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  1. About us
  2. Our history

Our history

1993

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DSi was founded as a result of a meeting between Jo Mills (Canada), Penny Robertson (Australia) and Sylvia Escamilla (Mexico) who formalised the mission and structure of the organisation.

Published: 1st November, 1993

Updated: 11th October, 2021

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2002

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In May DSi was registered as a UK charity with the Charity Commission of England and Wales.

Published: 2nd November, 2002

Updated: 11th October, 2021

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2006

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On 13 December 2006, the Convention on the Rights for People with Disabilities (CRPD) was adopted at the United Nations Headquarters in New York.

DSi was represented by our Trustees, Penny Robertson and Dan Weeks.

The CRPD was opened for signature on 30 March 2007.

There were 82 signatories to the Convention, 44 signatories to the Optional Protocol, and 1 ratification of the Convention. This is the highest number of signatories in history to a UN Convention on its opening day.

The Convention entered into force on 3 May 2008.

The CRPD is the first comprehensive human rights treaty of the 21st century and it is the first human rights convention to be open for signature by regional integration organisations.

Published: 12th October, 2006

Updated: 12th October, 2021

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2009

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In May we delivered our first training programme, in Libya. 

In August the 10th World Down Syndrome Congress took place in Dublin, Ireland.

In November, we moved to offices in Teddington, England at the former home of pioneering Victorian Physician Dr John Langdon Down, after whom Down syndrome is named.

Published: 3rd November, 2009

Updated: 11th October, 2021

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2010

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Members of the DSi board accompanied Maria Alejandra Villanueva, a self-advocate from Peru, to the Conference of State Parties to the Convention (COSP).

Maria's right to vote has been withdrawn by the authorities.

Maria said she was speaking on behalf of all people without the right to participate in national political life, describing herself as one of the thousands of Peruvians excluded from electoral lists and denied the right to vote. 

“I want to fight to change this — for me and other persons with disabilities. I want to be considered a citizen.”

LEARN MORE

Published: 11th October, 2010

Updated: 11th October, 2021

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2011

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In December the United Nations General Assembly declared 21 March as World Down Syndrome Day (WDSD), a resolution proposed and promoted by Brazil, following a request by the Brazilian Federation of Associations of Down Syndrome, who worked with DSi and our members to launch an extensive campaign to generate international support.

Visit the official World Down Syndrome Day website:

World Down Syndrome Day

Published: 4th November, 2011

Updated: 11th October, 2021

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2012

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In March we organised the first WDSD Conference at United Nations HQ in New York, United States.

2012 conference theme “Building Our Future”

In August, we were in Cape Town, South Africa for the 11th World Down Syndrome Congress.

Published: 5th November, 2012

Updated: 11th October, 2021

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2013

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In March we organised the 2nd WDSD Conference at United Nations HQ in New York, United States.

2013 conference theme “Right to Work”

In April we visited Tajikistan to deliver education training. 

TAJIKISTAN EARLY DEVELOPMENT

Published: 6th November, 2013

Updated: 11th October, 2021

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2014

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In March we organised the 3rd WDSD Conference at United Nations HQ in New York, United States.

2014 conference theme “Health and Wellbeing –Access and Equality for All”

In October we visited Oman to deliver healthcare training. 

OMAN HEALTH TRAINING

Published: 2nd December, 2014

Updated: 11th October, 2021

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2015

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In March we organised the 4th WDSD Conference at United Nations HQ in New York, United States.

2015 conference theme "My Opportunities, My Choices" – Enjoying Full and Equal Rights and the Role of Families

In August we were in Chennai, India for the 12th World Down Syndrome Congress.

Published: 2nd December, 2015

Updated: 11th October, 2021

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2016

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In March we organised the 5th WDSD Conference at United Nations HQ in New York, United States.

2016 conference theme “My Friends, My Community” – The benefits of inclusive environments for today's children and tomorrow's adults

DSi supported the establishment of Rwanda Down Syndrome Organisation. 

RWANDA ORGANISATION SUPPORT

Published: 2nd December, 2016

Updated: 11th October, 2021

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2017

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In March we organised the 6th WDSD Conference at United Nations HQ in New York, United States.

2017 conference theme "My Voice My Community" – Enabling people with Down syndrome to speak up, be heard and influence government policy and action, to be fully included in the community

Also in March we organised the first WDSD event at United Nations in Geneva.

We visited Turkey to deliver our first self-advocacy training.

TURKEY SELF-ADVOCACY

We worked with Sociedad Peruana de Sindrome Down in Peru to deliver our parent support project.

PERU PARENT SUPPORT

Published: 2nd December, 2017

Updated: 11th October, 2021

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2018

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In March we organised the 7th WDSD Conference at UN HQ in New York and the 2nd side event at the Human Rights Council, UN, Geneva, Switzerland. 

2018 conference theme "What I bring to my community"

In June we returned to Turkey to deliver follow-up self-advocacy training.

In July we were in Glasgow, Scotland for the 13th World Down Syndrome Congress.  

In November we visited Nigeria to deliver self-advocacy training.

NIGERIA SELF-ADVOCACY

In December we worked with Down Syndrome Association of Nepal to deliver our early development project.

NEPAL EARLY DEVELOPMENT

Published: 2nd December, 2018

Updated: 11th October, 2021

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2019

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In March we organised the 8th WDSD Conference at UN HQ in New York and the 3rd side event at the Human Rights Council, UN, Geneva, Switzerland. 

2019 conference theme "Leave no one behind"

A draft copy of our international Education Guidelines was formally presented to a senior representative of UNICEF at the conference in New York.

EDUCATION GUIDELINES

In June we returned to Nigeria to offer further self-advocacy training supported by our newly recruited Self-Advocate Fellow George Basil Okudi.

We also visited Bangladesh to deliver self-advocacy training.

BANGLADESH SELF-ADVOCACY

In August the DSi Board members and staff meet to review our strategy and plan for the years ahead.

In September we visited the UAE to deliver self-advocacy training ahead of the 14th World Down Syndrome Congress which will be held in Dubai in November 2020.

UAE SELF-ADVOCACY

In October we launched a fundraising project to enable the Rwanda Down Syndrome Organisation (RDSO) to train family members and teachers in Rwanda to support the development of children with Down syndrome.

RWANDA EARLY DEVELOPMENT

Also in October we visited Kosovo to deliver self-advocacy training.

KOSOVO SELF-ADVOCACY

In November we returned to Bangladesh for the second training workshop of our project supporting the Down Syndrome Society of Bangladesh to start their first self-advocacy group.

BANGLADESH SELF-ADVOCACY

Published: 2nd December, 2019

Updated: 21st April, 2020

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2020

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In January DSi visited Nairobi, Kenya to launch our new Employment Advocacy project with the Down Syndrome Society of Kenya and other national organisations in Africa to ensure that people with Down syndrome are included in the workplace. We began training in September and will continue into 2021.

EMPLOYMENT ADVOCACY


In February we returned to UAE to follow up on the self-advocacy training that begun in September 2019. 

UAE SELF-ADVOCACY


In March we organised the 9th WDSD Conference. For the first time, due to the COVID-19 crisis, this was a virtual event.

2020 conference theme "We Decide"

World Down Syndrome Day Virtual Conference


As the year progressed we shifted a large portion of our resources to respond to the evolving situation with COVID-19 and to support our members and the global Down syndrome community during these difficult times.

COVID-19 response


In July we published our long awaited International Guidelines for the Education of Learners with Down Syndrome.

EDUCATION GUIDELINES


Also in July we launched our #ListenIncludeRespect project working together with Inclusion International developing guidelines for inclusive participation.

Inclusive participation


In September, in response to the COVID-19 pandemic, we launched a project with CAST, in which we explored the barriers that people with Down syndrome face when they want to participate in the work of organisations remotely. We developed digital solutions and with funding from The National Lottery Community Fund, we will start turning our prototypes into reality in 2021.

CAST project


Throughout 2020 we have supported Nazari Digar, one of our member organisations in Tajikistan, to plan their advocacy for 2021

TAJIKISTAN ADVOCACY


Our National Representatives with Down syndrome have been incredibly busy through 2020 in their role in informing and guiding the work that we are doing. You can learn more about our National Representative Committee and watch a video they have made about their role here:

National representatives with Down syndrome

Published: 16th April, 2020

Updated: 23rd June, 2021

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2021

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In January, DSi was delighted to publish the first set of Education project toolkits to help translate and promote the use of the International Guidelines for the Education of Learners with Down Syndrome. Soon after in March, we celebrated our first translations into French and Bosnian languages. Other translations are in the pipeline.

Education


In February, we were delighted to see an article published in the Journal of Cardiology about our cardiac work.

Cadiac consensus document


In March we organised the 10th World Down Syndrome Day Conference. For the second year in a row, this was a virtual event in line with COVID guidelines.

2021 conference theme "Connect"

World Down Syndrome Day conference


In June we published a statement calling for the prioritisation of people with Down syndrome in the COVID-19 vaccination programme and worked with our global network of member organisations to advocate for vaccine prioritisation in their jurisdictions.

COVID-19 vaccination prioritisation


Also in June we were delighted to see the launch of the new Down's Syndrome Association (England, Wales and Northern Ireland) website which we worked with them to plan and create over the past 2 years.


In September we launched our UK-based pilot study to share the key messages of the International Guidelines for the Education of Learners with Down Syndrome with key education stakeholders.

Inclusive education pilot study


In September we published a case study on the best practices in inclusive employment of people with intellectual disabilities, this one based in Bangladesh. We have been working with self-advocates in Bangladesh and in several African countries to advocate for inclusive employment.

Inclusive employment


In November we enjoyed the exciting and informative World Down Syndrome Congress 2021, hosted by Emirates Down Syndrome Association.

WDSC 2021


We are making progress on our inclusive participation project work by researching apps to enable people with Down syndrome and organisations to interract.

Inclusive participation with CAST

Published: 23rd June, 2021

Updated: 22nd December, 2021

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2022

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In January, we celebrated the translation of our International Guidelines for the Education of Learners with Down Syndrome into Albanian. 

EDUCATION GUIDELINES


In March we organised the 11th World Down Syndrome Day Conference. 

2022 conference theme "#InclusionMeans..."

Find out about our #InclusionMeans campaign and watch the presentations delivered at the 11th World Down Syndrome Day Conference in New York, 21 March 2022:

#InclusionMeans


In May, we launched Kami, the world’s first virtual influencer with Down syndrome.

Kami’s mission is to revolutionise the digital world, making it an inclusive and welcoming place for people with Down syndrome.

Introducing Kami


In June, we launched the Listen Include Respect guidelines at COSP15 (Conference of State Parties to the Convention on the Rights of Persons with Disabilities).

The guidelines will help organisations of all types to be more inclusive of people with disabilities. From producing and delivering accessible information, to running inclusive meetings, to including people with intellectual disabilities in consultations.

We are currently working with self-advocates to develop online training to accompany the guidelines.

This is a joint project with Inclusion International.

LISTEN INCLUDE RESPECT WEBSITE

We have chosen to lead by example by completing a review of how inclusive DSi is of people with Down syndrome. We are using this review to make a plan to improve our inclusive practice, which will be reviewed and updated each year.


In August we completed our Inclusive Education pilot study in the United Kingdom. The study explored how the existing education system caters to children with additional needs. We have produced 50 video resources and more than 40 written resources that will be published in 2023. These will be relevant to education systems around the world.


Our Employment work this year has been focused on 4 countries - Kenya, Nigeria, Rwanda, and Uganda. Our team has worked with the National Down syndrome organisations and their self-advocacy groups to conduct interviews, focus groups, and surveys, and to carry out employment advocacy activities, speaking up about their right to employment to key stakeholders in their country. Research reports about the barriers and good practices in the inclusive employment of people with intellectual disabilities will be launched in January 2023.


We have worked with our team of Ambassadors to carry out research into the current situation with self-advocacy in their countries. The research will help us make a plan for how we can promote self-advocacy around the world. In 2023 we are going to develop a new online self-advocacy training, then work to create opportunities for self-advocacy groups around the world to meet and share ideas and experiences.


Throughout 2022, the DSi team has been working on a new strategy for the organisation. The strategy will support our vision for the world and our plan to contribute to this change.

We are excited to share more about our new strategy in 2023!

Published: 1st August, 2022

Updated: 21st December, 2022

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Showing 10 of 17

Latest

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    Mexico

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7-9 Chapel Street, Exmouth, Devon,
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[email protected]

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