Take Urgent Action Against Scotland Assisted Dying Bill

As DSRF’s regular followers will know, we have been raising awareness about Kim Leadbeater’s Assisted Dying Bill. This Bill will affect England and Wales and is moving forward rapidly in Westminster, and we believe it will present serious dangers to the Down’s syndrome community in many ways. However, at the same time, another similar Bill is being pushed forward, which will affect people in Scotland.

On Tuesday 13th May, MSPs will debate and vote on Liam McArthur’s Assisted Dying for Terminally Ill Adults (Scotland) Bill. If this bill becomes law, it would have devastating consequences for disabled people across Scotland, including people with Down’s syndrome and other intellectual disabilities, as well as their families.

For the past 30 years, the Down Syndrome Research Foundation UK has worked to extend the life, health and wellbeing of people with Down’s syndrome through research and advocacy. We have deep concern about any change to the law to legalise assisted dying on behalf of our community. We believe that introducing assisted dying will be a catalyst for negative change in healthcare, which will adversely affect people with intellectual disabilities, including those with Down’s syndrome. 

The Health, Social Care and Sport Committee in Scotland, which has been receiving evidence and considering the bill ahead of the debate and vote on Tuesday 13th May, published its report on 30th April – less than 2 weeks before the debate. In the report, the Committee notes “the compelling evidence it has heard concerning the significant structural inequalities and barriers to services and support disabled people face every day. It recognises that these and the negative societal attitudes that lead disabled people to feel their lives are devalued need to be urgently and systematically addressed.” This bill is not being introduced in a neutral context. Disabled and otherwise vulnerable people in Scotland are already struggling as mentioned.

The Committee Report states that MSPs will want to give “further consideration” to whether the bill strikes an “appropriate balance” in terms of its protections for disabled people. However, very recent experience from Westminster, where the Committee scrutinising the bill rejected an amendment to specifically protect individuals with Down’s syndrome, shows that even when given the opportunity to stand up for vulnerable people, politicians don’t always listen. The time to stop this bill is NOW, at Stage 1, before it is too late.

We are deeply concerned about the risks of coercion and undue influence. In particular, people with Down’s syndrome and intellectual disabilities are at significant risk of coercion and undue influence, in part because of their need to trust and rely upon caregivers and medical professionals. The evidence supports this. 

Informed consent also raises serious issues. The evidence shows a clear need to ensure a higher threshold of care to make reasonable accommodation for people with intellectual disabilities. The onus is on healthcare professionals, not people with intellectual disabilities, to communicate with skill, give additional time, be willing, be patient and be present. Due to inadequate awareness and training, this presents challenges in the best of circumstances, but even more so in a context where senior doctors warn that the NHS in Scotland as we know it may not “see out another year” due to the pressure it is under.

We are also concerned about the wider impact on healthcare and support for people with intellectual disabilities. The recent experience of people with Down’s syndrome is not a good one. During the Covid-19 pandemic, “temporary” changes put the human rights of people with special needs on hold and prevented them from receiving appropriate care, with deadly consequences. People with intellectual disabilities, including those with Down’s syndrome, had a death rate six times higher than average. It does not require a huge leap of the imagination to expect a similar dynamic, should a state-sanctioned assisted dying service be implemented.

This bill, which puts vulnerable people at risk of harm, may well become law unless we speak out for our community today. 

Please use the simple tool linked here to send an email to all your MSPs, urging them to prioritise improved support for disabled and otherwise vulnerable Scots, including people with Down’s syndrome and intellectual disabilities. Even if you or your MSPs support the principle of assisted dying, this bill is not the way forward for Scotland.

Please take action today on behalf of your friends and family who are vulnerable, or for yourself. You will know from your lived experience, and of course, the evidence backs this up, that the overwhelming majority of people with Down’s syndrome are happy and love their lives. This is often invisible to those in public office – let’s remind MSPs! 

Please write to your MSPs today and ask them to protect people with Down’s syndrome and intellectual disabilities by voting against this bill at Stage 1 on Tuesday 13th May!

If you receive a response from any of your MSPs, please email their response to us: dsrf@dsrf-uk.org

Engagement with Terminally Ill Adults (End of Life) Bill

Kim Leadbeater’s Assisted Dying Bill is now headed towards the Third Reading in parliament. The Down Syndrome Research Foundation UK remains deeply concerned about the substance and the process of this bill.

DSRF-UK submitted written evidence to the Public Bill Committee in January 2025, outlining our reasons to believe that the Assisted Dying Bill will cause disturbing consequences for individuals with Down syndrome.

Along with many other groups, DSRF UK also co-signed an open letter issued by the National Down Syndrome Policy Group, asking for urgent attention on the issues raised by the Down syndrome community.

The Bill has recently passed through the committee stage, where a selected panel looked over the Bill and scrutinised amendments. 393 amendments were requested by MPs opposed to the Bill. Only 30 total amendments have been accepted, with a mere 7 of these changes being likely to increase the original safeguarding of the bill. The majority of the committee panel members with power to vote are holders of firmly established pro-euthanasia stances. It is unsurprising that issues with the Bill are hard to address.

We had hopes that one amendment would provide specific relevant protections. Amendment 368 aimed to provide additional safeguards for people with Down syndrome and prevent misuse of the Assisted Dying Bill, by invoking statutory guidance from the Down Syndrome Act 2022, which will soon be issued to meet the needs of adults with DS. This amendment was debated during the sixteenth sitting of the Public Bill Committee on 4 March 2025, and was rejected by the committee. Disturbingly, Kit Malthouse MP, co-sponsor of the Bill, followed the rejection of the amendment with a suggestion that criticism of the results of this vote should be silenced.

Kim Leadbeater made a public suggestion to meet with DSRF UK and NDSPG to discuss concerns, but no such meeting has taken place to date. This follows a wider repeated pattern of decision-making that excludes groups which advocate for the rights of people with disabilities.

We have highlighted data on concerns relevant to the DS community, in relation to assisted dying and euthanasia in other jurisdictions.

We have also found the research and oral evidence of Professor Tuffrey-Wijne, from Kingston University London, to be highly informative for this issue. Professor Tuffrey-Wijne is the world’s first Chair of Intellectual Disability and Palliative Care, and was a guest speaker at a recent discussion of the implications of the Bill with DSRF UK’s Chair, Dr. Liz Corcoran.

The Report Stage of the Bill is now scheduled for Friday 16^th May 2025.

We are looking at an Assisted Dying Bill that does not provide adequate safeguards or address concerns for the Down syndrome community. In the lead up to the next stage of the Bill, DSRF UK will continue to publicise information relevant to our community, and signpost ways that you can make your voice heard.

Launch Event for the Down Syndrome and Sleep Research Network:
now open for registration to professionals

We are reaching out to researchers, healthcare professionals, sleep charities and DS-focused charities to invite you to the launch of our new research network. The full-day event will be held in London on Monday 9th June 2025.

This launch event has now opened for sign-ups from professionals and charity representatives. 

We are proud to announce that this research network will be the first of its kind globally, concentrating on the specific connections and challenges linking Trisomy 21 and sleep disorders, and we hope it will be at the forefront of breakthroughs in this field. If your work brings you in contact with sleep disturbances and their impact on the Down syndrome community, we would love to get connected to you through this event, and give you access to more information on what the Research Network will offer. The launch day will involve learning, networking, and focus on research and advancements in the area of Sleep Disorders and Down syndrome.

Sleep problems among people with Down syndrome are very common, and deficits in sleep create profound repercussions for health and longevity. This research area has long been identified as crucial to focus on: but until now, it has not been given the attention needed. We invite you to come and see how your expertise and skills may help contribute to new advances in sleep science specific to the DS community. We encourage you to spread the word about the launch to colleagues and friends in related disciplines, if you can. The event is free, thanks to generous sponsors.

The day begins with an introduction to DSSRN’s mission and goals, followed by expert-led presentations covering the latest research and clinical insights. Professor Catherine Hill and Dr Lizzie Hill will provide a comprehensive overview of sleep issues across paediatric and adult populations. Dr Stephanie Brown from the University of Cambridge will explore cutting-edge imaging research that examines the role of sleep dysfunction in Alzheimer’s disease among individuals with Down syndrome, alongside insights into behavioural complexity in related conditions like Prader-Willi syndrome.

Sessions will also include an early case report on Inspire device upper airway stimulation from the team at Great Ormond Street Hospital, presented by Mr Liam Sutton. Prof Alice Gregory will be discussing sleep disturbances in type 1 diabetes as a model for broader understanding.

Thanks for your support in making this launch a success and helping it reach as many interested professionals as possible. It’s time to cooperate to bring about change through sleep research for the worldwide Down syndrome community.

How to register to attend the launch: Please get in touch with organisers at info@dssrn.org.uk to claim tickets and for more details on the event.

David Elliott and Dr Liz Corcoran, chair of the DSRF UK and sister.

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!

“It is difficult to have our voices heard”

International Case Studies on Legalised Assisted Dying, with relevance for Down syndrome community

“People with Down syndrome and other disabilities are already not taken seriously and it is difficult to have our voices heard. I am worried that in years to come when my mum isn’t here any longer, I may be pressured to end my life when I didn’t want to because I may be seen as a burden on the health service if they don’t want me any more.”

 – Bethany Asher, Award winning actor, Patron of the Down Syndrome Research Foundation UK, and Advisory Member of the National Down Syndrome Policy Group

“We are writing as Labour MPs with concerns about the detail of the Terminally Ill Adults (End of Life) Bill, which completed its three days of oral evidence last week. … Whilst the Bill Committee heard oral evidence from 50 expert witnesses last week, they were unfortunately not able to hear from … any witnesses from jurisdictions who had introduced assisted dying and who had concerns about it. … Many members, including members of the committee, felt that overall the list of witnesses did not in fact reflect a wide range of different views, but was weighted towards voices that were known to be supportive of the Bill.”

– Joint Letter to MPs: Jessica Asato MP, Antonia Bance MP, James Frith MP and Meg Hillier MP, 6^th February 2025

There are no shortages of expert voices prepared to share their serious concerns about Kim Leadbeater’s Terminally Ill Adults (End of Life) Bill on Assisted Dying. However, by deliberate choice of the Bill Committee, the majority of those voices have recently been excluded from the witness list. As the Bill progresses through Parliament, it’s clear that certain people are being spoken over, and it is pre-determined that others will not have the chance to tell their personal story or share their professional insights. An avoidance of discussing trends and insights from countries which already have euthanasia is just one example of omission of relevant evidence from public scrutiny.

We believe that it is enormously important to look at the evidence available and consider how legalisation of assisted dying could change the outlook for individuals with Down syndrome as they age or need medical treatment and care.

Questions about Euthanasia and Down syndrome

Readily available data shows that assisted dying / euthanasia laws have already directly and indirectly affected the outlook for people with intellectual disabilities in other countries. In various countries we looked at, the scope of assisted dying laws was extended over time to include instances that would have been thought unethical to begin with. While it’s challenging to track the extent of the effect on people with Down syndrome due to poor availability of data on DS as a specific demographic, the following information is highly relevant to our community. We asked these questions:

• Have other countries seen cases of assisted dying among people with intellectual disabilities? (Netherlands case study)
• What about euthanasia related to illnesses which people with DS commonly develop as they get older? (Netherlands case study)
• What if the availability of social care services and palliative care is more limited than the offer of assisted dying? (Canada case study)
• What if there are discriminatory attitudes towards the value of life of people with intellectual disabilities? (Belgium case study)

The evidence we found presents a disturbing outlook.

Euthanasia in the Netherlands

Year Legalised: 2002

Legal reasons for eligibility: Terminal illness, unbearable suffering (physical or psychological), and voluntary request.

Percentage of deaths in 2023: 5.4% (9,068 out of 169,521 people who died in the Netherlands in 2023: around 1 in 19)

Intellectual Disability and Autism Euthanasia Cases – Netherlands case study

• Some people with intellectual disabilities have made use of the Assisted Dying law in the Netherlands. A study of euthanasia cases in the Netherlands involving intellectual disabilities and autism spectrum disorder were analysed to investigate if any particular difficulties had arisen with due care criteria for these patients.
• The analysis showed problematic aspects affecting consent, including that some physicians had struggled to understand the patient’s perspective, that some time frames were brief, and that limited physician-patient meetings may not have been enough to make a decision this serious.
• Capacity and autonomy tests in these cases did not seem to be stringent enough for the needs of patients with intellectual disabilities, and the due care criteria that was applied was insufficient as a safeguard for the specific needs of these patients.

Alzheimer’s and Assisted Dying – Netherlands case study

• Alzheimer’s patients are eligible for Assisted Dying in the Netherlands
• People with Down syndrome are 6 times more likely to be diagnosed with dementia than the rest of the population, from the age of 65 and older. Worldwide data indicates that about 55% of people with Down syndrome aged 50-59 and over 75% of those 60+ are diagnosed with Alzheimer’s, compared to only 10-15% of the general population aged 65 and older​.
• The number of people euthanised in the Netherlands after being diagnosed with dementia in 2023 increased to 328 from 288 in 2022 (a 8% increase)
• Dementia as an eligible condition is already problematic with regards to issues of consent. A research paper published in 2020 found more than 52% of Dutch GPs with experience of euthanising a dementia patient felt an emotional burden from the experience. Over 47% felt uncertain about the mental competence of the patient at the time of their euthanasia, and a further 9% said they felt pressured by the relatives of the dementia patient to euthanise them.

Euthanasia in Canada

Year Legalised: 2016

Legal reasons for eligibility: Serious and incurable condition causing intolerable suffering; expanded to include mental illness in some cases from 2025.

Percentage of deaths in 2023: 4.7% (15,300 out of 320,000 people who died in Canada in 2023 – almost 1 in 20 deaths)

Assisted Dying as an alternative to Supported Living – Canada case study

• In Canada, people with disabilities are likely to be actively offered Assisted Dying as an alternative to disability supports, presented as a ‘therapeutic option.’
• People with intellectual disabilities will be at grave disadvantage and will be unlikely to navigate these obstacles.
• Analysis has highlighted the dilemma that people with disabilities are placed in:

“… the key issue … is the risk EAS [Euthanasia and Assisted Dying] poses to disabled persons when disability supports which would allow them to live a life, they consider worth living are not readily available. This risk is arguably heightened in the context of austerity and concern with rising health and social care cost … one must question how many other people with disabilities like Sean Tagert, out of despair, a lack of knowledge about other options or simply because they are weary of the struggle, will quietly chose to die by EAS.”

• These concerns about Canadian euthanasia laws have also been raised by the UN. The UN Special Rapporteur on the rights of persons with disabilities, after her visit to Canada, was “extremely concerned” about the implications of assisted dying legislation on people with disabilities after hearing multiple complaints. In her report she states: “I urge the federal government to investigate these complaints and put into place adequate safeguards to ensure that persons with disabilities do not request assistive dying simply because of the absence of community-based alternatives and palliative care.”

Euthanasia in Belgium

Year Legalised: 2002

Legal reasons for eligibility: Unbearable physical or psychological suffering due to incurable conditions, voluntary request.

Percentage of deaths in 2023: 3.1% (3,423 out of 111,255 deaths: 1 in 32)

Disability can be enough to qualify for euthanasia – Belgium case study

• There are already indications that negative attitudes in the Belgian healthcare system mean the lives of people with Down syndrome and other disabilities can be viewed as inherently less worthwhile. Belgium has been criticised by the UN Committee in the Rights of Persons with Disabilities for “societal perceptions that people with Down syndrome and other disabilities have less value than other people”
• People with disability “as the sole underlying cause of suffering” can access assisted suicide in Belgium.
• There is continual steady increase and normalisation of euthanasia in Belgium, and if that trend continues, more groups of vulnerable people will likely be encouraged in that direction.

We highlight these cases to illustrate that people with Down syndrome become less protected in environments where assisted dying has been normalised. A person with Down syndrome who may not have full autonomy is likely to face higher risk of being considered more eligible for euthanasia by other people, while also being less able to find satisfactory care as they age.

It’s virtually impossible to design safeguards that can harmonise a perceived ‘right to die’ with a more fundamental right to care that supports life. As Bethany Asher points out, people with Down syndrome already experience the difficulty of having their voices heard in decision making processes that will affect them. The issues they will face in the future in relation to assisted dying are still not being discussed among lawmakers with the urgency and prominence that is necessary.

How you can take action:

We urge that you consider the profound effects that this law could have on our community and lift your voice to amplify these issues. While there is still an opportunity, we ask that you get involved to pull the brakes on the Assisted Dying Bill. There are many ways you can get involved:

1. Open a conversation with your MP about this issue and tell your MP how this could negatively affect you or your family. You can find your MP’s contact details here on the UK Parliament’s MP Finder tool:

https://members.parliament.uk/

2. To contact members of the House of Lords and let them know your perspective on this, please follow the steps here:

https://www.parliament.uk/business/lords/whos-in-the-house-of-lords/get-in-touch-with-members/

3. If you have been personally affected by these issues, you can also share stories here:

https://carenotkilling.org.uk/take-action/tell-us-your-story/

Key Findings from the NCMD Report on Child Deaths in Children with Learning Disabilities and Autism

<Warning contains upsetting themes to some readers>

The National Child Mortality Database (NCMD) recently published a report that sheds light on the tragic and heartbreaking issue of child mortality among children with learning disabilities and autism. This comprehensive analysis provides crucial insights and recommendations to help improve outcomes for these vulnerable groups. Here are the key findings relevant to our Down syndrome community:

Increased Mortality Risk

Children with learning disabilities, including those with Down syndrome, and autistic children face an increased risk of mortality compared to their peers. The report highlights several contributing factors:

• Health Disparities: These children often experience poorer health outcomes due to comorbid conditions and barriers to accessing healthcare services.
• Healthcare Accessibility: Difficulties in communication and inadequate support can lead to delays in diagnosis and treatment, exacerbating health issues.

Common Themes in Child Mortality

The report identifies recurring themes that need to be addressed to reduce mortality rates:

• Respiratory Conditions: Respiratory issues, including infections and complications, are a leading cause of death among children with learning disabilities and autism. This is particularly relevant for those with Down syndrome, who are more prone to respiratory problems.
• Epilepsy and Seizure Disorders: Children with learning disabilities are at higher risk of epilepsy, which can be fatal if not properly managed.
• Cardiac Issues: Congenital heart defects are common in children with Down syndrome, making cardiac care crucial.

Recommendations for Improvement

The NCMD report emphasises several key recommendations to improve care and outcomes:

• Enhanced Training for Healthcare Providers: Training programs should focus on the specific needs of children with learning disabilities and autism to ensure better understanding and management of their conditions.
• Improved Communication Strategies: Developing effective communication tools and strategies to facilitate better interaction between healthcare providers, children, and their families.
• Integrated Care Approaches: Coordinating care across different specialties to provide comprehensive and continuous care for children with complex needs.

The Importance of Research

At the Foundation, we understand the critical role that research plays in improving health outcomes. Research provides the evidence needed to inform best practices and shape policies that can save lives. The findings from the NCMD report underscore the need for continued research to identify effective interventions and improve the quality of care for children with Down syndrome and other learning disabilities. Critically it shows we need to ACT on the evidence base and guidelines we already have in place.

The Way Forward

As a community, we must advocate for the implementation of these recommendations to ensure that children with Down syndrome and other learning disabilities receive the care and support they need. By addressing the identified gaps and enhancing our healthcare systems, we can work towards reducing the mortality rates and improving the quality of life for these children.

Please continue to support our work alongside the National Down Syndrome Policy Group to create the guidelines to accompany the Down Syndrome Act 2022 to maximise its impact. Attending focus groups and responding to Calls for Evidence do make a difference. As soon as the new government is established the work will resume.

For more detailed information and to read the full report, visit the NCMD’s publication page. There is also an Easy Read available.

Together, let’s continue to support and champion the health and well-being of every child in our community.

If you or a family member has been affected by the loss of a child with Down syndrome DSUK offer a Facebook group for you to connect.

With thanks to National Child Mortality Database.

Breaking News: Menstrual Health Research in Adolescents with Down Syndrome in the UK

TAKE PART NOW: HERE

This World Down Syndrome Day we are excited to announce a new partnership between the Down’s Syndrome Research Foundation UK and the London School of Hygiene & Tropical Medicine to investigate the menstrual health-related experiences of adolescents with Down Syndrome in the UK.

The study, led by Dr Katie Greenland Assistant Professor, will generate important evidence on the unmet menstrual-related requirements and identify opportunities for interventions to improve the menstrual health of people with Down syndrome in the UK. Details of how to participate in this study will be forthcoming for carers and adolescents aged 10-19 years.

The study aims to shed light on the menstrual health-related experiences of adolescents with Down syndrome, a topic that has received little attention in the health research community to date. Through comprehensive online surveys and in-depth interviews with adolescents with Down syndrome and their caregivers, the project seeks to uncover the unique challenges and needs of these young individuals.

“I am so glad this complex aspect of life is being researched.

It is important for Health Care Professionals to understand the challenges people with Down’s syndrome and their families face regarding menstruation and its management”

L (mum to daughter with DS and Autism)

Why Is This Important?

People with learning disabilities experience a wide range of health inequities, and menstrual health is no exception. The well-being of adolescents during their menstrual cycle impacts not only their physical health but also their schooling, mental and social well-being. Despite its importance, there is a stark lack of evidence and guidance available to support individuals with Down syndrome and their caregivers or doctors in managing menstrual health well.

The team will include experts Sarah Polack, Associate Professor in Disability Research at the International Centre for Evidence in Disability (ICED) at LSHTM and Dr Jane Wilbur, Assistant Professor at the International Centre for Evidence in Disability (ICED) at the LSHTM, focusing on disability and water, sanitation and hygiene (WASH).

Sarah Pollock has a wealth of experience at the discovering the health experiences and needs of those with disabilities, critically with those with living experience at the heart of her research methods.  Dr Wilbur has research expertise in the area of menstrual health in those with learning disabilities developing the Bishesta campaign (in Nepal) and the Veivanua campaign for Vanuatu’s humanitarian responses.

This partnership also marks a significant step forward in our commitment to supporting underserved communities and addressing health inequities faced by individuals with learning disabilities.

Stay Tuned

We invite you to follow our journey as we embark on this vital research project. Stay tuned to our blog and social media channels for updates, insights, and stories from the field. Together, we can create a more inclusive and equitable future for menstrual health care.

Thank you for your continued support of Down’s Syndrome Research Foundation UK. It is through collaborations like these that we can make a real difference in the lives of those we serve.

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:

1. 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.
2. 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.
3. 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.
4. 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.

Down Syndrome Task Force- Free Online Conference and DS Act Update

Down Syndrome Act Guidance Update