Select Committee on Work and Pensions Written Evidence

Memorandum submitted by Every Disabled Child Matters


  1.  Every Disabled Child Matters is a campaign by four leading organisations working with disabled children and their families—Contact a Family, Council for Disabled Children, Mencap and the Special Educational Consortium.


  2.  Families with disabled children have a particularly complex relationship with the benefit system, being expected to approach numerous different agencies.

  3.  We believe that there are a number of inconsistencies in the system, which mitigate against families' desire to work. We would welcome these being addressed.

  4.  Fundamentally, however, a simplification of the processes is required, rather than simplification of the regulations. Complex regulations are necessary to ensure that individuals in less common situations can be adequately financially supported.


  5.  Despite a plethora of initiatives aiming to reduce child poverty and improve support for disabled children, families with disabled children continue to experience high levels of poverty and social exclusion.

  6.  Incomes in such households are likely to be low because families experience considerable additional costs, face multiple barriers to employment, and experience problems accessing disability benefits. For example, only 16% of mothers of disabled children are in any kind of paid employment, compared to well over 60% of mothers generally.

  7.  With families struggling to access work, many rely on benefits for financial support in the medium and long term. Access to such benefits improves childhood experiences and life chances for disabled children.

  8.  Current poverty statistics, which underestimate levels of poverty in households affected by disability, indicate that over a million children living in poverty are affected by disability. A quarter of all poor children have a disabled parent. Over half disabled children live on or near the margins of poverty. Half a million children live in households that contain both disabled adults and disabled children. The risk of poverty for these children is particularly high.

  9.  Families with disabled children have a particularly complex journey through the benefit system. At any one time they may be claiming:

    —  Child Tax Credit from HMRC.

    —  Working Tax Credit from HMRC if working or Income Support from DWP if not.

    —  Child Benefit from HMRC.

    —  Disability Living Allowance from DWP.

    —  Carers Allowance from DWP.

    —  Housing Benefit from the Local Authority.

    —  Council Tax Benefit from the Local Authority.

    —  Disabled Facilities Grant from the Local Authority.

    —  Help with Health costs including fares to hospital from the Department of Health.

    —  Grants from the Family Fund.

  10.  This is in addition to the numerous other assessments that families have to undergo to receive other, non-financial help such as Special Educational Needs Assessments, medical assessments for services such as Speech and Language Therapy and social care assessments for services such as home care and short breaks.


  11.  "My daughter Amy, aged seven, was diagnosed with a rare syndrome when she was five weeks old. She uses a wheelchair and has only a few words of speech. I had no idea what implications her diagnosis would have for our entire lives. I recorded just how much time and effort we've had to put into Amy's care since then:

    meetings and contacts with professionals—774;

    hours spent on appointments and phone calls about Amy's needs—4,942;

    miles driven to appointments about her needs—11,004.

  This has meant I've had to give up work, and as a result my husband and I have been unable to afford much of the special equipment and support Amy needs. The stress puts a lot of pressure on our relationship and our feelings of isolation from `normal' families are sometimes overwhelming."


  12.  There is no doubt that the current system is exceedingly complex for anyone with additional needs. Whilst relatively straightforward for a couple or single person in good health who happen to be temporarily out of work, whenever there is a question of disability, multiple claims will be involved. However, we recognise that part of the reason for this is to ensure that those with particular needs have those met by the system.


  13.  The introduction of Income Support in 1988 was in part an attempt to achieve simplification. The old Supplementary Benefit system was much more complex—there were basic allowances for all families and then individual allowances depending on circumstances—for example allowances for bathing if more than one bath a week was required on medical grounds, additional wear and tear on clothing if extra washing was needed, a laundry allowance if washing and drying facilities were inadequate, a heating allowance if the method of heating was particularly expensive or the home was particularly exposed, damp or otherwise hard to heat.

  14.  All these individual allowances were abolished and subsumed into the more general "disability premium" and "severe disability premium" which exist today. As a result, income was no longer tailored to the costs actually born by the individual—simplification undoubtedly resulted in some gains for those with lower expenses—and some losses for those with higher needs which could no longer be considered individually. Although individuals were protected from these overnight losses through a transitional protection scheme, in practice this meant for some that their benefit income was frozen for some years until the new allowances "caught up" with the existing protected award. Because of the effects of inflation this was in reality a benefit cut which persisted for some years.

  15.  The learning point from this is that wide scale simplification of benefit rules will inevitably lead to cuts for some people—usually those with the most severe and complex needs. Although the system is complex, the reason for that complexity is in order to be fair to individuals and ensure that the income they receive meets their needs.

IMPLICATIONS OF SIMPLIFICATION16.  Following a series of parliamentary hearings on services for disabled children last year, a report[26] was published in October which found that over half of all parents submitting evidence to the hearings described benefit levels for disabled children as poor. Cuts, in the name of simplification, would drive many more families into poverty.

  17.  There is a fundamental question to be answered here, which is: "Do we wish to have a system which is simple but unfair or a system which is fair but complex?"

  18.  In our view it is essential to retain the complexity in order to ensure that families receive the support that they need. A "one size fits all" approach will mean that families with severely disabled children, more than one disabled child, a disabled parent and a disabled child and others in less usual situations may well not get the incomes that they need to survive on.

  19.  Therefore the complexity of the benefit regulations is necessary for the protection of living standards. However, the important part of simplification for families with disabled children will lie in the ways of accessing the system, methods of processing benefits and in how communication between the various departments works.

  20.  For example—there are undoubtedly some very complex forms—such as the Disability Living Allowance form. In one submission to the Parliamentary Hearings the application forms were described in one written submission as "a parent's dread". DLA forms could be further simplified and Government could consider awarding DLA for longer periods, without the need for further forms, for children with long-term conditions where variation in the level of need is likely to be marginal. This kind of simplification would be most welcome. It might also be possible to combine a claim for Carers Allowance into the DLA form for children so that both benefits could be decided upon simultaneously.

  21.  There are, however, some areas where we would welcome "greater complexity"—for example we have long argued that parents of disabled children should have access to winter fuel allowances, as older people do.


  22.  Communications are in our experience poor both within and between the relevant agencies. Communications with claimants are frequently not much better although we are aware of certain initiatives to improve written contact with clients. For example, the Disability and Carers Service is currently reviewing its decision notification letters, claim packs and notes to try and make them easier for claimants to understand. The voluntary sector has been involved in this process.

  23.  It is our view that current Tax Credit decision notices only provide limited information about the personal circumstances that have been taken into account in assessing an award. This makes it very difficult for the claimant to understand how their award has been calculated and to identify if there have been any mistakes.

  24.  We believe that the decision notice should include a detailed breakdown of the tax credit calculation, similar to that found in income support decisions. This should include the specific tax credit elements the family qualify for and a breakdown of the individual taxable income taken into account. This sort of detailed breakdown will not only help clients better understand how their award was arrived at but will also greatly assist any advice agency they approach for help when there is a problem with their award.


  25.  Mrs M lives with partner and two children, one of who is autistic. Husband works, while she claims Carers Allowance. Following end of year reconciliation she had originally received lump sum arrears of £4,000. This, however, was an error (due to the family's income wrongly having been recorded as nil). She subsequently received 11 letters from HM Revenue and Customs stating that she had been overpaid. Each letter noted a different level of overpayment.

  26.  In our experience, the majority of overpayments and underpayments to claimants are caused by poor inter and intra agency communication, and to claimants not understanding that agencies are most unlikely to be talking to one another and that they should notify other benefit paying agencies of relevant changes.

  27.  For example, we continue to regularly come across parents whose tax credit awards do not include the disability element(s) to which they are entitled. It has become increasingly clear that many parents are simply unaware that there is any reason to notify the tax credits office when their child is awarded DLA. Even where a parent does think to tell the HM Revenue and Customs about a DLA award, some still lose out on backdating because they are unaware of the need to notify the TCO at the point that the DLA claim is first made.


  28.  Mr D lives with wife and two children aged 14 and seven. Both children have learning difficulties and youngest child receives DLA high rate care/high rate mobility. DLA has never been claimed for eldest daughter since her learning difficulties are much milder than her sibling's. Mr D works full time earning £19,000 last year and his wife receives Carers Allowance. They assumed that HMRC would know that they were awarded Carers Allowance. They have a current Tax Credit award of £4,423 for the year.

  29.  Since his wife's Carers Allowance has never been declared as a taxable income Mr D has been overpaid tax credits. However, as he had also not realised that he should have told them when his son's DLA increased to high rate, his child tax credit entitlement was under-estimated since his award notice did not include a severe disability element for his son. The rules regarding backdating of this element do not allow for backdating further than three months so Mr D has lost out substantially. We also recommended Mr D lodge a claim for DLA for elder child and explained the need to notify Tax Credit office of this new claim to protect any subsequent disability element.

  30.  This case study illustrates the importance of establishing straightforward routes for claimants to report change in circumstance.


  31.  If it is necessary to have so many agencies involved in the delivery of a benefits and tax credits system, then there must be one point of access for all of them to which changes can be reported. That point of contact would then have responsibility for ensuring that all those who need to know are informed. The most natural point of contact for this would be a local benefits office. This local point of contact could also take responsibility for taking initial claims for all benefits and carrying out a full check to make sure that all the relevant benefits are claimed—rather as the lead professional role is conceived for social and health care services.

  32.  This would require a sea change in the training and support available to front line staff to enable them to identify all possible entitlements at the outset (whether these are Bereavement Allowances, Tax Credits or help with NHS costs for example). However, we expect a worker at a community advice centre (such as a Citizens Advice Bureau) to be able to carry out this task competently and effectively and there is no reason why a government agency should not be able to perform equally well.

  33.  CPAG and Contact a Family evidence ("Out of Reach" 2006) found that there is a lack of information about DLA generally available to families with disabled children and the way in which DLA is administered continues to pose major barriers to take-up. Complex forms, the need for extensive additional evidence, poor decision-making and a high number of appeals prevent many families from receiving their full benefit entitlement. The frequent reduction and removal of DLA generates high levels of financial insecurity. Having a local point of contact and information for help with forms would help greatly.

  34.  Such a system, would in our view revolutionise the delivery of benefits overnight since the onus would then be on the lead agency to ensure that all those who needed to know of a change would be notified—and if the resulting actions were not taken, there could be no question over the responsibility to pay arrears, or the duty not to recover resulting overpayments. It would take much of the stress and uncertainty away from the current system for claimants too.

  35.  Although the processing of the claims could still take place remotely and through different agencies if required, it would mean greater transparency for claimants and fewer excuses for not having reported increases in pay and other errors.

  36.  It would also mean far fewer issues surrounding the delivery of three "types" of benefit in the system—means tested, universal and contributory. Claimants would not miss out on benefits since all the possible entitlements would be explored at the outset and the claimant positively encouraged to return if anyone in the household became ill, became a single parent or a carer for example. Anecdotally, we have heard of families who have decided not to pursue entitlements to Tax Credits because its "just too complicated". Although clearly the introduction of Tax Credits benefited many families, the administration of it has put many families off. A local "face" for the service who could explain the criteria and reassure families would be very welcome.


Carers Allowance

  37.  Parents of severely disabled children are full-time carers, who often have little or no practical support from the state. Families with children in transition to adulthood say their responsibilities increase rather than diminish, as their child gets older. Parents already frequently express concern about the level of Carers Allowance and the earnings rules. The cut off for Carers Allowance should be tapered so that there is no disincentive for parents to work. At present, the whole allowance (£46.95 per week) is lost once a parent earns above £84 per week. There is a disincentive to work more hours if the salary is between £84 and £130.95 per week.

  38.  The failure to align the date on which the minimum wage rises with the date on which benefits earnings limits go up also means that some parents get a small pay rise as a result of a higher minimum wage and lose entitlement to Carers Allowance for several months until the earnings limit goes up later in the year.

  39.  Perverse disincentives to study need to be removed from the benefit regulations, for example the rule which bars Carers Allowance recipients from returning to "full time" study even if they are still caring for over 35 hours a week. For many who have been out of the labour market for some years, retraining is necessary to be equipped for the modern workplace.

Working Tax Credit (WTC)

  40.  Parents of disabled children find childcare inaccessible and unaffordable which is a major barrier to securing employment. Further support is needed to help families access childcare.

  41.  The childcare element of the WTC should be increased to recognise the additional costs of securing childcare for a disabled child. The costs of childcare for a disabled child are often substantially higher due to the need for higher staff ratios or more specialised care. For instance, an agency providing a home childcare worker with experience of disabilities would charge at the very least £8 per hour (although enquiries suggest the average charge is closer to £11 per hour). So for a basic 35 hour working week, even with no travelling time, childcare costs of at least £280 would be incurred. Yet under the current childcare element rules the maximum help available towards these costs would be £140 per week (80% of £175). This prevents families from being able to work.

  42.  The 16-hour rule preventing parents who work less than 16 hours per week from accessing childcare assistance via WTC should be waived for parents with disabled children. This would enable them to try out working a shorter number of hours, which they might be able to sustain along with their caring duties.

  43.  The restrictions on allowing childcare payments via WTC or employer vouchers to family members should be amended for families with disabled children. A family member may best understand the particular needs of a disabled child, and should be able to be recompensed for their childcare.

  44.  The childcare element of working tax credit is available to single parents, couples who both work, and to people with a partner who is working full-time or is incapacitated. We believe it should also be extended to families where one partner works and the other cares for both a disabled child and other siblings. It is often very difficult for a parent at home to meet the extra care needs of a severely disabled child while also caring for other children at the same time. In such cases the family may need to access childcare to ensure all the children's needs are met. We also believe that the childcare element should be extended to couples where one parent works and the other parent cares for a disabled person.

  45.  In terms of job-seeking, if a parent loses one job and is looking for another, it is crucial that the childcare element of working tax credit continues to be paid for some time. This will avoid them having to abandon a hard-won childcare place. We do appreciate the problem of only 80% of costs being covered—however, this cannot be insurmountable. If tax credits for childcare were to increase to 100% for a temporary period to enable a concerted job search, this would be most beneficial. Most parents say that it is much easier to find work than to find childcare.

  46.  Many carers experience additional costs associated with caring, as well as problems in saving or providing for a pension in later life. A caring role may also prevent them from advancing in their career (caring responsibilities may restrict carers to jobs that do not involve travel, overnight stays, evening work or overtime). In order to reflect these labour market disadvantages we would like to see an additional carer element introduced to working tax credit calculations, where the person working also provides regular and substantial care to a disabled child or adult.

  47.  Were these measures to be introduced, it would be much more realistic for parents with disabled children to enter and remain in the labour market.


  48.  Disabled children, young people and their families have been left out for too long. Every Disabled Child Matters (EDCM) is the campaign to put this right. We want all disabled children and their families to have the right to the services and support they need to live ordinary lives.

  49.  EDCM is a campaign by four leading organisations working with disabled children and their families—Contact a Family, Council for Disabled Children, Mencap and the Special Educational Consortium. We will challenge politicians and policy-makers to make good on the Government's commitment that every child matters.

  50.  The campaign has a target to sign up 25,000 supporters by July 2007—16,000 supporters are currently signed up. The campaign has is currently focused on influencing the Comprehensive Spending Review 2007 and driving up standards locally through our Local Authority Charter. A new work programme will be under way shortly on the involvement of disabled children and young people in the campaign.

5 April 2007

26   Parliamentary Hearings on Services for Disabled Children-Full Report, October 2006. Back

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