Down syndrome bill is ‘very weak’ and potentially divisive, say self-advocates

Campaigners with learning difficulties have raised serious concerns about a “very weak” and potentially divisive bill that has been approved by parliament and aims to improve support for people with Down syndrome.

MPs and peers have approved the government-backed private member’s bill, proposed by the former Conservative defence secretary Dr Liam Fox, despite significant concerns being raised about its contents and purpose.

The Down syndrome bill has just a few simple clauses and will ensure that councils and other relevant public bodies – such as NHS trusts and schools – have “due regard” to new guidance, but it provides no new funding.

The guidance – which will be issued by the government – will explain the steps that it would be “appropriate” for the public body to take to meet the needs of people with Down’s syndrome in its area on social care, health, education and housing.

Heidi Crowter, a disabled campaigner who is a member of the National Down Syndrome Policy Group, which has played a significant role in promoting the bill, said that she was “so happy” that the “fantastic” bill would now become law.

On her blog, she said she was so passionate about the bill “because I am someone who happens to have down’s syndrome and I am living proof that people with down’s syndrome with the right support and care can live [a] funfilled life”.

But other campaigners with learning difficulties have been critical of the bill.

People with learning difficulties who are members of the Covid-19 Support and Action Group, which was set up by the disabled people’s organisations People First (Self Advocacy) and Change, discussed the bill last month.

They said their key response to the bill had been to question “why” it was necessary.

They said: “Our understanding is that it didn’t originally come from people with Down syndrome and the bill hasn’t been written by people with Down syndrome.

“In fact, there was very little consultation or communication about this before it was put forward as a bill.

“This is not to say that people with Down syndrome don’t or shouldn’t support the bill, but it does cause us concern about why it is felt that the Down syndrome bill is necessary.

“Why do public bodies need guidance just for people with Down syndrome and not for other people with learning difficulties or disabilities?

“It is taking a very backward step. It is focusing on a person’s diagnosis and condition; it is singling out one diagnosis and condition.

“It does not reflect the values and principles of the social model of disability. We also fear it is at risk of compromising the rights of others.

“Does this mean we need to have a bill (special guidance) for every diagnosis and condition?”

The group added: “The arguments for the bill seem to be very weak.

“In our view it is weak and unnecessary and at worst divisive.”

The disabled Liberal Democrat peer Baroness [Sal] Brinton told fellow peers on Friday that the bill had raised the profile of Down syndrome, which was “a good thing and long overdue”.

But she pointed to the risk that it could create a “hierarchy of learning disability” against a background of “limited resources”.

Last month, at the bill’s second reading, Baroness Brinton, a vice-president of the Local Government Association, said she feared that this new hierarchy “risks doing harm to the rights of other disabled people, particularly people with learning disabilities, which may also be discriminatory”.

She said: “I know that by giving one group rights when resources are scarce, others will not get them.”

She also raised concerns that the bill represented “a regressive step politically, by advancing a medical model of disability and elevating diagnosis over individual needs” and would “create considerable legal and regulatory complexity for local councils, the NHS and schools at a time when they are already stretched in meeting statutory duties”.

At second reading, the Green peer Baroness [Natalie] Bennett had raised concerns that the bill’s duties “demand very little of public bodies”, “attract no new funding”, and “provide no meaningful mechanisms for enforcement or redress”.

The junior health and social care minister Lord [Syed] Kamall told peers last month that the bill was “not about enhanced rights” for people with Down syndrome, but was about “making sure these identifiable and unique needs are not overlooked when planning, designing and delivering services”.

He told peers on Friday: “The bill does not remove the duties under the Equality Act 2010 for relevant authorities to assess all the needs of people to whom they provide support.

“Our assessment is that, to prioritise funding and resources for people with Down syndrome above other groups without proper assessment of people’s needs would be considered unlawful.”

He said the government would “consult with a broad set of stakeholders in developing the guidance, including those with other conditions” and that “people with lived experience will be at the heart of this at each phase of its development”.

Picture by National Down Syndrome Policy Group: Liam Fox (centre, with yellow tie) and supporters of the bill, including Heidi Crowter (far right) outside 10 Downing Street

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