Seconds out….round 1!

We received the news on Friday afternoon that the panel have rejected our carefully put together proposal for Zach.

It isn’t good news but was apparently to be expected. The panel who decide on who gets what regards social care packages felt that Zach should still be in education (despite delivering valuable education programmes Beam are a care provider as opposed to education). Imagine someone else making the decision for your 18 year old that they should or should not still be in an unsuitable educational establishment…..what happened to human rights?

In this case social services want Zach to be financed by education even if what is available is unsuitable or a residential college. I have never considered a residential placement for Zach, he loves John and I, and we love him. Although life isn’t easy by any stretch of the imagination we are a family and a unit and I firmly believe we know Zach best and what will work for him.

From a financial point a view, the kind of residential placement suitable for some one with autism and the complex needs which Zach has, would cost at least double what we are asking for. This is for him to be educated close to home and a community that knows him and he is familiar with.

So, I will be meeting with Belinda Blank who is a marvellous advocate for people with autism and learning disabilities this coming week. She will be speaking to a specialist solicitor for as, we are always prepared to go BIG! We will plan our next steps.

There is new government legislation called ‘Transforming Care’

The Transforming Care programme is focusing on addressing long-standing issues to ensure sustainable change that will see:

  • more choice for people and their families, and more say in their care;
  • providing more care in the community, with personalised support provided by multi-disciplinary health and care teams ;
  • more innovative services to give people a range of care options, with personal budgets, so that care meets individuals’ needs;
  • providing early more intensive support for those who need it, so that people can stay in the community, close to home;
  • but for those that do need in-patient care, ensuring it is only for as long as they need it.

Led jointly by NHS England, the Association of Adult Social Services (ADASS), the Care Quality Commission (CQC), Local Government Association (LGA), Health Education England (HEE) and the Department of Health (DH), the Transforming Care programme focuses on the five key areas of:

  1. empowering individuals
  2. right care, right place
  3. workforce
  4. regulation
  5. data

Transforming care is about joined up care and communication between Health and Social Services and Hertfordshire is one of the counties chosen to fast track the programme.

Nobody from health, social services or education has mentioned ‘transforming care’ to me but fortunately I attended a talk about it earlier this year and despite there being no handouts had made notes, I will now be asking some questions about how ‘transforming care’ will work for us.

There is also the Care Act of 2014

The Care Act introduced a general duty on local authorities to promote an individual’s ‘wellbeing’. This means that they should always have a person’s wellbeing in mind and when making decisions about them or planning services.

Wellbeing can relate to:

  • personal dignity (including treatment of the individual with respect)
  • physical and mental health and emotional wellbeing
  • protection from abuse and neglect
  • control by the individual over day-to-day life (including over care and support)
  • participation in work, education, training or recreation
  • social and economic wellbeing
  • domestic, family and personal relationships
  • suitability of living accommodation
  • the individual’s contribution to society

So we have a little ammunition, which used in the right way should help our case.

We are a little down but we are by no means out! I simply cannot accept anything but what is needed to enable Zach to live in the community and have a happy and fulfilling life.

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Don’t look so serious Zachster, we will get there in the end. xxx

 

 

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Trying to keep smiling.

Hi everyone, I am back! well kind of…

The past few weeks have been tough going, we are still waiting for a decision on The Zach Project, it seems to be taking an interminable time.

While we wait, life has to go on and we have to try to behave as though we are not worried, super stressed or feel as though we have the weight of the world on our shoulders. Our super perceptive son would immediately pick up on that and so we try to continue to smile.

We know that we are by no means the only parents of a young person who has autism or a disability living this life, we know that there are so many other families out there who go through the motions of having a normal life when we don’t actually have much concept anymore of what a normal life looks like and at times even the strange life we have becomes even more difficult.

My sister who I am meeting today sent me a text telling me she needed to leave by 3 pm as they are having friends over this evening. It was a perfectly ordinary text but the idea of having friends over is something which only happens at Christmas in our house!

Zach actually loves it when we have a house full of people, he loves the buzz and the sound of happy chatter and laughter. John and I love it too, it makes us feel like any other family which is a privilege we rarely experience, and we of course enjoy seeing our friends but the extra energy required to do these things is hard to find. The idea of a late night is too dangerous when we are already in huge sleep deficit and constantly tired. To people  who haven’t experienced sleep deprivation for 18 years it is probably hard to get your head around.

Conventional behaviour at times looks so blissful, always being on the margins can be so lonely and feel so sad. Anyway enough of this wallowing, I am hoping I really will be back soon….I guess it just feels so hard when we are reliant on other people making massive decisions about Zach’s future.

Interestingly when I was giving his very nice Transition worker a gentle nudge earlier this week and telling him we had little time to sort things out for Zach and Beam needed to recruit staff for Zach’s team and that there was no plan B, he said…

‘well plan B would be residential care’

to which I replied

‘Zach would really hate to be taken away from his home’

to which he said

‘has Zach told you that?’

to which I said

‘ Zach has no speech’

Sometimes when you feel so astonished by something someone has said it is hard to get the words out of your mouth, but I fortunately recovered enough to explain that Zach is entitled to family life and choice like any other person.

Sorry if this is rather a miserable  post, I have been ill a lot lately and my sense of humour seems to have failed me….I will try harder next time to be positive, happy and bubbly.

It would be great to have some good news to share.

 

 

 

Take me to the river.

Many friends have been asking me how the Zach Project is going…and it is a good question! We are still working on our proposal, we really want it to be an exceptional plan and water tight so between The Beam Clinic and Belinda Blank who is the Information Officer at Ambitious about Autism and is a wonderful support and advocate to parents and their young person, and ourselves we are beetling along with the job.

In the meantime we have been sailing! Well actually I don’t think going on a broad beam boat is called sailing but we have been on the river.

In Harlow just a few miles up the road from us is a charity called CanalAbility and they have a number of canal boats which are accessible for people with disabilities. We have had a number of trips with CanalAbility, initially just for the day but over the last couple of years we have had overnights.

On the day trips you are given a crew who are all volunteers and skipper the boat but when you do an overnight a member or two of your party do a day course, learning how to skipper the boat and learn all about how the boat runs and what to do in an emergency.

We went with some dear friends, Paul and Anne, Cameron, Aidan and Finlay. John was our skipper and he and Paul with the help of the boys did most of the negotiating the river.

We set out from Harlow after doing the necessary checks on Friday afternoon. The boat travels at about 3 miles an hour so if you need to get somewhere fast I advise another form of transport however if it is a relaxing peaceful couple of days you are after then it is something you would really enjoy.

The boats are equipped with all you might need, there is plenty of room. The Stort Challenger sleeps 10, it has two toilets, an accessible bathroom, a lift at either end of the boat and wide corridors.

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We spent Friday night moored at Harlow Mill! So basically reached the outskirts of Harlow, the town we set off from. Paul had made a delicious chilli, one with meat and another for the veggies and we all relaxed with a drink and good food and company.

I guess one of the nice things about being on the boat for a couple of days is no television, and we have to either talk to one another or just ignore each other! I was still without a mobile phone and those that had them had a job getting a signal so we talked….we also played games. We had a beetle drive….anyone remember going to the school beetle drive?

Zach loves being included in things and likes the atmosphere of us all chatting and laughing, the busyness and buzz are all things which make him happy and want to join in.

Zach is very perceptive to peoples moods, he is constantly reading and watching peoples facial expressions and listening to their tone of voice and like all of us it really affects his mood.

I don’t have anything very exciting to tell you about our trip, apart from us rescuing a very tired Bee. I have never done this before but have read that Bees can often become exhausted and hungry and one landed on the front of the boat so we got some water and added some honey to it (we didn’t have any sugar which is what I think is suggested you give) and popped the Bee on the plate and it sat there for what seemed like an age sucking up the honey and water. When it was replete it flew happily off, it was amazing to see and it was exciting!

img-20160411-wa0008.jpgThe reasons I wanted to let you know about our weekend jaunt was firstly because the charity is fantastic and some of you may want to experience the adventure for yourselves, you can find CanalAbility at

Lock View

Burnt Mill Lane

Harlow CM20 2QS

Telephone 01279 424444

email : hello@canalability.org.uk

Website http://www.canalability.org.uk

The other reason I wanted to tell you about it is because it is something which we can do as a family with friends. Our life is probably pretty alien to most people, John and I spend a lot of time doing things most people wouldn’t imagine doing. One of the things that Zach requests to do a lot is go for short drives in the car and listen to music. Not good for our eco footprint!

Zach likes to be in charge of the music in the car, and he often only wants to listen to the first few lines of a song, and so we drive the car to nowhere, listening to the first few lines of the same song often for the entire journey taking us nowhere!

Zach likes going for walks, he likes to lead the walk and his walks often follow the same route. We live at the bottom of a steep hill and there are some long, steep steps leading to the top on the lane at the bottom of our road, some days I have been up and down those steps with Zach about 15 times. Our neighbours accept that this is normal for our family.

It is so good to find an activity which is mutually pleasurable for us all and the trips we have on the canal always are. Like most parents, what brings Zach pleasure makes us happy too so we go on the same walk, listen to the same intro and drive to nowhere quite happily though it is great to have a weekend away from it all too!

 

 

 

 

Stuff you just couldn’t make up!

I don’t have much to report to you on The Zach Project, we have received the draft copy of Zach’s EHCP which hours of work went into and wonder whether it is fit for purpose because it is totally aimed at Ambitious College….anyway I am going through it with a fine tooth comb while John is doing a comparison of costs to demonstrate that the The Zach Project is financially viable.

In the meantime last Wednesday Zach bit my mobile phone. The screen shattered and the camera lens, I imagined it would be easy enough to fix!

I found a place nearby and was told that it needed a new screen and also a whole back as the camera lens is incorporated in that, making the cost £100. The nice chap in the shop said he would get the parts in and it would be a few days.

On Easter Monday Zach bit his ipad and the screen shattered into lots of pieces.  We have tried just about every robust case on the market and have yet to find one that is totally Zach proof. I have a large box in the loft which is full of cases which have not been up to the job, I could probably open my own shop selling ipad cases which are tough, just not that tough!

Zach’s latest ipad and we have had a few, is an ipad air 2 which before this morning I didn’t realise is not straight forward to replace the screen on making it rather expensive. The ipad was purchased last October so is not quite 6 months old.

Apparently the cost of a new screen is £200! and the shop would need to get a screen in as they don’t stock them. Zach is on Easter holiday and I was grasped by panic when I was told it would take a few days! Zach’s ipad is an integral part of his down time at home.

The chap in the shop said he would buy the ipad air 2 from me, he would give me £100, the cost of my replacement screen and back of my mobile phone, which he is still struggling to locate parts for.

Put on the spot and with Zach being on holiday I decided to go to John Lewis and buy a bog standard ipad air (which the cost of replacing the screen is just £50)

The bog standard ipad air was £379. When I got home from John Lewis I checked our home insurance policy to find that our excess is £150 as I was still struggling with selling the ipad air 2 which cost £479 for £100! However as I said it was going to cost £200 to fix, sorry if your head is reeling with all these figures.

Despite having at least 4 brand new cases in the loft, not one of them fitted!

I cobbled together one of the old armor-x cases (which cost £60) and had to pad it out with bubble wrap to accommodate the ‘air’ aspect and Zach was very pleased to see it when he came in however…….

In the last 6 months we have purchased

1 ipad mini (for Zach to use at home as a communication aid) @ £219

An Armor-x case for the ipad mini @ £60

The Armor-x case screen protector was not sensitive enough so

A Griffin protector case at £52.00

An ipad air 2 @ £479

An Armor-x case @ £67

The Armor-x case then ripped so

2 x Otterbox defender @ £92

1 x Beetle defender @ £18.70

Repair to my Samsung mobile @ £100

An ipad air @ £399

and I just had to order a new case for the ipad air at £49

Bringing us to a grand total of £1535.70

It is a well known fact that bringing up a child/young person with Autism or another disability costs 3 times the amount it costs to bring up a mainstream child/young person and I am pretty sure these figures were calculated before the advent of ipads and mobile phones.

And so that is another nail in the coffin of my extension, I almost hope that John doesn’t read this as it will be at least another two nails in that coffin if he does!

I am hoping that in my next post there will be no more Apple/Samsung related stories and I will have more news of The Zach project for you 🙂

 

 

 

Wonderful Mudlarks.

I wanted to rush out to buy a penthouse flat with money we really don’t have at the moment but fortunately a visit from Vahe and Kerry and long chat made me realise that due to The Zach Project needing to be up and running in a really short time frame , renting a suitable place was the way forward. It was difficult to know where to look.

For some years I have been involved with the Hertford charity Mudlarks which is run by my friend Vic Hobson. It is a great charity which has been growing year on year. It is a community allotment project and I remember when after much battling Vic got the piece of ground which was to be the allotment, I went down to see it and it was literally a big clump of couch grass. Fortunately Vic is visionary and she could see something which I couldn’t, anyway some years on and it is an inspirational place and a vibrant allotment with many different areas of interest, it is a great place to visit as everyone who goes enjoys what they are doing and with every visit there is new interest.

Mudlarks supports adults with learning disabilities and mental health issues. You can find out more about Mudlarks at wordpress.mudlarksgarden.org.uk and café.mudlarksgarden.org.uk

One day Vic said to me I am going to open a café….and she did! because she usually does what she says she will. The first property we had for the café needed a lot of work putting in and once again Vic’s vision was truly….. well visionary!

After weeks of really hard graft we had a very quirky café, the only vegetarian and vegan café in Hertford, called Mudlarks Garden Café. Produce from the allotment is used when possible and everything is cooked or baked upstairs in the kitchen. We also get Hertford residents bringing produce into the café from their gardens or allotments for us to use.

The most wonderful thing about the café is that it employs adults with learning difficulties and mental health issues. Staff are taught all they need to know about food and hygiene, how to work as a team and really importantly they are contributing to the community and being paid to do a job!  Mencap gives the figure of just 1 in 10 people with a learning disability in paid work, and that is usually only part time work and low paid.

We have just recently moved next door to number 10 Railway Street,  a property with fully functioning electricity and central heating (we did have a gorgeous open fire at number 12)! It is without doubt the funkiest café in Hertford and it is great that our regulars have moved with us and we are attracting new customers too. I volunteer in the café on a Tuesday, and have been part of the team since we opened and I really love it.

Mudlarks also has a community gardening service, so skills learned on the allotment are transferred to another setting in a private garden, or the garden of a local business. They also do the gardening at Hertford Castle so if you are in town you can pop in and see just what they do. If you are a regular at Hertford Town and have seen their pristine ground  Mudlarks are responsible for that. This part of the charity is called Larking About.  To book Larking About to come to you please call Andy on 07866 659679 to discuss your gardening needs.

There is also a large house in Hertford which Mudlarks use in wet weather and other occasions when they need to be indoors. In the summer we have had The wonderful Mikron Theatre group come and give open air performances in the garden and we have also used it for other events. Various community groups use Scott House and it is a great asset to the charity.  It is a base for the all important admin team to work from and at the fund raising meeting in early February it was mentioned we needed to find people to rent the rooms upstairs.

After Vahe and Kerry had chatted to me about not needing the flat but renting, it dawned on me that the rooms would make a great base for The Zach Project.  They are beautiful rooms in a perfect spot, a few minutes walk from the town centre and pretty close to public transport links. There is a large garden and plenty of space, it is ideal.O

One of the (many) hurdles I need to cross to get the project off the ground is to convince Hertfordshire that Zach going out of the house to learn is integral to the success of the venture. Many people with disability receive support in their homes and the community but I don’t know of anyone else who has a base elsewhere.

Zach has spent 16 years of his life doing pretty much what he wants to in our home so in my opinion it doesn’t make an ideal learning base. He needs, as we all need to be out of the home every day, have a routine which involves getting up at a reasonable time, having structure to the day and feel relaxed and as far as possible unchallenged at home.

Another reason why it is vital for Zach to have a learning hub is he needs his independence , I can’t think of many 18 year olds who want to spend all their time with their parents and there is no reason why Zach and other young people with learning disabilities should be any different. The less independence a person has, the less they are able to make their own choices and good self informed decisions.

I sent Vic a text message asking her if we could have three of the rooms at Scott House for Zach’s learning base and she sent back a single word answer which was ‘Yes’! with a kiss of course.

So very excitingly we have expert support from Beam ABA and a base at Scott House, I am now putting together my ‘pitch’ to present to Hertfordshire to persuade them that this will be a really innovative and worthwhile project for them to invest in.

 

 

 

 

Laura Trott and gold medals

Sorry I have been away for a couple of days at the World Track Cycling championships at the Lea Valley velodrome in the Olympic park! And what a couple of days it was, although I am no longer a cyclist myself (other than a few miles on a sunny windless day) I still love the sport and it was great to see so many fantastic rides from the GB team. I thoroughly recommend the experience even if you aren’t a cyclist your self, you will I promise leave wanting more.

Back to the Zach Project…We saw the new year in with some of our very best friends, we sat and chatted the evening away and played a few silly games and we also talked New Years resolutions, okay I know it wasn’t a very original topic but I bet you did too!

We shared our resolutions and when Vahe and Kerry asked what mine was, I had the same one I have had for some years now. I would like to set something up for young adults with autism and other disabilities, if I had the resource a hub where people could meet at the start of their day, do activities, hold social gatherings and make their own along with a people matching agency which provided expert support that was bespoke to their needs, the reason for this? I refer you back to some of our previous experiences with agency staff.

It was a great evening, they are very dear friends.

Early in the New Year Vahe contacted me, he is converting his dental degree to a medical degree at Kings College and he needs to do an elective project. He wanted to do his elective on researching what is available in the community for young adults with autism with a view to us starting a people matching agency at some point in the future, as I said they are amazing friends.

At that point we had no reason to believe that Zach was not going to Ambitious College, in fact we had every reason to believe he was! We felt pretty confident after meeting the principal and a member of their team being present at Zach’s Education, health and care plan transition that it was a shoe in as long as Hertfordshire County Council were in agreement.

‘An Education, Health and Care plan is the document which replaces Statements of Special Educational Needs and Learning Difficulties Assessments for children and young people with special educational needs’

There was much ‘whatsapp’ messaging between us regarding Vahe’s project, I suggested some examples of good practice we could explore and we formulated a plan.

It was around this time that the call came to let us know about Ambitious College refusing Zach a place.

Ironically Ambitious about Autism has been sponsored by the Department of Education to deliver their ‘Finished at School’ training. They consider themselves to be trail blazers expecting the same outcomes for young people with autism as mainstream young people, I obviously now realise that they mean ‘certain young people with autism’ rather than all.

In their jargon about the training they say ‘What isn’t reasonable is the current lack of opportunities for young people with autism once they finish school’ I concur, and feel very strongly that this is the case and despite their ‘Finished at School’ project coming to an end this month, little has changed for young people with severe autism and behaviour that challenges.

In the Autism world there is The National Autistic Society which is good, and offers great support for families who are experiencing many different problems but they are really geared towards the middle/high end of the spectrum and although we are members, they offer very little for us as a family.

There are other Autism charities but very few are aimed at the people with the most severe and challenging behaviour which goes with it.

There is a great charity called ‘The Challenging Behaviour Foundation’ to be found at http://www.challengingbehaviour.org.uk, some of what they do is provide support and training. They have a forum where parents and carers can ask others in their position for advice and ideas about difficulties they maybe experiencing.

They do a lot of work with the Tizard centre at the University of Kent. The Tizard centre is the leading UK academic group working in learning disability and community care.

Despite a suggested 25% of those diagnosed with autism being non verbal there is very little help available specifically for them.

Try to imagine how it feels to be unable to communicate how you are feeling, to say you don’t like a specific food that keeps turning up on your plate, that someone or something has hurt you, that you feel ill and your head hurts, that you don’t like the person who keeps taking you out, that you don’t like going for long cold rides on the back of the tandem with your Dad who is a mad cyclist (sorry Zach’s Dad!) or that you would like to have the choice to say where you want to go and who with but you don’t have the words. Imagine having so much to say but no way to say it.

Challenging behaviour is really very difficult to cope with but imagine if you had to resort to it to get yourself heard! There is a reason for all behaviour and unfortunately for many people who are non verbal it is the most effective way they have to communicate with people who are not ‘listening’ to them.

Challenging behaviour is defined as ‘culturally abnormal behaviour (s) of such intensity, frequency or duration that the physical safety of the person or others is placed in serious jeopardy, or behaviour which is likely to seriously limit or deny access to the use of ordinary community facilities’

Scope say that ‘the behaviour is a sign that something isn’t working. It shows that there is some need which is not being met or a problem with communication’

I realise that I have gone very off topic about The Zach Project but hopefully you will see as my blogging continues, why I felt the need to mention all that I have in this post….. I will be back with more news about progress we are making very soon.

 

 

 

 

 

Thinking cap on…

Going through my mind that Friday morning after a sleepless night was what our options were, and they were seriously limited.

John had talked about moving somewhere in the country where there was a college which could meet Zach’s needs, not a bad idea but we had to find that college and it would need to provide ABA, have expert autism provision and also have a robust positive behaviour support programme in place, have a place and be ready to take Zach in September.

‘Positive behaviour support is a behaviour management system used to understand what maintains an individual’s challenging behaviour. People’s inappropriate behaviours are difficult to change because they are functional, they serve a purpose for them. These behaviours are supported by reinforcement in the environment’

The idea I was formulating in my mind was this

  • Purchase a flat, two bedrooms minimum, Zach needed a base for his learning to take place. It would be a barrier to his learning given the long history of time spent within the home for the base to be at home and there would be many changes needed before learning could even start to begin.
  • Find expert support who would be happy to support Zach fulltime, teaching him life skills, communication skills and accessing the wider community.

 

  • Get funding for this!
Expert support is very difficult to find, I am sure many other parents who have a young person with autism can testify and relate to this. We have over the years had some seriously inappropriate people sent to provide Zach with a short break.
‘Short breaks provide opportunities for disabled children and young people to spend time away from their primary carers. These include day, evening, overnight or weekend activities and take place in the child’s own home, the home of an approved carer, a residential or community setting’.
Some of the types we have had through our door are as follows :-
People who told us of all the experience they had looking after ‘these’ people and then sat and chatted to me for what felt like hours on end while Zach occupied himself elsewhere in the house. They would usually ask how I first knew Zach had autism and then want me to go through the whole story. Others with a child who has autism will tell you the same as me, asking this question is about at novel as Monday following Sunday! We are all sick of the question and sick of people expecting a long, detailed and emotional answer. Sorry!
The chap who called Zach ‘Forrest Gump’ because he could run fast, why not Linford Christie?
Zach does have a good turn of speed so when a man turned up and sat on our rather low sofa was unable to stand up due to his exceedingly large body weight, I really felt that people matching hadn’t been a consideration by the agency.
We had plenty who turned up and before they had even crossed the front door step were telling us how tired they were, what a busy day they had had and how they couldn’t wait to get home and go to bed, not exactly inspiring.
Along with this mass of unsuitable types we have also had some fantastic support from people who we are still very good friends with, still support Zach and I hope will long continue to.
However, last November the Beam Clinic started working with Zach at home, delivering 6 hours each week and we have been thrilled with their professionalism and approach to a personalised learning programme for Zach.
Beam can be found at beamaba.com. I called Cormac Duffy who manages the Beam clinic in Finchley on Friday afternoon and asked if Beam would support Zach full time and he gave me a very definite and hugely reassuring Yes!
Purchasing a flat wasn’t going to be easy , we needed to find some capital…I purchased an extra lottery ticket for Saturday night!
Anyway I am pretty dogged when I get the bit between my teeth, so although I didn’t know how we would manage it, I was determined that this was the plan and it was going to happen….we had the green light from Beam and this was now The Zach Project.