Update: Results of Parliamentary Debate on the Down Syndrome Act
Three years after the Down Syndrome Act 2022 received Royal Assent, the DS community are still waiting on guidance to be issued from the government to help turn unmet needs into support. Hope has been renewed that we will see progress soon, after a debate just held on 19th March 2025 in Parliament. The debate brought forth a chorus of united calls from MPs for swift and specific implementation of the Act.
Why has there been a delay?
So far, drafts of the guidance have been produced which have been inadequate, stalling progress. Sir Liam Fox, who introduced the Act as a private Member’s Bill, recently wrote to the Chair of the Health and Social Care Committee to bring attention to the lack of forward movement and engagement:
“When the House of Commons unanimously passed the Down Syndrome Act, it felt like a real dawn had arrived for those with Down Syndrome and their families. We were promised new government guidelines covering health, education and social care that would phenomenally improve service provision and provide accountability to service users … Despite repeated promises we have not yet seen the formation of an effective cross Ministerial task force … Now, three years after the legislation reached the statute book, this is completely unacceptable.”
The delays have been somewhat hard to explain given the extent of support for the Act. There is concern among MPs that behind the scenes, the Down Syndrome Act – the first piece of legislation of this kind globally – is being used as an umbrella for other interests that do not fit the same profile. This has complicated the process unduly and blurred the focus on Down syndrome. It’s a sensitive subject: this Act was directly intended to meet the needs of tens of thousands of people affected by the most common genetic syndrome, but doesn’t imply that other conditions deserve less support. However, if the focus of this Act is overstretched to include other conditions, we are likely to end up with vague generalised guidance that fails to clarify the unique needs of the DS community.
What did the debate clarify?
Ten speeches were made, each deeply supportive of the implementation of the Act. Seven of these speeches directly called for assurances that the guidance will be specific to Down syndrome. Among them were Andrew Cooper, MP, who noted:
“… there are concerns that the current draft of the guidance does not reflect the original intent of the Act and lacks the Down syndrome-specific focus in line with the Government’s statutory duty … The Down Syndrome Act and its guidance offer an incredible opportunity to improve outcomes for people with Down syndrome, but we must ensure that the guidance reflects the specific needs of the community it aims to serve.”
Bobby Dean, MP gave voice to his constituent Lucienne (from the NDSPG):
“It is fitting to give the last word to Lu, and these are the questions that she wants to ask the Minister. What is happening with the guidance, and why the delay? … Lu wanted to labour the point about the specific learning profile that requires specific interventions. She asks, “What is the point in a Down Syndrome Act if it is not specific to people with Down syndrome?”
This concern to protect the precise focus of the Act was voiced repeatedly throughout the debate. Requests for commitment to a timeline of action were also made frequently.
What can the DS community expect now?
Karin Smyth, Minister for Secondary Care, standing in for the Minister for Care, Stephen Kinnock, acknowledged the urgent need for progress and stated that there is “intention to put the guidance out for consultation by the summer”.
Jen Craft, MP and mother of a child with DS, gave an inspiring speech and rallying call of encouragement to anyone affected by Down syndrome.
“Happy World Down Syndrome Day—I love all of you [DS organisations and community]. If anyone is ever worried about what the future looks like, come and talk to me, or to any of us, because we can tell you that it is not just going to be okay; it is going to be brilliant.”
In union with every person with Down syndrome who has been calling out for the provisions of this act, we sincerely hope to see the Down Syndrome Act move to the next stage of implementation soon, to play its important part in this brilliant future.
Live Researcher Chat
Dying and End-of-Life Care Planning
We are delighted to announce that we will very soon have the opportunity to speak with guest researcher Professor Irene Tuffrey-Wijne, the world’s first professor of Intellectual Disability and Palliative Care (Kingston University London). We welcome you to join us on Wednesday 5th March at 6pm GMT for this live discussion between Professor Tuffrey-Wijne, and our Chair, Dr Elizabeth Corcoran.
End-of-life concerns are a sensitive subject, presenting realities that can be hard to think through and plan for. Very little research to date has been carried out in this area, especially with regards to people with Down syndrome and other intellectual disabilities. However, there are signs of change through some wonderful initiatives like the Victoria and Stuart Project, a pioneering program investigating how to help people with intellectual disabilities make their own choices at the end of life. The project aims to make sure that people with learning disabilities get the right care and support when they are ill and going to die, working with lots of people to try and get this right. The Victoria and Stuart project is named after two people who inspired the initiative through the example of their own plans for end of life care.
Prof Tuffrey-Wijne leads a team of researchers, including members who have intellectual disabilities. This team has created a toolkit together with people with learning disabilities, families, learning disability support staff, and healthcare professionals, including resources and approaches to support staff with end of life care.
We look forward to hearing much more about this project and how resources like this can help the Down syndrome community in planning for end of life care.
You can watch live at the link below on Wednesday 5th March at 6pm GMT: http://www.facebook.com/DSRFUK/live_videos/
We look forward to joining you then!
Get involved to express your concerns about the Assisted Dying Bill before it becomes law
What happened with the recent debate and vote on the Assisted Dying Bill?
Kim Leadbeater’s Terminally Ill Adults (End of Life) Bill (often referred to as the Assisted Dying Bill) has passed its second reading in the House of Lords on 29th November 2024, and has now been sent to a Public Bill Committee for further scrutiny. Euthanasia is rapidly moving closer to becoming legal in the UK, but it is vitally important to note that nothing is yet inscribed in law and there is an important chance for your voice to be heard on this matter.
You can see the current stage of the Bill here, and track the upcoming stages before it will become law:
https://bills.parliament.uk/bills/3774
Why is DSRF UK expressing concern that the Bill is moving to the next stage after MPs have voted?
DSRF UK has a number of concerns about the Bill, which are echoed by many other organisations working with people who have intellectual disabilities. An especially grave concern has been flagged about issues of consent that will likely unfold if this Bill becomes law. The Royal College of Psychiatrists have highlighted these issues in their statement:
We cannot afford to let these concerns (and other issues mentioned in our recent blog) become minimised. It is important to speak up for our community and for those who are likely to have less of a voice in the decision making process.
How to find out which way your MP voted and contact them with concerns
The public results of the vote and the position taken by MPs is here:
Please do reach out to your MP, especially if they voted in favour of this Bill. Your concerns and evidence will help inform them: they are elected to represent the issues that matter to you.
If your MP voted against the Bill, please consider writing to thank them for taking these serious concerns into account.
You can find your MP here on the UK Parliament’s MP Finder tool:
https://members.parliament.uk/
Pioneering Change: Why We Must Support the NC34 Amendment for #EqualityAt24 Weeks
At the Foundation, our vision extends beyond research and into the heart of societal equality. We are at a critical juncture where your support can make a monumental difference. The new proposed NC34 amendment seeks to challenge and change how our laws differentiate between fetuses diagnosed with Down syndrome and those without after 24 weeks of gestation.
The Issue at Hand
Under current UK abortion law, the rights of a foetus without a disability are protected beyond 24 weeks of gestation. However, a foetus diagnosed with Down syndrome can be legally aborted up to birth. This distinction not only undermines the value of those with Down syndrome but perpetuates outdated stereotypes and discrimination.
The NC34 Amendment
The NC34 amendment, proposed by Sir Liam Fox MP, aims to rectify this inequality by ensuring that foetuses diagnosed with Down syndrome are afforded the same protections as their peers beyond 24 weeks. This amendment is a vital step toward equality and reflects our values as a society that respects and upholds the rights of all individuals, regardless of their genetic conditions.
Why It Matters
Supporting the NC34 amendment is not just about changing a law; it’s about affirming the inherent dignity and worth of every individual with Down syndrome. It challenges misconceptions and combats the stigma that has long surrounded this community. It aligns with our commitment at the Foundation to advocate for the human rights of people with Down syndrome and their families.
A Call to Action
We urge you to join us in this crucial campaign. Reach out to your MP and express your support for the NC34 amendment. Advocate for #EqualityAt24 weeks to ensure that our laws reflect our principles of fairness and equality.
Your voice can drive change and encourage lawmakers to stand on the right side of history.
Conclusion
The passage of the NC34 amendment would mark a significant milestone in our ongoing fight for the rights and recognition of individuals with Down syndrome. Together, we can ensure that future generations will look back on this decision as a pivotal moment when equality was rightfully extended to all.
Join the Conversation and Act Now:
Now that our MPs are back in Parliament for the new session can we ask you to copy the text below and paste on your Social Media pages at 7pm tonight to get their attention about this important issue?
I support the #EqualityAt24 campaign – Dr Liam Fox MP’s #NC34 amendment which attempts to address an outdated and discriminatory practice associated with Down syndrome. If successful, it would mean that pregnant women will no longer be offered abortions after 24 weeks or later stages of pregnancy purely on the basis that the baby has Down syndrome.
Engage with us on social media, share our message, and encourage others to act. Visit our website to learn more about the NC34 amendment and how you can make your voice heard in this vital cause. Your support and activism are crucial in helping us bring about transformative change.
More details:
How you can support the cause:
- Write to your MP and surrounding MPs (see our template letter below) Find your MP – MPs and Lords – UK Parliament (Please copy in liam.fox.mp@parliament.uk and contact@ndspg.org)
- Consider posting a public statement or the press release below in support of the amendment (see NDSPG press release below)
- Circulate the template letter to your friends and invite them to email their MPs asap
- Support and share our social media campaign and share the posts from self-advocates telling us what they think of the law and NC34 Facebook Insta X/Twitter
Major Achievement – Down Syndrome Inclusion in the School Census
We are overjoyed to bring you a momentous update, a triumph achieved through the collective dedication of our National Down Syndrome Policy Group, the All-Party Parliamentary Group on Down Syndrome, and advocates like you. Beginning in January 2025, Down syndrome will officially be recognized as a separate category in the School Census.
What is the School Census?
The School Census is a data collection process conducted three times annually, involving primary schools, secondary schools, special schools, maintained nurseries, academies, and pupil referral units. This process is carried out electronically, and it’s important to note that private schools are not part of this data collection.
Why does this matter?
This achievement holds profound significance for our community in education provision and planning but will extend its reach even further. It also has the potential to enhance the health and well-being of children with Down syndrome.
This development provides a robust foundation for better support and resources for students with Down syndrome within educational settings. The unique learning profile of people with DS is well researched and documented by world leading experts. Many countries now have education guidance, for example DSEi and NDSS recent guideline release.
Importantly, it may also indirectly benefit their health in the following ways:
- Informed Healthcare Planning: Accurate data on the number and distribution of students with Down syndrome will contribute to more informed healthcare planning. This can lead to better access to specialized healthcare services, including early interventions and therapies that can positively impact the health of children with DS. Especially those with dual diagnosis, hearing and/or vision issues.
- Tailored Health Programs: The availability of precise data will enable the development of tailored health programs. These programs can address the unique health needs of children with Down syndrome, potentially leading to improved health outcomes.
- Increased Awareness: The inclusion of Down syndrome in the School Census raises awareness about the specific health challenges faced by these children. It can encourage healthcare providers to prioritize early screening, diagnosis, and intervention of other issues, all of which are crucial for managing potential health issues.
- Research Opportunities: Having accurate statistics can also spur research initiatives focused on improving the health and well-being of individuals with Down syndrome. This could lead to advancements in healthcare practices and therapies.
We invite you to join us in spreading this momentous news on social media today. Show your support by also following @APPGDS and @NDSPolicyGroup on Twitter and Facebook, and use the hashtag #DownSyndromeAct to amplify our message.
We extend our heartfelt gratitude to all the groups, individuals, and professionals who have been steadfast supporters of our cause. Your ongoing support continues to drive our mission forward, benefiting not only education but also the health of children with Down syndrome.
Thank you for being an integral part of our journey.
Obesity and Down’s Syndrome
GO-DS21 FINAL recruitment NOW!
Are you interested in making a meaningful difference in Down Syndrome research? Join the GO-DS21 study, a research project exploring the causes of obesity in people with Down Syndrome and understanding the impact of genetics on conditions related to Down Syndrome.
The GO-DS21 study is led in the UK by Professor Andre Strydom from King’s College London and Dr. Li Chan from Queen Mary University of London, both renowned experts in the fields of intellectual disabilities and molecular endocrinology and metabolism. Their primary goal is to uncover the complex connections between Down Syndrome and obesity, with the ultimate aim of improving the health outcomes of individuals with Down Syndrome.
In April Dr Corcoran from the Foundation had a chat with them on a Facebook live to better understand the study and how to get involved:
By participating in this study, you can help researchers gain a better understanding of the underlying genetic and biological factors that contribute to obesity and other conditions associated with Down Syndrome. This knowledge can then be used to develop new treatments and interventions that can improve the health and well-being of individuals with Down Syndrome but also others with Learning disabilities too.
To learn more about the GO-DS21 study and register your interest, visit their website at https://go-ds21.eu/. or email downsyndrome@kcl.ac.uk
Together, we can make a meaningful difference in the lives of individuals with Down Syndrome and their families.
Down Syndrome Innovation Conference 2023 -Special Offer for UK followers
We have partnered with the host of this conference, Down Syndrome Options, to invite parents and professionals interested in supporting individualised paths for optimal growth and development for children with DS, without discrimination or breaking the bank. It will be available via Live Stream with a discount code for our UK followers (discount code: UK100) book here.
What time is it showing in the UK?
Watching the Livestream of the conference will start at approx 12:45pm UK time until 22:00… but don’t worry you will have access to watch the conference live and later at your convenience as it will be recorded.
Who is speaking?
Rory Feek, Parent, Singer-songwriter
Rachel Coleman, Creator & Host of Signing Time!
Carol Brown, Executive Director, Equipping Minds, Cognitive Development Curriculum: a Foundational Tool for Learning
Lois Laynee, Founder, AZ Sleep Apnea Center, Optimizing Growth & Development with Cranial Nerve Integration
Dr. Theron Hutton, Parent, Pediatrician, Practicing Common Sense
Linda Kane, M.CND, Parent, Neurodevelopmental Therapist, Hope and a Future, Exploring Neurodevelopmental Therapy
Darcy Day, Parent, Spell to Communicate Practitioner, Hope for the Struggling Communicator
Dr. Erica Peirson, Parent, Naturopathic Physician, The Importance of Optimizing Gut Health. She has lectured nationally and globally sharing with others the many ways to optimize the health of people with DS. She sees patients from all over the world through her private, telemedical practice. She is also the proud mother of a healthy, thriving 15-year-old son who has benefited from her expertise.
Alissa Hodgson, Certified Functional Diagnostic Nutrition Practitioner, Board Certified Holistic Health Practitioner, Targeted Nutritional Intervention: the Science & Practical Application
Sarah Wilkinson, Parent, Chiropractor at Holistic Healing and Chiropractic Center, Synchronizing Options to Maximize Reflex Integration
Jane Winans, MA, Parent, Educational Coach, Victory Lap Mindset, Minimize (Parental) Meltdowns, Avoid Bankruptcy, & Find Humor in this Wonderful, Challenging Opportunity Called Life
Lydia Winans, Young Adult Self-advocate, Taking Charge of My Own Health & Fitness
Andi Durkin, Parent, Executive Director, Down Syndrome OPTIONs, Navigating through Crisis to Connection for Action
What if I want to go to the event in person?
The event is being held in Tennessee in the town of Columbia. Come to Homestead Hall, a charming refurbished farm at Hardison Mill, to hear dynamic practitioners, therapists, educators, and advocates share inspiration and innovative solutions to improve the health, cognition, sleep, and development of individuals with Down syndrome. Plus, enjoy heart-warming entertainment from our DS community including music from Rory Feek and a short, awarding-winning film, For Paloma written by April Aguilera, parent of a child with DS.
For those attending in person the conference will be from approximately 8 AM-5:30 PM on Friday and Saturday with lunch provided. Elyse Mundelein, Zumba instructor/adult with DS will lead us in fun movement breaks. You’ll also have plenty of time to check out the booths in the exhibit area that support these innovative strategies.
View the Facebook live video of Foundation chair Dr. Corcoran with Andi Durkin from Down Syndrome OPTIONs to discuss the upcoming 2023 Down Syndrome Innovations Conference on Feb. 24-25th which will be held in Columbia, TN but can be watched via Live Stream!
To book don’t forget the discount code for our UK followers (UK100) book here.
Don’t Miss the Boat!
The window of opportunity to input to the Government’s Call for Evidence (CfE) on the Down Syndrome Act is almost closed. The Department of Health and Social Care will close their CfE on 8th November. We strongly urge you to add your thoughts to their process. The CfE is online and can be accessed here . Easy Read versions here.
Alongside the Government’s evidence gathering, the National Down Syndrome Policy Group (NDSPG) is running its own consultation, looking in more depth across the areas of health, education, social care, employment and housing. The NDSPG’s consultation will also close on 8th November.
The NDSPG’s consultation follows two phases. Phase 1 is open ended and welcomes all points of view across the areas of health, education, social care, housing and employment and can be accessed here.
Phase 2 seeks to get more detailed information and focuses on three groups – parent/carers, adults with Down syndrome and professionals supporting people with Down syndrome. All of the surveys (together with PDFs copies to look at ahead of completing) can be accessed at https://ndspg.org/
The links for the questionnaires specifically for parents/carers can be found below:
Transitioning to adult social care
Social care for children / young people under 18
The links for questionnaires specifically for adults with Down syndrome can be found below:
The following link is specifically for professionals supporting people with Down syndrome:
Again, we encourage you to take a look at the surveys and complete whatever you’re happy to. All views will be fed into the DHSC’s process with the aim of ensuring the guidance the Government publishes is effective, clear and provides a strong foundation for services provided to support people with Down syndrome.
Please let us know if you have any questions.
Calling for more evidence – Down Syndrome Act 2022
Thanks to widespread public and political support, we now have a Down Syndrome Act! Thankfully the Foundation and it’s trustees worked together with the National Down Syndrome Policy Group (NDSPG) to have a voice and be involved in the passing of the Act. We are here with an important update on where we are in the progress towards it’s implementation.
The Down Syndrome Act requires the Secretary of State to publish statutory guidance about the specific needs of people with Down syndrome which health, social care, education and other local authority services (such as housing) must take into account when commissioning or providing services. Once the guidance is published these authorities are legally required to take the guidance into account when providing certain core services.
The NDSPG we believe it is vital that those with Down syndrome, their families, carers, friends and experts working with them, contribute to the guidance in a meaningful way because they understand the frustrations and limitations of current systems and also have many views about how to improve things. They know what works and what doesn’t, what is helpful and what is a hindrance, what is beneficial and what is a waste of time.
But they need to hear from you!
We are pleased to announce the launch of the second phase in the NDSPG’s online consultation. In phase 2 they move into a more quantitative approach, asking specific questions.
They appreciate that not all of you will have experience across all of the topics, so they have created individual questionnaires split into three different respondent types:
To be completed by Parent / carer
- Education
- Transitioning into adult social care
- Social care for children / young people under 18
- Healthcare
To be completed by individual with Down syndrome, with assistance where necessary
To be completed by professionals who help people with Down syndrome
The NDSPG appreciate that some of you may feel daunted by the task of completing these surveys. An alternative might be to hold face to face meetings with your local group/peers to get feedback in person. Please get in touch if you would like to do this but need support in how to facilitate.
In addition to our consultation we recommend as many people complete the Government’s own Call for Evidence
Research Assistant Required
The NDSPG are also looking for postgraduate students to support as Research Assistants working on the analysis of qualitative data. Please email contact@ndspg.org to discuss terms. Please do share this great opportunity to work with a dynamic team as they analyse the data from our consultations and present to the Government as part of their call for evidence for the Down Syndrome Act.