We're delighted that Sharon Smith, Parent advocate and PhD researcher, University of Birmingham has joined us as a regular columnist.
Recently, you may have seen celebrations across social media platforms about the new Down Syndrome Act (2022), which has received Royal Assent. This new legislation, which originated from a Private Members Bill introduced by the Rt Hon Dr Liam Fox, has come in with immediate effect, though the impact of its introduction is not yet known.
The main thrust of the Act is that the Secretary of State is required to produce guidance for authorities to pay ‘due regard to’ when fulfilling their functions for people with Down syndrome, in relation to a range of primary legislative frameworks. This includes the Children & Families Act 2014 (part 3), which of course is the focus of the current SEND Review and Green Paper consultation.
Although the Act came into force immediately, the guidance that is necessary for it to have any impact at all has not yet been written. The Department of Health & Social Care (DHSC) will be undertaking a wide consultation, engaging with a range of stakeholders, which will include people with Down syndrome, those with other genetic conditions, disabilities and protected characteristics, and their family members/advocates. This will inform what should be included in this guidance in its initial iteration. The guidance will also be updated in the future. This consultation has not yet been announced, but is likely to be imminent.
It's useful to consider how this new Act, its guidance, and the SEND Green Paper might interact. This is especially important as both involve public consultations, which will possibly overlap in duration. While I am not a lawyer (ie. this is me setting out my disclaimer before you read on!) I have attempted to unpick some of this by drawing on the detail that is available within the Down Syndrome Act 2022 itself and the additional commitments made by Ministers.
What's the scope of the Down Syndrome Act?
The Down Syndrome Act 2022 can be accessed online. As you will see, it is a short document that is nowhere near as comprehensive as, say, the Children and Families Act 2014. Indeed, it is anticipated that the detailed "meat" will be added to the bones of the Act through the guidance, which the Act requires the Secretary of State to produce:
‘the Secretary of State must give guidance to authorities on steps it would be appropriate for them to take in order to meet the needs of persons with Down syndrome in the exercise of their relevant functions’.Down Syndrome Act 2022
The guidance sets out how a range of bodies should exercise their statutory functions in relation to existing legal frameworks, to meet the needs of people with Down syndrome. The Act prescribes the areas for which the guidance must relate, set out under several headings:
- National Health Service,
- Social care,
- Education, and
- Youth offending
The aim of the guidance is to set out how a range of bodies should exercise their statutory functions in relation to existing legal frameworks, to meet the needs of people with Down syndrome. The Act prescribes the areas for which the guidance must relate, set out under several headings: National Health Service, Social care, Housing, Education and youth offending. The authorities specifically listed within each section will then need to have ‘due regard’ to the guidance when exercising their functions in relation to the various named pieces of primary legislation listed under each of these specific areas.
One of the pieces of legislation mentioned is Part 3 of the Children & Families Act 2014. Interestingly, this is only specifically listed under the Social care and Education and youth offending headings - it is not listed within the section of the Act that relates to the National Health Service. It is unclear if this is intentional or an oversight. It is also unclear what the implication of this might be for joined up working between education, health and care services as per the Children & Families Act 2014 if the National Health Service is not required to have due regard to the guidance when undertaking their duties within this legal framework.
So where is the overlap?
Children and young people with Down syndrome are not a homogenous group and they will have a variety of abilities and will face a range of different challenges. There are some features of Down syndrome that affect learning – to a greater or lesser degree – for instance cognition, memory, speech, language and communication, vision and hearing, motor skills development, and of course a range of health conditions. As such, most – if not all - children and young people with Down syndrome will have special educational needs and they are likely to have an Education, Health and Care plan issued under the Children & Families Act 2014. People with Down syndrome are also recognised as disabled within the scope of the Equality Act 2010.
Here is a quick first stab at some of the similarities and differences between these pieces of legislation:
Children & Families Act 2014 – part 3
- Birth – 25 years
- England only
- All children and young people with Special Educational Needs and Disabilities (0-25)
- Makes provision about children, families, and people with special educational needs or disabilities
- SEND Green Paper consultation launched 29 March 2022, closes 22 July 2022
- Consultation run by Department for Education and Department of Health & Social Care
Down Syndrome Act 2022
- Down Syndrome Act 2022
- All ages from birth
- England only
- Only people with Down syndrome (though others might benefit from the guidance)
- Requires guidance to be produced, which authorities need to have due regard to
- Consultation scope and period to be confirmed, though expected shortly
- Consultation run by Department of Health & Social Care
Rights of redress for the Down Syndrome Act
It should be noted that the Act itself does not bring additional recourse for children and young people with Down syndrome or their families, ie to enforce the guidance once it is produced.
However, there has been a formal commitment by Ministers to have a named lead person sitting within each area's NHS Integrated Care System (ICS) (ICSs are replacing the current method of NHS commissioning). Their role will be to ensure the guidance is followed. This role will be established via statutory guidance under the Health and Care Act 2022. Integrated care systems (ICSs) are the new partnerships between organisations that meet health and care needs in a local area. It is unclear therefore how this person will link into education, youth offending and housing at this current time. It also has not been determined how families will link into this named person - who could be very busy indeed given some of the difficulties families currently face! It all feels a little bit disjointed currently, so all we can do is hope it comes together somehow in a way that is meaningful for families.
SEND Green Paper and Down Syndrome Act Consultations
As previously mentioned, to produce the required guidance the Secretary of State must undertake a wide-ranging consultation to inform its development, and once it has been published this guidance must be laid before Parliament. This latter point is important to note, as it means that Parliament will not necessarily be scrutinising the guidance before publication. This makes it even more important that as many perspectives and experiences as possible are included during the consultation phase, to ensure the guidance is meaningful for the wide range of abilities and additional needs that individuals with Down syndrome might have. It is unclear if or when parliamentary scrutiny might happen, for instance through one or more Select Committees, though of course any additional scrutiny is likely to be useful.
At the time of writing, it is also unknown exactly what shape the consultation relating to the Down Syndrome Act will take, as the Department of Health and Social Care have not yet published any information about it. Nor indeed do we know exactly what will be included within the final guidance that the relevant authorities will need to have due regard to in the exercise of their relevant functions, because this will follow the consultation procees. The government are likely to want to undertake a full and wide consultation that will allow for meaningful responses though, given the High Court ruling about the Disability Strategy consultation.
So currently all we do really know is that:
- The Down Syndrome Act requires a set of guidance to be produced, which relevant authorities must have due regard to when exercising specific functions
- Part 3 of the Children & Families Act is one of the pieces of legislation that is mentioned in the Down Syndrome Act (specifically mentioned in relation to social care, and education and youth offending)
- The guidance will therefore advise on how the relevant authorities should exercise their functions within the Children & Families Act (part 3) for children and young people 0-25yrs who have Down syndrome
- The guidance will be produced after a consultation, which will be run by the Department of Health and Social Care. This consultation will need to allow for meaningful responses
- It is important that children, young people, and their families respond to both this consultation and the SEND Green Paper consultation.
To support children and young people with Down syndrome and their families to engage with both consultations, the Down’s Syndrome Association (amongst other organisations) will be running a range of events in the coming weeks. These will be designed both to understand the issues that matter most to people with Down syndrome and their families to shape their response to both consultations, but also to support people in understanding the specific implications of the proposals that have been made, so that they can respond to the consultations themselves as individuals or via local groups.
It is vital that the needs of children and young people with Down syndrome and their families are considered within the proposed changes to the SEND system, not just in the additional set of Down syndrome specific guidance that acts as an overlay. Therefore, it really is important that you engage with both the SEND Green Paper consultation and the Down Syndrome Act guidance consultation (once it comes out).
The Down’s Syndrome Association have already put out a statement about the SEND Green Paper, drawing on the priorities that young people with Down syndrome have told them about, however they will be building on this in the coming weeks with additional briefing papers and information. Watch this space…
- The parables of SEND: Is it more like ‘the drowning man’ or ‘the tree and its fruits’? - September 22, 2023
- Uncovering the origin of the evil EHCP ‘Golden Ticket’ Narrative - July 13, 2023
- How H&M and WorkFit helped my daughter who has Down syndrome gain purposeful, paid experience of work - June 16, 2023