There is this great concept called ‘Short Breaks’ and all young people with a disability are entitled to it.
Definition of Short Breaks
“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.
So in theory this should be pretty good all round, the young person gets to have a fun time with people who understand them and know their interests and the family get some time to recharge their batteries and kick back and chill out!
Our experience of short breaks didn’t really go to plan. I have never really liked the idea (as no parent does) of sending Zach somewhere that he is not happy to go. We have never had the luxury of a family member who took Zach overnight or even for the day so Zach has always been used to our family unit and home.
In 2007 when Zach was 10 years old there was an exciting review of disabled children’s services which led to ‘Aiming High for Disabled Children’ which aimed to transform the life chances of disabled children. There is a very long government paper if you would like to read it which sets out just how things were going to change to improve our children’s lives.
I was particularly excited that Autism and challenging behaviour featured highly on the list of priorities for the report and outcomes
The National Autistic Society said
We welcome the acknowledgement in the Short Breaks Implementation Guidance for local authorities and primary care trusts that “current short break provision is particularly inadequate for children and young people with ASD and/or behaviour that challenges”.
The guidance goes on to state that “a short breaks service should … provide fit for purpose and age appropriate provision which ensures that the following groups are not disadvantaged in accessing short breaks: children and young people with ASD. These are likely to have other impairments, such as severe learning disabilities or have behaviour, which is challenging”
However, we are concerned that despite this focus on autism in the guidance, eligibility criteria are being set which would serve to exclude children with autism, particularly high-functioning autism and Asperger syndrome, from accessing short breaks provision.
There was a five year period in which local authorities had to get the new services up and running, so giving them time to find the right expertise and locations.
The Government gave each local authority a large sum of money with which to set up additional services. Hertfordshire set up a service which they called The Hub. It is a great service and it is still running so a lasting legacy from the review. A long established charity called KIDS got the contract to run the Herts Hubs and they do a great job.
From the KIDS website please see below giving a brief outline and contact details for East and West Herts.
The KIDS East and West HUBs offer information and support for parents and carers of disabled children and young people aged 0-19 in Hertfordshire.
Any parent or carer of a child aged 0-19 with any impairment can access the HUBs. You don’t need a referral, just call or email us. You can also drop in but please call first in case we are out! Professional enquiries also welcome.
We can offer free and impartial support via phone, email and face to face (including home visits). For more information about the services and support each of these HUBs provides, click on the relevant HUB below.
KIDS East HUBDivot Place, Hamels Drive, Hertford SG13 7SP
T: 01992 504013 (please call before visiting, in case we are out!) or email us.
KIDS West HUBAlbanwood, Newhouse Crescent, Watford WD25 7BZ
T: 01923 676549 (please call before visiting, in case we are out!) or email us.
Both sites are accessible for disabled people, including accessible toilet facilities to meet the requirements of wheelchair users.
The majority of the money in East Herts was spent on a short break unit called ‘The Pines’ which the charity Action for Children had the contract for. The Pines is on the other side of Hertford so pretty close to us and I was full of hope that Zach may go there and enjoy it.
Zach duly had a referral to The Pines and although I naturally had reservations as any parent does when their child stays away from home for the first time Zach began tea visits and then had some overnights booked in.
John and I were to have our first evening out when it didn’t matter what time we got home…..we were just sitting down to eat in a rather nice Thai restaurant in town when we got a call telling us that Zach was crying, there was a long silence and I then asked ‘would you like us to come and collect him’ and they said ‘yes please’, it was 7.30pm. I pitched up, Zach started smiling and was thrilled to bits to be coming home.
This rather set a pattern and it became evident that despite Aiming High the staff at The Pines did not have the expertise needed to accommodate a young person with severe Autism and complex needs. I was very disappointed as I had really hoped that, not just for Zach and us but for all young people and families in a similar situation to us there was recognition that they and we also needed short breaks, anyway it wasn’t to be.
We did have (and still do) something called ‘direct payments’. Wikipedia describe below rather nicely what DP’s are:-
The Direct Payments scheme is a UK Government initiative in the field of Social Services that gives users money directly to pay for their own care, rather than the traditional route of a Local Government Authority providing care for them. The Cabinet Office Strategy Unit calls direct payments “the most successful public policy in the area of social care”.
Direct Payments are seen as making an important contribution to the independence, well being and quality of life of people with disabilities. When introduced, they were seen as a victory for the rights of disabled people.
Direct Payments are wonderful if you have staff, but it can be very difficult finding staff who can meet your child’s needs and also commit to the hours which you would like them to work. We have had periods of time when we have had great difficulty finding appropriate staff.
As a result of this the council decided that we would have some DP’s to pay Laura but we would have staff from an agency also.
The word agency staff to me conjures up all sorts of images and we have had most of those images on our doorstep! Some I haven’t actually allowed over the doorstep. However from an agency came a wonderful warm and caring lady called Cora whose lovely husband Daniel eventually signed up to the agency in an attempt to spend some time with his wife and they take Zach out for three Saturdays a month. Zach really enjoys his time with them, they have stipulated to the agency that they will only work with Zach and we all have a great relationship.
Over the years we have had some really fantastic staff working with Zach who we have paid with the direct payment money. Many of them I am still good friends with and have gone on to teach and work with children or adults with learning disabilities.
One of these is still working with us and is rather like part of the family. We knew Laura as her sister Amy worked for us, both sisters from a very young age had helped at a local play scheme for children with disabilities and their siblings (which is where most of our favourite staff came from)and this was where we first met the Wrangles sisters.
Laura was about 19 years old when she started spending a lot of time working with Zach. She was (and still is) a blur of energy and fun and not phased by anything, she is both strong, determined and principled. Laura did a degree in Speech and Language Therapy at Plymouth (rather a long commute) so most of the work she initially did was during the holidays. We had some mad and interesting adventures during the holidays and we all laughed a lot which I firmly believe is better than medicine!
We asked Laura to come to Freedom Family Holidays with us, the staff at the Allnatt Centre being ever accommodating gave Lou an adjoining room to ours (poor Lou :O) and we laughed all week. That was some years ago and since then we have had many adventures, been far and wide on a variety of different methods of transport and stayed in many a Premier Inn, Centre Parcs and Butlins and returned to Freedom Family holidays a number of times. Lou is very much part of the group and was missed by all this year.
Laura has planked in just about every location we have found ourselves in!
About two and a half years ago Laura and her girlfriend (now her wife! 🙂 ) April purchased a house in Stevenage, a nearby town. They have done the house up and made it a beautiful home, and in that beautiful home they have a bedroom which is Zach’s! They have books he loves, favourite things and he feels at home there.
We are incredibly lucky that April, who is a paramedic has a heart as big as Lou’s and she embraces and loves Zach too. So Zach goes to The Bangles home for his sleepovers, he has the attention of not one but two wonderful women and they always do something which is fun when he is there. Laura is not only a Speech and Language therapist she is also a fab hairdresser so Zach comes home with a trendy new style almost every time he goes.
We know just how lucky we are to have this, I would hate the idea of Zach going to some short break unit which struggled to meet his needs, where he felt sad and lonely. Sadly Aiming High for Disabled Children has long been forgotten by most and I do wonder just how many lives it changed.
Zach can still feel anxious about staying away from home but once he is there is comfortable and happy and with people who know him very well and most importantly really care about him.
This summer Laura and April got married, it was a really wonderful day. The venue was Hitchin Lavender Fields, they had a massive teepee which they decorated themselves, the ceremony was in the fields, we then had wedding cake, afternoon tea and later on dancing and even more food. I was an emotional wreck at seeing the pair of brides looking so beautiful and in love. There were so many special touches (including my marmite and cucumber sandwiches! )for the guests during the day and a huge amount of thought had gone into the planning and preparation. If Laura and April ever get tired of their chosen professions I think they could make a good living as wedding planners!
The most touching part of the day for me was that they had given the DJ a playlist for when Zach arrived, the list included his most loved tunes and when the DJ asked ‘what if someone else makes a request?’ Laura answered ‘you ignore them’. They were determined that Zach was going to be part of their special day and I was incredibly touched at the effort they made to ensure this. Zach duly responded very positively to the playlist 🙂 and it was great that he was recognised by their friends who had never met him but had heard tales of my bouncy son!
Zach eventually decided he wanted to go home and led us to the car, I went back to say my goodbyes. I could see Zach sitting in the car with John from the teepee where I was, when the next tune came on…Mambo No:5, the car door flew open and Zach leapt out of the car and came running across the field to claim it on the dance floor! A very funny moment 🙂
It was a wedding I will remember for a very long time as being an incredibly special day.
My next post will be an update on thezachproject, it is going very well and Zach is coming home tired and happy which is a great thing.