Letters I never sent [02]

Letters never sent.  The letter you wrote, usually in your head, but never actually posted or emailed.  We are sharing those letters on Bringing Us Together.  You can send us your letter and we will happily share it.

Today, Katie is sharing a letter she never sent, one she wanted to write more than three years ago.  Can you relate to it?

The letter I never sent

Letter never sent - KatieDear Adult Social Care and Adult Social Care Scrutiny Committee,

We moved 15 years ago from Northumberland to Calderdale for mainstream education. The Guardian Education did a feature about our family moving 100 miles for a mainstream school. Tyne Tees and Yorkshire TV made a programme called “For the Love of Nadia“. People thought we were moving to Halifax for one of the Grammar Schools but instead we moved for a small, multi ethnic school that had a poor Ofsted report. We campaigned for many years so that Nadia and other children with impairments could have the same education as their non-disabled brothers and sisters.

When Nadia was 3yrs old we were told by an educational psychologist that she would never be able to achieve a mainstream education. We did not let this stop us and we brought Nadia up to go for her dreams and to dream big. She has had to work extremely hard and has been very focussed on her ambitions.

We have 6 amazing children who have all thrived in Calderdale. I have set up two successful charities and have also worked at national level to highlight the needs of families of disabled children. We are a real part of the community.

Nadia has done amazing things and works so hard. She is passionate about contributing to society and making a difference. She has won awards, spoken at the Houses of Parliament, does voluntary work for the Care Quality Commission, the charity 1Voice – Communicating Together and Whizz Kids. She is invited to be a guest lecturer at several universities. She aspires to going to University like her brothers and sisters. She is a role model for many people.

Nadia is nearly 21yrs has severe complex needs, has a communication aid, is a wheelchair user, and is profoundly deaf. She has had direct payments since she was 8yrs old and has talked around the country on the difference this has made to her at conferences etc. All her Personal Assistants that she employs herself are fluent BLS signers. She could not do any of the things she has done without good support.

Nadia has overcome very many daily challenges and is a credit to Calderdale and her family. She has worked hard to get through mainstream school and college putting incredible energy, commitment and positivity into her life. She has a CV that most young people would envy.

And yet although we have been involved politically for many years and we aim to make a difference to the lives of other families our hopes have been squashed. Nothing has prepared us for this.

So much for Support and Aspirations. So much for the Transition process.   So much for having dreams and person centred planning.

Have we gone wrong in supporting Nadia to be in control and to make choices? Did we give her false hope? Should we not have bothered and been more “realistic” instead of “aiming high”?.

Should we not have put so much time and effort into creating a world that we hoped was possible and a world she could be part of? Instead, she has gone into adult social care and we face a time of huge budget restrictions where disabled people are not treated as unique individuals but as a £ sign. I feel I have done her wrong to have given her hope of a meaningful life in the future.

One day she was a happy go lucky young person in children’s services and now has a budget that will only enable her to be toileted at home 4 times a day. You talk about agency staff coming in who don’t have sign language skills. You said that there is a service provided called the Re-enablement service with a worker who will increase her independent skills so she can be on her own in the house. Oh, there will be some extra time for leisure activities and shopping and cleaning.

The Panel met and decided on how they were going to fund a young adult’s life.   A Panel who had not even met Nadia. There was no concept about her as a person, or her potential, or a life worth living. You are condemning her to an existence like a prison sentence. Institutionalised in her own home with minimal support. Everything she has believed in has just been crushed.

How can you do that to a 21yr old?   How can you do that to anyone whatever their age? How dare you?

You are invited to our house to tell her personally and explain your reasons. Come and meet her and our family. Tell her to her face why she can only be put on the toilet 4 times a day. Tell her why you believe she does not have a life worth living.

Yours sincerely,

Katie Clarke

Do you have a letter you have written but never sent?

Send them to us, make them as anonymous as you wish to, remembering they will be public.

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