Select Committee on Work and Pensions Written Evidence

Memorandum submitted by Contact a Family (CP 23)


  Contact a Family is a UK-wide charity which aims to enable parents and families with disabled children to have access to good quality advice and information, broad ranging appropriate support and contact with other families.

  We have a freephone helpline providing advice and support to families across the UK. We have offices in Scotland, Wales and Northern Ireland as well as regional offices in three English regions. We also have six community projects in Lewisham, Lambeth, Wandsworth, Southwark, Ealing and Southall which provide hands on support and help to families with disabled children in these boroughs.


  A vital component of our work is to encourage families to claim the benefits that they are due. We are committed to an anti-poverty agenda because of our commitment to implementing a practical equality strategy which includes low income families.

  The Committee asks whether specific groups of children are particularly affected. Families with disabled children are certainly more likely to be poor.

  These families have higher expenses and lower incomes (Dobson and Middleton "Paying to Care" 1998; DSS "Households Below Average Incomes" July 2001). This is especially true of minority ethnic families who are less likely to claim benefits and when they do, are refused more often and get given lower rates, routinely, than white families (Chamba "On the Edge" 1999).

  Over half of households with disabled children lack some of life's basic necessities because they can't afford them, (Gordon et al 2000 Disabled Children in Britain) and three quarters of families with a disabled child live in an unsuitable home (Oldman & Beresford 1998 "Homes Unfit for Children").

  We want to make sure that our families get what they are entitled to. Welfare benefits advice work makes you less poor, but also has health benefits. It also improves physical functioning, self reported general health, vitality, social functioning and emotional functioning and improves mental health. This has been verified in a number of studies, such as Abbotts & Hobby "Welfare Benefits Advice in Primary Care" 2000. Thus making parents less poor means they are more able to work on their relationships and more likely to have the energy to do other things, like attend a support group or challenge the level of services that they receive.

  The Contact a Family helpline has taken positive steps to address poverty and benefit take up, with particular emphasis on marginalised groups.

Reaching out to more families through the helpline

  For 2001-02, enquiries to Contact a Family overall were up 62%. In 2002-03, these figures were up by a further 31%. Contact a Family now reaches over 18,000 families a year. In addition our website, receives over a million visits in a year, making it the 16th most visited charity website.

  Of our enquiries, over 1,650 concern financial matters, including benefit advice. This was an area of work which we only started to address in any depth in June 2001 when the freephone helpline was launched. In the year to April 2002, enquiries on financial matters increased by 207%. They increased a further 13% this year.

  Low income families have been targeted via a Disability Living Allowance take up campaign—this generated the highest enquiries number of enquiries in a single month. In November 2001 at the height of the campaign, the helpline dealt with 1,600 enquiries, more than double the usual monthly average.

  Coverage of the campaign was excellent, including on minority ethnic radio stations and through tabloid and local press.

  A regular rolling programme of press releases is undertaken each year, promoting our advice services with regard to a number of different issues.


(a)  Childcare

  Government policy recognises that the route out of poverty is work. If you are a parent, being able to work is dependent on being able to arrange and pay for appropriate childcare. Childcare is a special problem for families with disabled children. A number of studies have given compelling evidence of the extent of difficulties with childcare for families with disabled children. These difficulties are of two different sorts—being able to pay for child care and access to childcare.

  Firstly, there are issues in terms of paying for childcare. The new Child and Working Tax Credits allow a flat rate for child care of £135 for one child, of which 70% can be covered. For the first time, the costs of using a home care agency can be covered. However, an agency supplying a worker with experience of disability issues would charge at least £8 per hour. So for a basic 35 hour working week, even with no travelling time, costs of at least £280 would be incurred. The maximum a parent could claim would be 70% of £135 ie £94.50.

  The allowance within Tax Credits for childcare should be substantially increased in the case of a disabled child.

  However, the problem of insufficient supply still remains. A recent survey in Southwark (Early Education and Childcare for Children aged 0—14 with Disabilities and Special Needs, 2000) for which Contact a Family Southwark helped to find parents showed that there is insufficient after school and holiday provision for disabled children—only 9% of statemented children and 1.4% of children with special needs receive out of school provision. Holiday schemes provide for 7.4% of children with statements and 30% of severely disabled children. Childcare during the holidays is the highest priority for working and non-working families. Seventy-one per cent of all parents used some form of childcare, but only 54.8% of parents of children with special needs.

  There are very few specialist nurseries, childminders with accessible premises and appropriate training and expertise to look after children with complex needs and services can be inflexible. (JRF 1998 "Combining Work and Care")

  By offering incentives to train as a childminder to disadvantaged communities, it would increase employment, reduce dependence on welfare and offer greater choice for families seeking childcare. Specific recruitment drives in black communities are essential—black and Asian parents are far less likely to be able to access child care. (Daycare Trust 2000 "Ensuring Equality")

  The Government, through the National Childcare Strategy needs to substantially increase the level of resources to enable new and additional childcare places for disabled children.

  Contact a Family arranged a web based survey about childcare for three weeks from Friday 11 October to Friday 1 November 2002. In total 1,870 parents visiting the Contact a Family website completed the short pop up questionnaire. The results are outlined below. Six questions were asked.

Q1  It is more difficult to find appropriate childcare for a disabled child than a child who is not disabled

    Strongly agree  1,319

    Agree  358

    Not sure  67

    Disagree  25

    Strongly disagree  20

Q2  It is more expensive to arrange appropriate childcare for a disabled child than a child who is not disabled?

    Strongly agree  1,207

    Agree  374

    Not sure  154

    Disagree  34

    Strongly disagree  17

Q3  There is not enough choice in childcare options if your child is disabled

    Strongly agree  1,209

    Agree  389

    Not sure  137

    Disagree  28

    Strongly disagree  19

Q4  I have found it difficult to combine working with looking after my child because of childcare problems

    Strongly agree  908

    Agree  394

    Not sure  259

    Disagree  76

    Strongly disagree  25

Q5  I have had to cut back on my work or give up work because of childcare problems

    Strongly agree  817

    Agree  397

    Not sure  243

    Disagree  142

    Strongly disagree  35

Q6  The Government should do more to encourage a greater variety of childcare for disabled children

    Strongly agree  1,414

    Agree  264

    Not sure  52

    Disagree  17

    Strongly disagree  17

  Perhaps most worrying is the figure of over 1,000 people who had had to give up or reduce working hours because of a lack of childcare. This sits uneasily with government policy to encourage work as the main route out of poverty.

  In addition to the website survey, qualitative information was sought from parents and professional workers by means of asking them to e-mail detailed comments on their own experiences. Some of their different experiences are directly quoted below.

Childcare worker

  "Once I started to site for one family with children with disabilities, I found that my name and number spread like wild fire, since I was one of the only people willing to care for those precious children."


  "I am really struggling with this issue now. I need to work to help to support my family but my son needs me to be at home. I want to finish my degree as well but guilt is taking over."


  "The biggest issue is an appropriate setting for a child with severe learning difficulties. Trained staff is the key. Also the attitudes of other parents to a child with autism."


  "My daughter's condition is unpredictable, often resulting in hospitalisations for dehydration, pneumonia and other crises. I had to leave work after realising the futility of trying to write a report while sitting at my daughter's hospital bedside at two in the morning. Finding appropriate care is almost impossible, even though she is a pleasant easy going child. Her medical needs are just too complex and many people have been unwilling to watch her due to fear of what might happen, as illness comes on suddenly and seriously."


  "We have a 17 year old with a rare disorder. She is physically too old for childcare yet mentally not old enough to be by herself in the summer holidays, or go to activities for adults. This is a large challenge and pretty frustrating. Even when she is at school, we have to fit work and meetings around bus pick up and delivery times."


  "I work days and my husband works nights. We don't enjoy doing this but it is the only way we can afford the things we need as we were turned down for benefits. It's very hard to balance work and three children, especially when one has bladder exstrophy."


  "I want to return to work—I was very successful at my job and earning a very good salary—but simply cannot find childcare for my son with ADHD. Thirteen childminders to date will not look after him. Come on Mr Blair and wake up to the needs of real people."

  It is also about working with social services departments to ensure that they arrange care which fits around employment patterns—for example that physical care for disabled children is available at the weekend, if the parent works at weekends. This will also involve encouraging the use of direct payments for such needs, so that social services give cash instead of services, if this allows greater flexibility.

(b)  Expansion of family friendly employment practices

  Contact a Family believes strongly that family friendly employment practices are in the best interests of both employer and employee.

  In May 2003, Contact a Family carried out a survey of 710 UK parents visiting our website to find out what they knew about, and what their opinions were of, these new rights. The results are as follows.

  We asked:

Are you

    working full time for a medium to large employer—32%

    working full time for a small to medium employer—14%

    working part time for a medium to large employer—16%

    working part time for a small to medium employer—12%

    not working at the moment—26%

How aware do you think you are about your new rights to ask to work flexibly?

    very aware—14%

    quite aware—16%

    not sure—29%

    not very aware—15%

    very unaware—26%

Does your employer currently have any flexible working arrangements (eg flexitime, allows staff to work from home occasionally)?


    not sure—24%


Does/would flexible working help you to combine working with looking after your child?


    not sure—12%


How sympathetic do you think your employer is/would be to requests for flexible working?

    very sympathetic—14%

    quite sympathetic—23%

    don't know—41%

    quite unsympathetic—10%

    very unsympathetic—12%

Now that the law has changed, how likely are you to ask to work more flexibly?

    already working flexibly—15%

    very likely to ask—26%

    might ask—22%

    not sure—26%

    unlikely to ask—11%

  The results show that there is still some way to go before parents of disabled children can be said to understand their new rights—with only 30% describing themselves as quite or very aware of their new rights.

  Parents welcome flexible working. 77% believe that flexible working does or would help them to combine working and caring. This is a clear endorsement of the need for these new regulations. However, 22% thought that their employer would be quite or very unsympathetic to such requests. For this reason, we would welcome a strengthening of the regulations to give a right work flexibly, rather than simply a right to ask.


  "My employer (the health service) thinks that they are being flexible in allowing me to work 35 hours a week, rather than 40-50 hours."

  We would also welcome an extension to the rights of fathers to take extended paternity when a child is born with a disability.

  Fathers of disabled children frequently report that they feel relatively uninformed about their new child as ongoing information about the development of the baby is only received via their partner who maintains contact with professionals. They often perceive themselves as "the peripheral parent" (Carpenter & Herbert 1994). It is most important that professional-parent dialogue includes the father.

  We would strongly urge that parents should be allowed to use all their parental leave as one block at the end of maternity/paternity leave. This would be particularly important where a child is born with a very limited life expectancy, or who needs major surgery at birth and is unable to leave hospital and return home with his/her parents. In these cases, there may be no way that a child will survive longer than a few weeks and both parents need to be able to share the available time with their child without risking their employment, which will be needed in the weeks and months to come.

  For similar reasons, we would also support the possibility of extending paid paternity leave where the child is born with a disability. Certainly, the available research suggests that the birth of a disabled child can leave men distraught and devastated. (eg Carpenter & Herbert in "Families in Context" 1997, where fathers described themselves as "numb", "angry" and "in shock").

  An article by fathers of disabled children in the Guardian on 29 May 2002 describes how "I stopped functioning; I couldn't stop crying; couldn't be in the house near the children; couldn't see friends . . . After a couple of weeks of barely eating or sleeping and spending nights crying on the floor of the children's room, I went back to work . . . Months later I still have to go out in the car park on a regular basis so people won't suspect I'm losing the plot".

  Any additional support that could be offered to fathers at this most difficult time would be most warmly welcomed by fathers and their partners.

Support through welfare benefits

(1)  Tax Credits

  Contact a Family broadly welcomes the introduction of the new tax credits.

  However, there is some anecdotal evidence that the new Child Tax Credit has pushed some families just off Income Support. This means that they cannot get access to loans and interest free credit through the Social Fund.


  "I have lost all the extra I got on the tax credit through having to take a loan from a loan shark after I was burgled. The Social Fund said they couldn't help at all".

  As outlined in the section on childcare, the allowance for child care costs within the Tax Credits needs to be substantially increased in the case of a disabled child.

  We welcome the extension of child care costs to cover formal childcare in the home. However, we would like to see consideration given to the extension to less formal arrangements where Social Services certify that this is necessary and appropriate.

  We would like to see a greater flexibility in helping families with disabled children back into work—for example by having a relaxation of the working hours rule, to allow parents to start to qualify at lower hours—for example at 10 hours a week. This would help those whose caring responsibilities are particularly demanding.

  We also believe that it is essential that help with mortgage costs are available to low income earners and not just those on Income Support.

(2)  Hospital Visits

  Contact a Family has long asked for financial assistance for parents with the costs of visiting a sick child in hospital.

  In his report on the Bristol Royal Infirmary, Professor Kennedy recommended that families are assisted to meet the costs arising from travelling and being away from home. Unfortunately, the Government rejected this recommendation.

  The difficulty, in essence, is that help with the costs of travelling to hospital for treatment are met through a statutory scheme for low income families. However the costs of travelling to hospital for visiting are not included within the scheme. The only way of having these costs met is through the discretionary Social Fund, which is a cash limited fund restricted to families on Income Support. Low income families who are working or on benefits other than Income Support (eg the new Tax Credits) receive no help at all.


  "My son spent many months on and off in hospital having various operations to correct his deformity. My husband was self-employed at the time. We received no financial help in any way shape or form for anything. My husband's business went down the pan and we were practically penniless. Assistance with visiting costs would have taken at least a little pressure off. I never wish to open the cupboard doors and be faced with emptiness again."


  "I live in West Wales where there is no neurology service for children. My daughter has uncontrollable epilepsy and we travel to GOSH in London frequently. I would like to see changes that incorporate assistance with costs for families travelling outside their Health Authority area, the cost of fuel is an issue in rural areas as is care for other siblings."


  "My daughter will be in GOSH for two weeks and we live in Bristol. On benefits only but not Income Support as my husband is medically retired. We will want to visit as often as possible. This is going to be very expensive for us but we will do it."


  "It's a 40 mile round trip each day to visit my son after his tracheotomy. He'll be in for two months. Onely one of us is allowed to stay over but we have a new baby and my husband has to work anyway, so neither of us can stay. I'd say we spend £20 on petrol every other day. The food there is really expensive too. Because he works, we don't get any help."

  There is a statutory scheme to help people visit family members in prison and it seems unfair that this is very different to the situation of a sick child in hospital whose parents may receive no assistance at all with the costs of visiting their child.

  There has been clear recognition by government that children need to have parents with them when they are in hospital, including overnight. The Department of Health's own guidance paper "Welfare of Children and Young People in Hospital" is explicit on this point—stating that family support is essential and not a luxury.

  Contact a Family suggests that the Government might wish to introduce statutory help for all low-income families to cover the costs of hospital visiting, which would target help on those on the lowest incomes and that those parents whose children are receiving care in a hospital some way from their homes should receive help towards visiting costs, regardless of their means.

(3)  Council Tax

  We would urge that consideration be given to extending the discount provisions in the Council Tax to those caring for a child under 18. At present, regulations discriminate against those who care for a younger person. For example, at present, two parents caring for a child under 18 who has severe learning difficulties will receive no discount on their Council tax. If the child is 18 or over, the parents will receive a discount of between 25-50% on their bill, depending on whether one or both parents care for over 35 hours a week. This is fundamentally unjust.

(4)  Social Fund

  A number of measures need to be taken. Grants need to be extended beyond families on Income Support and Income Based Job Seekers Allowance to those who are in receipt of benefits such as the new Child Tax Credits and Working Tax Credits for low income earners. We believe that new grants should be made at particular trigger points such as a child starting school. Consideration should be given to extending winter fuel grants to parents of disabled children on benefits, particularly those with disabled children under five who are at home all day. This kind of targeted support would be of relatively modest cost and would bring enormous benefits to the poorest families.

(5)  Carers Allowance

  The rate of this benefit needs to increase to at least the rate of a state pension. It should be paid to full time students. Whilst we welcome the extension of this allowance for eight weeks after the death of the disabled person, the extension should also apply to those whose child is admitted to permanent care.

(6)  House Adaptations

  We would like to see the extension of HEES Plus grants (available to older people) to enable families of disabled children to apply for central heating grants.

  The means test for Disabled Facilities Grants is assessed on the parents' ability to borrow money. Many parents of disabled children cannot afford to borrow money. If they are employed, they may feel concerned that they may have to reduce their hours at any moment, or give up work if their child becomes seriously ill. Some refuse a grant because they cannot afford to raise their contribution. Children's needs therefore go unmet. The campaign "Homes Fit for Children" argues that children's needs should be met without a means test on parents.

(7)  Disability Living Allowance (DLA)

  We would like to see low rate mobility component extended to three and four year olds who have difficulties such as visual impairments. This would mean that they would receive benefit if they are unable to play outside in a secure area such as a garden.

(8)  Social Services for Disabled Children

  Too often parents tell our helpline that there are limited respite options for children, especially those with challenging behaviour. Services may not be flexible enough to fit in with parents' lives (eg evening care to enable them to attend a school parents evening for a non-disabled child) or work patterns (eg shift work) or may not meet their cultural needs.

  Parents report waits of up to two years to be assessed by an occupational therapist for equipment. They report weeks of home visits, reports and letters to get equipment costing a few pounds.

  There needs to be a susbtantial investment in the provision of services for disabled children and a recruitment and training drive to ensure that sufficient, quality, trained staff are available.

  In conclusion, there are a number of areas of policy which still impact negatively on the lives of families with disabled children, despite welcome moves to improve their visibilty and status. Contact a Family has a number of detailed responses on various aspects of policy briefly mentioned here and would be pleased to discuss any of these further with a view to looking at how a greater reduction in child poverty amongst disabled children could be achieved.

Jill Harrison

Director of External Affairs

15 September 2003

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