Ah…'THE SYSTEM’ that phrase that can either give you reassurance or fill you with dread! Things will be better now she is ‘in the system’ people had said which kind of leads you to think that help will be at hand and some of the burdens will be lifted.
WRONG … yes there are things in place to help but the hoops that have to be jumped through to enable people to qualify for this help is beyond belief. The Government are very good at saying how much they provide in the form of benefits etc., to help those with disabilities and their families. They are very good at making out that they are securing a future for such people, but have they ever tried these systems out for themselves? Has a Minister ever thought of testing them out under a false identity so that they can see exactly what red tape has to be cut through and even then there are no guarantees. I think not. The first hurdle to overcome is the dreaded D.L.A. form!
http://www.dwp.gov.uk/advisers/claimforms/dla1a_child_print.pdf
I have put a link to the form so that you can take a read through it yourself if you are not familiar with it already. The reason for the link is that in total this form is 73 pages long so be warned don’t try and print this at home unless you are prepared to sacrifice a small part of the rain forest! Until Jess came along I was aware of D.L.A. but I had never seen a claim form.
The first 31 pages are basically an instruction booklet telling you what each question means and how they want you to fill it it. Now surely if the questions were worded in such a way that it was obvious what they meant in the first place then some of our rain forest could be protected from the onset. Can you imagine having to fill in an exam paper which had a 31 page explanation as to what the questions meant at the beginning of it! And yet this form does lend itself to being ‘exam’ like. You have to pass to get financial help for your child – no pressure then!!
So with the first 31 pages put on one side for reference we now start the actual claim form which they have numbered from page 1 again. Not until you get to page 10 do you actually get chance to start to talk about your child’s disabilities and their needs. Now the test really starts.
For those that may have any doubt as to why DLA is necessary and what parents use it for I conducted a quick survey, these are just a few of the many responses:
Goes towards the cost of therapies, equipment and medicated special foods but does not cover all. Could not live without it as get no support services elsewhere
Allowed me to get a car on motability which I would not have been able to afford otherwise. My son has a non folding wheelchair which doesn’t fit in many car boots so we needed a bigger accessible car.
Helps pay for the astronomical electricity bills as a result of being in the house. Sensory equipment and medical equipment.
I could take the time off work unpaid to attend all the appointments – over 50 days in one year!
Petrol for all the hospital appointments
It is understandable that questions on the D.L.A. form need to be thorough so that the right payment is made to suit the child’s needs but does it have to be so complicated?
Now lets assume you have managed to get through the D.L.A. hurdle everything else must surely be simple?
WRONG… the following is our story but we know that we are not alone.
Jess needs a specially adapted bed. The cot that she is in at the moment is getting too small for her and it does not suit her needs.
For a start she is pump fed through her gastrostomy during the night. This is her main source of food and without it she would not survive as she does not eat enough solid food during the day to keep her alive. To minimise the risk of choking etc., her head has to be elevated 30 degrees during her night feed, at the moment this is achieved by having towels ontop of one another under the mattress and therefore raising it slightly at the one end where her head is.
Jess is now getting taller and also stronger (the special milk is doing it’s job). She does not always go to sleep straight away or sometimes she will wake up during the night. During these wakeful sessions she is quite happy to play in her cot, but to Jess play means standing up, usually on the part of the mattress that is raised and reaching over the cot sides to the extent that she has almost come over the top on occasions. This means that she cannot be left alone while she is awake and in her cot due to the risk of injury and therefore her parents are constantly either having to go up and down stairs to her or get out of their bed during the night.
A normal bed is not an option and neither is sleeping on a mattress on the floor as Jess has no sense of danger and if she was left to crawl around unsupervised then again there is a real safety risk, plus she would be able to get access to her electric feeding pump. The only answer is to get a specialist bed which has sides high enough that even an older child cannot get out. I have added a link below so that you can see the sort of thing I mean:
http://www.bakare.co.uk/solutions/special-needs-beds/tom-special-needs-cot-bed/
These beds also have fully adjustable mattresses so that the right elevation can be achieved safely.
We recently attended a disabled living event and Jess tried out one of these beds which was on display and was quite happy in it. We were assured that funding was available to help purchase one (there is a four figure price tag) all that was needed was a referral from Jessica’s Occupational Therapist.
NOW THE FUN REALLY STARTS…..
At the beginning of the year Jess attended a routine appointment with her paediatric consultant. He was surprised that she did not have a Social Worker or Occupational Therapist in place so he said he would send a letter of referral. To date no contact has been received from this referral.
On the 21st March Jess’s Mum (my Daughter) Emma telephoned the First Response Team advising them that Jess was in imminent danger of falling out of her cot head first, they said they would put her on a list and gave her a reference number. She was told that this would be passed to the Children’s O/T Services for a referral to their local service.
Emma then telephoned the O/T Services on the 2nd April to chase up the referral and was told that the manager for the team had now left. No-one had filled their role for assessing new cases, however they expect this to be done by the senior O/T but they were on holiday until 22nd April and nothing would be done regarding the referral until at least then.
She was then told that after the referral had been done then they would be referred to Disability Services Team and would then be sent out a questionnaire asking about Jessica’s needs, once they had that back they would only then put her on the waiting list for a bed assessment!
Since then after receiving another call from Emma expressing her dissatisfaction (to put it very mildly) they have now decided to bypass the referral to Disability Services and send the questionnaire directly to Emma to fill in and send back. Upon receipt they will then prioritise Jess’s case with either a priority 1 or priority 2 and add her to the waiting list. Priority 1 waiting list is currently a 6-7 months wait.
So all of this just to go on another waiting list to be assessed. Not to mention the fact that the funding for this bed will still have to be organised once the O/T has been out and done the assessment and that the beds are made to order so are not available immediately. At this rate you are looking at either Christmas or into next year and by that time the unthinkable will probably have happened.
If you have a child who does not have such risks then you can just pop along to your local Ikea and come back with a brand new bed. If you have a child at risk and you do not have a few thousand pounds to spare, then you have to wait around twelve months before anything can be done.
Emma has written a strong letter of complaint to the Council and I quote from this
“children are in need of specialised equipment to keep them safe, these are children who cannot speak for themselves don’t forget, not enough is being done. The UK raised £70 million for Children in Need last month, my child is in need, charities are willing to help her but not without this OT assessment. I cannot express enough the stress this is causing our family at the moment. I am sure when people give to charities for disabled children they do not expect this hoop jumping as part of the experience”.
Well said Emma, I am proud of you.
I am NOT proud of a local Council that would rather see a child risk serious injury for the sake of getting someone out to do an assessment which would probably take less than one hour of their time. A council which states on their website
“An Occupational Therapy team is available to work with disabled children and young people to enable them to carry out everyday activities more safely and easily in their home”.
It does not mention that there will be a waiting time of around 6-7 months and longer in some cases. Above that statement is a picture of a smiling young child in their new specially adapted chair – in reality the picture should be that of a child in a hospital bed after just having fallen out of it’s cot..
I am NOT proud of a Government that has parents of disabled children put under the stress of having to fill in endless pages of questions to be able to access the financial support they need.
Part of Mr. Cameron’s Easter Message reads:
“ I am particularly proud to lead a Government that has kept its promise to invest 0.7 per cent of our gross national income on helping the world’s poorest, and I am grateful that we have been able to partner with both Christian and non-Christian charities to relieve suffering overseas.
I hope you have a very happy Easter.”
Well I hope you had a very Happy Easter too Mr. Cameron and whilst I am in no way objecting to helping those who are suffering overseas, I think it is time to take another look at what is going on closer to home.
