The Down Syndrome Bill has recently passed its second reading in the House of Commons, after the Government announced it will support it to become law.
The Bill focuses on improving the lives of those with Down’s syndrome, by providing new rights to social care and other services. If it is approved, it could make history as the first law of its type in the world.
The Bill was introduced by Conservative MP Liam Fox, who was chosen at random to put forward a Private Members’ Bill – a law proposed by an individual rather than a political party.
Fox used to work as a GP and decided to propose the Bill after his constituents raised concerns that access to specialised support for Down’s syndrome is difficult to access in some areas of the country.
As a result, Fox set out to eradicate this ‘postcode lottery’ by introducing a national strategy for Down syndrome, across education, health and social services.
The Bill is currently six pages long and proposes a few simple clauses. Namely, it aims 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.”
This means that people with Down syndrome will be recognised as a specific minority group. The NHS and local authorities will therefore have to make provisions to meet their needs and take these needs into account when planning services.
Campaigners up and down the country have welcomed the Bill, with TV stars such as George Webster, Tommy Jessop and Heidi Thomas all showing their support.
However, while many agree the Bill has potential to make a positive difference to lives of those with Down’s syndrome, it has not come without criticism.
Dr Kieron Smith FRSA, author of ‘The Politics of Down Syndrome’ and co-author of ‘Down Syndrome as Pure Simulacrum’, has criticised the Bill for its lack of detail and its exclusion of the wider learning disability community.
In a self-published paper titled ‘The Elephant in the Room’, Smith questions the scope and intent of the Bill. While he praises its intentions, he warns that without significant additional resources and the reorganisation of current services, there will be challenges.
Smith also questions why the Bill singles out a specific group of people, asking: “Why break out Down syndrome from other learning disabilities or chromosomal disorders?”
While Fox has said the Bill aims to de-stigmatise Down syndrome, Smith says the very separation of Down syndrome as a distinct disability “seems unlikely to contribute to a removal of stigma.”
He says that treating people with Down syndrome as a homogenous group gives power to stereotypes – something that the Bill itself reinforces in its intentions.
By planning to place all people with Down syndrome under the care of the state after their parents or carers die, Smith says the Bill reinforces “the lack of agency that the condition can carry with it in its stigmatisation.”
In this way, the Bill seems to forget that people who have Down’s syndrome are not the same as each other and have different needs and abilities.
Smith further critiques Fox for failing to invite the Down’s Syndrome Association (DSA) to be involved in the Bill’s development.
The Bill claims to have utilised the knowledge of several smaller groups, including the main platform for campaigning around the Bill – National Down Syndrome Policy Group’ (NDSPG).
However, as the DSA is the only charity in the UK dealing with all aspects of Down’s syndrome, campaigners, including the DSA themselves, have questioned why they have not yet been involved in its development.
Carol Boys, chief executive of the DSA, said it is vital that the Bill includes the views of people with lived experience. In a statement, the DSA said: “As the Bill goes through Parliament we would expect there to be full consultation with people who have Down’s syndrome, the DSA, the wider Down’s syndrome community and other stakeholders.
“We look forward to being involved as the guidance is developed.”
Ms. Boys similarly questions why the Bill fails to include the wider learning disability community. She said: “I think we need to think about people with other learning disabilities because we don’t want people with Down syndrome to be considered as a special group.”
Andrew Lee, director of People First, has also voiced concerns. He said The Bill “singles out a small group of people with learning difficulties … and forgets the rest of us.”
According to the Disability News Service, Lee has criticised Bill for adopting a “medical approach” to addressing the barriers faced by people with learning disabilities, because it focuses only on people with a particular impairment.
He also critiqued the Bill’s call for councils and other public bodies to have due regard to government guidance as the message is “not strong enough”, as it merely asks rather than orders.
Lee added that he is concerned people with Down’s syndrome will worry that others with learning disabilities will not have access to the same services they do due to the legislation.
In their response to the Bill, The Local Government Association (LGA) also highlighted this as an area of contention. They said: “It would be helpful for any new guidance to include information that helps councils and the NHS understand the needs of those with Down syndrome and what effective support would look like.
“However, we would be concerned about any guidance which creates a differential level of access/eligibility for support compared with other groups of people with learning-disabilities, as the duty on Local Authorities regarding assessment under the Care Act 2014 is to assess people based on need, not diagnostic categories.”
Smith warns that until the DSA is included and more detail is given, we end up with an “elephant in the room”, meaning we cannot properly identify or engage in meaningful debate.
For this reason, Smith proposes a more specific call to action, which includes a bias towards inclusion and broadening of scope to include other learning disabilities.
He says if the Bill is to make a positive difference to people’s lives, it must confirm that it will provide:
He says that all this should be combined into a strategy for all disabled people, to ensure there is no privilege and everyone has access to the same services.
However, others are hopeful that this Bill is just the beginning for disabled people, and it will likely pave the way for better access to services for people with other genetic conditions and disabilities.
As Ms. Boys says: “If education, health and care improves for people who have Down’s syndrome as a result of new legislation, it could also benefit others with a learning disability and other disabled people.”
She concludes: “People who have Down’s syndrome and others who have a learning disability deserve the same chances as everyone else.”
