Welfare Reform Bill

Memorandum submitted by Every Disabled Child Matters (WR 33)

1.0 Summary

1.1 Every Disabled Child Matters (EDCM) is the campaign to get rights and justice for every disabled child. We have been working to raise the political profile of disabled children and their families, and campaigning to get the services and support they need to lead ordinary lives.

1.2 EDCM is a consortium campaign with four members operating as equal partners:

§ Contact a Family

§ Council for Disabled Children

§ Mencap

§ Special Education Consortium

1.3 Between them, the campaign partners work with and represent all of the 770,000 disabled children and young people in the UK, and their families. The campaign has more than 34,000 supporters. EDCM is a member of the Disability Benefits Consortium and fully supports their submission.

1.4 This submission highlights evidence relating to how the Bill may impact on the benefits that families with disabled children receive. Families with disabled children are more likely to live in poverty and receive specific benefits – both means tested and non-means tested to help them meet the additional costs of caring and to compensate for the additional barriers families with disabled children face in entering and remaining in employment.

1.5 There is evidence that families with disabled children struggle to access affordable and accessible childcare facilities, and that where families are able to access childcare they pay a premium for this. The Bill as published does not make clear the Government’s plans on how it will support families to access childcare, and therefore work.

1.6 We would also like to present evidence on the likely impact of the creation of the disability benefit, Personal Independence Payment (PIP) on disabled children. The Government has made it clear that they do not intend to apply this benefit to disabled children under the same timetables as working age claimants. However this Bill enables the Government to move disabled children onto PIP in the future, therefore it is vital that it is designed in a way that doesn’t disadvantage disabled children and that reassurances are given that there will be a full public consultation on PIP for children, and that any enabling regulations are subject to affirmative resolution.

2.0 Childcare for disabled children

2.1 Families supporting a disabled child are 2.5 times more likely than other families to have no parent working for more than sixteen hours per week. One of the main barriers to work for families with disabled children is childcare. Childcare for disabled children is more expensive and there is a lack of suitable provision. This reduced capacity to work leads to families with disabled children being more likely to live in poverty.

‘There’s all this emphasis on getting people back to work, subsidised nursery places, after school clubs, breakfast clubs. But our children can’t access them.’

‘Two years ago I had to resign from my job due to lack of childcare for my severely autistic son. I now receive benefits – I would rather work [1] .’

2.2 Where childcare is available for disabled children parents have to pay a premium for it. Forty five per cent of families with disabled children pay more for childcare than families with non disabled children [2] . A survey of 350 families with a disabled child found that 90 per cent of families reported that the costs of childcare were a major deterrent to work [3] . The additional costs of childcare for disabled children creates an affordability trap [4] and makes the path out of poverty via work an uneconomical option for many.

‘Last year I found a playscheme for four weeks of the summer holidays, but this year I can only find something for two weeks. I just never know what’s going to be available, it’s a real problem the inconsistency really affects my son’s behaviour. I’m thinking of giving up my job as I can’t handle the uncertainty.’

2.3 Childcare during school holidays is a particular issue for many families with disabled children. There are a lot more mainstream options for non-disabled children but many families with a disabled child struggle to access childcare during the school holidays – forcing some parents to give up their job – causing financial uncertainty and removing an emotional support from some parents.

2.4 Currently, one of the ways that families with disabled children on a low income are supported to access childcare is through the childcare element of the working tax credit. The Bill (Section 12, subsection 1) allows for the creation of premiums within the Universal Credit to help families meet additional costs such as for childcare. However it is currently unclear how the Government intends to meet these costs [5] .

2.5 We believe that the new childcare premium should continue to meet a percentage of childcare costs – as opposed to a fixed amount – due to regional variations in childcare costs. EDCM would also like there to be additional assistance within the new childcare premium of the Universal Credit that helps families with disabled children meet a higher percentage of the additional childcare costs that they face. We would like for the Government to meet at least 90 percent of childcare costs for disabled children.

2.6 EDCM would like the committee to explore how legislation could ensure that families with disabled children are financially supported to access childcare and enter and remain in employment. This could be through the creation of a new childcare premium (Section 12, subsection 1) that pays an additional percentage of childcare costs for families with disabled children.

3.0 Personal Independence Payments

3.1 EDCM is concerned about the lack of clarity that has been given on the impact that this Bill will have on disabled children and their families. Disability Living Allowance (DLA) is a vital resource to help families meet the unavoidable additional costs of caring, such as transportation, heating and personal care items. The Welfare Reform Bill abolishes DLA (Section 87) and makes a series of legislative changes to disability benefit. However Ministers Maria Miller MP, Minister for Disabled People in the Bill’s second reading stated:

"I just wanted to clarify that these measures do not affect children."

3.2 Iain Duncan Smith, Secretary of State for Work and Pensions also responded to a question on how the reforms may affect children by indicating that reforms will take place at a later stage and may be different to system for adults, saying:

"We are consulting on that. However, this is going to be done later on, so we will have plenty of time to hear many more representations concerning  children before we make any decisions."

3.3 EDCM is concerned that it is unclear how this Bill will impact on disabled children. Whilst we are not calling for hastily drawn up plans we would like the Committee to seek confirmation from the Government on:

· Proposed timescales for reforming the benefits system for under 16s

· That there will be a clear pathway produced overseeing how children when they turn 16 and move from the child benefit system to the adult benefit system will be impacted by these reforms

· Assurances that reforms made in the Bill intended for adults and created without regard to disabled children will not later disadvantage disabled children.

· Reassurances that there will be a public consultation on any proposed changes that will impact on disabled children.

· Assurances that any regulations relating to disabled children will be subject to the affirmative resolution procedure.

3.4 Whilst in debates Ministers have said that the system outlined in the Bill has been for adults, by the nature of abolishing clauses 71 - 76 of the Social Security Contributions and Benefits Act 1992 (Section 87) the Act on will have an inevitable impact on disabled children. The following sections outline the safeguards we want to see placed in the Bill to ensure that if it is eventually applied to disabled children it does not put them at disadvantage that they have not been considered at this stage.

4.0 84 days

4.1 Disabled children living in residential care currently receive the care component of DLA for the first 84 days of their stay. This benefit is then stopped although children can receive it again if they leave hospital or their residential school/care home for any length of time.

4.2 This policy grants financial assistance to disabled children for 56 days longer than for disabled adults to recognise the additional costs on a family of helping a child settle into this away from home setting. It is an important factor in helping families meet the financial strain of continuing their caring role in their child’s life when their child is living away from home or is hospitalised. Having a premature or sick baby costs the average parent an extra £189 per week while their child is in hospital, with the average total cost reaching £1,885, with parents typically having to fund travel to and from hospital and food away from home, as well as dealing with loss of earnings [6] .

"My son is in hospital and has had his benefits suspended. We are finding this extremely difficult financially as travelling to and from the hospital to visit and attend meetings is costly and the nature of his challenging behaviour means we are continuously replacing clothing. [7] "

4.3 EDCM is concerned that the Bill in its current form does not make clear that the Government intends for disabled children to continue to have this extended qualification time before they lose the daily living element of PIP, if they are migrated onto this system. EDCM is also concerned that if children are to lose the mobility element of PIP that they should again receive this benefit for the first 84 days of their stay in residential school or care home.

4.4 EDCM would like the committee to explore how the legislation could be adapted to ensure that disabled children receive benefits for a sufficient amount of time to enable their parents to meet the additional costs of settling a child into living away from home and allowing them to continue their caring role. This could be through confirming (in Clause 83) that the Government intends to provide guidance stating that disabled children will be able to receive the daily living component of PIP for the first 84 days of their stay in residential school or care home.

5.0 DLA to remain an extra costs benefit

5.1 Maria Miller stated in a Westminster Hall debate on the 9th March on the future of DLA for children that:

"He also mentioned children, and I draw his attention to the report that my Department is doing with the Department for Education. It looks at how my Department will assess children in future in conjunction with the DFE, rather than putting children through multiple assessments, as at present."

5.2 While we welcome information sharing between education, health and social care between assessments, we are extremely concerned by the recent Government Consultation on DLA which suggested that assessments for DLA may take into account whether ‘a child’s support needs are being met from public funds by another institution, such as school.’ We believe that the Ministers above statement suggests that the Government may still intend to take education funding into account when calculating a child’s DLA or PIP award. This would erode the core purpose of DLA and PIP as an "extra costs" benefit which provides income to families with disabled children to help meet the unavoidable additional costs of raising a disabled child.

5.3 Families with disabled children face additional costs for transport, heating, fuel, laundry, household adaptations and many other items. These additional costs mean that families with disabled children are disproportionately likely to live in poverty [8] . When a ‘material deprivation’ approach is taken, which reflects the additional costs families with disabled children face, 93 per cent of families with disabled children report financial difficulties [9] . A recent Contact a Family survey reveals that one third (34%) [10] of families are falling behind with payments as they struggle to cope with these additional costs. DLA is there to help families meet these additional costs and, inline with the Child Poverty Act, to help prevent them from living in poverty.

5.4 In addition to this, disabled children have a right to access the same services that all other children access, such as education, health and social care. These services should be tailored to meet each child’s individual needs. However, services such as schools have a limited remit as appropriate to their purpose – i.e. education – and should not replace financial support that is provided to promote independence and reflect the additional costs incurred by families who are attempting to lead ordinary lives as active citizens.

5.5 To suggest that support provided by public funds in settings such as schools should be taken into account when assessing a child for DLA implies that there should be a financial penalty for a disabled child in accessing the services that non-disabled children receive as a matter of course. We are concerned that this move would be in contravention of Article 31 of the UN Convention on the Rights of the Child which the UK Government has reaffirmed its commitment to on many occasions.

5.6 It is imperative that the Government recognises that DLA and PIP are income to help families meet day to day costs, and funds met in other institutions are to help children access their rights for education and participation in society. We believe it would be damaging to the ability of many families with disabled children to financially cope if the Government was to take into account whether a child’s support needs are being met by other public funds. EDCM would therefore like the committee to explore how PIP for disabled children can be protected as an extra costs benefit.

6.0 Mobility element of PIP for disabled children living in residential schools

6.1 EDCM is concerned about the impact that removing the mobility element of PIP or DLA would have on disabled children. The purpose of the mobility component of DLA is to provide financial support to compensate families with disabled children for the fact that they have high unavoidable costs relating to mobility, for example, it is prohibitively expensive for them to travel or to access leisure facilities.

6.2 Many families currently use this money to fund accessible motability cars that enable disabled children to be transported by their parents to and from school at weekends and holidays, and allow them to be part of family activities outside the home. Motability cars are extremely expensive and many families require a long term loan to pay for them. Families use the mobility component of DLA to pay for this loan, and will no longer be able to meet these costs if they lose this valued benefit. Other families who do not have a motability car, or who have already paid the loans on their cars use this money, for example, to fund private taxis for their children due to inaccessible public transport, pay for fuel for the additional car journeys required or as an income top up to make up for lost income as a result of caring for a disabled child.

6.3 Many disabled children are in residential placements at a considerable distance from the family home. This situation arises not through choice but usually because the placement in question is the nearest, or in some cases, the only establishment capable of meeting that child’s needs. Removing the mobility component of DLA from these children severely restricts their ability to live independent lives. We therefore believe that this policy is in contravention of Article 31 of the UN Convention on the Rights of the Child.

6.4 We are concerned that if the mobility component of DLA and PIP is withdrawn because a child is in residential care or school it will not be possible for them to leave their residential setting when their families visit, to spend time with their friends or to take part in community activities. This means they will essentially be trapped in their residential setting, and as a result, they will become more isolated from their families and from the local communities. Equally, disabled young people at Further Education colleges will be prevented from leading ordinary, independent lives at the very point at which their adult lives are beginning.

6.5 The Government has said they are removing the mobility component of DLA from children and young people in residential special schools / colleges because of double funding – i.e. transport is provided by the facility (school or college) themselves. However, the evidence suggests that this is not the case. Even where transport is provided by the education provider, it is often restricted to provision at the start and end of term. No extra provision is factored in for visits at weekends or for the child when they are at home during the holidays. EDCM would like the committee to explore how disabled children can continue to be supported to live independent lives and continue to play an active part in their family’s lives.

March 2011

[1] Parent in ‘Between a Rock and a Hard Place’, EDCM, 2006

[2] Contact a Family (2010) ‘Counting the Costs’

[3] Beresford, B 1995, Expert Opinions: a national survey of parents caring for a disabled child

[4] EDCM (2006) Between a rock and a hard place

[5] Points 41 – 46 in Universal Credit: Welfare that Works, DWP, 2010

[6] Bliss (2007) Too little, too late?

[7] Parent in ‘Stop the DLA Takeaway” (2010) Contact a Family and Children’s Trust, Tadworth

[8] Kemp, P. et. al. (2004), Routes out of poverty, York: JRF

[9] Harrison, J. & Woolley, M. (2004), Debt and disability: The impact of debt on families with disabled children, York: Contact a Family and Family Fund

[10] Contact a Family (2010) Counting the Costs