My blog from 21st November about entitlement part 2
As you all know it’s not as easy as applying for things your special needs child may be entitled too, the systems over stretched and if you can get to someone that will actually read your application( all of it and in between the lines) and you get lucky if you are entitled you are granted , perhaps not as much as you thought and mostly due to the number of claims for things such as
Disability living allowance (DLA)
carers allowance
Disability badge
personal transport budget
Direct payments
Grants for equipment
Budgets mostly granted at appeal stage leaving parents frustrated, And having to prove there own child’s diagnosis and right to entitlement for a chunk of government money ,allocated for children with additional needs, this ranges from Educational budgets through to health , when it comes to claiming anything personal the parents or carers of the child would be expected to complete lengthy forms, go to assessment and these processes are lengthy , my experiences so far ,are it’s tiring and degrading , when will the system change ? Most application processes are repeatative and will be dealt with at a main office at the other end of the country by someone who will never meet you or your child .
which leads me to this, with rising numbers of people being diagnosed due to early intervention , why is this information not being monitored ? Example , when my son started school we applied for his EHC there were three times the amount of SEN school admissions that year , yet it lead to huge delays! Causing stress , why? Someone had diagnosed those children across the UK ,so why isn’t there a database , someone knew the tsunami was coming yet had only prepared for a predicted number based on the previous year!leaving many children and parents not knowing which provision they were attending weeks before the start date.
I really feel if the system was to be reviewed they would find the monitory of claimants that falsely claim or overly claim ,and be able to evenly and fairly distribute the funds where they should be going, there’s huge stigma and belief around disability payments and claimants usually, made by people who clearly haven’t claimed as if they had they would know how hard it is to get these payments and entiltlements even if you really do fit the criteria it’s viewed in the same category as benefit fraud of the 1980s/90s were people claimed for unemplymemt but still went to work , this isn’t the case at all and isn’t benefits!
I personally have no concerns with lining up and justifying mine for my son , and I’m pretty sure most parents would be welcoming to the clarity of a big mess in all honesty , most backlogs are caused by lack of information sharing and if the initial processes were more transparent and not a simple application as they know there going to say no ,you then appeal they then might say no a second time, then you tool up submit reports, they then once backed into a corner back down, sometimes things actually escalate to court proceedings! imagine having to go in front of a judge to fight for what your child needs!
Every SEN parent on the planet is without surprise extremely busy ,and exhausted so why subject them to that , but not only that it cant save money for the local authorities that they clearly need ,especially when ,if it’s undeniable, and then granted after a fight to get there it’s taken far more people and far more man hours! It baffles me .
Recently my son has been refused a personal transport budget , I felt group transport wasn’t enough to meet his unpredictable behaviours and absences ,as Oscar goes to a special needs school a small amount of the funding is set aside for travel, this is then provided and if that suits your child happy days , but it doesn’t suit all children, based on need and in my case it would be the end of my happy child skipping to school , group transport would not set him up for the best chance of attending the whole day at school, which he currently does, simply because he’s so affected by others and the world , but not only that I need to ensure he has taken his medication and eaten before he goes in and update his teacher of any abscence , so I applied for the personal budget meaning I can take him and recieve a small amount towards that it was refused on the basis it’s not cost affective, irrespective of his high needs , so I appealed and directly asked them what about care affective? I wasn’t playing footsie, I supplied at the first no a report from his private OT , a report from his speech therapist , a school behaviour log and an abscence record sheet and a lengthy report of my struggles regarding food , medication, how difficult the mornings are, behaviour in the car and asked them to reconsider , now this level of reply from myself would normally be pre court appeal after months of back and forth ,but I figured if were going to end up there, then I would go there straight away, and this week I got an email to say after consideration of the information supplied if Oscar went by taxi he would need a solo taxi, with two adults therefore me taking him with a personal budget-has now become the best option for them , so there we have it results .
I would say follow my lead here, if you have been refused and are appealing go straight in ,give those people who do not know you or your child the clearest picture you can from your view ,but also any professionals who work with you and get back up then request again , it is likely to have more impact and save everyone a lot of time .
It’s hard when you have to apply for services or additional help or what your child is entitled too, as your emotionally feeling like your doing something wrong, as the diagnosis is questioned and you feel your justifying it you then question yourself! Don’t, don’t do that ,reserve the right not to be answerable for your child’s diagnosis , your asking for help yes but there allocated it from the government it isn’t there money , it is there budget yes, but it isn’t there money, if you are legally entitled to it you have to tool up to get what your child is entitled too to help you care for them ,the payments are for all aspects of their care and learning and it is solely up to you , how you distribute that , never doubt the need for it , Ive heard a lot of parents who give up at the first no and the child goes without a service they require , simply because the local authority are not clear enough about help available or support in how to apply , somethings gone wrong somewhere ! If you feel your child can benefit or you as the carer , then you do and you apply and battle for it , as in my view local authorities initial responses are usually to say no .
Never doubt yourself and your intuition about needs
remain positive always
