Money Saving And Financial Support Resources For Those Parenting A Child With A Disability

We all know that parenting children with disabilities or SEN is more costly for whatever reason!

That’s why I wanted to share some great resources designed to help such families save money and lessen the burden.

Help with the everyday cost of living

If your child is entitled to any benefits such as Disability Living Allowance (DLA) be sure to claim them as your child’s appropriate adult.

Filling out DLA forms can seem a daunting process but there is help out there. Many online sites have developed detailed guides to help you fill in the form to the best of your ability.

Once your child’s DLA application has been approved, fill out a Carers Allowance form (better still do it at the same time as the DLA form) This isn’t a great deal of money but does help to lessen the burden especially if you are caring full time and are not in the position to work.

Save Money On Days Out

Most major theme parks and attractions do offer special rates for those with a disability and their carer. I would suggest visiting your planed attraction online. All will need to have easy access to their policies relating to disability, access and pricing. Most of the large parks also provide special access passes so those who find it difficult to queue can use the rides exist. Note… Each park has its own policies but most will require you to bring a certain amount of identification as well as proof of disability.

Financial Support Towards Days Out & Holiday’s

The Happy Days Charity funds and organises holidays, residential trips, days out and theatre trips for children and young people aged 3 to 17 years with learning difficulties, physical or mental disabilities.

Individuals can apply for help with the cost of days out and theatre trips, while families can apply for funding towards a one week UK family holiday (though a supporting letter from a professional is needed).

Another charity that can provide assistance to families in need of a break are the “Family Holiday Association” who helps disadvantaged children and their families with family UK breaks. Applications must be made by a welfare agent exp… Social worker etc.

Below is a charity who have helped us fund days out to their attractions, such as Lego Land and Chessington. They have done this by providing us with complementary family tickets. Note… there was some talk last year of pending changes to the way the charity processed applications form families of autistic children so you should refer to their website for full details….

Merlin’s Magic Wand is a worldwide charity for children, aiming to provide magical experiences for those who are seriously ill, disabled or disadvantaged.

The charity has been created by the Merlin Entertainments Group, Merlin’s Magic Wand is a UK charitable trust, run by a Board of Trustees. The board manages the funds and makes awards to good causes in the countries in which Merlin operates. Find out who is eligible and how to apply by visiting their website.

Its also worth noting that Scope have a special inclusion service designed to help children and young people with disabilities access leisure activities and facilities within their own communities.

Save Money On Travel Costs.

Earlier in the week I spoke about the disabled persons railcard which enables the card holder and carer upto 30% each of their travel. There is a yearly fee of around £20 but its worth it as you can save a fortune. I also highlighted how those claiming DLA who receive the high care rate and live in london can normally apply for a disabled persons pass (which enables the card holder free travel in london) You should check with the local authority or DWP about accessing this service. Those who receive the mobility part at the higher rate are also entitled to a blue badge which could make parking at hospitals etc a whole lot cheaper and easier. If the person in receipt of the benefit is a minor the child’s carer is able to use the badge on the family car.

Those in receipt of mobility may also be given the option of a car provided for their use by a car dealer on behalf of the DLA. This means a brand new car is provided to the family but the cost is taken from the mobility part of their DLA and they will receive no or very little cash payment (but will have the car for as long as they are in receipt of the benefit with the option of upgrades).

Financial assistance for home improvements and mobility aids.

That Act Foundation gives grants to individuals and charities based in the UK. These grants are designed to enhance the quality of life specifically for those with physical and/or learning disabilities.

Grants can be provided for building (modifications to the home)
Equipment (mobility aids etc…)
Financial assistance towards respite registered breaks.

The local authority/council can provide help and assistance in way of a disabled facilities grant. This is designed to provide financial assistance to enable families to make adaptions to the home as to allow the child with a disability to continue living there. Note: for those under the age of 19 years this is not means tested.

The Variety Club is a really great charity who provide grants and assistance to provide families with vital daily items that often go unconsidered yet cost thousands of pounds every year. These include things like bath mats, toilet seats, car seats and more.

Family Fund Is another fabulous charity that provide families of disabled children grants and vouchers for essential items such as appliances and more. They can even supply families with vouchers towards holidays within the UK and aboard, as well as some of the cost towards driving lessons to make live that little bit more easier.

There are some fantastic charities out there, set up to provide families parenting a child with a disability advice and in some cases financial support. Its just finding them that seems to be the problem for some. Those listed above are just a handful, there are many others available to help and you may be able to find the right service for you by visiting the one of these online directories…
Funder Finder
Living Made Easy For Children

Awards, Flu, Birthdays And Financial Relief

This weeks been a really mixed bag, one of those up and down weeks.

I’ve been feeling a tad crap and it would seem that something’s going about as the Little man has been off school most of the week. Though its not only him… His entire form group and teacher have also been hit with a bug. OK, its not as extreme as I first make it sound! There are only 3-4 children in little mans class so I guess it’s easy to all come down with a sickness bug at the same time.

This means I’ve pretty much had the little guy under my feet all week and what better opportunity to bang on about your birthday! Seriously, I can’t wait for it to be over! I’m losing hair over this.

Little man hasn’t been dealing with the bug all that well. Having a blocked nose causes all kinds of sensory triggers and his been freaking out about not being able to breath and suffocating inside his own head. Needless to say we’ve gone through a hell of a lot of Vicks this past week.

Having children off school sick isn’t meant to be an easy ride. It Just doesn’t help when you have so much to do. Today is the Mad blog Awards and having had a dress disaster I had to do an emergency shop yesterday! As many know, shopping with a child on the autism spectrum (especially for yourself) is never fun nor easy. So, not wanting to spread his virus to my fellow shoppers and obviously wanting to avoid a meltdown I called his father in for babysitting duties. Thankfully, after what felt like hours I found a dress. I now have my outfit from head to toe sorted and enjoyed last nights stress free evening.

I still can’t believe today is the day for the awards. I’ve had little chance to focus on the event… Hence the reason all my organisation skills have been a little delayed. This time last year (that for the record only feels like yesterday) I was dead excited by this point! In all honesty I haven’t had much chance to get this way this year and I’m only just beginning to feel the waves of excitement run through me.

I’m now really looking forward to tonight’s awards. I’m not staying at the hotel this year which feels a little strange. Myself and the children have a date with London Zoo early tomorrow morning. But what I’m really looking forward to most is meeting up with my fellow bloggers. It’s lovely to meet up with those you talk to almost daily via social media. Getting to see some of the bloggers I met at last years awards and other blogging events throughout the year is really exciting within itself.

Other news this week, Little mans DLA renewal has now been processed which means we shouldn’t have any gaps in the payments he receives. He has again been reward the high rate and its not up for renewal for another 5 years so no more form filling (for now anyway). The fact we don’t have to do any type of battle to get him what his entitled to is a huge relief (I feel that we’ve done enough fighting to last me a lifetime)!

So, that’s about it! A week full of illness, fashion dilemmas, awards and financial relief. Here’s hoping that Little man is fit and well this Monday when he will be celebrating his 12th birthday… At last!

DLA and Aspergers Syndrome

It’s been a difficult couple of weeks. I’m tired and moody, everything and anything seems to set me off!

There has been so much on my mind, an overload of worry that I can’t seem to shift. It’s not like I’ve had any less sleep than I usually would! Plus there has been no real big dramas (well, nothing out the ordinary that is)!

However, there is one thing I guess I can blame for my sudden decrease in mood…. The filling out of the DLA (Disability Living Allowance) form. Seriously it’s enough to make the happiest and most energetic of a person, feel depressed and lethargic! It’s a headache… A big fat headache.

I was first faced with this form back in 2008 when my son started attending CAMHS. I wasn’t sure it was right to claim it, but our doctor stated we should as Little Man was more than entitled to the benefit so why leave it to those that wasn’t! I actually cant imagine how we would now manage without it, it makes up a big part of our income.

I remember the thud when the postman shoved it through the letterbox… It hit the floor and the house shook. The form is just outrageously lengthy and anybody else who has ever needed to fill it out will know what I’m talking about! It’s just so barbaric when you have to answer the same question over and over and over again!

We were lucky as we didn’t need to appeal anything, there was no wrong decisions! Our claim went through the system accordingly and it was one battle we didn’t need to fight.

Just like in 2008 I’ve been faced with the stress of having to fill it out again! And how it hasn’t changed much at all.

Little man’s claim is up for renewal and filling out the form is something I’ve tried putting off for months. Not only do you get that classic wrist ache and dead fingers, but it’s very likely that you’ll slowly be driven insane. The frustration as you read out a question only to see that it’s the same as the one you answered 2 questions ago, only its been rephrased and categorised under a different area of care! Some of them questions you’ll need to read over and over again, just to understand it within your own head, because surly they don’t think that your child’s difficulties are that black and white! As a result you find yourself needing to use the space set out at the end of each section. You know the one… “Use this space if you wish to explain why you have given the answers you have within this section… Blah… Blah… Blah!” When your child is on the autism spectrum you find yourself filling out every single one of those boxes. Then there’s the space at the end of the form designated for “Anything else you think we should know?” plus you end up writing an extra two A4 sheets of paper with all that stuff you think they should know! Stuff you think will help your child’s claim success.

There is no possible way you can complete such a form in a day, not if you have a life anyway. You’re this child’s carer and the time required to fill in such a form just isn’t logical. This time round we have the official diagnosis. We’ve been through the statementing process and have seen a whole host of specialist. This therefore means we have acquired a good deal of paperwork, paperwork that the DLA would like you to send in with your form.

I hate paperwork and find myself requesting everything in digital form. I was then stressing at the prospect of having to print it all out to send it to them. Not only would this be disastrous for a good number of trees but would also cost me a small fortune to send. Thankfully they have allowed me to send it to them via email which makes the process much more simplistic.

The hours spent filling in the DLA form were not jolly, they highlight just how difficult life can be for your child which in itself is a difficult reality for any parent to face.

If your filling out the DLA form for the first time, I’d advise that you don’t rush into it. There are many online sites designed to help with the process and you might want to contact the national autistic society for some advice. Their online site has lots of useful information that is designed to help you fill out the form or appeal against a DLA decision.

The Government Benefit Reforms are driving people to suicide

Well, many stood up and stated it would happen. Changes to the benefits system have continued to be introduced and slowly the cracks have began to appear!

Photo credit google images

Was the DWP ready for the consequences when some affected claimants didn’t know how to deal with them changes? Seemingly not!

I was sadden to read the story of how a man had set himself on fire outside a Birmingham benefits office (Job Centre Plus).The man who was reported to have mental health problems was reportedly deemed fit for work despite being seen as vulnerable, therefore sparking a change to his benefits. It’s said that he was unable to deal with such changes (which is also rumoured to have caused a late payment) therefore making him extremely upset leading to him dousing himself in flammable liquid and setting himself ablaze.

The man was taken to hospital with burns to his legs.

This shows the sheer frustration the benefits system can cause to those who have mental health problems, disabilities and medical conditions. The cuts are affecting some of britain’s most vulnerable people and although I believe there are those that claim sickness benefits such as DLA when they shouldn’t I believe the Government are going the completely wrong way about fixing the issue.

This man was just one of many claimants forced to cope with huge overhauls within the system because he suffers from an “invisible” condition therefore giving them the green light to hit him with the back to work stick. It’s quite apparent from his actions that this isn’t a person mentally able to deal with the pressures the workplace may provide. Yes… People make mistakes, but medical assessments should be the best and when someone is very unstable for whatever reason it’s hoped that such professionals are able to pick these things up! After all this is not the first incident and won’t by any means be the last! Earlier this year there was reports of an attempted suicide in a Liverpool benefits office! Yes, these changes are really hitting the wrong people and this could lead to the government actually having blood on their hands.

In the past the Government has claimed that 600 million has been overpaid through the DLA’s current system. They claim that they are not trying to reduce the benefit or the number of people claiming it, but instead trying to reduce the growth rate in the number of claimants. Though since such reports were made we continuously hear about claimants losing out, societies most vulnerable people being encouraged back into the workplace before they are ready.

I recently received Little man’s DLA form. It seems that his current claim will run out come September requiring us to reapply. The letter makes it all seem so bloody easy (you know the type, don’t worry reapply and the benefit will continue as it always has done). Except I know that the system is under pressure to make them cuts and they are looking to save money any how they can. Little man needs his DLA as as much (if not more) than he did back in 2008 when he was first awarded it. The thought of having to fill out the huge form and endure the whole sodding process again, fills me with dread.

If you have been affected or fear you will be affected by cuts to sickness benefits (especially that of DLA) I’d love to hear your thoughts?

The things they say

I’ve talked about Little man’s Literal understand and way of thinking a number of times here on the blog. This way of thinking means Little man tends to come out with some classic lines.

When a teacher told Little man to be co-operative, he stated…“What like the Co-operative food shop?”

“To many this is better known as the Coop”

Yes quite cute, still… if he had been in mainstream, that would have been recorded as sarcasm, documented and even worse, it would have lead to a nasty sanction.

Many of the misunderstanding that occurred during little mans days in his old mainstream primary school were caused by a lack of understanding.

Over and over again I would express the importance of “Not using metaphors when engaging in conversation with my child” yet those that did, continued to do so!

It was only yesterday I came across a report by the ASD outreach team that clearly stated that teachers needed to reframe from the use of ambiguous language when talking to my child.

What really tics me off is when somebody raises their eyebrows, turns to me and states…

“Well, I’m sure he understands what I meant”

A statement I’ve heard far to often!

“No, he bloody well doesn’t! What do you think I’m stating this stuff for, the fun of it? Where I’m standing, its far from fun!”

Recently I had a conversation with a stranger (Gosh, look at me talking to strangers) actually this was an elderly woman sat next to me on the bus who seemed quite pleasant. Well, that was in-till she stated her grandson had been diagnosed as having the

“naughty boy condition!”

Hang on a minute…

“The what… ? Sorry, You’ve lost me!”

She continues and finally goes on to say

“Autism! What a load of old cobblers”

Seriously, at first I remember thinking, ‘What an oldie thing to say” (Yes I know, now who’s being stereotype).

Then I thought, “Wow, another day, another person tanked up with ignorance.”

You see I’ve faced this type of ignorance a number of times and looking at her I knew what was coming next! “It wasn’t around in my day”

I was bang on as this did shortly follow.

“Oh, my own child has the naughty boy disorder”

Needless to say her face glowed an awesome shade of red and we didn’t talk for the remaining ten minute journey time.

I wasn’t angry, I’m past all that! I just pitted her way of thinking!

How can you blame this society for thinking the they do when our national newspapers label disorders such as ADHD and others like it,

‘The naughty child disorder’ that entitles parents and carers to drive around in new cars that are paid for by the DLA.

Do they not release that in order to get a car your child’s condition is likely to be tied to other conditions that affect the child’s mobility! No, I guess not! After all the national newspaper in question only bothered to go by the one statistic, which was the number of claims that relate in some way to ADHD. My guess is these children didn’t all just have a diagnosis of ADHD like many will know it’s a condition that is closely related to autism and many children carry a diagnosis of both.

I’ve seen parents with a child who really could use that car, lets not forget, most of the cost are met by funding it through the money they would usually be given in the form of payments. This money is given to meet the child’s mobility needs, not care, this is a different thing altogether!

Yes, of course there are some driving their pimped out bimmers when yes, the car could go to a much needy family (your always gonna get them people) yet, isn’t this the same as every other benefit? The system is a mess, not just one section of it! All of it!

I wasn’t angry about the article, I don’t let myself get that way anymore, I again pity those that wrote it and pray their child is never born different in anyway (I must state, “NO I DON’T HAVE A CAR PAID BY THE STATE, THAT OF THE TAX PAYERS MONEY, I DON’T HAVE A CAR WHAT SO EVER!” You may have already worked this out what with the above description of my recent bus travels with the elderly, but I just wanted to make that clear!

I believe a great deal of the issues our children face are due to that of others misconceptions. This could be anything from the way they talk, understand or behave in public.

Another bus incident (isn’t surprising given buses are little man’s main focus within his special interest in transport). We got on his favourite bus (the one with the one very high seat with a pane of glass right in front of it). The seat is basically right up their by the driver and little man like’s nothing more than to sit in it, in-order to play the role. Only this one time somebody was actually sat in “his seat” He stood there staring just waiting for the woman (middle aged) to move and let him sit down. When she didn’t he claimed quite polity too,

“Excuse me your in my seat”

she went from a look of disbelief to a giggle when stating

“Listen sunshine, has it got your name on it?”

Now their was a double whammy right there! ‘Sunshine’ & “… has it got your name on it?” was bound to confuss

“My name isn’t Sunshine”

he claimed while giving the chair a once over to see if it had his “Name on it” Of course I was trying to get him to come and sit somewhere else without any bloody luck what so ever!

He actually went as far as asking her to stand up so he could check the cushion for his name.

“Is this kid for real?”

was something she asked aloud!

before mumbling under her breath something that sound like,

“sarcastic little…”

Again she displayed that adorable shade of red all over her face when I annouched that.

“His for real all right! and so is his autism”

We don’t tend to use the word “Aspergers” some don’t seem to have the foggiest idea what I’m banging on about when I do!

So, there you have it! My little dude can say the funniest of things but these can also have a flip side, one that unfortunately leads to the same old thing…

“IGNORANCE”

Related articles

• ADHD, autism may share genetic commonality (cbc.ca)
• New ADHD rules could see kids as young as four on drugs (canada.com)