Hi all - just joined this group, looking for some advice. My son finally received a diagnosis of a complex learning disability this year despite varying issues ongoing since he was very young. The official diagnosis is learning disability based on his documented IQ - he also has mild hearing loss, language processing problems, sensory processing motor coordination and attention difficulties.
Saying that - if you saw him running around playing football his disability would not be obvious but in reality he's very naive and much younger than his actual age. At home we're fine - he's safe and happy here but the older he gets I'm getting more worried about being out and about due to his lack of sense of danger (constantly pulling him down off walls and high places because he loves climbing).
Things were exacerbated this weekend where we were at a family festival - I was on high alert the whole time, worrying that he'd get lost and not be able to find somewhere safe. He also has ear defenders because loud (and some other certain) noises cause him auditory pain.
Long story short - I've never claimed DLA for him because it never occurred to me and because I'm not sure he really needs it. But is there any other way of having a disability formally registered in terms of getting accessibility tickets for events etc?
Thanks in advance!
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zsmith76
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Hello zssmith76 and welcome to the forum. In answer to your query I have just recently applied for an ATG membership which I did have before.You can get tickets to theatres and other events and if you have a disabled person the carer gets in free and you will get a discount.You would need to show proof of disability and in the past I showed his pip form but within last couple of weeks I applied for a Nimbus Access card whichcost £10 but can be like an id card for disability.Also with proof you can access Concessionary bus pass, a key for disabled toilets . DLA can only be claimed for a disability after your disabled person does not reach some milestones in developement.eg for mobility component probably after 5 0r 6 years of age. DLA is now PIP and if you claim PIP it acknowledges Disability in a formal way and can open doors to other benefits. I see you did not mention how old your son was but if he is looking for work and housing etc he can get ESA(employment support allowance) Extra points when searching for social housing for supported living.Help from Social Workers for times when you may need respite or day care facilities..If your son has no road sense and would get lost then he may get extra points on PIP and open the door to a Motability Car etc which can be used for the family if you are appointed driver.A formal diagnosis also helps him to not have to jump through hoops when job centre start pushing him to get a job!! Hope the info gives some enlightment but I have just received an Acees card and also a Cinema Exibiters Card(gets 1 person in free to certain cinemas) and a ne passport because idenification is sometimes an issue.Come back again if you need some more help.
Hi thanks so much for all of this which I will digest! He turned 14 last year and it sounds like he'll definitely need PIP after 16 to help him live independently. Now wish I'd given more thought to this before but the older he gets i just feel like he could do with more help.
Hi. I think with sounds of your sons diagnosis he should be receiving PIP , having to be watched at all times is definitely a criteria . Also you maybe able to claim carers allowance for yourself if your son gets pip . Its worth looking into even though there is a criteria for claiming CA , its not a lot of money but it can register you as a carer even if you are not eligible for the payment, .. there is information on the government website ..
Pip opens doors for other help for him in the future which is the important thing. . Hope this helps a little and your son gets all the help he needs . Good luck .
Hi I would suggest you get help from someone like the Citizens Advice Bureau to help you fill in the PIP application form. Often how you answer the form makes a big difference. Is your sons Iq less than 70? As this seems to be the criteria for help as a recognised learning disability as far as social services is concerned if you apply for a social care budget ( which can be used by you to pay for support for things like holiday clubs etc) You may also want to consider getting an Autism test as a few things you have mentioned points in that direction. My son had difficulties all through school but he didn’t get assessed until he was in his late teens for a formal LD diagnosis and a few years later an Autism diagnosis. I am annoyed with myself for not sorting it earlier but stupidly trusted the system! Your son will need all the support he can when he leaves education so it is good you are getting the ball rolling now. Good luck.
Hi - he's 14 so would be DLA I think? His LD diagnosis was based on an IQ of 59 at his last Ed Psych assessment but that was back I'm 2016. Saw an Ed Psych via school last month who said they don't do IQ any more and because school is supporting they're not doing another report.
He also had a reading age of 8yrs 9m back in Nov (he was 13 at the time) when his IDP was created. Now the school say they don't do that either - it's an average points system.
Either way, we have his official diagnosis. Interestingly the Paed Consultant documented that based on feedback from everyone she doesn't think he is has Autism - diagnosis is LD based on IQ.
That’s for when they’re 18. If someone just receives benefits deputyship isn’t needed for finance (appointeeship is sufficient) and only if the person lacks capacity. My son lacks capacity and is 24, he now lives in a residential care placement. We don’t have deputyship. I’m his appointee and deal with his finances and still make decisions for him .
I would definitely apply for DLA. It can be a long process. He doesn’t have to have a diagnosis at all. If he needs more support than an average child his age that’s what it goes on. Once they turn 16, the process starts to transfer to PIP. A lot of first applications are turned down so you’d then appeal.
There might be some of this you already know about or are involved with so apologies....
First....
I just want to correct something about DLA so you don't go & not claim when infact you could be entitled to it for your son. This then increases your child tax credits as you will then be entitled to the disability element to that too Then you could be entitled to carers allowance, depending on your work situation.DLA or PIP is not about diagnosis - it's also not about not reaching milestones, it's about having a condition or conditions that impact the day to day functioning of a person, where they need more help & support etc than someone or in your case a child of the same age.
It is for physical, behavioural & mental health conditions & you just have to show that your son needs support with either or both personal care & going outdoors.
Eg: getting dressed, going to the toilet, sleep, managing anxiety.
You need to look at your daily life carefully, as what happens is we adjust our lives to help manage, support & care for a child, or the person with the disability themselves makes adjustments but because we do it every day without thinking we often don't realise that we are using aids, techniques, coping mechanisms.
For example - a disabled person might have to check where disabled toilets are before going anywhere out anywhere - after doing that for years it's just a natural thing to do & we forget that it a way of managing a disability. Someone might have to get out of bed always holding onto the bedside table, we do it without thinking we forget or don't realise we are using the bedside table as an aid. We might need to always put a blue light on for our child to go to sleep, we've done it for so many years we forget that's an aid a way of managing a difficulty of getting the child to sleep.
I'd recommend making a call to CAB or your local based charity for people with disabilities & ask about someone to help you fill the form & see what the availability is before ringing DWP, this is to get an idea of when you can get an appointment as often you can be waiting quite a while. You can get extensions the date when you have to return the DLA form, especially if you ring to say I'm booked in to get help on "X" date with "X" organisation.
Begin to gather any supporting evidence now, keep a daily diary if you don't already just to help when you answer the questions (see above about how we can forget about what we actually do each day to support our disabled child or even their difficulties because it's our normal)
Ask school or any other person that is involved if they would write something about their knowledge or experience with your son, for you to support your claim.
When you do get the form one bit of advice I always give people is don't answer on the form, write your answers on a separate sheet & on your form just put "see separate sheet no.1" etc. This then enables you to keep going back to your answers & adding to it, or you might think of better wording to explain something, or you might realise you've added something that you don't need.
Also it will feel like you are repeating yourself a lot on the form, that's ok, some of the questions are a bit vague,and something you answer could be relevant to 2 or 3 of the questions.
I always recommend people add their own statement where it asks "is there anything else you want to tell us" that's the best opportunity to write in your own words what daily life is like, the obstacles you face as a whole but I know many people that haven't done this.
If you apply & are unsuccessful first ask for a MR (mandatory reconsideration) if unsuccessful still appeal.
There are some great Facebook groups that are for people applying for DLA or PIP that can have some great suggestions and advice from people.
Maybe ask at school if they could refer you to early help if they aren't involved, they are only ever involved for a short time & it can be for various reasons. A support worker could help sign post you, refer to agencies, specialists, help might be for your son or for you or the family as a whole.....but also they often have people that work for DWP that they can bring in to help with claiming DLA or PIP.
Look for Facebook pages & groups that are relevant, a great way get information, support or just to chat to others in similar situations to yourself.
Without a DLA or PIP claim you are never "officially" registered disabled - this I find ridiculous I think there should be a way to be on the government records as a person with a disability when not in receipt of DLA or PIP , but there are things for people with disabilities without having this, Look up the access card, check your local council for their criteria for disabled bus pass, look up the CEA card.
Also look up SENDIASS in your area a great organisation.
Does your son have an EHCP? If not you may want to consider applying for this, school should do this but I know many people where schools have fobbed them off with excuses not to apply - but what I've found is many don't realise you can apply for this yourself, you don't need school to do it, it just helps if school does. I applied myself whilst temporary home schooling with the help of SENDIASS.
Sorry that's a really long answer, but in short apply for DLA & if your son doesn't have one already an EHCP too.
Thank you so much for this reply! He does have an IDP in school (independent development plan) which recognises and documents his ALN.
You are so spot on about us providing care that we don't really even recognise. We were away on the weekend with friends with kids of a similar age and the difference in independence was striking. I couldn't let my son wander off for hours, he wouldn't think to drink water and he would be panicked if he couldn't find me. Getting him up in the morning, encouraging him to get dressed/washed are all things my younger son (with no LD) does on his own at 10. I guess I didn't want to make a fuss all these years but I'm not helping myself or him!
Even with your IDP still apply for an EHCP, these themselves open many doors they are a much more in depth support plan around many needs & this is where the laetc & last until they are 25yrs old, so beyond the high school years into college etc - Don't allow school to tell you don't need one because he has an IDP, the EHCP is a legal document that means your LA have a legal obligation to provide the support in the plan.
My daughter is now 17yrs old I still have to guide her through every step of her day, from the moment she gets up, I do our routines that can't be changed without planning ahead with social stories that we put together & go through each day before the change (like when going on holiday or an appointment at the drs) it becomes so normal doesn't it.
Our holidays have to have every day planned, we look up the areas online find pictures, walk through street views, like you say seeing other children the same age going off being independent but ours just can't do that.
Ooh Also if you haven't already, look up the family fund, just incase you are eligible for that too, that's extra help for things like holiday costs, household items, iPads, pcs, sensory equipment....
Thank you! My understanding is that the IDP in Wales is equivalent to an EHCP in England? It also runs to 25, after GCSE years they will bring a panel together to decide where is next best for him. I'll double check!
Ah yes if you are in Wales then it could be, the area I'm in each school has a different name for a strategy that school put into place IDP, IEP, Pupil passports & I've heard it called something different as well...many times I've heard people say "school said my child doesn't need an EHCP because he has X (whatever they name theirs)"It sounds like you are on the right path with school, this will really help support your claim for DLA.
Do you find where you live that people aren't very good at telling you what's available to you, what help you can get, information doesn't come readily?
Here it's terrible, I had to find most things out myself, mostly from other parents rather than the professionals themselves that are meant to support us.
One exception though were my support workers. When I had my first support worker, I didn't even know what it was, I didn't know it was what's called "early help" I didn't understand any of what was happening...what I do know though each time I've needed it, my support workers they have been my absolute life line, they have opened more doors for me than anyone but mainly my scaffolding around me, supporting me when I needed it the most.
Absolutely yes. I've spent years pushing for support in schools, we've been through various hospital departments and finally had his diagnosis this year. Not once did anyone mention DLA or any type of support available outside of school.
Reading all of these messages and our experience over the weekend at a busy family festival has suddenly caused a penny drop moment for me. Suddenly realised how different things are with him compared to kids the same age and how much it affects daily life.
Hi sorry as pointed out DLA for children and PIP for over 16. We started with DLA but later it changed to PIP but that was a few years ago when they first introduced PIP. Whats' in an expression they both are assessed the same. I have filled in forms mostly online but you can send off for a written form but maybe still fill out online. You can see all the questions on a written form before filling out online if you have a computer. Filling online you can keep editing the pages as you go .If you can scour the pages online you may be able to find exactly how much detail to include in each section. Medical guidance for DLA decision makers (child cases): … The last sentence is a gov paper all about what assessors may be looking for when scanning the forms.
Gp ask for Carer's Assessment, this will then get you on the Carer's Register. Ask for Social Worker, they can help define what Support set up/plan, Council can fund certain things Support wise/adaptations also in accommodation. PIP Form filling is quite stressful so seek help, but if you were to apply for Carer's Allowance, please read very carefully, & they take it £ from your Son's PIP & ( if your Pay goes over their criteria of Allowed to Earn, they ask for Every Single Penny Back, which i found out the hard way, monthly can have 5 weeks remember this!!) gather All Proofs for PIP & Get yourself a File to keep, as you will need to keep all safe, ready for the same process every so often & I would Screan Shoot all of the Filled in Forms, to help redoing incase of any Changes, or Same & No Change, then you just state No Change on all pages.They are tough on Forms & always gets to having to Appeal, we had to go further asking for Mandatory & finally got Son's PIP. It's all about How his Daily Living is Affected by his LDifficulties or Disabilities.
You have to think of Worst Days when filling out PIP Forms & don't hold back it Matters.
Hi. I may have misunderstood Mybestfriends post on carers allowance and pip. No money is taken from pip and it is not means tested. If you go over your earnings limit then your carers allowance will be stopped/reclaimed for that period.
When my Son was on ESA & PIP , I claimed Carer's & I was PT Worker local Co op, I earned a Bonus & also went over allowed earnings twice, they have made me pay Every Penny back & still paying it back through Universal Credit. I am still Carer for my adult Son 24/7 . Citizens Advice tried to help, with no luck either. I am disgusted, that I can't Work, can't leave Son for very long at all, since inpatient stay Mental Health, long term illness Schizophrenia & he has Autistic Spectrum, Dyspraxia, Dyslexia, Delayed Processing, he is recovering from traumas caused to him. They should offer Carer's Allowance & not have to ask.
get your son registered with your local council as having a disability. Also call department of works and pensions for P.I.P. Benefit and ask if he’s entitled to E.S.A. If he’s working age sorry I can’t remember what age you said he was but I understand your concerns. Have you also joined carers uk for support for yourself and they can give you lots of advice and support on lots of stuff.
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