Carer’s Allowance – UK versus NZ

In the UK, if you care for over 35 hours a week for a child or an adult who receives a disability benefit you are entitled to claim Carer’s Allowance of £66.15 a week.  If you earn over £123 a week, then you may not be eligible or you may be taxed on the allowance.

If two of you i.e. parents care for the same person for over 35 hours a week each, then only one of you can claim the benefit. Similiarly, I have four boys, all eligible for disability benefits but I can only claim one carer’s allowance despite looking after all four of them for over 35 hours a week each.

£66.15 a week divided by four boys on an hourly rate? Is that what I am actually worth?

How much is the state saving in caring costs by expecting family members to do most of the care for their relatives for pennies per hour?  Many of whom who are unable to work because they are caring for a family member full time?

My older boys used to get eight hours a week direct payments for carers to take them out. The social worker on her annual visit last year cut that to six hours. When I said that I didn’t feel bad about claiming eight hours as it would cost much more if they were to live fully supported within the community ie no longer at home, she said that some living  in community housing only get six hours too. But how much does their accommodation , admin and wrap around care cost? A lot more than eight hours does – actually only six now.

There was an article in the NZ (New Zealand) Herald in July which seems to have come under a low radar in this country. By which I mean, I have seen absolutely no mention of it anywhere. Why is this?

NZ are bringing in changes which mean that family members looking after spouses or children under 18 will be paid as carers. Paid a living wage.

From an article in the NZ Herald – 7 July 2019

Family carers are welcoming a Government announcement to pay partners and spouses who look after ill family members up to $25.50 an hour. People will be able to be paid for care they are already providing … [and] not be struggling financially to provide care that the state would have paid if it had been someone other than a family member.

He said his family had the fortune of having income, but today’s announcement would be especially beneficial for those who had given up incomes to look after spouses or children under 18.

We would never do it, but can you imagine if every parent in this country announced on the same day that they could no longer look after their child at home and that the state would have to pay for and provide all the care those children need?

How much would that care cost? A damn sight more than £66.15 per child a week.

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Is Autism no longer a disability?

Is this what the word autism has become? A word only to describe those who feel they have a difference, a super power, a gift? Certainly not a disability as many of us know autism to be.

On July 27 on Twitter, Chris Packham, NAS (National Autism Society) Ambassador posted this tweet.

‘This man is calling us disabled . It’s an abominable insult beyond any comprehension . . . we must not tolerate this division when we are striving to implement a wider understanding and awareness of autism’

Does a ‘wider understanding’ only include those like himself who was diagnosed as an adult in 2005?

Do those, like my boys, diagnosed before the age of three with classic childhood autism, no longer have a disability? Does the word autism no longer hold any real meaning for those with the type of autism which affects every minute of every day of their lives and impacts on those around them too?

If not disability, what word should we use?

How can a child with no effective form of communication or ability to cope in mainstream life not be disabled by their autism? We can’t sugar coat autism. For many children, autism is a real disability. There is no other word.

It is not an insult to call them disabled. We need that word. My boys were eligible for many things including claiming DLA (disability living allowance). That word, disability is still a word we need to use to enable them to get the support they need. Some people may be uncomfortable using it but that doesn’t mean they speak for everyone else.

Is this now the public perception of autism? That it is no longer a disability?

 

(My lovely boy Thomas, 20, needing help to thread his race tag onto his shoelaces last Friday)IMG_6772

How can you do ABA with a two year old?

This week we had an overnight visit from a very special lady, Esther, who was one of Marcus’ first ABA tutors when he was just two and newly diagnosed with autism. It was her first formal job in ABA too but she had been caring for all our boys for a few years by then, so it wasn’t actually new to her. She just got an official role and some decent training, from other professionals, not just from me.

People want to know. What is ABA (applied behaviour analysis)? What do you do with a two year old? Do you make them sit at a table and do drills? Do you force them to be compliant?

No, of course not. Why would anyone want to do that to a two year old or any child for that matter?

We did a SCERTS/VB sort of ABA. We did actually what Marcus needed, not what a manual told us to do. We probably incorporated some II (intensive interaction) too and some sensory integration and a great deal of good parenting into the mix.

ABA is not something that people walk into your house and ‘do’ for a few hours at a time. For us, it’s part of how we parent in many ways. It would not have worked so successsfully with my boys if we hadn’t been consistent with everyone including us parents and any carers sticking to some basic concepts.

Concepts like giving simple, straightforward directions. That may have meant a single instruction like ‘do you want to go on the swing?’ with strong emphasis on the word ‘swing’ as that might be the only word they understand.  Once they were verbal, they might then repeat ‘swing’ back to you but before they were, it might mean repeating the phrase and taking them out to the swing in the garden multiple times until they grasped the actual word ‘swing’ correlated with the object itself.  Of course, the word swing is also a verb which had to be taught much later as a different concept. How confusing the English language must seem to our children at times.

Everything we taught at the age of two was taught through play. Oh, playmobil, you don’t realise how useful you were. Playmobil for those that may not be familiar with it, is small people play. Little figures who have different outfits and hats and sometimes even professions like firemen. Firemen were very popular in our house along with a fire engine too. The boys learnt to make a ‘nee naw’ noise before they could say fireman.

We taught in, out, on and under with little people. All through games and play. ‘Let’s put the fireman in the fire engine’. ‘Let’s hide the fireman under the table’.

We used our own home made PECS (picture exchange). We had photos of things that Marcus might want.  A blue cup for Ribena. A packet of crisps. Just a few to begin with until he grasped the idea that if he needed a drink but could not yet ask for one, he could hand a photo of his cup to the nearest adult who would then get him a drink.

I can’t imagine how frustrating it must be for a child not to have any method of communication. How wonderful it must be for them when they realise they can hand over a photo to get what they need.

We even had to teach all our boys how to point. Pointing is a very early skill that most children learn at about a year. I wrote recently about seeing Prince Louis on the balcony at a fly past pointing beautifully. That was the first thing I noticed in that picture, his pointing. It was something we didn’t notice our boys could not do until they were diagnosed at nearly three.

We pointed exaggeratedly at everything once we knew. So when teaching swing, we would also point repeatedly at the swing. Once they grasped that concept, a whole new communication sytem for them to use was established.

Much of what we did sounds pretty basic but it needs an expert to show you and to show your child how to learn. ABA therapists and consultants have so much experience. If one method of teaching doesn’t work, they just suggest another until you find what works best for your child.

For some children, signing is a option. My boys were able to learn single words and then combined words. We didn’t need to teach them to sign but we would have done if they had no other method of communication.

I could write pages and pages about how we taught our boys basic skills through ABA programmes.  I have written much about it in my next book.

I will always praise the tutors and the methodology of ABA. It is not child abuse as some on twitter would have you believe.

It is why my boys all now have life expectations of careers and hobbies and things we would never have dared dream for them. To hear my 20 yr old son singing alone on a stage with just his guitar, maybe even a song he composed himself and to remember a three year old with absolutely no language, no method of communication at all just doesn’t seem possible.

But it is his life now and echoes the lives of my four boys who all did full time ABA programmes from the ages of two or just three.

If you are thinking about doing ABA, please don’t listen to the negatives which mostly come from those who have never experienced it themselves, talk to people like me who have living proof in our children of how life changing it can be.

dav

How we changed our four boys’ futures

What are the chances of having all four children with the same severe form of autism? We don’t know exactly, but we are a pretty unique family.

We have four boys who were all diagnosed by the age of three with autism, the non- verbal, no- eye contact kind. The kind of autism which totally changes the life you expected your children to have.

I am often asked what has had the most impact on the amazing progress my boys – Thomas and Benjamin are now 20, Hector (17) and Marcus (10) – have made over the years. From non verbal at three to the young people they are today, enjoying their lives, talking, mixing in society and able to do what we never imagined possible all those years ago.

Most vitally, we never accepted that they wouldn’t progress and we have spent the past 17 years doing everything possible to ensure that we maximised their potential in life. One major factor was doing ABA (Applied Behaviour Analysis) 35 hrs a week from age three alongside mainstream inclusion at a wonderful local primary school. The programme is individualised to each child and covers communication (in our case teaching our boys to speak one word at a time), addressing negative behaviours of which we had many in the early days, play skills, social skills and everyday living. Everything, in fact, that a non autistic child would learn naturally. With autism, that learning needs careful and intensive therapy on a 1:1 basis by trained tutors to ensure that it happens.

In addition, we have always included our boys in mainstream life. We started with outings to autism friendly cinema showings and still attend autism friendly theatre performances. Slowly we introduced the boys to noisy, highly stimulating sensory environments and these days they can go anywhere happily.

I think the key is to never give up hope of improvement, the older boys at 20 are still learning new language. We are all capable of learning new skills all our lives and it’s just the same with autism. Our children are capable of so much more than is often predicted for them and how they will be in the future. Our boys are as determined as we are to make the most of their lives. We now have a seriously fast runner and artist, a drummer and musician and a keen film maker/photographer/artist on our hands. Our youngest is also doing well but we don’t yet know where his talents lie. They are not being defined by their autism and while their language limitations preclude them from taking most GCSEs, we and they work hard to ensure that they succeed at the things that they can do.

I have had a book published compiling my years of experience to offer practical help and emotional support to parents in a similar situation, as well as explaining how and where to find further assistance. I believe that we can do so much to help children with autism and that no one should put any limits on them. My hope is that my book will offer some insight to others in the community who don’t know much about autism and perhaps dispel some myths around it.

So, if you see us out and about in Richmond Park, the family with four big noisy, very active boys making a statement wherever we go, don’t feel sorry for us, we are enjoying our lives to the fullest.

A Parent’s Guide to Coping with Autism – published by Hale and available in Waterstones or can be ordered into any bookshop and online at Amazon and other online retailers.

(As printed in the Summer 2019 edition of The TW Magazine)IMG_6735

In praise of Lego

Is a love of building with Lego bricks common among those on the autistic spectrum? It is certainly universally played with in our household.

In the same way that everyone with autism is different, the way in which my boys play with Lego is different from each other and always has been.

We started with the toddler sized bricks. Would you believe it? Yes, Lego used to make Thomas the Tank Engine sets with train tracks, so of course, we have a big box of that.  Marcus, just turned 11, still likes to play with the big pieces sometimes.

As soon as the boys were able to manipulate the smaller bits that are the usual size, we moved them onto that.

Thomas, the artist and runner, used to make elaborate scenes with all the figures, most notably the 2012 London Olympics and football matches.

Benjamin, the train lover, has a huge collection of Star Wars Lego and of course, battery operated trains with train track and buildings. Last Christmas he got the new Harry Potter train. He used to carry a little drawstring bag around with him containing tiny little odd bits of Lego with which he used to invent amazing minute, detailed robots and transformers, just cms high.

Hector has a collection of all the Simpson figures. The hours spent trying to ‘feel’ which characters were hidden inside each little sachet amused us for many months. One year, I successfully guessed in a supermarket which sachet contained a much desired Father Christmas mini figure and was then expected to work miracles with every other desired character.

Marcus likes to build from kits and follow the instructions. He loves new sets to open, he has expensive taste in that way.  But, if I can engage his older brother to play with him, they will construct models from scratch together, from all the boxes and boxes of random pieces. One joint favourite is building a model of The Titanic, one of Thomas’ earlier consuming passions.

We also did Lego Therapy as the boys grew older. It’s actually quite hard to do. Each person is assigned a role – engineer, builder, supplier or director and has to cooperate and follow instructions from another.  Only one person can see the instructions and has to describe which piece is needed next. They then need to explain where to place it on the model. It really tests verbal skills when trying to explain something but also tests listening skills for the person who needs to understand the instruction. Everyone takes it in turn to change roles but inevitably, some roles are harder than others.

And of course, there is Legoland. One of our most favourite places ever. We have been going for so many years that I am sure if you blindfolded any of the boys or even me and asked us how to get to a named ride, we would get there.

I can’t think of another toy that has provided us with so many hours of pleasure and creativity and continues to do so.  It is a welcome diversion from computer games, it’s portable, it’s virtually unbreakable and it offers so much in the way of learning skills and communication in so many ways.

Marcus and Thomas playing Lego – note Lego models on the shelves behind too.

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