Open Letter To DWP From SEN Parents

Dear DWP,

I wanted to write this in the hope that you may review your processes when dealing with SEN parents.

Grab a coffee and get comfortable because I have a few things I wish to share with you…

My name is Donna Jackson, I am a parent to Frankie and Riley. Frankie has Down Syndrome and Autism, and also Robertsonian Translocation. We’ve been in receipt of DLA since Frankie was about 6 months old maybe a little older (forgive me for not being able to tell you exact dates).

I am very grateful to our Disability System and would never fight for something I didn’t feel my daughter was entitled to. But it seems the staff at DWP would disagree.

In August 2018 I completed our forms for renewal, at the time my daughter was in receipt of High Rate Care (HRC) and High Rate Mobility (HRM). When she was reassessed her needs had clearly (in your eyes) improved as she was awarded HRC but placed on Low Rate Mobility.

Here is where I begin to get upset, my daughter is 5 years and 3 months old, she remains non-verbal, she is unable to carry out the basic tasks of a typical 5 year old (like feeding herself or getting herself dressed). Also she can barely walk more than 10-20 steps unaided/safely. She has no concept of danger and can’t indicate when she is in pain. She has hypotonia and frequently suffers from dislocated hips. As a Registered General Nurse I know better than most my daughter’s health needs are not that of a “typical” 5 year old.

I have come to terms with the fact that my daughter may never speak, she may never be continent, she may never independently feed herself, she may never be able to run in her school sports day… I am absolutely fine with that.

She has Down Syndrome and Autism, they will never go away. They will be her “labels” for life, you can’t “cure” these, and believe me when I say I wouldn’t want you to. In my eyes my daughter is my vision of PERFECTION, I understand society may not agree but I do, as do my family and friends.

It’s a very hard task for parents to have to complete DLA forms as you are asking us to write out everything our children CAN NOT DO, you may not realise but for some that is heartbreaking. When I have to write that my daughter can not even say ‘Mum’, it’s a killer, but I fill your forms in (every two years) and tell you all the “CAN’T DO’S” you wish to know about. These forms can at times take hours/days/weeks/months for us to complete, or even pluck up the courage to start. But we do them, because like me, they know the needs of their children and they know what our government say our children are entitled too. We don’t take the piss and we certainly don’t exaggerate our children’s conditions. They are what they are, and yet you disagree and take away support that our children NEED.

So we apply for ‘Mandatory Reconsideration’ (October 2018), where we then have to elaborate on our children’s CAN’T DO’S, this results in more stress/heartbreak and aside from the emotional aspect, you take us away from our children, those that need our time/support. Some of us are lucky to have support of spouses/family, some of us don’t, so we rely on our children going to bed/school and managing this gruelling task AGAIN. We ask for help of our HCP’s and take them away from their day jobs also.

You then “reconsider the decision”, in our case it took all of one day for you to read through ALL our paperwork/HCP statements etc and you say “NO” again. So we lose the support whilst we await Tribunal (if we are strong enough to face that), many parents give up. Many parents settle on what you state you will award, they are drained, emotionally and physically (please remember they are also caring for children extra dependant on them whilst fighting you).

For those heading to Tribunal, we then wait…

And wait…

And wait… 35 weeks is the average wait to get to Tribunal!!! All that time our children are without certain provisions that YOU have stated they do not need.

Two days ago I attended Tribunal, I sat in front of a Judge and a panel and explained my daughter and her life, her day to day journey.

It took approximately 20 minutes explaining our case to the Doctor before we were asked to step outside, I was called back within 15 minutes and the panel explained that Frankie WAS most definitely entitled to HRM, I broke down in tears. NINE MONTHS LATER…. AND FINALLY someone had actually listened, not just that they could call out facts about Frankie without looking through her notes, reassuring me they had actually read what I had sent in. They also awarded us for FIVE YEARS, at last I get a break from that paperwork for five years instead of every two.

What I am asking you DWP is to review your process of assessment!!

I can not bear to think how much of our governments money has been spent on our case alone. I sure as hell know we are not alone. Maybe you hope we will give up, but let me tell you this, a BIG percentage of us won’t…!! These are our babies and we will fight for what we know they are entitled to until we are dead on our feet, before we allow STRANGERS to tell us about our own.

Instead of all this paperwork (god knows how many trees have gone in to our case), meet with us and our children, assess them with your own eyes and talk to us… The parents… We know our children better than ANYONE! You will also be able to assess for yourselves if we are “genuine enough” for you.

You are slowly battering us parents… I would put money on the fact that if the process for DLA continues like this you will certainly end up with parents suffering from exhaustion/depression/anxiety I sure as hell know!! That then puts more pressure on our NHS, our GP’s.

What you don’t understand is YOU ARE NOT OUR ONLY BATTLE, we battle everyday for our children… WE ARE EXHAUSTED!! We need your support not to be beaten down by the system.

Help us by letting us help you…

Yours sincerely,
Donna Jackson

Note to all parents… It’s a bloody hard task… But you know best… Don’t give up!

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