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

 

 

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.