What’s the point of the Down’s Syndrome Bill? One parent’s view, plus a legal opinion

with Dr Kieron Smith, father of a child with Down's syndrome, followed by legal opinion from barristers, Victoria Butler-Cole QC, Steve Broach, and Nyasha Weinberg of 39 Essex Chambers

Important SNJ Note
We delayed this article for several weeks as we were waiting for one from the proponents of the Bill. We had planned to run two posts concurrently, one from those putting forward the Bill and one from those with a sceptical viewpoint, so both views could be stated side-by-side. However, late last week they told us they did not, after all, want to comment on their Bill so we are going ahead without it.
Nancy Gedge, parent of a young man with Down’s syndrome, introduces another parent, Dr Kieron Smith, followed by the legal viewpoint from barristers, Victoria Butler-Cole QC, Steve Broach, and Nyasha Weinberg

The Down's Syndrome Bill recently received its second reading in the House of Commons. It's a Private Members' Bill introduced by Conservative MP, Dr Liam Fox.

The aim of the Down Syndrome Bill is to ensure that certain health, education, and local authorities take account of the specific needs of people with Down syndrome when exercising their relevant functions. This builds on the government’s stated commitment to improve outcomes for people with a learning disability.

Advocates, such as the newly formed All Parliamentary Group for Down’s Syndrome (APGDS) support the Bill, as evidence suggests that people with Down syndrome face specific challenges. The Bill seeks to address these by ensuring that relevant authorities will have clear guidance on appropriate steps to meet the needs of people with Down’s Syndrome. They say that the guidance will also help individuals with Down syndrome and their families to have a clearer understanding of what they can expect and what they are entitled to.

The Bill is not without controversy, however, with critics saying that the call for specific legislation relating to Down’s syndrome is divisive, and, with the existence of the Equality Act (2010) and the Children and Families Act (2014) redundant. Details of the Bill are available online, and the Down Syndrome Policy Group who lobbied Dr Liam Fox MP to support the Bill have also launched an Easy Read version.

Dr Kieron Smith FRSA, and his wife, long-time parental advocate, Sharon Smith, are sceptical of the Bill. Kieron has written this article for us explaining their views. Once you have read this, you can then read our legal analysis from barristers, Victoria Butler-Cole QC, Steve Broach, and Nyasha Weinberg.

The Down's syndrome Bill is perplexing and lacking in substance by Dr Kieron Smith FRSA

On the face of it, legislation to help people with Down's syndrome sounds like a positive step forward, placing a duty on local authorities and health services to meet the specific needs of people with Down syndrome when exercising their functions. Indeed, it is hard to argue against a Bill and campaigning group that includes people with Down syndrome within its trustees. Many parents of children with Down syndrome have been celebrating the progress of the Bill and hundreds met up outside Parliament today to celebrate, wearing blue, pink and purple - the colours of the recently formed Down Syndrome Policy Group.

On his website, Dr Liam Fox MP said:

“I am thrilled to bring forward a Bill to deal with the issues faced by those with Down syndrome.  The full title 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’.
“My aim is to deal with three main areas. The first is to de-stigmatise Down syndrome and to re-educate both the public and professionals about the advances, including in life expectancy, that have occurred in recent decades.  The second 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 third 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. By giving due thought to the issues today we can prevent avoidable human tragedies in the future.”

Liam Fox MP

So what's wrong with it?

There is a well-known parable from the Indian sub-continent where a group of people, who have never seen an elephant before, feel around in the dark and come to varying conclusions as to what the animal looks like. Some recount, upon feeling the trunk, that it is like a snake, others, feeling the tusk, claim it is like ‘a kind of spear’. The parable is one which speaks of someone’s subjective truth is valid yet limited by ignoring the totality, demonstrating the importance of a deeper understanding and an appreciation of different perspectives. Currently, any attempt to comment on the Bill feels a little like trying to feel your way around an unknown elephant.

In the first instance, tangible evidence is scant; the Bill itself is a simple six-page document which asserts merely that it will ‘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’. With little detail on what the Bill will deliver, there has been much in the way of increasing expectations, of this ‘uncontroversial’ law. At this point, however, we are left with an elephant with no tusks and little in the way of teeth. It behoves us to ask at this point why it exists at all. In the first instance - why break out Down syndrome from other learning disabilities or chromosomal disorders?

Dr Kieron Smith
Dr Kieron Smith

Concerns from other organisations

In the days leading up to the Second Hearing of the Bill, several organisations run by and for people with learning disabilities have published their concerns about the Bill. These include The Down's syndrome Association, Dimensions and People First (Self Advocacy),  who raise valid concerns about the progress of a Bill that focuses only on Down syndrome.

Dimensions describe how, “...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”. Andrew Lee, director of People First (Self Advocacy), was quoted in saying that the Bill “...just singles out a small group of people with learning difficulties… and forgets the rest of us”. I share these concerns.

MPs in Parliament have stated why they are supporting the Bill for people with Down syndrome. They are reporting poorly written EHCPs, exclusionary practice in schools, a lack of employment opportunities and wide-spread stigmatisation. Each MP tells a story of one or more local families who have experienced these difficulties. However, this is not just a problem for those with Down syndrome. As Special Needs Jungle has reported on a frequent basis, these issues exist for a significant number of pupils with special educational needs and disabilities (SEND).  If local authorities and schools and other organisations/businesses were meeting existing duties that are clearly set out in the Children & Families Act 2014, the Care Act, the Equalities Act, and other pieces of legislation, then many of the issues raised by the Down Syndrome Policy Group would be addressed and this Bill would not be needed. 

The Down’s Syndrome Association, who by the way have not been involved in the development of the Bill, draw attention to the range of guidance for people with Down syndrome that already exists, for instance relating to education and health. Furthermore, as IPSEA have tweeted, “Legislation to support children & young people with all types of SEND – inc Down Syndrome – already exists. Govt’s priority should be making sure existing law is followed. Law is clear that it's a child's needs, not their diagnosis, that determines their access to support.”. 

Without significant additional resources and reorganisation of how current services for all disabled people, then to say there will be challenges is an understatement. As Gurvinder Samra, an education law specialist solicitor at legal firm Shoosmiths, points out: 

“The draft bill is extremely promising in theory and is a sign of hope for many individuals and their families, however, translating theory to practice can often lead to difficulties. These difficulties often arise from the interactions between different bodies within local government. They often struggle to offer a coherent, holistic service due to a lack of communication. Health and education services have their own individual policies and budgets to adhere to, which can limit how much they are able to offer.”

In addition to these concerns, I have written about further issues relating to the development of the Bill, which I have published online in a short discussion paper inviting further discussion and debate. I would urge Special Need Jungle readers to engage with the concerns that are being raised here, and those being raised by self-advocacy organisations. The relative silence and lack of involvement of organisations such as the Down’s Syndrome Association, Down Syndrome Education International and Mencap in the development of the Bill also raises further concern.

If the Down Syndrome Bill is to make a positive difference to people’s lives and for us to, we need to affirm that it will provide the resources to ensure the end to segregated education, long term support into employment, support for housing and social care to allow lives as independent as possible, and appropriate healthcare when needed – all this ideally in a combined strategy for all disabled people, as there is no privilege or priority for services here. Without this clarity of purpose and support garnered from a wider range of people, then this Bill will, rightly, flounder. 

Dr Kieron Smith

*Kieron has also written an open letter about the Bill

The Down's syndrome Bill, a legal analysis by barristers, Victoria Butler-Cole, Steve Broach, and Nyasha Weinberg

There is a significant gap between the apparent ambitions of the Down Syndrome Bill and its actual contents. 

The long title of the Bill says it is ‘to make provision about meeting the needs of persons with Down syndrome and to place a duty of local authorities to assess the likely social care needs of persons with Down syndrome and plan provision accordingly and for connected purposes’

However the actual content of the Bill is much more limited. Pursuant to clause 1(1), the Secretary of State (“SoS”) must give guidance to ‘relevant authorities’ on steps it would be appropriate for them to take to meet the needs of persons with Down syndrome in the exercise of their ‘relevant functions’. As a result of clause 1(2), relevant authorities must have “due regard” to the guidance. In preparing the guidance, the SoS must consult such persons as considered appropriate (clause 1(3)). Clause 1(4) gives the SoS powers to publish the guidance in the manner deemed appropriate and following 1(5) further powers to revise the guidance “from time to time”. The Schedule to the Bill sets out the ‘relevant authorities’ and ‘relevant functions’ in relation to the bill, including a wide range of public bodies and functions. 

Barristers Steve Broach, Victoria Butler-Cole QC, Natasha Weinberg

As such, the substance of the Bill is limited to a legislative intervention to secure the publication of guidance by the SoS specifically for persons with Down syndrome. In this way, it offers an opportunity to draw specific attention to the particular needs of this group. However, the Bill does not impose any new legal obligations on any public authority, such as ‘to assess the likely social care needs of persons with Down syndrome and plan provision accordingly’, as the long title suggests. Nor could any new legal obligations be imposed by the guidance to be issued under clause 1(1); guidance can only guide the exercise of legal duties, it cannot create new ones.

It is wholly unclear to us why the SoS needs a new Bill to be able to issue guidance. All of the relevant Acts have guidance-giving provisions; for example section 77 of the Children and Families Act 2014 in relation to the SEND Code of Practice or section 78 of the Care Act 2014 in relation to the care and support statutory guidance. It seems to us that if the SoS wishes to give guidance to public bodies in relation to the needs of people with Down syndrome (or any other group), he can simply amend these guidance documents to do so. 

Lacking specificity

Further, the Bill is lacking in specificity as to the contents and form of any such guidance. For example, unlike equivalent Bills (such as this draft NI Assembly Private Members’ Bill on autism) it does not set out the need to draw from best international practice, nor the need to take into account the individualised needs of persons with Down syndrome. The bill does not link to any wider strategic aims for SEN policy or require periodic evaluation of the success of any guidance.  

The second clause, requiring relevant authorities to have “due regard” to the guidance does not go beyond what would be required of relevant bodies in relation to any departmental guidance in any event. The obligation to have “due regard” is not particularly stringent, and will not offer a guarantee of service provision, merely appropriate consideration of whatever the guidance ultimately says. The courts have repeatedly made clear that having “due regard” to something is not the same as having to do what it says.

Whatever other value the Bill may have, for instance in the political arena, it is clear to us that it lacks any legal substance. 

Victoria Butler-Cole QC, Steve Broach, Nyasha Weinberg of 39 Essex Chambers

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