Written evidence from claimant of Disability Living Allowance for Children (BFD0194)

I am writing with reference to the difficulties we have had with applying for child DLA on behalf of our daughter, and because it concerns the processing of the application, rather than the result, which we have had overturned at tribunal.

I would like to try and persuade you to look into how child DLA claims are processed by the DWP.

We cannot pursue a complaint through the DWP to have this looked at by those who write the policies and procedures for working practices at the DWP.  Letters addressed to the Director of Operations are sent unopened back to the regional centres.  The complaint manager at the regional centre can only escalate it if we have a complaint about her handling of the complaint.  This would be unfair.  We cannot go to the Independent Case Examiner or the Ombudsman because we cannot get a final response from the Director of Operations.  Our experience is such that there is real potential for harm if it is not isolated, and the Select Committee is the only option left to us.

Consider: why are we still pursuing this?  Why do we think it so important?  It is because vulnerable people may be at risk.  Policies when put into practice don't always work how you think they might.  However, a flawed system isn't going to discover its own flaws.  This means that if there is no robust system that investigates concerns, the result is wilful ignorance.  Mid Staffs is a good example of that.

Background:  our daughter developed severe, paralysing anxiety following serious physical illness.  She was unable to attend school for around three years, though thankfully is starting to recover.  You will know from the CAMHS enquiry how difficult it is to get care, and that a child would have to be very ill for it to be acceptable for them not to attend school.

Our concerns break down into three main strands:  how the DWP treats child DLA claims; how the DWP treats child (and perhaps adult) mental health claims, and the complaint system itself.

Child DLA claims:  Does the DWP have any responsibility to the child to ensure their decision is fully informed?

From the complaint response, there is no requirement for a decision maker to ask for medical advice in-house, or to contact the child's doctor.  This means that they go entirely off the form as filled in by the appointee.  However, the claim is in the child's name.  The child's needs do not change with the articulacy of the adult filling in the form: what safeguards are in place to ensure that the child's needs are met regardless of the ability of the adult?  From FOI responses, a significant number of child DLA decisions are overturned at mandatory reconsideration and tribunal: what safeguards are in place to ensure that a 'correct' decision doesn't depend on the tenacity of the adult?  Child DLA payments have a purpose: they are to meet the extra costs of a child with disabilities.  Refusal affects the whole family.  Whilst that shouldn't affect the decision, it does mean there is a real responsibility to get it right.  All through this process a family is caring for a child with a long term health condition.

Mental Health child DLA claims:  are the procedures for dealing with these claims fit for purpose? 

Our claim was refused on the grounds that she 'hadn't attempted suicide, self-harmed or been hospitalised.'  This is ignorant and irresponsible: are these really markers of the severity of a person's condition?  The complaint response was that these are valid reasons, but that, perhaps, it was tactless to say so. 

That it's relating to a child is awful, but at least I don't have to tell her.  If there is any chance at all that this is being communicated to adults with mental health conditions as the reason for refusal, then there is potential for very real harm.  We were told this on a number of occasions over the phone by different people: I can only conclude that it's standard procedure.

There is a child version of Medical Guidance for Decision Makers.  It doesn't cover many mental health conditions (only ADHD, ASD and learning disabilities): the FOI response says they have no plans to change the guidance and that they use the adult version when necessary.  All conditions are coded by the DWP using the ICD-10: it would be easy to see if there is parity of esteem between physical and mental health.  The child DLA form itself also doesn't lend itself to mental health conditions.

The DWP also didn't consider that a child not in school because they are too ill would need care throughout the day.  I was told that this was because she was 13.

DWP complaint process:  we have not been able to get this looked at the level of the DWP which decides how claims are processed.  This isn't democratic.  They don't necessarily have to agree with us, but we surely have the right to bring it to their attention.  I understand that an awful lot of people are very unhappy with them, but if we can separate out the process from the result, they should be able to.  They are public servants and we are all stakeholders in our social security system.  If we are no longer protected financially from illness, we need to know.  As parents, we have insurance to protect our family if one of the adults dies, or becomes seriously ill.  It didn't occur to us that we should insure our children: should we be at the stage where children cannot access healthcare or support when they are ill, we need to know.  It is irresponsible not to be clear about it.

As a select committee, you are the only people we can go to.  This will sound prissy, but the knowledge that children and families can be treated in this way is a burden.  It is isolating.  Perhaps it's similar to being a whistleblower.  Should you wish it, I can send the complaint and FOI responses by post or email.

It would be kind if you could at least acknowledge that you've read what we have written: a quick email would be fine.  Whether you look into any of these issues is up to you, but at least they will be known somewhere within parliament.

Many Thanks,

Timeline

6/9/12                            Our daughter starts suffering repeated knee dislocations.  She has                             little mobility and has just started secondary school.  The school                             building is inaccessible and can only offer education between 9am                             – 12pm.  Dad is a primary school teacher; Mum has just started a                             teacher training course after 10+ years in the NHS.  Mum leaves                             the course 11/14 as we cannot manage medical appointments,                             the need to care following dislocations and limited school hours.

11/12                            We apply for Child DLA.  The DWP write to the doctor, and the                             claim is paid.  It's very straightforward.

12/12-               Our daughter starts experiencing severe anxiety.  She cannot                             attend school at all.  We need a referral from CAMHS for specialist                             medical tuition: this takes a year.  She has 5 hours of provision, that                             she is mostly unable to get to because we are having difficulty                             getting care at CAMHS.

28/8/14              DLA claim received by DWP.  The mental health condition is now                             the main problem.  With this application we are hoping to access                             Carer's Allowance because one adult has been unable to work for                             two years and our savings are exhausted.  We have a large, loving                             extended family, but not one that can support us financially, or with                             care.

11/9/14              DLA claim refused.  Mandatory reconsideration requested same                             day over telephone.

29/11/14              DLA claim refused again.  Written reasons:

                            'It is accepted that [  ] can become anxious and has problems in                             social situations.  There is no evidence to show that she has been                             self-harming or had any hospital admissions in the last 12 months.                              It has been decided that the help she needed during the day and                             night would be for reassurance only.'

                            No medical report had been requested.  On phoning for an                                           explanation I was told that she had been refused because there                             was no evidence of suicide attempts, self-harm, hospitalisation.                              Not quite believing it, I rang a few more times, spoke to different                             people, and was told exactly the same thing: no suicide, self-harm,                             or hospitalisation.  As a reason for refusal, it was totally                                           unremarkable to each person I spoke to.  She was also considered                             not to be in need of care, whilst unable to attend school, because                             she was 13. 

17/12/14              Application for tribunal received by HMCTS.

19/1/15              New decision awarding lowest level of DLA.  I received a couple of                             phone calls from the DWP a few weeks prior.  I was asked some                             more questions; the lady said that 'it was to sort out an award'.  I                             was told that if we didn't agree with the decision, we could carry on                             to tribunal.

21/1/15              Letter from HMCTS stating that the tribunal process has ended.  To                             appeal the recent decision we had to start again by requesting                             mandatory reconsideration.  We did not have any say in the ending                             of the tribunal process.

28/1/15              Mandatory reconsideration requested.

11/3/15              Mandatory reconsideration decision: no change.

23/3/15              Application for tribunal received by HMCTS.

29/5/15              Tribunal hearing: appeal upheld.  Middle level awarded, which                             means  we can apply for Carer's Allowance.  New DLA payment                             paid  end 7/15 - Carer's Allowance paid 7/9/15.

Throughout all this time we are caring for an extremely ill child, struggling to get CAMHS referrals through, with no medical or financial support.

October 2015