by three.' Another comments "My eldest son was excluded from his mainstream school in January and was out of school for 4 months. What would I have done if in work or on my own?"
Clearly families with disabled children are not getting sufficient support - either financially or from services - to give them the confidence or energy they need to seek out employment. Families with disabled children want to work, not just for extra money but also 'just to be myself for an hour or two', to have the opportunity to engage with other people away from the family, or gain 'a breathing space'. Far from providing a disincentive to work, Disability Alliance strongly believes that a benefit system that safeguards families with disabled children from living in poverty will increase the likelihood of them seeking paid employment. It will also provide recognition of the valuable role parents who chose to stay at home play.
We would recommend that the Government should:
Although we welcome the introduction of the childcare tax credit, childcare for families with disabled children is either unavailable, or prohibitively expensive. The childcare tax credit will not create more places, nor does it cover the costs of the limited childcare that is available. Furthermore families with disabled children may not benefit because they are unlikely to be in employment.
We are concerned that take-up of childcare tax credit will mirror problems with low take-up of other benefits such as DLA and carer's allowance. (Clearly it is not without significance that recent statistics on the take-up of the childcare tax credit indicate that families with two or more disabled children are not claiming this.) Furthermore, families need to access high quality, specialised childcare provision before accessing employment.
Although we believe that universal, free childcare is the best way forward, for the time being we recommend that families with disabled children should be able to access help with childcare for a 'transitional' period prior to taking up employment to ensure that their childcare arrangements are suitable and unlikely to break down, and enable them to regain the confidence, skills and training they need to access employment.
We would also suggest that:
Currently both the New Deal for Lone Parents (and the New Deal for partners) include provisions whereby a job seeker can get help with childcare costs when s/he attends appointments with their New Deal personal adviser, undertakes approved training, attends job interviews or work trials etc. For Lone Parents there is a maximum of £94.50 per week for 1 child and £140 per week for 2 children. Childcare costs have to be approved by the New Deal adviser.
It would appear that childcare costs within the New Deals are agreed for "approved activities" i.e. specific events such as interviews, training courses agreed by a ND adviser, etc. Parents of disabled children are likely to need a more regular, guaranteed childcare arrangement to make jobseeking viable. Parents may also need a trail period with childcare so that they can be assured that their child has settled prior to committing themselves to work. It is not clear that the New Deal would cover this as it stands currently. We would suggest a guaranteed childcare payment for parent carers who wish to look for work. We recognise there may need to be a time limit on this, which could be renewed at the discretion of the personal adviser.
Disability Alliance would strongly argue that childcare should be made available to sick or disabled parents irrespective of their employment status. This would not only be of benefit to sick or disabled parents themselves in the short-term, but the respite might give them the energy they need to access employment in the long-term. The children of sick or disabled parents would benefit enormously from the provision of appropriate childcare.
What are the barriers to integrating schools more into the Government's childcare strategy?
The fact that childcare is not a free and universal service that is provided as an integral part of state education, and the split between education, health and social services are major impediments to integrating schools into the Government's childcare strategy. Although universal childcare provision via the education system would require a massive investment in the short-term, the long-term social, educational and financial benefits to families and society are well rehearsed.
What kinds of out of school activities reap the greatest benefit for children? How do the needs of secondary age children differ?
In our research into the financial needs of families with two or more disabled children, the lack of appropriate, accessible and affordable activities for disabled teenagers was cited time and again as a major source of distress and anger by both parents and children. While the families we interviewed were - on the whole - happy with educational provision, mothers complained about the woeful lack of appropriate suitable teen-based clubs. One mother commented 'they lump them all in together - kids with learning difficulties and children with physical disabilities - just because they're 'disabled', but they have very different interests and needs.' She added 'The biggest difference for my 13 and 11 year olds would be if somebody would come and take each individual girl to a club they liked to do the things they like so that I could breath for a bit.'
Other than availability and affordability, why do parents use informal care?
Families with disabled children who have severe behavioural or physical needs may prefer to ask a trusted relative or friend to care for their child, rather than risk the expense and trauma of finding registered childcare. Families often feel criticised by public and professionals alike about the behaviour of their children - it is hardly surprising they would rather ask an understanding friend. However, we would emphasise that such support is often short-term - to cover an emergency. Where long-term support is needed, families should be able to pay experienced friends or relatives - who may be at ease using complex medical equipment, or undertaking medical procedures that registered childcare professional may baulk at - for their expertise.
On the other hand, when we were collecting evidence from families with two or more disabled children, the mothers we spoke to seemed to get little or no support from members of their extended family whom, they repeatedly told us, 'can't or won't' understand the needs of their disabled children. One mother who did receive a lot of support from her elderly parents is worried about the impact on their health as they get older: 'my father is no spring chicken and there's a lot of lifting.'
Although, like most parents, sick or disabled parents may well prefer to rely upon a trusted relative or friend to look after their child, they are often unable to engage in the sort of reciprocal childcare arrangements that are a fundamental part of parenting. If they want somebody to care for their child, they usually have to pay for it. Access to informal childcare that enable sick or disabled parents to invite their children's friends over simply to socialise would clearly be welcome. A system that recognised- and financed - such forms of informal support would be invaluable to bring about a greater sense of social inclusion for both parent and child.
How can we best encourage informal carers to work towards registered/approved status? Should be focus on particular groups?
Families with disabled children are themselves experts in many fields. They provide support and information to each other. More formalised - and financed - initiatives that draw on the skills of families with disabled children might be worth investigating.
Gabrielle Preston
November 2003
