Autism, Child Poverty & DLA David Williams Welfare Rights Unit, Neath Port Talbot CBC

Autism & Child Poverty – The Links  The Impact of Autism (APPG 2001):  ‘additional costs for a family caring for someone with autism, some of which are considerable’  ‘caring has an opportunity cost…carers are often unable to work’  ‘cost of households dividing, when autism takes it’s toll on relationships.’

Autism & Child Poverty – The Links  A Life Less Ordinary (New Philanthropy Capital 2007):  ’30% of children with autism live in families where neither parent works, compared with 14% of other children’  ‘Families of children with autism face a range of extra costs…replacing clothing, not being able to use public transport, having to adapt the house.’

Autism & Child Poverty – The Links  The Economic Consequences of Autism in the UK (Foundation for People with Learning Disabilities 2007)  ‘Annual costs for children with low-functioning ASD living with their families: £585 (aged 0-3), £23,869 (4-11) & £36,474 (12-17)’  ‘Average annual costs for children with high- functioning ASD ranged from £1,214 to £21,090.’

Autism & Child Poverty – The Links  Financial Problems Associated with Autism..’ (University of Missouri 2008)  ‘..costs include specialised child care, speech & language therapy…and costly food supplements’ as well as ‘replacement costs for items that were destroyed’ by their child.  ‘families quoted..skipping meals to be able to afford therapies…robbing their future by depleting savings..and even filing for bankruptcy.’

The Importance of Benefits Take-Up  The Impact of Autism (APPGA 2001):  ‘shows the shortfall from benefits and how families are subsidising the Community Care budget.’  recommends that ‘ benefits need to take the additional expenditure for people with autism into account.’

The Importance of Benefits Take-Up  Autism: Rights in Reality (NAS 2003):  ’36% of carers openly admitted that they do not understand the system’  ’64% cited problems with the forms’  ’17%...were left feeling negative and stressed by the application process’  ’16% were simply unsure of their entitlements and didn’t know where to apply’  ’10% had experienced a loss or reduction in benefits which they felt was unjustified’  ’30% of those receiving DLA had gone to appeal, rising to 45% in families with an annual household income below £12,000  Only 5-7% received the additional premiums on their other benefits which their DLA should have entitled them to

Why is DLA so important? Always paid on top of other income:  does not overlap with other non-means tested benefits,  does not count as income against means tested benefits  paid on top of any other income, including f/t earnings Always paid on top of other income:  does not overlap with other non-means tested benefits,  does not count as income against means tested benefits  paid on top of any other income, including f/t earnings Extra means tested benefit: An award of DLA can lead to:  extra premiums/additions on Income Support, Income based JSA, Pension Credit and Housing / Council Tax Benefits  extra elements in Working and Child Tax Credits. Extra means tested benefit: An award of DLA can lead to:  extra premiums/additions on Income Support, Income based JSA, Pension Credit and Housing / Council Tax Benefits  extra elements in Working and Child Tax Credits. Passport to other benefits An award of DLA Care might:  give exemption from the “Personal Capability Assessment”  enable a carer to get Carer’s Allowance and/or Carer’s Premium. Passport to other benefits An award of DLA Care might:  give exemption from the “Personal Capability Assessment”  enable a carer to get Carer’s Allowance and/or Carer’s Premium.

 Lack of accurate information/awareness  Length & complexity of claim form  Negativity of claim process  Stigma around benefits system  Lack of expert advice/assistance  Linguistic/ethnic barriers  Lack of accurate information/awareness  Length & complexity of claim form  Negativity of claim process  Stigma around benefits system  Lack of expert advice/assistance  Linguistic/ethnic barriers So Why Don’t People Claim it?

 I’m working so I can’t claim it.  I might lose my other benefits.  I’m not physically disabled so I can’t claim it.  My claim was turned down before so I can’t claim again.  DLA is for paying for carers, and I don’t have any.  I’m working so I can’t claim it.  I might lose my other benefits.  I’m not physically disabled so I can’t claim it.  My claim was turned down before so I can’t claim again.  DLA is for paying for carers, and I don’t have any. Myths Surrounding DLA Myth

Disability Living Allowance One benefit, two components:  Mobility component: lower rate higher rate higher rate  Care component: lower rate middle rate middle rate higher rate higher rate One benefit, two components:  Mobility component: lower rate higher rate higher rate  Care component: lower rate middle rate middle rate higher rate higher rate

What We’ve Done in NPT  Take-up campaign for DLA – posters distributed via schools & hospital and play centres.  Developed training courses & seminars to increase knowledge base  Written articles and liaised with autism charities to further raise awareness

How We Work  All referrals dealt with on casework basis  Home visits in all cases  Full benefit check done to include whole household, not just the child  End to end process – we complete claim form, keep copies, write reconsideration letter if necessary, represent client at appeal tribunal and help claim any additional benefits that are appropriate. All work subject to stringent quality checking as per LSC contract  File not closed until all benefit issues resolved

How Successful Have We Been?  64 children helped in first year  38 files fully resolved so far, 26 ongoing  Total benefits raised £196,  Average benefit raised pa per child £5,  Some children have now had a second file raised to do renewal forms or claim mobility component at age 3 or 5!

Results from Take-Up Campaign Mobility Component: 14 children on higher rate (36.84%) 22 children on lower rate (57.9%) 2 children not awarded mobility (5.26%) Care Component: 28 children on higher rate (73.68%) 10 children on middle rate (26.32%) 0 children on lower rate. All children awarded care component

How Does This Compare? The figures for the mobility component are almost identical to those shown in the NAS report Autism: Rights in Reality However, the care component figures differ greatly with almost 74% of children achieving higher rate as opposed to 43% in the report

Particular Issues Identified  The difficulty in obtaining higher rate mobility component for autistic children  The difficulty in obtaining DLA of any sort for children with Asperger’s Syndrome  The problem of greatly reduced or lost DLA on renewal at age 16 (transition)  Chronic non awarding of extra premiums, knock-on benefits and entitlements

What Progress Are We Making?  Re-visiting autism cases with lower rate mobility component and claiming higher rate. Award rate for HRM is continually increasing.  Have challenged DWP guidance on Asperger’s and this has been slightly amended. Most claims now successful.  Transition renewals remain big issue (not helped by new claim form) which we will be taking up with DWP.  Holistic casework approach has seen big increases in awards of knock-on benefits.

The Interactive Bit !  Any questions?  Your DLA experiences  Making friends (?) with the claim form