 |
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 R40 R40 - A response to the Work and Pensions Select Committee inquiry: How can suitable, affordable childcare be provided for all parents who need it to enable them to work?
1. Introduction
1.1 Disability Alliance is a national registered charity whose principal aim is relieving poverty and improving the living standards of disabled people. Our eventual aim is to break the link between poverty and disability.
1.2 The Alliance is a membership organisation with over 400 members which range from small self-help groups to major national disability charities. We are controlled by disabled people who form a majority of our Board of Trustees.
1.3 We provide information on social security benefits to disabled adults and children, their families, carers and professional advisers; undertake research into the needs of disabled people - with a particular emphasis on income needs - and have an extensive programme of training courses aimed at professionals working in both the statutory and voluntary sectors. We are best known as the authors of the Disability Rights Handbook, an annual publication with a print-run of 30,000, but also produce a wide range of guides to benefits. We also run three telephone helplines.
1.4 Our policy work is informed by our daily contact with disabled people and families with disabled children and those who provide services for them.
1.5 Given that other organisations will be addressing the wider childcare needs of families, this response will concentrate upon the needs of families with disabled children.
2. Background information
2.1 Almost half a million children and young people have some form of disability, chronic illness or special need. There may be as many as 20,000 families with more than one disabled child. 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 (see note 1).
2.2 Barriers to Employment
2.2.1 Although most mothers who care for their disabled children - sometimes on a 24 hour a day basis - bitterly resent being told that they are not working (one mother in our survey - see para 2.2.3 - comments 'If there's one thing makes me furious is when people say caring isn't working') most would like some kind of paid employment outside the home, at least for a few hours a week (see note 2). In 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.
2.2.2 However, for families with two or more disabled children, 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. Caring responsibilities, anxiety about losing benefits, and inflexible employers compound problems with accessing suitable and affordable childcare.
2.2.3 Disability Alliance is currently gathering evidence on the financial needs of families with two or more disabled children. Mothers in our small survey comment that 'I would love to go back to work to sort of do my own thing, be my own person for a couple of hours a day' and 'it would give me a chance to breath' or 'it might help with my depression.'. One mother is keen to work for a couple of hours a day but fears that she would lose invalid care allowance (carer's allowance). Another observes that although she would love to work it would be impossible to organise childcare for her hyperactive son: 'he would drive a childminder mad . (they) would batter him.'
2.2.4 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 (see note 3). While couples may be in a position to share the care of their disabled children by working anti-social hours, lone parents cannot.
2.2.5 Apart from the paucity of appropriate childcare and inflexible patterns of employment, there are many other barriers to employment for families with disabled children - including ill-health among parents themselves and having to move in quest of appropriate housing or schooling, rendering it impossible to organise long-term childcare or access to work.
3. How can suitable, affordable childcare be provided for all parents who need it to enable them to work?
3.1 Although 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.
3.2 Discrimination: as with all disabled people, discrimination is an issue: nurseries and childminders are often reluctant to accept disabled children. Even when childcare professionals are prepared to care for disabled children, parents fear that they may not be appropriately trained. They are particularly concerned about the quality of childcare for younger children.
3.3 Extra costs: the cost of childcare constitutes another major barrier. Apart from the fact that childcare is often more expensive for disabled children, there are many hidden expenses that parents with non-disabled children do not face - for example transport, purchasing additional toys and equipment, and organising back-up childcare for those - often frequent - occasions that the child might not be well enough to leave home. Extra supervision might put costs up further (see note 4). Such costs rise disproportionately for two or more disabled children.
3.4 Long-term childcare needs: care requirements often continue (and have to be paid for) well beyond ages deemed necessary for non-disabled children for families with disabled children; childcare problems are not resolved once the children go to school. The sort of problems that all parents - particularly lone parents - experience with school holidays, half-terms and teacher training days are hugely compounded for families with disabled children who have to balance a bewildering array of hospital appointments, assessments, sudden illnesses and long-term hospital admissions - often alongside caring for their other children. One father in our survey is learning English in the hope that he can get a part-time job but his wife comments that 'his studies are constantly interrupted by hospital appointments' for disabled children.
3.4.1 The need for short-term breaks tends to increase as the child gets older and support from extended family/friends may dwindle, and/or managing behavioural problems may become more difficult. In a recent article by Francine Bates, Chief Executive of Contact a Family, a mother reports 'We have a 17 year old daughter who has a rare disorder. She is physically too old for child care and yet mentally not old enough to be by herself in the summer holidays, or go to activities for adults. This is a large challenge.' (see note 5) Clearly these families have long-term 'childcare' needs that are not recognised or met by a system that tends to focus on the early years. School holiday schemes and teenage clubs are also needed for older disabled children (see note 6).
4. Is the Childcare Tax Credit working? Is it the best way to provide help with childcare costs for those on low-incomes? What can be done to boost take-up
4.1 Is the Childcare Tax Credit working?
While we welcome the Childcare Tax Credit, we do not feel that the support provided reflects the actual costs of childcare - particularly for families with disabled children who often have to pay substantially more for specialist childcare services. Problems with take up of the Childcare Tax Credit mirror problems with low take-up of other benefits such as disability living allowance and invalid care allowance (carer's allowance). Accessing information is a perennial problem for families with disabled children. Even when families do find out what support is available, the system is too complex, the rewards too meagre, and the eligibility criteria too limiting to justify the effort.
4.1.2 Furthermore, for families with disabled children, access to affordable and accessible childcare needs to precede employment, so that they can recoup energies, interests and skills that may have been sapped by round-the-clock caring responsibilities. Time and space is needed to find, locate and apply for jobs, attend interviews, undertake training etc. We believe that the provision of timely, effective and affordable childcare would give parent/carers the sort of break they need to improve their physical and emotional wellbeing sufficiently to facilitate them undertaking employment.
4.1.3 We therefore suggest that families with disabled children should be able to access childcare for a 'transitional' period - of perhaps a year - prior to taking up employment, and indeed for 6 months should employment break down (which - given the sort of part-time, low skill jobs such parents are likely to be engaged in - is likely to happen on a regular basis). This would not only enable parents to reassure themselves that the childcare on offer is appropriate to their children's particular needs and is unlikely to break down, but it would give them time to regain the confidence, skills and training they need to access employment.
4.1.4 Although we accept that such a system might be difficult to administrate, we would suggest - for example - that Childcare Tax Credit should be made available for up to one year to a parent with a disabled child who has demonstrated that s/he is trying to move closer to the labour market and is:
4.2 Home Care
4.2.1 We welcome the Government's recent decision to fund professional care arranged for a disabled child in the parent's home through the Childcare Tax Credit, and agree that such support should be subject to regulations and inspections.
4.2.2 There are certain issues that are specific to families with disabled children that we believe should be borne in mind:
4.3 Is it the best way to provide help with childcare costs for those on low-incomes?
4.3.1 Although we welcome the introduction of childcare tax credits, we fear that the complexity of the system may limit its impact.
4.4 What can be done to boost take-up?
4.4.1 Improve the provision of information, simplify the system, and ensure that it is financially worth-while for families to avail themselves of the additional support.
4.4.2 The Childcare Tax Credit needs to recognise that the childcare needs of families with disabled children differ markedly from those of other families. It is important that it acknowledges the additional demands of caring for disabled children.
5. What is the full extent of regional variations of both availability and cost in accessing childcare? Are area-based initiatives the best way forward to ensure adequate childcare provision for children in workless families?
5.1 We are unable to comment in any detail on regional variations in the provision of childcare, although we are aware that rural areas and socially disadvantaged neighbourhoods are particularly poorly served, while provision in London and the south-east is economically prohibitive for families on low incomes.
5.2 We would like to alert the Government to the fact that, although families with disabled children are disproportionately represented at the lower end of the income scale, they do not necessarily live in readily identifiable zones - for example 'socially disadvantaged areas' - but are spread around different types of urban and rural neighbourhoods. Furthermore, families often have to move on a regular basis to access suitable housing. We feel that efforts should be made - perhaps by local authorities - to provide information on the numbers, geographical locations and particular needs of families with disabled children so that childcare can be provided in a targeted rather than a generalised manner.
6. Will the additional funding provided by the 2002 Spending Review be enough to ensure sufficient childcare to enable the child poverty and lone parent employment targets to be met?
6.1 Although we warmly welcome the additional funding, and commend the Government's commitment to reduce child poverty and its lone parent employment targets, we do not think that either target will be met without a massive increase in financial support for families with disabled children. Although we believe that that the Childcare Tax Credit is a step in the right direction, we do not think that families will disabled children - many of whom are lone parents - will benefit because of the many problems they experience accessing paid employment.
7. Should employers be doing more to help with childcare for their employees?
7.1 Employers are rarely - if ever - sufficiently flexible to adapt to regular breaks, let alone the often sporadic, ill-planned, last-minute crises that afflict families with sick or disabled children. While it would clearly be helpful if employers did more to help with childcare for their employees, it is difficult to identify how this could be achieved until inflexible patterns of employment are recognised and resolved.
7.2 Research indicates that while large statutory or private employers may be able and willing to provide appropriate childcare for their highly qualified employees - and indeed are sympathetic to 'family-friendly' employment policies - smaller employers are not (see note 8). Given that parents of disabled children are more likely to be in unskilled jobs, and on low income, they are particularly vulnerable to the vagaries of short-term, part-time and often transient jobs.
8. Should more financial assistance be made available to enable parents to use their network of family and friends to help provide childcare to help them work?
8.1 Families with disabled children are often extremely isolated and are unable to participate in the sort of reciprocal arrangements that other families enjoy. Parents may feel inhibited about calling upon family and friends to take on the sort of round-the-clock medical, social and educational support they provide for their children. As a consequence, not only are families with disabled children less able to access 'informal networks', but such arrangements are more likely to break down.
8.2 Family and friends may not feel confident about caring for children who are disabled or have special needs.
8.3 Although grandparents are often a source of much support, they may be wary of taking on a physically and mentally demanding task, particularly as they get older. Younger grandparents may well be working themselves, or may be encouraged to do so by various Government initiatives - for example the New Deal for 50+.
8.4 Four out of 10 families with disabled children report that they live in cold damp homes that are in poor repair (see note 9). Although families would often prefer to have their children cared for at home - where special equipment and adaptations may have been provided - they may feel reluctant to ask family or friends to care for their children in houses which are cold and damp.
9. Is there a lack of information on childcare services? How could it be improved?
9.1 Clearly, families with disabled children are ill-informed about many of the services to which they are entitled. However, the problem for such families is not only lack of information, but lack of availability.
10. Are the needs of specific groups being met? For example, parents working shifts; teenage parents; minority ethnic children and disabled children? What effect does this have on childcare places? What about those who want to care for their children themselves? What effect does this have on childcare places?
10.1 Parents working shifts; teenage parents; minority ethnic children and disabled children? These groups are often overlapping. The link between poverty and ill-health means that the vulnerable groups named above are more likely to have disabled children, less likely to have access to appropriate childcare, less likely to work. However, the provision of effective support services - such as home help, respite care, day-clubs etc. - to families with disabled children, alongside a 'living' income from benefits that acknowledges extra costs, would reduce stress, improve health, and give parents the time space they need to consider issues such as employment and childcare.
10.2 What about those who want to care for their children themselves? 98% of families who have disabled children care for them themselves with remarkably little support. For such families, respite care and appropriate community care services may be viewed as more of a priority than childcare. Although - as discussed above - the provision of appropriate support services and access to childcare may enable many families with disabled children to work, we would like to emphasise that families who chose to care for their disabled children themselves should be adequately supported both in financial terms - for example, by a significant increase in carer's allowance - and by the provision of appropriate and affordable support services.
11. Does the provision and funding of childcare places take into account the need for 'wrap-around care'?
11.1 The provision of 'suitable affordable childcare' needs to take on a wide range of social, educational, medical, housing and transport issues. Although all parents need to oversee their child's transitions into - and within - the educational system, educational arrangements are more likely to break down - or change - for children who are disabled or having special needs. Furthermore, a rigid school system that in no way reflects employment patterns simply compounds problems of inaccessible or expensive childcare. Social and health providers do not take account of parents' hours of work, and parents with disabled children are expected to be available for appointments which take place during working hours.
11.2 Clearly the provision of childcare support needs to be an integral part of a more holistic policy that encompasses a flexible educational system, alongside improved - and much better co-ordinated - health and social services provision. To enable such families to access the sort of affordable, reliable and long-term childcare they need to enable them to take-up full-time employment, a range of initiatives are required. These include:
Notes:
Disability Alliance - February 2003
