Over the last few years, like many parents, we have been focussing on the forthcoming Children and Families Act. We've been busy keeping you updated and looking at the implications for our own families. One thing many of us haven't been doing - because we haven't had time, is looking ahead to what the future holds for our children. If you are anything like me, you will leave thinking about the future until you think you have to start looking into it but usually, as is often the case, you find yourself wishing you had started earlier.
With my other hat on, I have been looking at some of what the future holds with Bringing Us Together. We recently held a workshop for families of older children and young people to discuss Family Rights, Citizenship and the Mental Capacity Act. We were keen to find out what was and wasn't working for these families.
The findings from this workshop were published this week and they don't make pleasant reading. Bringing Us Together's What's Not Working post highlights some real issues for families.
We also asked the families how they kept their young people safe, loved, happy and in the driving seat of a purposeful life. We wanted to know what did work for them. We wanted to share those with you on Special Needs Jungle so that you can start thinking about what you may need to know.
- Developing Circles of Support
- Including brothers and sisters in the Circle
- Being with people who love and care about the disabled person
- Living independently in same area as family and building relationships
- Having family around to support when and if needed
- Being involved
- Ensuring he is listened to – especially when he wants a hug
- Being with people who love and care about that person
- Employing a PA co-ordinator to oversee that the disabled young person’s life runs effectively
- Information on rights and also what is not right
- Developing Circles
- Rules – predictability to help with understanding
- Information on rights and what is wrong
- Living independently in same area as mum and building relationships
- Ensuring staff are safe and competent “know what to do”
- Appointing Deputies to support decision making processes
- People around to read and understand the subtle signs
- Photographs to record experiences
- Different people involved to agree what happy looks like
- Living in own flat with good PA
- Having the power and being 18yrs old
- Making own decisions
- Decided which PAs to go out with
- Being made Gala Queen
- Good relationships
- Family close by
- Having a fiancé
- Making own choices around music – accommodating so music can be heard wherever he go
- Having fun times and doing what he wants to do and what he likes to do when he wants
In the Driving Seat of a Purposeful Life:
- Being willing to give up your “mum” hat if you want them to be truly happy
- Expect to hear things you don’t like or agree with
- Financial Deputy very helpful in ensuring person retains benefits
- Need for information for families to understand the processes around Mental Capacity
- Cameron Trust using Deputyship appropriately
- Opens own post
- Having his own flat
- Having own front door key
- Having own credit cards
- Finding an incentive whether it is a payslip, time bank etc.
- Circle ensuring contribution to community
- Being involved in the community
- Being an employer – knock on effect of enabling creative families
- Using people’s gifts and skills
- Ensuring that we investigate a person’s interests and appoint PAs accordingly
- Voluntary work – talks to parents
- Achievements – exams etc.
- Having plans for the future
- Having ambitions
- Values part time job – raises self esteem
As a mum to children aged 10 and under, this was a real wake up call for me. I read through some of the comments from the day and thought "wow, if I think it is difficult now, it's not necessarily going to get any easier". However, I feel slightly more prepared now due to my involvement in this project.
So, what can you do?
Forewarned is Forearmed, or so they say. Being informed helps us to make informed decisions.
Over on Bringing Us Together, we have put together a page of some of the resources the families recommended around the Mental Capacity Act.
Another useful site with some great resources is the Preparing for Adulthood site. Their Delivering Support and Aspiration publication is particularly useful when looking at the Children and Families Act and the implications for our young people.
Another site I have personally found useful has been Staffordshire County Council's website. Their Transition into Adult Life page has lots of great resources.
What sites or resources have you found useful?
If you have reached the transition stage already, what one tip for parents of younger children would you pass on? What do you wish you had known?
- Accountability: the number one change you would like - March 7, 2016
- Life Skills – are children with VI missing out? - March 2, 2016
- Tests:Do you and your child find them testing? - February 3, 2016
I have had my head in the sand about my son growing up. I have kept hoping he would miraculously become more able, but… he’s 14 and there’s no sign of any miracles yet! I will use what you’ve said as a template. Thank you 🙂
Good luck Sandy (and don’t feel negative about hoping for a positive, it’s called being human). Let us know if we can point you to any information or resources you may need.
Really useful post Debs, thanks.
Easy to regret not starting to think about this earlier, but much harder to do that – because, as you say, parents are busy. And when you say busy, you mean the parental equivalent of playing at Wimbledon. You’re doing well if you get a couple of days to re-group or a swig of Lucozade between sets.
When my son left his specialist school in July, his statement ceased. It’s been replaced with a Learning Disability Assessment, a much simpler process and document, but not fully explained to me – it’s usually been referred to by the number of the form. After 1 September, he could be eligible for a EHC – no one knows.
The mainstream college we’ve ended up with made all the right noises about his support, but his first meeting with staff went disastrously wrong because what they said would happen didn’t and what they said wouldn’t happen did. The ‘carefully managed transition’ hasn’t happened yet. College asked for a one-page profile. They asked for it *after* the first (disastrous) visit; whether they’ll use it or not remains to be seen. It was only this week that we had formal confirmation of the offer of a place – which has knock-on implications for benefits.
Person-centred planning has consisted of me and two professionals who know my son figuring out several options for courses and support packages; only one option (the one that didn’t get off to a good start) is actually available because of funding criteria which no one has been able (or willing) explain to me. My LA has given me incorrect information about raising the participation age (since corrected) and says it will be publishing information on funding in the Local Offer after 1 September – so I can’t find it out from them until then. I finally managed to get information on post-16 funding via another parent (take a bow Carole Rutherford of Autism in Mind). This will still be in place for 20015/16 so I can’t see the system getting any more flexible.
Most of the individuals involved have been brilliant, but they’re negotiating their way through a system that appears to have been designed by an accountant who’s feeling a bit dazed and confused. My son’s careers adviser has been invaluable as a key worker – she knows the system and has done her best to get what my son needs, but her hands are tied by the funding system too.
Hope this helps some parents know what to be prepared for.
Unfortunately, this is not a unique story. I have heard of so many similar variations from many different LA’s. Thanks for sharing your story though as we really do need more parents to be aware of the issues they potentially face.
If you could give one tip to families, what would it be?