Why the Down Syndrome Act ‘call for evidence’ is also relevant for people with other genetic conditions

Government consultations are like buses. No sooner has one gone by, than another arrives. In the same week the SEND Review consultation closed, the Department for Health & Social Care (DHSC) has published a Call for Evidence for guidance arising from the Down Syndrome Act 2022. The Act, which received Royal Assent in April this year, is to improve access to services and life outcomes for people with Down syndrome living in England.

There is a requirement for the Secretary of State to consult widely before producing the Down Syndrome Act guidance. Following this initial evidence-gathering stage, the DHSC will produce a draft set of guidance, which will be subject to a public consultation process in due course. You might think that if you do not have, care for, or work with a child or young person with Down syndrome you can stop reading now… However, the Call for Evidence has a much wider scope, so please bear with me.

A hierarchy of disability

Although Liam Fox MP’s Private Member’s Bill progressed through the House of Commons with cross-party support, it faced a range of challenges once it reached the 2nd reading in the House of Lords. During this scrutiny, concerns were raised over whether the proposed legislation might inadvertently create a 'hierarchy of disability' or privilege one genetic condition over another. As a result, Health Minister, Gillian Keegan, agreed the government would consider whether the guidance could also have benefits for people with other genetic conditions who might have similar needs. These people may also require the coordinated support of health, social care, education and other local authority services. So, the DHSC Call for Evidence also asks for contributions from people with other genetic conditions and their families and carers too, to ascertain whether the guidance should be wider in scope.

WHo's being asked for evidence?

The call for evidence has a different set of questions for:

  • People with Down syndrome
  • Families and carers (of both people with Down syndrome and other genetic conditions)
  • Professionals
  • People with other genetic conditions, including a learning disability

An Easy Read version of the Call for Evidence is also available.

So, what is this Call for Evidence all about?

The Down Syndrome Act sets out specific areas that ‘relevant authorities’ will have to pay ‘due regard’ to when the final guidance is published, namely:

  • Health
  • Social Care
  • Education & Youth Offending, and
  • Housing

While the Call for Evidence naturally comprises of questions relating to these four specific areas, they're split up slightly differently. As previously discussed on Special Needs Jungle, the Down Syndrome Act guidance will need to work within the wider SEND and Alternative Provision Review Green Paper, as well as children’s social care reforms following the independent review of children’s social care, published on 23 May 2022.

As a result, this Call for Evidence does not set out detailed questions about either education or children’s social care, as these will be the over-arching pieces of legislation which will shape provision that will be available to children and young people with Down syndrome.

Therefore, the Call for Evidence is split into four main sections:

  1. Health services
  2. Adult social care
  3. Housing
  4. Education and children’s social care (fewer questions)

There are two final questions that also provide the opportunity to comment on what else you might like to see in the Down Syndrome Act guidance (eg employment), and anything else you would like to feed back in relation to the guidance. It is within these final two questions that you can provide more detailed feedback and evidence relating to education and children’s social care.

Importantly, The Down Syndrome Act clearly sets out the relevant authorities and functions for which guidance is required. In other words, the things professionals need to pay attention to. Although the DHSC Call for Evidence suggests additional areas might also be included within the guidance, it is unclear what legal status these areas might have within the guidance. This is hopefully to be made clearer within the next stages of the DHSC’s public consultation process.

Image of part of the Easy read document saying it's for people with DS and other genetic conditions

How do you respond to the Call for Evidence?

The easiest way to participate in the call for evidence as an individual is by completing the public survey. However, you may find the questions don't give you the chance to provide the evidence you'd like to submit. If you prefer, you can send a written submission (in Word or PDF format, maximum 10 pages) via email to dsactguidance@dhsc.gov.uk. The DHSC has also said it will be engaging with people directly through workshops and focus groups during this timeframe – details of these are not yet available though.

For many people with Down syndrome and maybe also their families, the request to engage in a Call for Evidence might be a new and unfamiliar experience, though many of you will have no doubt engaged in the recent SEND review process, which was considerably more complex.

To help you engage in this process, over the coming weeks the Down’s Syndrome Association and other support groups will be publishing information and running events to help people with Down syndrome and their families/carers understand the process and how to get their views across. The Down’s Syndrome Association has a dedicated webpage about the Call for Evidence, which includes some Frequently Asked Questions.

Carol Boys, Chief Executive from the Down’s Syndrome Association says

"We want to ensure our members and the wider Down’s syndrome community are aware of the Call for Evidence and understand how they can respond. We have been engaging with DHSC officials for several months and will continue to do so during the Call for Evidence. We will work with a range of stakeholders (including our members, local groups and partner organisations) to ensure our call for evidence response is robust, evidence based and reflects the needs and diversity of all people who have Down’s syndrome."

Carol Boys, Chief Executive from the Down’s Syndrome Association

Don't give up

Whilst we might all be feeling a little burnt out and sick of consultations, it really is important that a wide range of views and experiences are shared with the DHSC. This applies particularly to those families whose children and young people with Down syndrome might have more complex health and care needs, and families who are in minority groups, who we know can sometimes feel excluded from these consultation processes. Hopefully, the DHSC will be pro-actively engaging with all groups during this Call for Evidence process and the events they are running.

The Call for Evidence runs for 16 weeks and is open to everyone. It closes at 11.45pm on 8 November 2022, so you can enjoy the summer holidays before having to worry about responding to this consultation, there is no immediate urgency. Have a great summer!

(SNJ note: don't forget there is also the Annual Review timescales consultation and the Ofsted Area SEND Inspections Framework consultation too!)

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Sharon Smith

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