Learning Disabilities & Autism Opinion

The Down Syndrome Bill – step in the right direction?

Steve Scown, Chief Executive, Dimensions

Last November, MPs debated and approved the first stage of a Down Syndrome Bill – which is sponsored by Liam Fox MP, in association with the National Down Syndrome Policy Group.

The Bill sets out to ‘make provision about meeting the needs of persons with Down syndrome; to place a duty on local authorities to assess the likely social needs of persons with Down syndrome and plan provision accordingly; and for connected purposes.”

Since this legislation already has government support, it is likely that it will be passed into law. Whilst this will unquestionably be beneficial to people with Down syndrome, it raises wider concerns for the care and support of people with other learning disabilities.

A step in the right direction

There is much to praise about the Down Syndrome Bill, starting with the fact that MPs are actively talking about learning disabilities – which is something that happens all too rarely. Similar to the Autism Act (2009), a Down Syndrome Act would lead to a national Down Syndrome strategy to improve the provision and outcomes for people with Down syndrome in the UK.

Although the effectiveness of the national autism strategy has rightly come under scrutiny, legislation and strategies that spotlight Down Syndrome specifically will certainly help to raise awareness. For people living with Down syndrome, all of whom will have a learning disability to varying extents, this must be beneficial.

There is still further to go

However, the Down Syndrome Bill raises wider concerns. Members of numerous advocacy and self-advocacy group have already criticised the Bill for its potential exclusion of the wider learning disability community.

There are scarce resources available for people with learning disabilities. A Down Syndrome Act that requires local authorities, schools, and the NHS to prioritise people living with Down Syndrome risks putting further restrictions on people with other learning disabilities accessing this support. It is a real concern that the allocation of these scarce resources is at risk of becoming label-centred and not person-centred.

Furthermore, a recent survey conducted by Dimensions of people with a learning disability, as well as those who support them and those without a learning disability, revealed that 82% do not feel that the Government listens to people with learning disabilities as much as it listens to other people. With this clear data in mind, here at Dimensions, we are worried about the true intention behind the Down Syndrome Bill.

There are worries that this Bill may be driven by a potentially politically-motivated ‘divide and conquer’ strategy. This will allow the government to celebrate a new Act, whilst simultaneously making it harder for all those involved in the health, care and education of people with learning disabilities to speak with a single, unified voice. This would put further obstacles in the way of achieving impactful long-term care for all individuals.

We earnestly hope that the Bill will pass, but only if accompanied by a substantially improved and ringfenced funding settlement for all those living with learning disabilities.

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