27 April 2011: Read an update following the publication of the government’s response to the consultation on Typecast
This is a bit of a departure from the kind of thing I usually blog about, but I read this post on Nickie’s blog Typecast (it was posted on 15 March 2011), and asked Nickie and Emma if I could repost it here. It’s long, but it’s incredibly important. Please read it.
We are scared. We are utterly terrified.
We have three children with ‘multiple, complex additional needs’ to quote the headteacher at school. Broadly speaking these encompass Autism, ADHD, Hypermobility and visual and hearing impairments. Once you’ve factored in that only one of those three is in full time education (we have one we are trying to get into full time but it’s not working out) and the ensuing multiple daily school runs, along with at least five different kinds of medical appointments per child on a regular basis it is completely impossible to find work that will accommodate the demands of our childrens’ care needs.
At the moment we are able to survive financially owing to us being in receipt of Carers Allowance. This means that we get additional assistance with the costs of living which really do make a difference. However our receipt of Carers Allowance is reliant upon our children being in receipt of Disability Living Allowance, which the Coalition now wish to change to a new system called Personal Independence Payments.
The aim under the new system is to cut expenditure by around 20%. This is due to George Osborne’s assertion that “three times as many people claim it [DLA] today than when it was introduced eighteen years ago“, a claim countered and dispelled on the Ouch! message boards. DLA is actually under claimed by around 40% and has a fraud rate of approximately 0.5%, far from ideal but very much lower than other benefits, mainly due to the sheer amount of evidence you need to provide from health professionals and others to back your claim.
They propose to reduce the paperwork and evidence by introducing an assessment by ATOS. However ATOS assessments have already been shown to be extremely flawed and not accommodating of individuals with impairments such as Autism. There is very little confidence in ATOS given how they are currently faring with their contract to perform medicals for Employment & Support Allowance; see here.
I believe that whilst the current DLA system requires an overhaul the evidence required from specialist professionals is actually more credible than a single 20 minute appointment with an assessor who has never met the claimant before and possibly has zero experience with the claimant’s actual disability. The ATOS system of assessment appears to purely be a cutting claimants exercise.
Initially the changeover to PIP is for adults, but my response to that is that firstly our Autistic children will grow to be Autistic adults. Secondly they are considering implementing it for children at a later date, and then taking into account aids and adaptations when making payment, so if they have a wheelchair (like our son) then you lose a bit of money, if they have additional support at school they lose a little more money, and so on and so on until it has all been whittled away. The threat is very real.
If our children lose their DLA then we lose our protected status, and are therefore going to be expected to find paid employment. There is no way we could get affordable childcare (special needs childcare when it’s even available – which it often isn’t – is routinely at least double that of other children because a child with additional needs is deemed to take two places). Even if we could, is that childminder going to to and fro from the school for the medical appointments? Are they going to cope with being spat at, kicked, hit? Our childrens’ needs will not have gone away, we will have no other way to support them and no money coming in, potentially no roof over our heads…. what then?
Plus, right now, where is the work? Particularly for someone who has largely been out of the workplace for seven years due to caring needs…..
As well as facing the potential removal of our entire family income, we are having to contend with the real consequences of the cuts towards mainly education and health for our children.
The government’s lift on ringfencing monies for the disabled was supposed to be so that local authorites could then provide a ‘joined up service’. Far from it. Because the monies are no longer ringfenced our daughter has had all early years support removed. Her preschool used to have access to the FIRST team for help and advice on how to include her and accommodate her needs, and she used to have Portage at home to develop skills which are lacking as a result of her developmental delay. These services have either gone or are going within the next term. Our sons were receiving support from the Aiming High for Disabled Children scheme, this took the form of a charity called Spurgeons who provided our sons with ‘buddies’ to befriend them and take them out for a few hours at a time, to teach them social skills and to give us some much needed respite (which has not been provided to us by our local social services despite at least four referrals from several health and education professionals). Spurgeons has had their funding from the local authority cut completely and therefore the scheme will be ending in June unless a private benefactor can rescue them.
As far as healthcare is concerned, our daughter has a cardiac conditon known as a patent ductus arteriosus. She will eventually need surgery to correct this, but at the moment is under annual review and has an echocardiogram to assess how she is doing. This echocardiogram was due to be performed in November last year. When we’d not heard by December I started to chase. Over the months of December, January and February I chased the GP, paediatric consultant and cardiac consultant’s secretaries only discovering last week that there are no cardiac clinics in Brighton for the forseeable future. We managed to get our little girl on the London list to see the Cardiologist at the Evelina and are hoping this will happen soon. However it will still be a minimum of five months late before she is seen and very squeaky wheel tactics had to be deployed to secure this.
Our little girl also has potential visual problems and was booked into an orthoptic clinic in May to see a consultant to decide whether or not she now needs glasses. Given that she already has hearing impairment and social communication disorder causing problems for her learning we want to minimise the effects of anything treatable to help as much as we can – Autism is manageable but not curable. Vision and hearing can be aided. The May clinic got cancelled and we were given an appointment at the June clinic. The June clinic has now been cancelled and we have an appointment for October, some six months after she was due to be seen. Apparently key changes in the eye occur between two and three years, the point of development our daughter has now reached.
The Community Paediatrician that sees our three is retiring in December and there are currently no moves to replace her. This means that key assessments that take place every six months to identify potential issues which may become problematic just will not take place. Potentially our younger son will not be monitored six monthly as he is now whilst he takes Methylphenidate for ADHD. Our younger son requires additional speech & language therapy input, however at NHS level they no longer offer this beyond the age of four due to ‘lack of resources’.
Our younger son is not thriving in a mainstream school, therefore we are having to jump through hoops to try to obtain Statutory Assessment for him so that he may attend either a mainstream school with specialist Autism unit or a special school to try and ensure the best possible education for him. All this knowing that Statements are actually going to be abolished next year.
Since our eldest was diagnosed with Autistic Spectrum Disorder some five years ago we have had to fight and fight hard, for an income, for our children’s health and education, even for continence products. It’s humiliating and we have to contend with media assertions that we are somehow scroungers and a drain on the system like we’re doing this somehow deliberately….
Prior to the General Election we saw our local MP Francis Maude door to door visiting. I told him our fears of cuts to services and benefits for the disabled and their carers, and he told us that we had nothing to fear and that we’d be protected due to David & Samantha Cameron’s experiences of having had a disbled child. I did not believe him then and so it has proven to be. The concept of protecting the vulnerable sadly does not sit well with Conservative ideology. I also felt rather nauseous at his use of the Camerons’ situation to obtain votes. It didn’t work in this case as it happens anyway.
It is utterly soul destroying. We are worried sick, stressed, not sleeping through worry. We have tried to highlight our case publically as generally people really do not know what the disabled of this country are facing under the Coalition. We have contacted the Guardian and have asked Mumsnet to highlight our situation to no avail. The Daily Mirror did feature a snippet in less than 100 words that I felt didn’t really address the issues fully. All I want is for people to be aware of what is happening, anyone can become disabled in the blink of an eye so the “couldn’t/wouldn’t happen to me” argument is null really.
There is a very real danger of throwing the disabled and their carers into poverty and removing their dignity. At the same time access to decent healthcare and a basic education is also being swiftly eroded. I feel so helpless and invisible, and that the country at large just cannot see us.
Postscript from 4 April 2011:
Under the new Government Universal Credits system we WILL lose half of the disabled child premium we formerly received under tax credits. This is not proposed, it is definitely happening. See http://www.touchstoneblog.org.uk/2011/04/support-for-disabled-children-cut-in-half-under-universal-credit/ . So whereby we previously received a top up to our tax credits of £52.21 per week we will now only get £21.06. It went through extremely quietly and has been completely missed by most of the media.
We are dependent on every penny. Even without the DLA reforms we now have to find something to cut back to accommodate this. Water and electricity bills due to continence issues? Fuel to get to and from hospital appointments? Clothes to replace those wrecked when they were having a screaming meltdown or chewing them? Which would you cut? Having a disability is more expensive just to put you on a level playing field with those without disabilities lifestyle wise. It’s not a question of luxuries.