The Down Syndrome bill… to support, or not to support?

On Friday, MPs will debate a ‘Down Syndrome’ bill, sponsored by Liam Fox MP in association with an organisation called the Down Syndrome Policy Group (but not involving the Down’s Syndrome Association.)

This is, “A Bill to make provision about meeting the needs of persons with Down syndrome; to place a duty on local authorities to assess the likely social care needs of persons with Down syndrome and plan provision accordingly; and for connected purposes.” There’s an easy read explanation of the bill here.

Rather like the Autism Act, a Down Syndrome Act would lead to a national Down Syndrome strategy to improve provision and outcomes for people with Down Syndrome across the UK.

There is a lot to like about this, not least simply that MPs are talking about learning disabilities – something that happens all too rarely.

Whatever one may think of the effectiveness of the national Autism strategy, legislation and resulting strategies that spotlight a specific condition certainly put it in the public eye. This can only be helpful for people living with Down Syndrome, all of whom will have a learning disability in varying degrees.

And yet, we’re worried about this Bill. We’re not the only ones; Learning Disability England (for one) is consulting its members; we will look forward to hearing their view shortly.

We’re worried that an Act that obliges local authorities, schools and the NHS to prioritise people with Down Syndrome may lead to other people with learning disabilities being denied the scarce resources available.

We’re worried that the allocation of those desperately scarce resources will become label-centred, not person-centred.

We’re worried that politically, this is a ‘divide and conquer’ strategy that will allow government to point to its achievement of a new Act whilst further undermining the ability of all those involved in supporting the health, care and education of people with learning disabilities to speak with a single voice.

And we’re particularly worried that few people with Down Syndrome appear to have been consulted to date. Is this a classic case of doing ‘to’ instead of ‘with’?

It is said that a rising tide lifts all boats and if a Down Syndrome Act drives increased investment in support for all those with learning disabilities, then it will be a fabulous piece of legislation.

Our fear is that the rising tide, whilst floating the Down Syndrome boat, may simply sink the other boats around it.

Our earnest will is for this Bill to pass, but only alongside a substantially improved and ringfenced funding settlement for all those living with learning disabilities.