Work & Pensions CommitteeWritten evidence submitted by Every Disabled Child Matters

1. About Every Disabled Child Matters

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 and Special Education Consortium. 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. EDCM is a member of the End Child Poverty Campaign and the Disability Benefits Consortium.

2. DLA and Disabled Children

2.1 Disability Living Allowance (DLA) is a vital financial resource to help families with disabled children meet their high unavoidable costs, such as transportation and personal care. DLA is a non-means tested benefit that is accessed by families’ right across the income spectrum. The National Network of Parent Carer Forums in their submission to the Government’s consultation on DLA stated “we regard DLA as an essential component to enabling the families of disabled children to live ‘ordinary lives’.” A recent survey by the Family Fund outlined some of the additional outgoing costs families with disabled children have to meet. Household’s reported extra costs of up to £400 per month relating to their child’s disability, with many households having extra costs for laundry, heating, hot water, clothing, food and household adaptations.

2.2 However despite this non-means tested benefit for families with disabled children, many still struggle to meet their additional costs. A recent Contact a Family survey of families with disabled children found that more than a third (34%) of respondents have fallen behind with repayments, most for credit cards and loans as well as utility bills. This survey also found that almost a quarter (23%) of surveyed families were going without heating and one in seven (14%) surveyed families are going without food.

2.3 It is imperative that any reforms to DLA for children do not result in families with disabled children being financially worse off. These families are already disproportionately likely to live in poverty. EDCM is concerned that any reduction in financial support for these families will result in higher rates of poverty amongst families with disabled children.

3. Personal Independence Payments (PIP) and Disabled Children

3.1 On the face of the Welfare Reform Bill it is not clear how the Government intends to reform DLA for under 16s. This has resulted in debate in the Commons stage of the Bill focusing on the system for working age adults. EDCM is concerned that the lack of debate and the legal implications of the Bill may result in the creation of a new benefit system for disabled children without proper debate and parliamentary scrutiny. EDCM believes that there is a valid case for the design of PIP to be different for under 16s, we set out below our reasons for this. In the past the disability benefits system has been designed around the recognition that there is a need for the system to work differently for children, for example children were able to receive DLA for the first 84 days in hospital, whereas for adults this stops after 28 days.

3.2 These concerns on the lack of clarity on the design of PIP for under 16s were addressed to some extent by the Government’s response to its consultation on DLA reform where it confirmed:

The Government intention is to extend PIP to under 16s as part of the welfare reform programme. The consultation response stated: “Clearly, extending Personal Independence Payment to children would be the right thing to do.”

However, PIP will not be extended to include disabled children in 2013–14. The Government will only look at transferring children onto PIP when they can “demonstrate it provides a fairer, more objective and more transparent alternative to the current arrangements”.

The Government recognises that a specific assessment should be developed to ensure that the needs of children with long-term health conditions or impairments are properly considered.

That under 16s will not be moved onto PIP without a public consultation and any decisions made will be subject to Parliamentary scrutiny.

3.3 EDCM welcomes the Government’s assurances that there will be some debate and scrutiny of any changes to DLA for under 16s. However we seek a clear timeline against which the Government plans to migrate children onto PIP. A clear message on the timescales for migration would allay the fears of parents of disabled children about the impact of the reform, which have been exacerbated by the lack of clarity on what the changes mean for them. We also have concerns about the implications of reform on disabled young people turning 16 after 2013—which we go into more debate about in section 4. We conclude this submission looking at how we believe PIP should work for children under 16 when and if they are eventually migrated onto it.

4. Disabled Children and the Qualifying Period

4.1 “When my son was diagnosed at 14 weeks with a rare liver condition we spent a total of nearly 18 months in hospital. During this time I lost my home, my business, all my savings, as I had to pay for accommodation, food etc for my other son as well as myself whilst we supported my youngest son in hospital.

4.2 The Government has stated that they are planning on increasing the qualification period before adults are entitled to PIP from three months to six months. It is currently unclear what the qualifying period for PIP would be for under 16s. In a debate on this issue in the Commons committee stage of this Bill the Minister for Disabled People stated: “If we were minded to look at a way in which to vary the qualifying period for children, we would consider it carefully.”

4.3 The importance of early intervention and support for families with disabled children is well documented. When a child has a diagnosis of a severe and enduring disability, particularly one which is life limiting or life threatening, the impact on their family’s financial circumstances is likely to be immediate. 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. There are similar issues for children who develop sudden-onset conditions that require them to receive specialist medical treatment. For example, children with cancer tend to receive treatment straight away and along with this, begin the immediate costs associated with a child in hospital.

4.4 A delay of six months before support is provided would deprive the family of essential early support, and would consequently place them at a disadvantage when they are in greatest need. We would like to see disabled children being entitled to DLA from the point of diagnosis. This recommendation is in line with a cross party report published in 2006 following on from Parliamentary Hearings on Services for Disabled Children which recommended that th:e “Government should also consider waiving the 90 day eligibility period where children have additional time-limited care or mobility needs as a result of medical intervention”.

5. Adaptations and Aids

5.1 “NHS wheelchairs are not always very good and some families cannot afford to pay extra. I think it’s good Whizz-Kidz are involved in providing wheelchairs as they have a lot of special knowledge about children and wheelchairs and provide training for disabled children. I went on one of their courses and it was really helpful.” Adam

5.2 EDCM is also concerned about the Government’s proposals on adaptations and aids. To financially penalise families for having suitable equipment would be extremely damaging. It would reduce families’ ability to contribute towards aids and adaptations that meet their child’s wider well-being needs and that help that child live a more independent and ordinary life. It would also not take into account that having an aid or adaptation does not create a completely accessible society and that to allow disabled children to live ordinary lives many families will still incur additional costs regardless.

5.3 Additionally, the reality faced by any family or individual who rely on the use of equipment designed to support independence or mobility is like any other type of equipment—and can and often does break down. We therefore do not think that it is appropriate to include adaptations and aids in an assessment for disability costs benefits.

5.4 The ability to use aids and adaptations cannot be considered as a constant within a child’s life. Children are much more likely to require changes in equipment as they grow or their needs change. At present, families with disabled children face significant delays in receiving the aids and adaptations they need. Recent research from Children and Young People Now showed that children frequently wait “more than three months to be assessed and a further four months to finally receive their equipment.” As a result, children who have been assessed as being mobile because of the use of a wheelchair for the purposes of DLA, might subsequently require a new wheelchair but be unable to access one for up to seven months.

6. Mobility Component of DLA

6.1 “The college currently requests a contribution towards the cost of transport. This payment contributes towards the cost of transport for activities outside of the curriculum. This includes, but is not limited to, visiting leisure facilities (for example, swimming pool and cinema), outings during the evenings and weekends (such as a trip to the coast), going shopping for personal items and accessing local groups such as youth clubs. The alternative would be to use public transport. This would be difficult as the college is not on a bus route…The activities carried out in the student’s free time are chosen by the students and if we were unable to request a contribution to the cost of transport from the DLA mobility component, our student’s choices would be severely restricted Specialist residential college

6.2 EDCM is concerned by the Governments proposals to remove the mobility component of PIP from disabled people living in residential care homes, schools and colleges. The justification given by Government for the removal of the mobility component of PIP from disabled people living in residential homes is that of double funding—ie transport is provided by the facility (school or college) themselves. However, the evidence—cited in the example above—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.

6.3 When the Government originally announced this proposal, in the Comprehensive Spending Review on 20 October 2010 they stated that the removal of mobility benefit would apply to all DLA and PIP claimants, living in local authority funded residential care, from October 2012. The Government upon the introduction of the Welfare Reform Bill delayed the implementation of this policy until April 2013 and attached the changes just to PIP claimants. This means until disabled children are moved onto PIP they will be able to continue to receive the mobility element of DLA when living in a local authority funded school.

6.4 However EDCM is concerned about how this policy will work for disabled children once they are moved onto PIP. We are also very concerned about the implications of this policy on disabled young people living in residential college and further education settings. For all young people aged 16–25 the ability to get around independently is vital in leading the “ordinary life” of a young person and for developing life skills leading to independent living later in life. We know it is also the Government’s intension for disabled young people to be able to live an independent adult life as stated in the Green Paper on SEN and Disability: “Our goal is for disabled young people and young people with SEN to have the best opportunities and support so that as far as possible they can succeed in education and their careers, live as independently and healthily as they are able to and be active members of their communities.” It would be devastating for financial support for mobility to be withdrawn from these disabled young people just as their adult lives are beginning.

6.5 Removing the mobility component of PIP from young people, and in the future potentially from children, severely restricts their ability to live independent lives. We also believe that it is in contravention of Article 31 of the UN Convention on the Rights of the Child, which covers young people up to the age of 18, which states:

“1. States Parties recognize the right of the child to rest and leisure, to engage in play and recreational activities appropriate to the age of the child and to participate freely in cultural life and the arts.2. States Parties shall respect and promote the right of the child to participate fully in cultural and artistic life and shall encourage the provision of appropriate and equal opportunities for cultural, artistic, recreational and leisure activity.”

6.6 Disabled children and young people should be able to spend time with their families and to lead an ordinary family life. They should also be able to spend time with their friends outside of school. This is not possible for many children and families without financial support due to the high unavoidable costs related to travel and leisure activities for people with disabilities.

6.7 We are concerned that if the mobility component of PIP is withdrawn from disabled young people, 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.

7. PIP and Disabled Young People Turning 16

7.1 The transition from childhood to adulthood is a notoriously difficult time for many disabled children, with many parents describing it as like “standing on the edge of a cliff, about to fall into a black hole”. Whilst we welcome the Government’s decision to have a different commencement date for children and working age adults for PIP we are concerned about the impact that interface between the two systems may have on disabled young people as they turn 16 in 2013 and beyond. EDCM has been concerned that the policy as it is written may result in disabled young people when they turn 16 “testing out the new system”. This issue was raised in the Common’s committee stage and the Minister for Disabled People commented:

“The honourable member for Stretford and Urmston talked about children turning 16 shortly after the introduction of PIP, and made the assumption that they would be the first to go through the new assessment. I can understand why she assumed that, but I would like to clarify the matter for her. The migration strategy is a very detailed piece of work, in terms of who would be migrated at which point. There are very important equality issues tied up with all those matters, and they are being looked at carefully, but we obviously want to consult disabled people, their families, and user-led organisations to get that important aspect of the Bill right. We would also include organisations representing disabled children. So I urge the hon. Lady not to make the assumption, at this stage, that 16-year-olds would be the first to go through the new assessment, because that may or may not be the case. We want to look at it in great detail.”

7.2 EDCM would like the Select Committee to seek further clarity on what safeguards the Government will be providing to ensure a smooth transition for disabled young people turning 16 in 2013. In order to mitigate the impact of disabled young people being the first people to “test out the system” we believe that disabled young people aged 16–25 should be the last people to be assessed for and moved onto PIP from DLA under the migration strategy. This would mean that 16–25 year olds were not considered new customers for PIP, and would continue to receive DLA, until the system had been thoroughly tested.

1 September 2011

Prepared 15th February 2012