Transition for Special Needs families and how to plan for the future

Every parents worries about what the future holds for their child. That transition from childhood to adulthood and making life long decisions about their future is something we all get both nervous and excited about for our children. However, what if that decision doesn’t lie with the child and it is something that is decided by yourself and the local authority. 

 

Commonly known as a transition period, it is a long and lengthy process which needs to be planned and be well prepared for in advance of the child leaving full time education. 

 

George is now 16 years old and the time is coming closer and closer for him to move on from school into the next phase of his life and education. 

 

To be very honest, I’m not really sure what the future holds and what is the next stage and process, because I like many special needs parents are experiencing this process for the very first time. As with everything in today’s world COVID has had a massive impact on the support we have received from the transition team. 

 

Prior to COVID, my husband and I met with a transition nurse. She came and visited us in our home and discuss all of George’s current care needs, support and requirements and what we hoped would be the next stage of his future. It was reassuring to have this meeting and to discuss the option available to George. 

 

For those of you unfamiliar, the main role of a Transition Nurse Coordinator is to facilitate and coordinate services during the transition process for young people with complex physical health needs or with life-limiting conditions and their families. At the time, the transition nurser assured us that she would be our guide during the transition from school to the next part of life. 

 

To find out more information on the services the transition team provides in Hertfordshire please visit https://www.hct.nhs.uk/our-services/herts-young-peoples-health-transitional-service/ 

 

However, over the last two years the advice and support has been non-existent and I don’t feel confident that George’s needs will be sufficiently met. It is more of a feeling that something will be thrown together at the last minute and it won’t fulfill what we had hoped for George. I have a small idea of what the next steps will be, but, of course with everything in life there is no guarantee or certainty. 

 

With mainstream education, you apply via a local authority and sit and wait in the hope that you will get the first choice school you want for your child. With special needs children, often you are given a provision based on what the local authority feel is right for your child. If you want to appeal the school it can be a very long and lengthy process. So it is not a straightforward choice. This is my fear with transition and where George will be placed. 

 

So many unanswered questions going around in my head, that I feel I have no one to ask. Firstly, do we receive transport, is it wheelchair accessible, will he have 1:1 support for his needs and the list goes on and on and on. 

 

As always, you hear the horror stories from other parents. The worst of which was a parent being told nothing had been put into place purely because her son’s life expectancy was meant to be that long so therefore nothing was set up. How can that even be a factor! 

 

You then have the long grueling process of trying to find adult provisions for them to access to keep them stimulated and have some form of life outside the house. This is not an ideal situation as it is hard enough to access things whilst they are younger let alone looking for support during adulthood. 

 

One of the most daunting aspects is the word disabled has such a vast and varied meaning and therefore trying to find something that fits to a disabled person’s criteria is not always easy and can take a lot of planning. I assume this is why the process is such a long and lengthy one and why the Transition Team are in place to help families plan for the next stage. 

 

At present, I feel that I know nothing about what the future holds for George. I appreciate that some people may not feel that this is a time to panic but I am. When I look at Jonathon, George’s twin brother, he has so many informed decisions. He chose his options when he was in year 9, planning for the future, then when he received his G.C.S.E results, he knew that he wanted to apply for the RAF and so begins his next chapter and future. George’s consists of his he at Lakeside School until he turns 19 and then……….what? I have no idea. 

 

Everything always feels like such a constant battle of chasing up, speaking to one person and being passed over to the next. Then being told “oh this person no longer works here and you need to contact this person” or “that department has changed now and you need to go through this one” and so on and so on. 

 

I hope I am not alone in feeling this way or coming up against these brick walls. 

 

With nothing changing on the COVID front and seeming more and more likely this is our normal way of life now, when is something going to be put into place to change the way the transition service is run. 

 

The SEND Hertfordshire website https://www.hertfordshire.gov.uk/microsites/local-offer/preparing-for-adulthood/preparing-for-adulthood.aspx does offer some facts and information. However, it is a lot of clicking and being taken off to different website and having to search for the information that is relevant to George. It is a classic case of he ticks one box for a requirement but not the other. I feel frustrated and that I am continuously going around in circles. 

 

I really hope that previous parents and carers much nearer to the end of their transition process have been better supported then we have. 

 

Maybe it is a local authority area and I have fallen into an unfortunate local authority area that has not put the support in place during COVID. I would love to hear of success stories of transition and what wonderful support and provisions people have been given. This may help give my some light with my situation. Or is anyone who is in the same boat as me I would love to hear from them also, perhaps we can support each other and give some positive vibes about the next stages of our wonderful unique people in our lives.