Tag Archives: charities

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

22 Oct

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

Compulsory Mediation – Good Idea?

17 Sep

So the draft legislation has been out a few weeks now and one of the biggest changes that has stood out most to me is that of Compulsory Mediation.

As things stand at the moment, A parent can lodge an appeal to the first tier tribunal as soon as the local education authority (LEA) has written to the parent setting out a child’s proposed provision in the form of a draft statement. If the parent doesn’t agree with the provision offered they then have the instant right to appeal. This is done by making an application to the first tier tribunal. In the meantime the parent can request that the LEA meet for Mediation which is conducted by an independent mediator. However, the appeal process is still well underway and most will find that this gives the LEA that much needed kick up the backside.

The draft legislation which has been written to assist the changes in SEN provision in the near future states…

… Mediation: This section applies where a child’s parent or young person intends to appeal to the First-tier Tribunal under section 28 in respect of anything done by a local authority, or the content of an EHC plan maintained by a local authority.
This section does not apply in respect of an appeal concerning only of

(a) the school or other institution named in an EHC plan;

(b) the type of school or other institution specified in an EHC plan;

(c) the fact that an EHC plan does not name a school or other institution.
The childís parent or young person must notify the authority of his or her intention to appeal.

The local authority must then arrange for mediation between it and the parent or young person.

The child’s parent or young person must take part in mediation under this section before making an appeal.

The authority must arrange for the mediation to be conducted by an independent person.

For the purposes of subsection (6), a person is not independent if he or she is employed by a local authority in England.

At the conclusion of the mediation, the mediator must issue a certificate to both the local authority and the parent or young person
(a) setting out what has been agreed by the parties (including any agreed time limits), or

(b) stating that no agreement has been reached.

The parent or young person may make the appeal only if

(a) no agreement has been reached, or
(b) the local authority does not act in accordance with what is set out under subsection (8)(a) before any agreed time limits expire.

Regulations may make provision about mediation under this section, in particular
(a) about giving notice;
(b) imposing time limits;
(c) enabling a local authority to take prescribed steps following the conclusion of the mediation;
(d) about circumstances in which mediation under this section is not necessary;
(e) about the circumstances in which the parties to mediation need not meet face-to-face during the mediation;
(f) about the consequences of failure to take part or properly take part in the mediation;
(g) about who may attend the mediation;
(h) where a childís parent is a party to the mediation, requiring the
mediator to take reasonable steps to ascertain the views of the child;
(i) about the provision of advocacy and other support services for the
parent or young person;
(j) requiring a local authority to pay the other partyís reasonable travel expenses and other expenses of a prescribed description, up to any prescribed limit;
(k) about the training, qualifications and experience of persons who may act as a mediator;
(l) requiring a parent or young person to take prescribed steps when appealing to the First-tier Tribunal under section 28 after mediation;
(m) requiring the First-tier Tribunal not to determine an appeal under section 28 if requirements imposed under this section have not been met.

Appeals which only concern the name of a school, college or other institution specified in the Education, Health and Care Plan or the type of school, college or institution specified in the Plan or the fact that the Plan does not name any school, college or other institution can be made without going to mediation. This is because the parent or young person will already have been able to request a particular school or institution in the further education sector, and had discussions with the local authority about which institution should be named on the Plan. Requiring mediation in these circumstances would involve repeating the same discussions. The clause gives the Secretary of State regulation-making powers concerning mediation as listed in the clause.

So, what does this mean exactly? Basically parents will not only have to agree to mediation but undergo it before lodging an appeal with the tribunal.

This seems somewhat odd to me. There is no mention of tribunal timescales which will need to be adjusted to fit the proposed changes. The only timescales mentioned are those agreed during mediation.

Worryingly, from what I have read this new legislation will only make the appeals process longer than it currently is which in all honest is already far too long! I understand that we need to reduce the number of appeals reaching the tribunal but this should only be due to the fact more children are getting their needs met and therefore no longer require the help of a judicial decision to ensure it happens.

Let’s be honest here! For most parents it’s only the lodging of the appeal that makes the LEA that little bit more active when it comes to communicating with parents! Most parents will request mediation but the majority of LEAs will take forever to respond. I understand that the legislation states the LEA must arrange this but as mentioned there is no mention on just how long they have to do so.

The draft legislation also states that the Mediator must be independent (not work for the LEA)! This is already meant to be the case and most mediators work for independent charities. However, it’s my experience that most parents feel bullied by the LEA even with a mediator present. The majority of SEN case workers come armed with a legal representive for the LEA as well as half the council. Most parents can’t afford to do the same and it’s often the case that only one parent can attend.

It was my understanding that the proposed changes to SEN were being put in place to not only help the child but lower the stresses put on parents. The Government should be confident enough that the proposed changes are enough to reduce the number of cases being brought to tribunal. Compulsory mediation is just another hurdle a parent must overcome before getting their case heard by a tribunal.

Why not state that LEAs and parents must take part in mediation before the case is heard by the tribunal. Stating the parent has to overcome all these hurdles before even lodging an appeal is nothing other than barbaric. It just seems like another way of putting parents off.

I’ve read the entire draft and there are a number of areas that concern me. Nonetheless there is only so much writing I can do tonight!

So, are you a parent of a child with SEN? Have you ever undergone mediation with the LEA? Have you ever take the LEA to the tribunal? What do you think of the proposed legistation in regards to mediation?

Check out the draft legislation here

Why I won’t be sharing my new years resolutions with you!

29 Dec

It’s the 28th December 2011 & in just a few short days we will be at the start of a brand new year!

 Now I’m not about to share all my New Years resolutions  (not that I don’t have any)! Why? Because if there is one thing I’ve learnt over the years, it’s that life is full of unexpected twists and turns, especially when you are a parent of three children, one on the autism spectrum. Do I set myself goals that are hard to achieve? Yes, I properly do, don’t we all? In all honesty, I’d rather kick my own arse privately if I happen to fail on one two of those resolutions.

 I hate reading articles that proceed to tell you what you should be doing! They run off a long list of suggested resolutions one may wish to make. It’s my opinion that new years resolutions don’t spring out from a two page spread, but instead from the gut of the person making them! Resolutions are personal goals you set yourself, which haven’t been decided on lightly, you have to really want to succeed at achieving them, they hold great meaning and would provide the setter great satisfaction if achieved.

 Sadly every single article I’ve read on the subject, whether this is a blog post, parenting website or big name magazine, they all suggest the same old thing! Look at and change the way you eat, quit smoking, lead a healthier lifestyle… Blah- Blah-Bloody-Blah…

 I’m not by no means stating that I’m not going to be working that bit harder to fit comfortably in my skinnies, I’m just stating that surly it’s not always about this, it often stems that little bit deeper than this! Loving yourself that little bit more and gaining confidence should always be the first step.

 Though I have indeed decided to keep my resolutions to oneself (call me a chicken, I don’t care)! I have however decided to share some of my blogging goals for the year of 2012, so if failed we can all laugh together as to be honest failures sometimes make us more eager to succeed and the next time we try, we do it that bit better!

So… here’s a few of those 2012 blogging goals

Relax and enjoy it that bit more, worry less about stats and positions on whatever listings (Top this or Top that) as like many I am a little guilty of doing this.

 Reach out and hopefully provide some hope and support for more families on the autism spectrum, more than I’m already reaching!

 Finish my SEN Know how page, it’s important to me to get this done, I set myself a goal to finish it with the end result being, a number of downloadable fact sheets covering a whole spectrum of subjects relating to special educational needs.

 Expand my love of photography, hopefully expressing myself a bit more through pictures as well as words.

 Create a set of social stories that will be available via the blog.

 Launch my sister blog, which I’ve been working on yet remains unpublished.

 I’ve already done a few video reviews, though I want to expand on this and really get into “Vlogging

 My biggest goal… Use the power of social media and blogging to help charities such as the NAS! I have a fabulous and fun idea in the pipe line that I can’t wait to get out there! I really do hope that the support of fellow mummy bloggers and some fantastic contacts I’ve made over the past 3 years I’ve been blogging can help make this one a reality.

A message for Mr Cameron

14 Feb

Ok, So I had some problems with my auto publisher yesterday and this is a bit later than planed! However I think you will agree it was worth the wait. Colin explains how life is like for him today and back when he was a child. He tells us about his late diagnosis and the effects its had on his life. He even sends out a message for Mr Cameron, stating a few home truths.

Here’s my interview with Colin… A man with Aspergers

Enjoy.

Claire… Hi Colin, firstly let me thank you for taking part in the interview and also a big thanks for your continued support with the facebook page ABWA by way of the great advice and input you give within the page. So my first question to you is…

Would you be so kind to Describe yourself  in five words?

Colin… Obsessive, Stubborn, Shy, Intelligent, Creative

Claire… It’s my understanding that you were diagnosed as being on the spectrum as an adult… If you don’t mind me asking, how old was you when you were diagnosed and what diagnosis was you given?

Colin… I Was diagnosed at age 44, with Aspergers Syndrome

Claire… Can you tell us a bit about how the diagnosed came about? Did you always know you were somewhat “different” to your peers as a child?

Colin… My diagnosis came about through a councillor I was seeing, through talking to me about my past and how I interact socially. He thought I might have aspergers , so then arranged an appointment for me to be assessed to see wether I was or not. as for knowing if I was different or not, yes I did feel different even though I didn’t know exactly what was wrong, I always put it down to shyness and lack of self-confidence and being a little eccentric.

Claire… Wow I’m guessing that the diagnosis was quite a shock then?

Colin… Yes the diagnosis was a shock, even though it confirmed a lot of behavioural patterns that I had put down to something else…  The meltdowns, obsessions, not being able to talk to people etc.

Claire… Has a diagnosis changed anything for you?

Colin… Well if anything the more I know about my condition the more I feel im not in control. I was told that I would either just get on with my life without a hiccup or it would take over my life. Well, its taken over my life, ive let the diagnosis affect me. if that makes any sense.

Claire… That’s a really interesting statement… Do you think in a way you would have been better off not knowing then?

Colin… In my case I would have to say yes, only from my point of view, others might say I havent really changed at all, that the diagnosis has highlighted that it’s a condition not an attitude

Claire… How did family and friends react to the news?

Colin…  My family don’t know about my diagnosis. I havent been in touch with them for six years. I’ve not many friends at all in fact the ones I do call friends live over a hundred miles away but I haven’t seen them in five years, they don’t know! The friends I have online I’ve only told a select few

Claire…” I’m very sorry I didn’t know that you had not spoken to your family for so long and your friends live so far. I’m pleased you have those few people online to be open with (Me included)”

What would you say to the ignorant people who claim our children on the spectrum will grow out of it?

Colin… I would say that my case proves that you don’t grow out of it, as I’ve been told you either have aspergers from birth or you don’t have it at all, well for 44 yrs I wasnt diagnosed but when I was I certainly hadn’t grown out of it from childhood, it just didn’t suddenly appear it’s always been there I just slipped through the net for many years.

Claire… I mean all children with ASD become adults with ASD and sometimes I think people forget this. What do you feel is lacking within the current system in terms of support for adults on the spectrum?

Colin… There is no or little support from the government for adults, cause its taken as read that the diagnosis will be realised early enough to support them at an early age the support seems more geared towards children than adults, we are left to really fend for ourselves. There is a charity drop in center I can go to, but no 24/7 service. Basically I was given a diagnosis and go.

Claire… “I would have to say that this concern is voiced by every adult on the spectrum that I’ve come to know. It would seem the government just ain’t “getting it” either that or they don’t give a S**t!!!”

If I told you Mr David Cameron reads the blog (u never know lol) what would be your message to him?

Colin… We adults deserve support just as much as anyone else! Sweeping us under the carpet don’t help anyone, everyone talks about inclusion but if it cost money or difficult then you can forget it!

Claire… As an adult with AS can I ask you… Do the meltdowns, anxiety and extremely challenging behaviours improve with age, are you better able to control such  meltdowns now?

Colin… In my case the meltdowns still happen, but are less frequent than they used to be. As for controlling them I’m not sure I can control them… All I can say is that they don’t last as long as they did.

Claire… If you could go back in time and do things differently knowing what you know now what would it be?

Colin…  Not sure to be honest, I would have liked to have finished my degree in mechanical engineering, but let things slip. Not sure if that was down to my aspergers or not.

Claire… ” I would say it’s never to late to finish the things you started Colin”

How was your school life growing up?

Colin… I Was bullied at school, was a quiet and shy child who was quite happy to play on my own as well as with others. My obsession with music was noticeable to me at an early age about 10 years old.

Claire… “Oh my goodness I’m now getting an insight into the mind of my own little Aspie! Little man is 10 totally obsessed with buses and nothing has ever come closed till…… Now that is. He is a fan of Bruno Mars has stored a huge amount of info on the guy and after getting his album two days ago has memorised every song lyric for every track on the album. He can’t sing through and can drive me a bit potty with his singing lol”

So a quick change of subject! What do you think of our current educational system given that ASD is much more known today?

Colin… I Can only go from my own experiences, since I left school in 1979, can only say that the educational system is slow to react to things even when highlighted. Bullying is still rife now so what does that say?

Claire… “No Comment Colin”…. You know what I think!

So… Do you have any “special interest” Passions that take hold of you? Are these long-standing or do they change over time. Is music still a big part of your life?

Colin…  Music has always been a big part of my life, I’ve  been collecting music in various formats since I was 13. I’m obsessed with downloading music, writing poetry. All other obsessions come and go.

Claire… When are you happiest?

Colin…  Plugged into my iPod and writing poetry.

Claire… Do you or did you have Sensory processing problems as a child? Have these changed, improved or just been replaced?

Colin… Noise affects me and always has…  Just different levels or situations are more difficult to deal with than others, people eating, dogs yelping, get woken by the slightest noise so my sleep pattern is bad.

Claire… “I’ve always thought that Little mans father is an undiagnosed aspie and his pet hate is hearing others eat. You crunch he freaks out”

So, they say some people with AS have a high pain threshold! Do u? Little man don’t really get ill or catch bugs that often (unlike his younger sister) but he feels pain “big time” (if there’s blood we are in trouble) so, this don’t apply to us lol.

Colin…  Not sure if I have a higher threshold for pain, but I have a high threshold for dealing with low temperatures, don’t seem to feel the cold as deeply as others do.

Claire… “Yep Little man is the same…. No coat in winter and don’t take it off in summer”

Did you have many friends as a child and do you now?

Colin…  None, that’s my problem I don’t seem to be able to keep friends. People come into my life and then I let them fade away.

Claire… How do you find social situations?

Colin…  Still difficult, even with people I know.

Claire… What subjects did you excel in at school and what ones never made sense?

Colin… Technical Drawing and Maths.

Claire… Interesting… Can I ask is it mental math that your good at? Just that little man is ace at mental math ( better than me) and other parents have reported the same.

Colin…  Yes mental maths… I used to go to the shops at age 5 for my mother and was always able to count and know it was the right change I was getting for the items I was getting. still don’t use a calculator much in daily life.

Claire… It’s said by some that those with AS lack empathy! What do you say?

Colin… Maybe we lack social skills, but we are loving we just don’t know how to express things well, as for myself I express my self better in my poems than actually speaking etc

Claire… What advice would you give to an adult reading this that suspects they are on the spectrum? Is it to late for a diagnosis, is it really needed?

Colin… It really depends on his or her situation, whether it is affecting work and home life never too late for diagnosis.

Claire… What advice would you give to a child/teen that is struggling to come to terms with their diagnosis seeing themselves as someone who is  “abnormal” with very low self-esteem?

Colin… We are normal, we just look at the world in black and white rather than shades of gray, we can be too trusting. but as people we are no different from what is described as normal! We want to be loved, laugh, etc

Claire… “I just showed this to little man and he said thank you… He likes that!”

Colin… Tell little man I said thank you, us Aspies stick together.

Claire… What advice would you give to parents like me raising a child on the spectrum?

Colin… It will be hard, but if you keep giving your love and support as much as you can, the rewards will come, you will see your child grow into adulthood… I’m not saying with less problems but with more understanding and maybe more control.

Claire… Finally, I’m a big fan of your beautiful poems… I’m wondering if you could write one for us to sum up how life on the spectrum is for you. This would be a great ending to our interview.

I am seen but not seen

They see the book cover

Not the story inside

I breath, I bleed, I think

But I am not part of the crowd

My world is black and white

I can not understand

Subtle shades of grey

Warm bloodied

I am still bereft of love

For emotions are hard to fathom

What is easy for most

I find a mountain to climb

Do not pity me or scorn me

Do not hate me or ridicule me

Born from the womb

I am of flesh and blood

I am human too

By Colin Weir

That was fantastic Colin 🙂 Thanks again for giving us all an insight into the mind of a man with Aspergers.

Please feel free to leave your messages for Colin and I will see he gets them. If anyone would like to contact Colin you can friend request him on Facebook. Let me know and I will be sure to pass you the link.


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