The constant fight for what my child is entitled too
It’s no myth that services for disability’s are sparse, you have to prove entiltlement for them and to keep them, plus for most parents you have to do your own research as to what these entitlements are , if your lucky enough to have a support worker you may get some help with form filling , but the claim forms you fill out are usually dealt with by a central office read and assessed by someone who will never meet your child , meaning you are very reliant on conveying yourself on paper as best you can in hope to be offered that help whether that’s for DLA, blue badge, Carers allowance, Direct payments or PTB( personal transport budget) so it will be a standard form with little advise how to complete and usually the waiting time for an answer is huge .
personally I had an amazing support worker April who helped me so much this isn’t the case for everybody .
im going to blog a bit about my experience of this and the changes I have noticed in the last year or so , it’s extremley worrying to think, need and budget could even be constructed into the same sentence , considering we are talking about the needs of the county’s most vulnerable .
until a year or so ago when I started to network with other parents of children with disabilities I used to feel very well supported and whatever I needed , advise wise and help wise and if anyone got on there soap box and was moaning I would say , I’m actually really happy with what I’m getting support wise , little was I to know that actually , at the biggest hurdles I would start to feel less supported here’s why
Oscar is medicated for extreme anxiety he relies on daily medication to function at a calmer level , even with it he can be oppositional and it makes daily living really tough , won’t get dressed , fights you to do everything and screams all day , he’s overloaded , he can’t cope he self harms it’s actually dabilitating and the situation is just really dire for everyone , he isn’t having any positive experiences his anxiety is a barrier for him and it’s actually not possible to go anywhere as it’s unsafe , Oscar has taken this medication for two years things have been so much better, he is calmer, he is attending school ,he is happy , every three months or so we run out I get to the last bottle then I call to order more , so this week we get to our final bottle which lasts around a week I make the call the order is taken , I’m aware December is comming and Oscar really struggles ,Christmas really heightens his anxiety , the order is taken in the usual manner , then a few hours later I receive a call from his consultant( new) telling me I’m not due to order more until the 14 Dec meaning we will have almost two weeks without any which will be catastrophic , December is busy for us I need him to function attend school ect so that’s it no understanding for the situation I’m in ,or how detrimental that will be , im told that the medication is expensive and I can’t have it , now I do understand however they are the ones who raised his dose, yet didn’t amend the prescription , now for a mum of three to now have the worry that I know what’s coming, I must prepare myself and finish my Christmas jobs before I run out as I know for those two weeks or at least one full week, my son will be riddled with anxiety is awful, I go back to the old days we’re we are on basic function, and to add insult it’s at the time of year he finds hardest !
Now I understand services are stretched and the minority’s manipulate the system, but they shouldn’t be paving the way for those that don’t ! We rely on that medication for our sons well being, it’s awful to think he’s so over whelmed by the world he headbangs and screams all day, and I think to myself something’s gone wrong with the system there should never be question over medication needed , if it’s prescribed and there’s a shortage, to be told it’s expensive just makes a little bit of me die inside , it’s a shock to me that anyone can actually agree with that! And that is why it’s made harder by the system and you continuously fight for what is your right your human right and what is actually humanely right!
Another battle I have faced since oscars started special needs school is his PTB with his school the government fund a transport allowance so this can be used to fund group transport which is clearly the most cost affective , or it can go towards additional funds for you if you drive your child this would be in the most exceptional circumstances , Oscar is driven to school each day by myself it’s half an hour each way twice a day, his entiltlment as part of his school funding is for the transport ,there are many reasons why I’m not willing for Oscar to travel on group transport
5 years old never really left me before, the school day is long he’s adjusting , school bus adds an hour on morning and night, Oscar fights to get in and out of the car seat, Oscar will run away if you take eyes off him even for a second , he will run into the road, Oscar pinches people who sit next to him, Oscar doesn’t like people too close, Oscar undoes his belt, Oscar will headbang the entire journey , Oscar is noise sensitive , Oscar doesn’t like people getting out the car , the car stopping or reversing, I have to stop multiple times while driving as Oscar isn’t great in the car , Oscar MUST have his medication in the mornings and eat so I need him calm to begin the day at his best , oscars abscences have increased since he started school , if Oscar was to travel on the bus the day would most likely have gone wrong before it had begun this is setting him up to fail to save money!
so there are multiple reasons why I applied for the PTB ,however it has been declined the answer was not cost effective! So I have appealed this and asked what about care affective? Do they not care that my son has a good start to his day? The answer is no they can’t afford to care! And that my friends is where they have gone wrong .
So there’s another thing to fight for now ,and I have noticed more and more others are too and I wonder if this could get worse, it also makes me really worried about his future as if they can be ruthless while he is an infant , what will happen to him when he’s referred to adult services! And what if I’m not here to fight for him !
A parent should never ever have to go to a high court against a local authority to fight for their child’s right to special education if the assessment has taken place , with diagnosis yet the local authority are making decisions based on how disabled children are? It’s absurd and it’s all funding based it’s going to hit a wall at some point , it’s an impersonal system , EHC assessments are soul destroying they are necessary ,however they take 20 weeks and usually run over ours took 35 weeks! and they concentrate on everything your child can not do! So your pretty empty by the end of the process yet then some are faced with a fight!
so if anyone asks me again about support I might be giving an entirely different answer to previous things are changing and it worry’s me !
truth is I’m my sons voice you are your child’s voice and we need to be loud .
Heres an insight into what SEN parents and care givers face
To be continued .......