My story: Mum's battle to get right support for her daughter with Down's syndrome

Marilyn Heath and her daughter Sarah

Marilyn Heath and her daughter Sara. - Credit: Marilyn Heath

Every year, about 750 babies with Down's syndrome are born in the UK - caused by the presence of an extra chromosome in a baby’s cells.

The quality of life for people with Down's syndrome can be transformed with the right education and support.

But parents and carers of people with Down's syndrome are still facing a battle to make sure they get the same life chances as others.

Marilyn Heath, as part of the Disability Network Norfolk Group, helped fight Norfolk County Council's changes to how much disabled people are charged for their care.

And here, in her own words, the Horstead mum talks about the battles she has faced - and continues to fight - for her 24-year-old daughter Sara.

"I was an experienced head of maths in a secondary school when Sara was born.

"Like I found many years before, as a younger teacher, you don’t truly understand how parents feel about their children until you have a child yourself.

Sarah Heath

Sara Heath. - Credit: Marilyn Heath

"Similarly, it is a really fast learning curve when you have a child with a difference!

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"I knew that Sara had Down's syndrome before she was born and thus researched and visited other parents prior to her delivery, but it did not prepare me totally!

"On my second day at home after return from hospital a home midwife asked me ‘how does it feel to be the parent of a disabled child'?

"That question really upset me as I looked at my baby, who had all her fingers and toes and no known heart problems and I suddenly felt so scared of ‘the unknown’.

"I had no idea what her potential may or may not be. Whether my child would ever be able to cope with the world, read, write , speak clearly even. That statement from that midwife was crass."

She said one of her first experiences of 'abuse' of a disabled child was when a health visitor urged her to get her daughter out in the pram "as nobody would be able to tell at this young age".

And she said: "As a two-year-old toddling around a shoe shop, she went over to some other children when I was distracted and their parents dragged their children away from her as if Sara had an infectious disease.

Sarah Heath

Sara Heath. - Credit: Marilyn Heath

"Some people refused to acknowledge her when she said hello to them from her pushchair.

"It was a real battle to get proper integration in mainstream education, especially the older she got.

"Mainstream gave Sara a support worker who sat at a desk with her and worked within the classroom, but certainly not on the same topics.

"Thus, she was not part of the class but taught separately up the corner. This is not how children with disabilities integrate into main stream society. Immediately they are seen as special and separate."

Ms Heath said at age eight, the school Sara was happy at closed and she went to a new primary school.

Ms Heath said: "Sadly there were many problems at her new school until it escalated to a dreadful place and I was so upset with a statement written in Sara’s home school diary by her support worker that I complained and kept her home for a couple of days until, in my mind, the issue was sorted out.

"However Norfolk County Council's education department wrote to me and stated that ‘as I had decided to home school her’... And the arguments started.

"I was arguing with the council for six months at the same time as supposedly home-schooling and caring for an eight year old with special needs who had no school place."

It ended up at a tribunal and, just before it started, Ms Heath said she was offered a monetary payment to settle. She refused and won the tribunal, with the council ordered to find Sara a school place.

But Ms Heath said, now Sara comes under the responsibility of adult social care, it remained a constant battle.

She said: "It is a very hard, very distressing life as a carer, always having to fight to get things done or oppose unfair charges.

"I have suffered with clinical anxiety and depression in the past, owing to the sheer overwhelming burden placed on us by the very people who should be here to help.

"To wake in the morning in complete fear of what on earth will happen to your child when you are gone and not here to fight for her, is really hard and basically I have to fight when able and take a rest when necessary to guard my own mental health.

"Since we as carers save the county £1.9bn a year, why do they treat us and our cared for so badly?"

What Norfolk County Council says

A spokesperson for Norfolk County Council said: “We believe carers are very important, people such as Ms Heath are vital are to those they support, and to Norfolk as a whole.

"That’s why we work with Carers Matter Norfolk to provide information and support for informal carers: our service can provide an assessment, which identifies what practical support a carer needs and how they can access care services to help.

“On the specifics of Ms Heath’s experience with education, we at Norfolk County Council have transformed our children’s services department since the issues raised occurred and our services are continuing to improve.

"Provision for children with special education needs is being increased considerably in both mainstream and specialist schools and we continue to improve this support with further investment.

“We’re making improvements across all areas of our services, and a key aspect of our improvement work is focused on communication and support for parents and carers, as we know it can be difficult to navigate what can be a complicated system.”

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