Down Syndrome Bill To Help Ensure People With The Disorder Meet Their Social Care Needs | UK News

According to her mother, Daisy is the “happiest little girl you will ever meet”. This is how it certainly works at her physiotherapy session, where the four-year-old laughs, dances, sings and plays musical instruments.

But her mother, Corina Gander, also says her daughter is often written off due to a general lack of understanding around Down syndrome.

“Sometimes, as a parent, you feel that no one has any high expectations of our children,” she told Sky News. “That’s that old-fashioned stigma.”

Corina was told that Daisy wanted Down Syndrome while she was pregnant. The care she received before giving birth was “fantastic”, but she says there was a dramatic shift when Daisy arrived, to the point where worries about her daughter’s breathing were repeatedly dismissed.

“I was always told ‘well, she has Down Syndrome, what do you expect?’,” She said.

Corina, who has four other daughters between the ages of eight and 20, knew something was wrong with her baby.

“My other kids are not doing this, so I should be more worried about her? ‘No no, you just have to accept that you have a sick child’. I remember someone saying that to me. Well yes, she was ill, but having Down syndrome does not make her ill. “

Daisy Gander has Down Syndrome
Daisy’s family says she is often written off, but hopes she will have ‘a future’ if the bill is passed

Daisy was eventually admitted to the hospital three months later after contracting a virus. It turned out that her lungs and other organs were “floppy”, resulting in severe breathing difficulties, which saw Daisy initiate life support.

“For three months she was potentially fighting right, but no one was listening to me and you have nowhere to go,” Corina said.

The new Down Syndrome Bill, which is expected to clear its first Commons obstacle on Friday when it is considered at second reading, is designed to put an end to experiences like Corinas and Daisys by making it a legal requirement for people with Down Syndrome to have their social care needs met.

The proposed legislation would see people with Down syndrome legally recognized as a specific minority group, rather than being treated more broadly as disabled people.

The conservative former cabinet minister Dr. Liam Fox, who presented the bill, told Sky News: “It will provide [people with Down Syndrome] right to challenge local authorities, health authorities, education authorities if they do not provide care.

“It will give them the right to challenge in law.”

Guidance will be provided to the relevant authorities on the steps to be taken to meet the needs of people with Down syndrome, in accordance with the proposed law.

“This is the first generation that will survive their parents because of their life expectancy,” said Dr. Fox.

“So it is urgent to deal with this element of assisted care to ensure that those living longer than their parents are treated with proper dignity and independence.”

Health Minister Gillian Keegan, who offers government backing, said: “Health, care and happiness for people with Down syndrome is an absolute priority for me.

“As both minister and proud aunt to my much-loved nephew living with the disease, I am pleased to support this bill, which will make a significant difference in ensuring that health, education, social care and housing needs are met after a pandemic. , which highlighted inequalities to be tackled.

“Dr. Liam Fox’s bill and the following guidance will make clear how the needs of people with Down syndrome are to be met.”

At home in Broxbourne, Hertfordshire, Daisy plays with two of her older sisters, Angel, 10, and Rhianna, 20, who work as caregivers.

“I usually get it [Daisy] dressed in the morning and give her milk at night, Angel tells Sky News.

Their support for Daisy is unlimited and unconditional, but there is no doubt that families like hers also need support.

“Hopefully [the bill] will stop the challenges we face, “Corina said.

“We always fight for things and that will make a huge difference for me as a parent.

“When you see it, you feel it [Daisy] will have a future. “

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