‘A massive step forward, a piece of history, a world first.’
The recent Down Syndrome Bill was largely assumed to be a positive step towards progress that should be celebrated yet the Bill has engendered strong feelings in the Down’s syndrome and learning disability community.
The Bill itself is currently only six pages long and proposes several simple, general 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.”
The second reading of the Down Syndrome Bill (the bill has adopted the American spelling) took place on 26th November 2021 and was passed uncontested. The Bill has since passed through Committee stage, third reading and is heading to the House of Lords.
It was proposed by Dr Liam Fox MP as a Private Members’ Bill – legislation suggested by one individual rather than a political party, which often focuses on campaign issues and groups. If passed, the Bill will be the first of its kind and the 40,000 people with Down’s syndrome in the UK will be recognised as a specific minority group for the first time.
But to what extent has the Bill campaign, the legislation and its provision for the future been successful in its aims so far?
The proposed first aim of the Bill is to ‘De-stigmatise Down’s Syndrome and re-educate both the public and professionals about the advances, including in life expectancy, that have occurred in recent decades.’
The campaign for the Down Syndrome Bill has enjoyed extensive media coverage with its lead activists appearing on prime-time television, social media and in print journalism since its first reading in Parliament.
It has drawn attention to the numerous serious issues faced by many people with Down’s syndrome including poorly written education, health and care plans (EHCP), exclusionary practice in schools, lack of employment opportunities, poor social care, and health inequalities. Campaigners hope that this increase in awareness will educate the wider public and increase positive engagement.
In addition, through the National Down Syndrome Policy Group (NDSPG), campaigners with Down’s syndrome such as Heidi Crowter and Tommy Jessop have taken a leading role in the campaign for the Bill’s approval, with Crowter stating that she supports the Bill because “people need to get to know us better”.
The Bill’s campaign offers a template of how to launch and sustain a highly effective inclusive campaign with those with learning disabilities at the heart. Many argue that this element of the campaign has contributed to de-stigmatising Down’s syndrome, as it has shown the vivacity with which members of this community will fight for their rights and share their life experiences.
However, there are some campaigners with concerns that the Down Syndrome Bill could divide the wider learning disability movement, and others who also argue that it does not adequately fight stigmatisation.
Critics cite the relative lack of involvement (until recently) from the Down’s Syndrome Association, Down Syndrome Education International (DSEI) and Mencap.
All have key roles and extensive experience in de-stigmatising and educating the public and professionals about Down’s syndrome and learning disabilities, so many are puzzled why their expertise remained untapped. However, the NDSPG says it is their expectation that the Bill’s guidance will be formed after extensive consultation with the Down’s syndrome community and connected parties.
Critics of the Bill have also argued that it is overly medicalised through its focus on ‘condition and diagnosis’ and doesn’t adequately de-stigmatise Down’s syndrome or the wider learning disability community. As the IPSEA (Independent Parental Special Education Advice) explain: “The law is clear that it’s a child’s needs, not their diagnosis, that determines their access to support.”
As of yet, the Bill does not seem rooted in the ‘social model’ of disability – that it is society that needs to change, not the disabled person – and instead is rooted in medical diagnoses.
In his speech to the House of Commons introducing the Bill, Dr Liam Fox listed the specific medical challenges faced by people who have Down’s syndrome as a major motivator for the bill and discussed the importance of providing care for them once their parents have died. However, there was little referral to wider structural inequalities faced by people with Down’s syndrome.
In response to this, campaigner and author Kieron Smith argued that the ‘underlying assumptions’ in the Bill ‘reinforce stereotypes – medicalisation, needing care and infantilisation’.
The most ardent criticism during the campaign for the Bill argued that it was exclusive and discriminatory; by singling out people with Down’s syndrome they would be given preferential treatment over other people with different diagnoses or learning needs.
Organisations such as Dimensions and People First have shared their concerns; “…it is said that a rising tide lifts all boats and if the Bill 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”.
Yet, people with Down’s syndrome are a distinct group of people who have been historically discriminated against in similar ways but who also often have a range of shared needs and potential health challenges that can be best met through group action.
For example, most people with Down’s syndrome have a specific learning profile, with most requiring specialist speech and language intervention. Supporters of the Bill argue that it is not discriminatory; it merely serves an easily identifiable group in society and will lead to some basic common needs being met through particular support and interventions.
There is also a specific kind of solidarity and deep sense of community that comes from focusing on a group that shares several similar needs, such as the 2009 Autism Act.
Whilst the unifying power of a campaign based on a diagnosis of Down’s syndrome is evident, it should be acknowledged without it becoming a homogenising force that infers all people with Down’s syndrome are the same. However, it is also important to acknowledge the view of those who have legitimate concerns about the possible effects of the Bill on the wider learning disability community. All people with learning disabilities should be treated equally and need access to the right opportunities in work, leisure, housing, education and healthcare.
The proposed second aim of the Bill is to ‘ensure that current provision of services is improved, whether provided by health, education or local services, by ensuring that providers give due consideration to those with Down syndrome when designing service provision.’
The NDSPG argue that the legislative intervention that the Down Syndrome Bill offers will clarify what support people with Down’s syndrome should be getting.
Professor Sue Buckley OBE has also spoken about the importance of using the Bill to help communicate vital information from research to practice, to improve existing services and ultimately better the lives of people with Down’s syndrome. She said: “I believe we can use the Bill to promote such guidelines based on facts, not opinions, and influence professional practice. I think we can use the Bill to leverage better services and to argue for funding.”
Current UK SEND legislation does not often deliver adequate services and in many cases there is significant local and national variance in the standard of provision. This is sometimes due to a lack of knowledge about the specific support that is beneficial to most people with Down’s syndrome.
Often successful support is dependent on parents or carers, local support groups or individual professionals who go out of their way to educate themselves further; a system that is not sustainable or fair. Proponents of the Bill argue that once passed it will help professionals who provide services and will also crucially help people with Down’s syndrome to navigate an often complex and inaccessible system.
However, some critics have questioned the power of enforcement of the legislation, arguing that it does not impose any new legal obligations on public authorities to enact the existing rights of those with Down’s syndrome.
Local authorities are obliged to give “due regard” to the needs of people with Down’s syndrome, meaning they will be expected to assess them differently. Critics have questioned whether stretched local authorities will have the political will or resources to do this to a consistent level when many are already failing to adhere to existing SEND legislation.
Critics have also queried the lack of specificity in the Bill; there is an element of the unknown to the nature, timing and form of the guidance that will be shared. For example, in preparing the guidance for local services the Secretary of State must consult such persons as “considered appropriate“, and can publish the guidance in the “manner deemed appropriate”. However, the Bill’s proponents argue that this lack of specificity is necessary to cover all the services that it relates to.
Furthermore, there is a perceived gap between the actual content of the Bill and how it is being presented by some campaigners and legislators. Statements that the Bill will totally ‘ensure’ improved services have been described by Steve Broach, a public lawyer, disability and children’s rights advocate, as promoting “Alice in Wonderland stuff”.
However, there is a likelihood that the guidance shared as a result of the Bill will provide clarity on the provision that people with Down’s syndrome can and should expect. If the Bill makes people feel more empowered to demand the right standard of care and to push for their rights then many will deem that a success.
The proposed third aim of the Bill is to ‘look ahead and deal with future issues, such as long-term care, in an era where, for the first time, many of those with Down syndrome will outlive their parents.’
People with Down’s syndrome are living longer lives thanks to better healthcare and life expectancy has increased to around 60-70 years. Evidently, the existing model of familial-care in later life urgently needs to be revisited. The instruction that Local Authorities regard this when they are designing future services has been impactful on many parents and carers; Caroline White stated “I can sleep at night a little sounder” knowing her child’s needs are more likely to be met in her absence.
For many people with Down’s syndrome and their families, the guidance that will be shared as a result of the Bill could transform their future experience of education, housing and healthcare.
However, some of the Bill’s detractors argue that it is a missed opportunity to encode radical and comprehensive support on a national scale. This is in part due to the fact that it is a Private Members’ Bill and by their nature they are often short, limited and concise in order to ensure cross-party support. Dr Liam Fox MP acknowledged this in relation to the Down Syndrome Bill when speaking in the House of Commons saying: “if you reach for too much in a Private Members’ Bill you can end up with zero”.
Because the Down Syndrome Bill is tied to one individual MP, it becomes linked to judgments on their actions and political supporters. Fox himself has spoken extensively on his goal of eradicating the ‘postcode lottery’ of support standards by introducing a national strategy for Down’s syndrome across education, health and social services. However his voting record and his past commitment to disabled people and their rights have been questioned.
He has also been critiqued for praising the government’s recent decision to wind-down Covid-19 measures, a policy which has been deemed disastrous for clinically vulnerable and disabled people, including those with Down’s syndrome who he has pledged to protect.
The path to progress cannot be reliant alone on Private Members’ Bills and on the actions of individual MPs, amazing campaigners, parents or policy groups. To truly ‘deal with future issues’ and to deliver the extensive change desperately needed, action needs to also stem from central government itself. This requires far more funding, community consultation, root-and-branch reform, and more challenging but ultimately more impactful debates around the nature of support for disabled people.
The Down Syndrome Bill is an enabling framework. Once the Bill becomes law, it is expected that the wider Down’s syndrome community will be invited to participate in an extensive consultation process which will inform the development of guidance to be issued to local authorities and other relevant bodies.
Edel Harris, CEO of Mencap has reiterated the importance of ensuring that this consultation period gathers “the widest possible engagement from all interested parties” to capture the different abilities, life experiences and expectations of people with Down’s syndrome across the country; only then can it accurately claim to deal with future issues.
She also notes that the Bill “provides a rare opportunity to open up a bigger conversation that will hopefully lead to a cross-government learning disability strategy”.
There are valid concerns that the Down Syndrome Bill sets a precedent for highly-separated campaigns that lessen the strength of the wider learning disability movement. In addition, there are questions around the power of the legislation to compel authorities to do anything new when providing services for people with Down’s syndrome. Ultimately, the effects of the Bill will depend on the nature of the guidance it shares with local and national bodies, and the extent to which the professionals who work with them can or will improve services for people with Down’s syndrome.
However, the Bill is a sign of hope for many individuals and their families. It has been an example of how to lead a successful and inclusive legislative campaign and is without doubt a major moment in the history of Down’s syndrome. It is also a small step towards redressing the complex and multi-faced inequalities that people with Down’s syndrome face. These two statements are not mutually exclusive; the Bill can be praised for its innovation whilst highlighting the ways in which we still need to ensure further support.
Parents, carers and self-advocates may have an uphill journey, but doors to MPs and government departments, headteachers offices and healthcare professionals may have been forced to open wider by the Bill and its campaign. If the campaign for the Bill is a sign of the future and of the community’s ability to fight successfully, then there should be considerable hope and optimism that the door will stay wide open to build on in the future.
Maddy Rose is an Employment Caseworker for Mencap’s Supported Internship programme. She graduated from the University of Oxford with a degree in history, and subsequently completed a Masters in Disability Studies at the University of Leeds. Here she specialised in research exploring biases within healthcare information on prenatal testing.
