BAPS – The “T” Word is banned

This is the fourth in a five post series of posts from the very Bl**dy Awesome Parent – Lynn James-Jenkinson. Lynn is a proud mum and also the CEX of Pathway Associates and Director of the North West Training and Development Team.

If you missed the first three in the series, you can read them here , here and here

Background to the series:

 Writing this series of 5 Blogs I was thinking about – 

• people who work in Health, Education and Social Care Services, 
• individuals with a learning disability, autism or both and 
• their families, friends and allies. 

I also talked to friends because I was a bit worried about how Emma may feel.  They, as they always do, helped me think about what Emma might say and how she might feel. 

Could she really say what she thought from her perspective? Would she be asked? 

I don’t mean that she couldn’t say what she thought. It’s not that the stories or what I will say is hard – for most of it she was there too.  It’s more like there’s this unwritten rule that disabled people can’t share this stuff from their own perspective. What I mean is she maybe can’t because she hasn’t got the words for how it feels to be the source of so much pain for the people she loves most. 

My friends helped me understand that from their perspective when you’re little and/or human, you can’t help but think the pain they see is all their fault – how does that make you feel, like shit really that’s how.

They told me that by the time you do have the words, you have this sense that its part of your job as a disabled person to protect them (the people you love) and telling the story from your perspective will definitely only hurt them more. “So, you keep it to yourself.” 

As far as everyone else who might read the stories families tell are concerned, if they’re a disabled person themselves they know just how hopelessness, helplessness and loneliness feel, so why write it down? If they’re not, they either minimize your feelings, can’t empathise at all, or pity you (vomit emoji) and take it as evidence that they’re right to think it’s very sad to be a disabled person. 

The “T” Word is banned as we step into the future – together

 Year 11 – little could I know the energy this would take to support Emma, far more than Kerry and Aidan needed…. why? Well because Emma needs to continue to access the support she is entitled to from public services. 

In Year 9 we had started to talk about Year 12 as we knew that Hillside didn’t have its own Sixth Form so she would have to leave with the rest of Year 11. This led to the original plan that Emma working with the local FE College to complete the ‘Open Learning’ Award, Certificate and Diploma while she was at Hillside. 

During Year 10 and review of the EHCP it became apparent that Plan A would be scrapped because she would have completed the Diploma while still at Hillside. With the Michelle (SENCO at Hillside) we started to ask about options open to Emma including vocational options like some of her peers – and brother and sisters – had done at Year 12.

We were directed to ‘the Local Offer’ which was one of the most depressing evenings I have spent. Everything on there was either GCSE entry or segregated/ special college. 

There were (are) no vocational options on the Local Offer that young people who may not be GCSE level can access. 

Emma’s passion is dance. She has gone to Loretta Legge Theatre School from being 5 or 6. The attitude of people in the real world is always – in my experience – lets throw her in, assume she will manage but have older peers ready to provide support if she needs it.

It is because of Ms Legge, Mrs Urszuly and Miss Walters that she has built on the physical skills Eileen Kinley started with her. Supporting her gross motor skills and all those months Miss Walters was determined that Emma would learn to skip helped her balance and as a result pencil control. Mainly it has helped Emma be part of a wider dance family. Her dance friends produce 2 flip chart sized posters of all the things they like and admire about Emma for her – what shone was that this is where she is loved and valued as an equal member of the team.

Dance is who she is, it is what she does, how she communicates, her friendships, every night, her passion so we asked about how she might access this like her peers at 16-18. 

RULE 7 

Keep your cards close to your chest and don’t ‘show your hand too soon. Bide your time. Don’t let on you might know the Law (or refer back to RULE 4 BLAG) if they know too soon they will have legal services and team managers checking emails before they are sent – Refer back to RULE S confirm things in an email. 

In a meeting Emma and I were told that “We (the LA) are willing to consider dance as a hobby Emma but it will never be a job for you”. – Refer to RULE 4 and bide your time…. I cannot deny though that this statement incensed us and lit that fire of absolute determination that at 16 Emma James-Jenkinson would not be ‘settling’ for the easy option- RULE 6. 

We asked – repeatedly – and have still not got an answer – how a new provider might get onto the Local Offer if we found something that Emma could do? We were told “unequivocally we would not fund that” – Refer to RULE 4 and bide your time. 

I started to look round what was being offered to Year 11’s across the area that I thought Emma might like and contacted a Jellies Theatre School who were offering a free BTEC Level 3 in Performing Arts. After a call they suggested Emma go along to an open audition with other young people and they would take it from there. 

Meanwhile we supported Emma to look at the things ‘on offer’ on the Local Offer. On ‘the offer’ there was a segregated college offering a certificate in Life Skills that we were told she might be able to go to for 3 years before going to the local FE college (where she had already competed the Diploma offered) until she was 25 with a funded EHCP and despite the fact that she would of already completed the Diploma. 

What followed were many many hours of homework for us, learning the rules as best we could, or learning enough about the rules and who ever we could turn to so that it would become obvious we would be willing to fight all the way. 

It felt like there was a view developing that ‘mum’ didn’t want Emma to go to the segregated college because she doesn’t approve but Emma might like it and its her voice that matters. Absolutely it’s her voice that matters…… I asked a friend who works also as an independent advocate to support Emma to make sure her voice was heard above her families and above the LAs to make certain that we were doing what she really wanted. (Refer RULE 2) 

RULE 8

Get independent advocacy support for your young person so you can be confident that it is there voice that is leading planning not you. You can start to believe that this just might be your unrealistic expectations and what YOU want. RULE 8 and 9 will help you stay confident about whose life it is your are doing battle for. 

Emma flew through her audition and the Faculty Head interview with the team at Jellies – as I said people in the real world generally in my experience see opportunities and how inclusion will help their organisation rather than a list of why not’s. 

RULE 9

Keep people who live in the real world around you. It is so easy to get sucked into believing what you are told– people in the real world will say “that’s stupid why” 

Brighter Futures as the college and Jellies as the Industry partner recognised Emma’s passion and immediately offered to run a BTECC Level 1 / 2 alongside their Level 3 and helped by submitting the required application for higher needs funding for Emma. We asked for 30 hours support – 18 hours performing arts, 3 hours functional maths, 3 hours functional English, 6 hours enrichment. 

The LA Social Care Team listened to Emma and her family and worked with her Independent Advocate Sarah Bickerton (thank you Sarah) to produce one of the first ever ‘assessments’ where I can see and hear Emma and as a result additional Direct Payments were agreed. These still have to be used to employ a PA so Emma will employ someone to perhaps support her travel home from Jellies on the bus with her friends – we don’t know yet time will tell what will work for Emma. 

So here we are on the cliff that is Year 11 about to leap off into the future. Emma will start at Jellies/ Brighter Futures in September and like every other 16 year old realise she has found what she really wants and is able to do or will realise it’s not what she wants – both lessons equally important. 

LESSON 4

Do not let our young people ‘settle’ at 16 because that is easiest. If the extent of our ambition and expectation is Life Skills and maybe an Internship and staying in FE until they are 25 because they can with a funded EHCP then do not be surprised or complain at the dependency you create.

On one hand the thought of 9 years fulltime education would make life easier for Tony and I because initially we would not have to give up work to support Emma, but then it wouldn’t I don’t think because she would not be happy. It is little surprise that the number of adults with a learning disability, autism or both in employment remains dismally low when our expectation and ambition levels are equally low. 

For now though back to RULE 3 – Meerkat

---

Next week we will be sharing a round up of Lynn’s Lessons and Rules. You will be able to download them so you can have them to hand for future reference. We know we will be referring back to them and thinking how grateful we are to Lynn for taking the time to put them all together.