Where to go, what to do?

Last night Zach went to a Youth Club in a town about 15 miles from home which is for young people with learning disabilities.

He has been there before and has enjoyed playing the drums and listening to music and has even struck up a friendship with one of the other young people there called Charlie who loves music too. He sings and Zach drums.

Last night Zach became very upset whilst there and remained upset for a long time. As the support team did not have a driver I drove. While waiting for Zach to calm down one of the youth workers came over and sat down next to me and said ‘we don’t want Zach to come anymore’. I hope she doesn’t use the same delicate approach when speaking to the young people she works with!

I absolutely understand that Zach being escalated is disconcerting for all around him and it may have been upsetting for the young people at the club but it is just another place which we have been told is not suitable for Zach. The youth worker told me that ‘it is a learning disability’ club, so I said ‘well Zach has learning disabilities’ but I wasn’t going to argue or try to suggest that we should try again. Zach has been excluded, banned, and banished from so many places now that it is like water off a ducks back to me.

Where in our society are the adults with severe autism? I don’t encounter any, (other than in my job as a community nurse in a residential setting). Once people with severe autism and complex needs seem to reach a certain age they suddenly disappear.

There are two things I can think of

  1. That peoples autism becomes less severe with age (which isn’t even worth mentioning)
  2. That people reach a certain age and then live in a kind of twilight zone where they no longer get taken out in public (surely this doesn’t happen?)

But I honestly don’t know where they all are! Everyone has seen the young child who has autism having a meltdown in the supermarket but where are the adults who still struggle with these day to day things?! If anyone knows the answer to this please message me, I would love to know.

I would also like to know where young people who have autism and complex needs are supposed to go to meet their peer group.

Hertfordshire offers a service called Youth Connexions, their role is to offer youth groups (like the latest place to ban Zach) support, information, to help find work placements and suitable educational opportunities up to the age of 24 years.

To say I have been under whelmed by what they have offered us is an understatement! Zach’s Youth Connexions worker could not suggest a single activity, was not able to give me any information or suggestions of work experience and in fact told me he didn’t think he could help in any way! Not very inspiring, he did ask me to let him know of any activities other young people might be interested in!

So what is Hertfordshire ‘The County of Opportunity’ offering in way of….well opportunities for those who don’t fit nicely into the Youth Connexions ideal?

I spend a lot of time searching for activities which Zach will enjoy and will be able to take part in. Some of the ideas I come up with work, while others fall flat but I will keep searching. I want Zach to access the community and still be accessing it when he is 30, 40, 50 and more but one thing is for sure, if he is shut away now with nowhere to go and just John and I for company he certainly won’t be!

Social skills are something which some people who have autism find tricky, new situations and places are something people with autism may try to avoid.  Lack of understanding of expectations and predictability cause massive anxiety and we all try to avoid that!

If there are no safe places for people like Zach to go, to learn social skills and experience different situations and find out that some of them can be good and fun then what? They disappear as adults, their support workers may tell you ‘it makes them anxious to go out, they don’t like unpredictable places and don’t know how to behave in public’…I am sure you see what I am getting at here!

Zach will keep trying new things, doing things which have been tried and tested and getting out and about. If I betted I would put money on further bans but you can’t bake a cake without breaking a few eggs and I want him to keep on baking cakes!




The way forward?

I’ve been quiet for a while, there seems to have been a lot going on.

We had a bumpy few weeks when Zach first moved into Water Lane House, but thank fully he seems to have settled in now. He has two new Beam team members, Poonam and Enrico and he seems very happy that they have joined thezachproject.

A couple of weeks ago we received the good news that Health had agreed to part fund Zach’s support. The news came after 14 months of form filling and chasing the elusive funding for young adults with severe autism which is Continuing Health Care!

Before we started the process I was sure that Zach met the criteria so I pushed to have the assessment done. I am very pleased that despite occasionally feeling like I was having my teeth pulled we pursued it.

Zach is the first young person with autism and complex needs who is not in a hospital setting in Hertfordshire to receive Continuing Health Care funding and it feels like a real victory, not just for Zach but for all the other young people in a similar situation who will hopefully now be able to use Zach’s funding as ‘case history’.

I spoke to Zach’s Learning Disability Nurse, Faith last Thursday and she was thrilled that we managed to secure Continuing Health Care for Zach, we are very grateful for all the work she and Beam did to help us secure it.

Hertfordshire social services are going to meet to plan how this could help bring people similar to Zach, who have been placed out of County back to be closer to their homes and families.

The manager of Beam, the CEO and I met with a Commissioner from Hertfordshire to discuss commissioning Beam in Herts. It was a strange meeting! We had been asked to meet but there didn’t seem to be an agenda. Anyway it was interesting to hear what the Commissioning teams in Herts are concentrating on at the present time.

The Transforming Care Commissioning team are working on bringing people who have been placed in long term out of county and in county hospital placements back to the community. My thoughts are if the commissioning team and social services got together they might see that there is a way to stop people being sent to these last resort places in the first place! Although I understand that bringing people back into county is a very good thing, I think there should be a dual strand of work being done to prevent further people being sent the same way…..who would then need to be brought back into county….and so on and so on!

My personal opinion is that all commissioning teams should be fully aware of the Transforming Care agenda and working towards that so they are always moving the young people forward rather go back to go forward…does that only make sense to me?

Transforming Care focuses on five key work strands of activity-

Empowering individuals – giving people with learning disabilities and/or autism, and their families, more choice and say in the care and support they receive.

  • Getting the right care in the right place – ensuring that people are receiving high quality care and support, with a focus on supporting people in their local communities.
  • Regulation and inspection – tightening the regulation and inspection of providers to drive up the quality of care.
  • Workforce – developing the skills and capability of the workforce.
  • Data and information– making sure the right information is available at the right time, and continuing to track and report progress.

When we talked to the Commissioner at the meeting it was clear that if Beam become commissioned in Herts they would be another service provider, a name along with all the other names of companies who provide support. What social workers and commissioners would see is that they are a little bit more expensive than other providers and so they would not usually be their first choice of provider.

In our experience when the wrong agency is commissioned to provide support things can go horribly wrong and before you know it the whole family is hanging over that very steep cliff edge again with the agency having pulled out because the workers they provide do not have the knowledge or expertise to support someone with complex needs.

This is so important and Beam absolutely do this for Zach! – Getting the right care in the right place – ensuring that people are receiving high quality care and support, with a focus on supporting people in their local communities.

This may sound like a party political broadcast (and there are more than enough of those at the moment!) for Beam but I feel so strongly about what happens to all young people who have severe autism and complex needs who fall through the net time and time again and do not get the chance to have high quality support so do not meet their full potential and are therefore unable to have a rich and fulfilling life.


Ambitious about Autism have had their college ‘Ambitious College’ officially opened by the Minister for Vulnerable Children and Families, Edward Timpson MP. It is great that the dream parents at Treehouse School had has now come into fruition.

I along with many other parents at Treehouse School thought that this would be where Zach finished his official education. It is hard not to feel let down by the charity and organisation when I see press articles suggesting that Ambitious about Autism are ambitious about ALL young people with complex needs and autism. Last year when Zach left Treehouse School he was not the only student who was refused a place at the college the charity had opened and that we as an extended family had contributed money towards. John’s sister Caroline had a big party for her 50th birthday and rather than have presents for herself she asked for donations to Ambitious about Autism to go towards the college where she thought her nephew was going! I am absolutely sure many other families also contributed to make sure the college was a reality too.

Despite my disappointment at Ambitious about Autism no longer being a charity for the most severe and complex people who have autism it is great that London now has a college. I hope that the students who attend are happy and learning.

For Zach I think that not being accepted by the college was a good thing, at the time it certainly didn’t feel like it but he could not be in a better place and with a more committed team than he is! Go Beam and Zachie 🙂