Down Syndrome Act 2022: Understanding the Guidance and the Fight for Progress

EXTRA: includes an overview of other notable issues debated in the Commons recently.

The Down Syndrome Act 2022 aims to ensure public authorities in England, like the NHS, social care, education, and housing, meet the specific needs of individuals with Down syndrome. This episode delves into the crucial guidance associated with the Act, exploring its purpose and the reasons behind its necessity. We discuss why this guidance is specifically focused on Down syndrome, rather than all learning disabilities, to address the unique health, social care, and educational requirements.

Discover the key areas where this guidance is expected to make a real difference, including improved healthcare outcomes, inclusive education practices, and better access to housing, social care, and employment. We examine the current status of the guidance and the reasons for the significant delays in its publication, despite the Act becoming law in 2022.

Key Takeaways:

• The Down Syndrome Act 2022 intends to ensure public bodies meet the specific needs of people with Down syndrome.
• Specific guidance is needed to translate the Act into practical actions, ensuring respect and dignity across services.
• The guidance is intentionally focused on Down syndrome, not broader learning disabilities, due to the unique needs of individuals with Down syndrome.
• The guidance aims to improve outcomes in healthcare, education (promoting mainstream inclusion), housing, social care, and employment.
• The publication of the guidance has been delayed, with a new target set for the summer, due to complexities and stakeholder consensus-building.
• Concerns exist regarding the level of engagement with Down syndrome-specific organisations in the guidance's development.
• The implementation of accountability measures, such as ICB executive leads for Down syndrome, has been slow.
• There are ongoing pushes for the guidance to explicitly include the requirement for Down syndrome-specific training for professionals.
• The government has stated its commitment to the Act and plans to consult on the guidance by the summer.

Source:

Chapters

• 1:23 Why the Act is specifically for Downs Syndrome.
• 3:23 Positive changes for healthcare?
• 4:12 Inclusive environments for education
• 5:06 Barriers to employment
• 6:08 Delays to implementation
• 7:19 Key stakeholders involved
• 9:00 Accountablity at board level
• 10:30 Training for professionals
• 12:03 Government's overall commitment
• 14:19 Conclusions
• 14:48 Notable other debates in the Commons!

Transcript

Welcome to the bench report, UK politics straight from the benches. Straight from the benches indeed. We are your hosts, Amy and Ivan. And today, a topic very, close to the heart of our producer, Tom. Yeah.

So we are doing a deep dive today into the Down Syndrome Act 2022. Became law in 2022. Yes. It did. And, this is a piece of legislation that is aiming to ensure that public bodies in England, and we're talking, you know, the NHS, local councils, providing social care schools, even housing authorities, that they are specifically addressing the needs of individuals with Down syndrome.

And this guidance you see is going to tell those organizations how to do it. That's right. Because it became law in 2022. It did. But the key element now is the guidance that will tell these organizations how to put the act into practice.

Right. And you might wonder why single out Down syndrome. Yeah. That's a good question. Good question.

The core rationale is to make certain that the act's intentions actually result in improvements in people's lives. Right. And it's a really practical manual for these organizations. It is a practical man. That's what this guidance is gonna be.

It is. So without it, there's a real danger that their distinct requirements could be overlooked. Overlooked. Exactly. So in our discussion today, we're going to explore why this act is so important and what real world impact it's expected to have for people with Down syndrome across The UK.

Let's start by understanding why the act and its guidance are specifically for Down syndrome rather than encompassing all learning disabilities. Right. Well, the interesting thing here is the clear intention of parliament. Okay. The act was deliberately crafted to focus on the unique needs of individuals with Down syndrome.

And while individuals with Down syndrome may have learning disabilities, Down syndrome itself is not classified as a learning disability. Right. It's a specific genetic condition. It is a specific genetic condition, and it often presents with a particular set of health and developmental considerations. So it's about targeted action, making sure the focus isn't diluted.

Exactly. The concern is if the guidance tries to be everything to everyone, it could actually weaken its ability to address the very specific needs. Of people with Down syndrome. Of people with Down syndrome, exactly. Think about it like writing a recipe that caters for every dietary restriction.

Right. The more general it becomes, the less effective it is for specific needs. So how do we address the needs of other people with learning disabilities without muddying the waters of this specific guidance? Well, there has been this strong push for a supplementary document to address the broader spectrum of learning disabilities Okay. So that the Down Syndrome Act can remain sharply focused and therefore more effective in achieving its goals.

So two separate pieces of guidance. Exactly. Got it. And Jack Rankin, MP, made this really compelling argument in parliament He did. Where he was saying that actually, civil servants might be tempted to just put it all together.

Take the easy life. Yeah. Which goes against what parliament intended. Indeed. And he said doing that would undermine the act's purpose.

Yes. He even appointed to the department's own call for evidence, which revealed that the needs of individuals with Down syndrome are in fact distinct and were identified as such through that consultation process. He was very clear that to broaden the guidance would defeat the object of the act. Absolutely. Okay.

So given this specific focus, what kind of positive changes can we anticipate? Well Where are we likely to see the most significant improvements as a result of this act? Well, I think it's fair to say that this guidance is designed to improve outcomes for people with Down syndrome across several vital areas Okay. Of their lives. Let's start with health care.

Health care. Okay. Well, the hope is that the guidance will lead to a deeper understanding within the NHS of the specific health risks and needs associated with Down syndrome. Okay. So for example, many individuals with Down syndrome have a higher incidence of certain conditions.

Like congenital heart conditions? Congenital heart conditions. Absolutely. In fact, Ashley Dalton, MP, highlighted that almost half of children with Down syndrome are born with a heart condition. Wow.

And the guidance should also emphasize the need for ongoing support in terms of speech, hearing, and vision. Right. All of which are frequently important aspects of care for individuals with Down syndrome. Thanks, Seth. This specific guidance will equip health care professionals with the knowledge to provide more tailored and effective care.

Okay. And education, another really critical area Education. Yeah. Where this guidance is expected to make a difference. Absolutely.

The aim here is to foster more inclusive educational environments. Right. The concern at the moment is that individuals with syndrome are sometimes automatically directed towards specialist schools. Okay. Even when mainstream education could be more beneficial for their development and social inclusion Right.

Jack Rankin, MP, noted that currently only about twenty five percent of individuals with Down syndrome attend mainstream secondary schools. Really? So the guidance is intended to promote a shift towards more inclusive options to ensure that the default is integration wherever appropriate. So it's about ensuring equal opportunities for learning and growth alongside their peers. Absolutely.

And the impact extends beyond just health and education. Okay. It also aims to improve social care provisions, housing options, and very importantly, employment opportunities. Current employment statistics make for pretty sobering reading. Yeah.

Jack Rankin, MP, cited an alarmingly high unemployment rate of ninety four percent amongst individuals with Down syndrome. Wow. So the expectation is that the guidance will support better access to appropriate support services and help to address these significant employment barriers. Yeah. To promote greater independence and fulfillment.

Kind of fulfillment. Exactly. And Ashley Dalton, MP, also raised a really important point about the increasing life expectancy for people with Down syndrome. She did, and that's a crucial demographic shift to consider. Right.

As people with Down syndrome are living longer lives, there's a growing need for appropriate support in their later years, including managing age related health conditions and ensuring access to suitable social care services. Right. So the guidance needs to take these evolving needs into account It does. To provide comprehensive support throughout their lifespan. Exactly.

This guidance clearly has the potential to bring about some really significant positive change in many areas. It does. But we know there have been delays in its publication. There have What's the current situation? Well, that raises a really important question regarding the timeline.

Yeah. The Down Syndrome Act became law in 2022. Yeah. But the associated guidance has faced several postponements. It was initially expected by Easter of this year, but the current target is now sometime in the summer.

So what are the reasons behind these delays? Well, the government has publicly stated its commitment to the guidance Okay. And assures us that significant work is being done. Okay. But the delays appear to stem from the complexities involved in achieving consensus amongst a diverse group of stakeholders Right.

On the specifics of the guidance's content, and there have also been concerns raised about the level of priority this matter has been given within the government's agenda. Well, Jack Rankin MP has been quite vocal about his frustration with these repeated delays. He's expressed considerable frustration stating that parliament has made its will clear with the passing of the act and that officials should now proceed without further delay in publishing the necessary guidance. Right. These postponements have caused concern and disappointment within the Down syndrome community.

Absolutely. And it really highlights the challenge of translating legislation into practical action even when there's broad agreement on the underlying principles. It really does. So let's delve a bit into who's been involved in shaping this guidance. Okay.

It's not just solely government officials working on this, is it? That's right. The development process has included a national call for evidence. Right. And that was designed to gather insights and perspectives from a wide range of individuals and organizations.

Okay. Partner working groups were also established to contribute specific expertise, and existing research and data has been reviewed to inform the guidance. But there have been some concerns raised about the representation of specific groups in this process. There there are worries that organizations specifically focused on Down syndrome Yeah. Those with the most direct experience and expertise in this area Yeah.

Have had limited representation within the key stakeholder groups Okay. Involved in developing the guidance. Right. Jack Rankin, MP, pointed out that only three of the 11 key stakeholder groups primarily focused on Down syndrome. Gosh.

That does seem like a potential blind spot in the development process. It does. And there have been calls for greater and more meaningful engagement with crucial organizations Yeah. Such as the National Down Syndrome Policy Group and the all party parliamentary group on Down Syndrome. Right.

There have even been reports that requests for meetings from these groups have been turned down. Oh, that's troubling because if the aim is to produce effective and relevant guidance Yes. Surely the input of those with the deepest understanding is absolutely essential. It is. And Jack Rankin, MP, even highlighted that the civil service has, in their own communications, acknowledged a degree of uncertainty regarding the specific needs of individuals with Down syndrome.

Oh, well. So this makes the reported lack of engagement with specialist organizations Yes. Even more perplexing and concerning. Really does underscore the importance of listening to lived experience and specialist knowledge. Absolutely.

And Jack Rankin, MP, emphasized that in his remarks about the campaigner, Emiliana. Yes. Yeah. He did. The act itself, though, includes some mechanisms for ensuring accountability, doesn't it?

It does. How are those being put into practice? Well, the Down Syndrome Act mandates that each integrated care board or ICB Right. And these are the local NHS bodies responsible for planning and delivering health care Yes. In England, must appoint a board level executive lead for Down syndrome.

Oh, okay. And this individual is intended to be directly accountable for ensuring that the ICB fulfills its obligations under the act. That sounds like a positive step towards making sure things happen at a local level. It does. But is it proving effective in practice?

Well, that's where the concern lies. Okay. The implementation of this key accountability measure appears to be progressing very slowly. Okay. Jack Rankin, MP, referring to information from Graham Stewart, MP, indicated that there are only three identified leads Wow.

For the 42 ICBs across England. That's a surprisingly low number. It is a surprisingly low number. Yeah. So it suggests that this crucial element of accountability isn't being implemented effectively across the country.

It isn't. Because without these designated leads in place Yes. It becomes significantly more challenging to ensure that the act's requirements are being met and that the needs of individuals with Down syndrome are being adequately addressed at a local health care level. Absolutely. And Jack Rankin MP used strong words describing this slow progress as an affront to the democratic process Wow.

Highlighting the disconnect between the legislation and its practical application. It paints a picture of a gap between the law being enacted Yeah. And its tangible impact on the ground. It really does. So another vital aspect of support is the training that's provided to professionals.

Yes. What's the current situation regarding training, and what changes are being advocated for? Current legislation requires health care providers registered with the Care Quality Commission CQC. The CQC. That's right.

The independent regulator of health and social care in England Yeah. To ensure their staff receive appropriate professional development. And this includes training on learning disability and autism Where it's relevant? Where it's relevant to their roles. Okay.

So there's already a framework for training in related areas. There is. But the current push? The current push is for the Down Syndrome Act guidance to go further Yeah. Okay.

And explicitly mandate Down Syndrome specific training Okay. For professionals who directly work with individuals with the condition. Right. Because the argument is, while general training on learning disabilities is valuable, it may not adequately cover the unique health communication and developmental aspects. That are associated with Down syndrome.

Associated with Down syndrome. That's right. So general training might not equip professionals with the specific knowledge needed Exactly. To provide the most effective support Exactly. For individuals with Down syndrome.

The government has stated that officials will collaborate with stakeholders to effectively signpost Right. The need for this specific training within the upcoming guidance. Okay. However, many advocates are pushing for a more explicit and mandatory requirement. Right.

Rather than just a suggestion or a signposting. Exact. It will be interesting to see the precise wording It will. And strength of that recommendation in the final guidance. It will indeed.

So finally, let's consider the government's overall commitment to the act and what further actions are being requested. Okay. The government has affirmed its commitment to the full implementation of the Down Syndrome Act and to ensuring that individuals with Down Syndrome receive the necessary care and support. Okay. They've also announced plans to conduct a public consultation on the draft guidance by the summer Right.

Providing an opportunity for feedback from the community and other stakeholders. So that consultation is gonna be a crucial stage. Absolutely crucial. In ensuring that the guidance is fit for purpose. It is.

And beyond this, there are ongoing calls for several key actions. There are. First off, as we discussed, for the guidance to maintain its specific focus on Down syndrome. Yes. Secondly, for a clear and definitive timeline for the guidance's publication.

To avoid further delays? Yes. Thirdly, for a direct meeting between representatives of the Down syndrome community and the secretary of state for health and social care Yes. To address concerns and ensure that communication is open. Yes.

And finally, for more effective and meaningful engagement with Down syndrome specific organizations throughout the remaining stages of the guidance development. Absolutely. So Jack Rankin MP specifically urged the minister to commit to arranging that meeting with the secretary of state. He did. And Sir Liam Fox MP has also taken action by requesting a formal inquiry by the health and social care committee Right.

Into the reasons behind the delays in publishing the guidance. Okay. Jack Rankin, MP, also highlighted the absence of the minister responsible for this policy area from both this recent debate and a previous debate, which I think underscores the level of concern in parliament. Absolutely. But Ashley Dalton MP did offer reassurance that the guidance will indeed be specifically focused on Down syndrome.

That's good. And that there's an intention to include references to broader potential benefits without diluting the primary focus. And she also confirmed a commitment to ensuring direct access and appropriate support for people with Down syndrome to actively participate in the upcoming consultation process. Absolutely. So lots of interconnected aspects to this, but a clear sense of the profound importance of getting this guidance right for the Down syndrome community.

A huge piece of work. It really is. That clearly still demands significant attention and proactive measures to realize its full potential. It's about translating the fundamental principles of the act into tangible improvements in the daily lives of people with Down syndrome across England Exactly. When they have the opportunities and the support they need to thrive.

Precisely. A vital piece of work that clearly still demands significant attention and proactive measures to realize its full potential. It does. Please subscribe to the bench report to spark your passion. Stay informed and change the world.