Dear Minister for Disabled Children and Families

Carly is an Autism advocate, consultant and professional speaker. She didn’t receive her Autism diagnosis until she was 32, after two of her daughters were diagnosed. She found it a battle to get the voices of Autistic women heard and in 2008 started to notice a lack of understanding and resources when it came to autism and girls.

In this letter Carly shares her thoughts on why she is supporting our Now is the Time campaign, and how a future Minister for Disabled Children and Families can help disabled children and their families get the best start in life.

Dear future Minister for Disabled Children and Families,

My name is Carly. I am an autism advocate, the mother of autistic daughters, and autistic myself.

Like many British disabled parents, we want our children to have a better tomorrow.

We have the passion and the drive. We won’t stop until all UK children have equity, including our disabled children. We don’t want anybody left behind.

Our task is lifelong. Our resilience is remarkable. Our need for support to help our children live a fulfilling life, is at times desperate.

Talent is everywhere, opportunity isn’t

As an advocate I have the privilege (and it is exactly that) to work for phenomenal British pioneers leading the way in disability equality. Most recently, participation with Right Honourable Lord Holmes on his vital independent review on disabled applicants and public appointments. Lord Holmes so wisely said that, “Talent is everywhere, opportunity isn’t.”

This lack of opportunity for our disabled children fails to recognise the gifts and talents disabled youth have, this lack of recognition could come at a great cost to our country in the long term.

Some of the brightest minds that can serve our country not only reside in well performing schools but also in Special Educational Needs and Disability (SEND) schools.

I have a friend, the acclaimed artist Rachel Gadsden, Rachel has a visual impairment yet in her talks she explains that “you do not need sight to have vision“.

The saying, “The quieter the mouth the louder the mind” means that as assistive technology becomes more sophisticated, the loudest thoughts, minds and perspectives will soon be heard louder than ever before.

Many are left isolated and forgotten

Please visit the family homes where home educated children live.  The children who were “not able enough” to flourish to their full potential in mainstream schools, yet not “disabled enough ” to warrant a SEND educational provision.

There you will find new thinkers, leaders and cyber security experts of tomorrow.  The most creative of artists, inventors and entrepreneurs, are waiting for you to notice them.  They are all missing out on the governments most diverse forward-thinking schemes like Cyber first, aimed to be advertised in schools.

This grey area of education leaves many of our most capable children isolated and forgotten.  They are left without opportunity or support outside their family.  This comes at a cost to our wallet, to our mental health, to our relationships, to our physical health and the NHS. And not to mention the cost to wider society of all that lost opportunity.

Carly writing on a poster at an event all about equality
Carly is an Autism advocate, consultant and professional speaker.

We aren’t asking for pity, we are asking to be heard

We must see disabled children’s abilities and not just their impairments.

We need a minister to work alongside parents, and the existing Minister for Disabled People and Minister for Children to ensure that no grey area is missed. We need you to be concentrating on disabled children alone so that no task is deemed too big, too small, too out of remit to be pursued as a policy priority.

Minister for Disabled Children and Families, we need you to ensure that when any new Disability Act, policy or project is discussed, you are there with a fine-tooth comb.  You need to ensure disabled children are a part of that policy .

At present some policies are too vague to be implemented. Some Acts have been written with adults in mind, and although this is of vital importance, it leaves disabled children behind.

Now is the time

What if parents of disabled children were better understood and work with a Minister as agents of change, respected by professionals and not viewed as “hysterical” or “hard work”? The truth is we aren’t either, we are often just exhausted.

How much talent could be discovered if we supported the most underestimated?

What if we celebrated disability history and the vital contributions disabled people have made to the UK?

What if we had someone like you making it happen? Now is the time to help disabled children and their families get the best start in life.

Yours faithfully

Carly Jones MBE

British Autism Advocate and Mum

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