WAAD 2019: Assistive technologies by Erich Kofmel

The United Nations has announced the theme for this year's UN World Autism Awareness Day, 2 April 2019: "Assistive Technologies, Active Participation"

http://www.un.org/en/events/autismday/

They write: "Autism awareness has grown worldwide in recent years. For the United Nations, the rights of persons with disabilities, including persons with autism, as enshrined in the Convention on the Rights of Persons with Disabilities (CRPD), are an integral part of its mandate.

"When world leaders adopted the 2030 Agenda for Sustainable Development in 2015, the international community reaffirmed its strong commitment to inclusive, accessible and sustainable development, and pledged that no one would be left behind. In this context, the participation of persons with autism as both agents and beneficiaries is essential for the realization of the Sustainable Development Goals (SDGs).

"For many people on the autism spectrum, access to affordable assistive technologies is a prerequisite to being able to exercise their basic human rights and participate fully in the life of their communities, and thereby contribute to the realization of the SDGs. Assistive technology can reduce or eliminate the barriers to their participation on an equal basis with others.

"The Convention on the Rights of Persons with Disabilities acknowledges the instrumental role of assistive technologies in enabling persons with disabilities to exercise their rights and freedoms. It obliges States that are party to the Convention to promote availability and use of such technologies at an affordable cost, to facilitate access to them, and to undertake or promote research and development into new such technologies.

"While technological advances are continuous, there are still major barriers to the use of assistive technologies, including high costs, lack of availability, lack of awareness of their potential, and a lack of training in their use. Available data indicates that, in several developing countries, more than 50% of the persons with disabilities who need assistive devices are not able to receive them.

"In September 2018, the UN Secretary-General launched a new Strategy on New Technologies, which aims to define how the United Nations system will support the use of these technologies to accelerate the achievement of the 2030 Sustainable Development Agenda. The Strategy is also intended to facilitate the alignment of these technologies with the values enshrined in the UN Charter and the Universal Declaration of Human Rights, and the norms and standards of International Law, including the CRPD and other human rights conventions. These values include equality and equity, inclusion and transparency. Design and use of new technologies, according to the Strategy, should be guided by a rights-based and ethical perspective.

"In the context of the Secretary-General's Strategy, the 2019 World Autism Awareness Day observance at UN Headquarters in New York will focus on leveraging the use of assistive technologies for persons with autism as a tool in removing the barriers to their full social, economic and political participation in society, and in promoting equality, equity and inclusion. Topics to be addressed through discussions with self-advocates and experts include:
- The Internet and digital communities: Leveling the playing field
- Independent living: Smart home technology and more
- Education and employment: Communication and executive functioning
- Telemedicine: Opening the doors to healthcare
- The right to be heard: Political participation and advocacy

"In 2008, The United Nations General Assembly unanimously declared 2 April as World Autism Awareness Day. The 2019 observance of the Day at UN Headquarters is organized by the UN Department of Global Communications and Department of Economic and Social Affairs, in close cooperation with persons with autism and their representative organizations."

While we can't speak for other autistic-led self-advocacy organizations, no one from the UN has reached out to seek the input of Autistic Minority International. We are also concerned about the ongoing distinction made between self-advocates and "experts". As actually autistic people, we are the real experts on our lives.

The programme hasn't been announced yet, but if you are planning to be in New York, you can already RSVP.

CALL: Rights of older autistic persons by Erich Kofmel

The United Nations Special Rapporteur on the rights of persons with disabilities is preparing a report on the rights of older persons with disabilities, to be submitted to the 74th session of the UN General Assembly in October 2019.

Concise submissions with input regarding older autistic persons, in English, French, or Spanish, should be sent in Word format to: sr.disability@ohchr.org

Deadline: 15 April 2019

https://www.ohchr.org/EN/Issues/Disability/SRDisabilities/Pages/SupportingTheAutonomyOlderPersons.aspx?fbclid=IwAR3Ew0gC4RmDClyBLPrx9OFCZSRt565EYt6xsSZXJ4D0LcHe2voXzHNOr-c

Questionnaire in English: https://www.ohchr.org/Documents/Issues/Disability/OlderPersons/Questionnaire_EN.docx

Questionnaire in French: https://www.ohchr.org/Documents/Issues/Disability/OlderPersons/Questionnaire_FR.docx

Questionnaire in Spanish: https://www.ohchr.org/Documents/Issues/Disability/OlderPersons/Questionnaire_SP.docx

For the UN's World Autism Awareness Day 2017, Autistic Minority International organized a side event/thematic briefing for the expert members of the UN Committee on the Rights of Persons with Disabilities on "Ageing and Premature Death on the Autism Spectrum". Speakers included Cos Michael from the UK, Wenn Lawson from Australia, and Alanna Whitney from Canada. We will be making a written submission to the Special Rapporteur based on the ageing-related presentations made at that side event.

If you have any additional input you think we should include in our written submission to the Special Rapporteur, please send it as soon as possible to: e.kofmel@autisticminority.org

CALL: Autistic people killed by police by Erich Kofmel

The United Nations Special Rapporteur on extrajudicial, summary or arbitrary executions is preparing a report on "the impact of the use of lethal force by law enforcement officials on persons with psychosocial, intellectual or developmental disabilities", such as the killing of autistic people by police or excessive use of force against autistic prisoners.

The report will be submitted to the 41st session of the United Nations Human Rights Council (HRC) in June 2019. The Special Rapporteur is one of the so-called special procedures appointed by the HRC. The current mandate holder is Agnes Callamard of France.

Questionnaire and call for information on specific cases of killings/use of force:

https://www.ohchr.org/Documents/Issues/Executions/PoliceUseForceMentalDisability.pdf

From the rationale: "How police officers and law enforcement officials, as well as those operating in the administration of justice, including prison personnel, interact with persons with psychosocial, intellectual, or developmental (including autistic persons) disabilities is a topic of growing concern and international debate. Persons with such disabilities are entitled to specific measures of protection so as to ensure their effective enjoyment of the right to life on an equal basis with others. These shall include measures designed to prevent unwarranted use of force by law enforcement [...]. An emerging body of evidence points to disturbingly high numbers of law enforcement-inflicted fatalities involving persons with psychosocial, intellectual or developmental disabilities. [...] [I]ncidents related to the excessive use of force by law enforcement against persons with this kind of disabilities often remains invisible. [...] Limitations on data or inadequate data not only prevent developing awareness on the specific needs of people with psychosocial, intellectual or developmental disabilities when interacting with law enforcement and other state officials. They also make it difficult to inform policy making and legislation, establish accountability and oversight controls, designate responsibility and provide effective remedies for victims. The objective of the report is to broaden understanding of the scale of the problem with a view to identifying best practices, particularly in the prevention of fatalities associated with law enforcement intervention, and contributing to standard-setting efforts at the international level."

The information they are requesting is extremely wide-ranging and we can forsee that it will be overwhelming (and quite possibly triggering) to many autistic self-advocates, so it may be imperative that autistic people cooperate in providing information, for example at the country level.

Here is more information on this Special Rapporteur's mandate:

https://www.ohchr.org/en/issues/executions/pages/srexecutionsindex.aspx

Concise and focused submissions, with the subject heading "Disabilities report 2019", should be sent to: eje@ohchr.org

Deadline: 1 February 2019

Please send any information you think should be part of a submission by Autistic Minority International to us as soon as possible: e.kofmel@autisticminority.org

Thanks.

CALL: Empowering disabled children by Erich Kofmel

The United Nations Human Rights Council (HRC) decided to focus its 2019 annual full-day meeting on the rights of the child on the theme "Empowering children with disabilities for the enjoyment of their human rights, including through inclusive education". The HRC mandated the Office of the UN High Commissioner for Human Rights (OHCHR) to prepare a report on that theme, in consultation with all relevant stakeholders. You can find the questionnaire here:

https://drive.google.com/file/d/1Jb7InsSkjfmR2fCUenBVfxBbfx_gYKeS/view

Written submissions of no more than four pages are to be sent in accessible format (i.e. as Word document) to: registry@ohchr.org

Deadline: 10 October 2018

All submissions will be posted on the OHCHR's website.

CALL: Involuntary (re)habilitation by Erich Kofmel

The Office of the United Nations High Commissioner for Human Rights (OHCHR) is preparing a study on article 26 of the Convention on the Rights of Persons with Disabilities (CRPD), to be presented to the UN Human Rights Council at its session in early 2019. Article 26 is concerned with habilitation and rehabilitation, which may lead to human rights violations against autistic persons such as forced treatment and involuntary institutionalization, lack/denial of access to assistive technology, and compliance-based traumatizing early interventions like Applied Behaviour Analysis (ABA) at the behest of parents or caregivers, but without the autistic child's own consent.

Text of the article:

https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-26-habilitation-and-rehabilitation.html

Questionnaire:

http://www.internationaldisabilityalliance.org/sites/default/files/annex_23-_2018_07_27_letter_hrc_res_37_22_cso.doc

Please submit information about the situation in your respective countries to them directly (in accessible format, i.e. as a Word document): registry@ohchr.org

Deadline: 1 September 2018

All submissions will be posted on the OHCHR's website.

Input for a possible submission by Autistic Minority International on issues of particular relevance to autistic children and adults beyond the national level should be sent to us as soon as possible: e.kofmel@autisticminority.org

CONF: WHO mental health forum 2018 by Erich Kofmel

The Mental Health Gap Action Programme (mhGAP) Forum 2018 of the World Health Organization will take place 11-12 October at WHO headquarters in Geneva, Switzerland.

This year's theme is "Accelerating Country Action on Mental Health", seeking to "provide an opportunity for diverse stakeholders to discuss progress on WHO's Mental Health Action Plan 2013-2020 in countries". This may therefore be an opportunity for autistic people to participate who feel more confident speaking about the situation in their respective countries rather than at the global level.

Following the publication online of the ICD-11 diagnostic manual (which needs to be formally adopted by the World Health Assembly in 2019), there will be a pre-publication launch of the chapters on mental, behavioural, and neurological disorders. This should be of great relevance to autistic self-advocates who, like us, think that autism is not a disorder and should not be in the International Classification of Diseases to begin with and disagree with the specific requirements for diagnosis, as outlined in the final text released by the WHO on 18 June 2018 with a view to faciliating implementation at country level, such as translation into local languages (https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/437815624).

To celebrate World Mental Health Day (10 October), a lunchtime seminar will be held during the forum on "Young people and mental health in a changing world". The relevance of this for autistic persons is self-evident.

A "High-Level Segment: Raising Mental Health on the Political Agenda" will discuss how "Mental health's position on the political agenda has significantly risen over the last year. During our High-Level Segment, we will review the progress, learn about new initiatives and discuss ways to accelerate country action."

Furthermore, they are planning to start evaluating the Mental Health Action Plan 2013-2020 and discussing what comes after 2020. The WHA autism resolution was attached to the Mental Health Action Plan in 2014 and will likely be evaluated/renewed at the same time.

Background: "The mhGAP Forum is an informal group consisting of Member States, intergovernmental and non-governmental organizations, including UN Agencies, international development agencies, philanthropic foundations, research institutes, universities and WHO Collaborating Centres, for coordinated action in the implementation of mhGAP - WHO's Programme to scale up care for mental, neurological and substance use disorders. The World Health Assembly's adoption of the Comprehensive Mental Health Action Plan 2013-2020 in May 2013 enhances the need for partnerships, which makes the mhGAP Forum even more relevant."

Registration will be open from 2 July through 5 October:

https://reg.unog.ch/event/25823/

Autistic Minority International has participated in the fora in 2014, 2015, and 2016. Please contact us for the flyer with more details and/or let us know if you or someone from your organization or network would like to represent us this year: e.kofmel@autisticminority.org

Unfortunately, we can't offer funding for travel and accommodation.

[Update 9 October 2018: For the first time, the plenary sessions of this year's mhGAP Forum will be livestreamed. That's almost the entire programme, except two "small group discussions". Webcast link, including full programme:

http://www.who.int/mental_health/mhgap/forum_2018/en/ ]

CALL: How to treat disabled children by Erich Kofmel

The United Nations Secretary-General's Special Envoy on Disability and Accessibility, a former chairperson of the UN Committee on the Rights of Persons with Disabilities, is developing a "'Campaign for the Good Treatment of Girls, Boys and Adolescents with Disabilities in the World', to contribute to the prevention of mistreatment of girls, boys and adolescents with disabilities".

They say: "The formulation of a 'Decalogue' [ten statements in easy language], which is the basic product of this campaign, has been the result of intense multidisciplinary work based on a focus group and interviews with children and adolescents with disabilities, and also with adults with disabilities, around to his [or her or their] childhood experiences.

"The decalogue expresses ideas in a simple, clear, direct and first-person way, so that it is understood by people of different ages and regions of the world. It is the children who speak to the community. Surely there are phrases that will seem 'obvious', but we have to reach everyone, 'leaving no one behind'.

"As a team, the Office of the Special Envoy of the SG-UN on Disability and Accessibility have opened a period of extensive consultations with civil society of persons with disabilities. Your contribution will be very valuable to reach the final version of the decalogue, which will be disseminated globally."

You can find the text of the draft decalogue below, in English and Spanish. Comments should be sent to Paula Arroyave Escaffi, Lawyer and Assistant of the Special Envoy: arroyavepaula@hotmail.com

The deadline for comments is 21 May.

Please submit comments on behalf of an (autistic-led) organization rather than individually. Comments you'd like Autistic Minority International to make should be sent to us as soon as possible: e.kofmel@autisticminority.org

Please don't forget to consult with autistic children and adolescents on this!

DECALOGUE OF GOOD TREATMENT
From Children and Adolescents with Disabilities to families,
caregivers, educators and society.
1) I exist and I am a person
2) I like that you love me and cuddle me
3) I like that you take care of me when I am in need, being attentive should something happens to me
4) I want you to accept me as I am, and to recognize my abilities and talents
5) I like that you listen to me, explain to me what is happening and consider my opinion
6) I like that you trust me and that you teach me
7) I need you to understand me and accompany me when I am upset or angry
8) I like that you include me
9) I want you to respect and take care of my body
10) It matters to me that you believe me

DECÁLOGO DEL BUEN TRATO
Desde los Niños, Niñas y Adolescentes con Discapacidad para las familias, cuidadores, educadores y sociedad.
1) Yo existo y soy persona
2) Me gusta que me quieras y me hagas cariño
3) Me gusta que me cuides cuando lo necesito, estando atento/a si algo me pasa
4) Quiero que me aceptes tal cual soy, y que reconozcas mis habilidades y talentos
5) Me gusta que me escuches, que me expliques lo que pasa y consideres mi opinión
6) Me gusta que confíes en mi y que me enseñes
7) Necesito que me comprendas y acompañes cuando estoy triste o enojado
8) Me gusta que me incluyas
9) Quiero que respetes y cuides mi cuerpo
10) Me importa que me creas

CONF: Autism and artificial intelligence by Erich Kofmel

The International Telecommunication Union, the specialized agency of the United Nations concerned with information and communication technologies, will be holding a conference on artificial intelligence, "AI for Good Global Summit 2018", from 15-17 May 2018, at ITU in Geneva, Switzerland.

https://www.itu.int/en/ITU-T/AI/2018/Pages/default.aspx

From the description: "The AI for Good series is the leading United Nations platform for dialogue on AI. [...] While the 2017 summit sparked the first ever inclusive global dialogue on beneficial AI, the action-oriented 2018 summit will focus on impactful AI solutions able to yield long-term benefits and help achieve the Sustainable Development Goals. 'Breakthrough teams' will demonstrate [...] new opportunities for AI to help achieve Universal Health Coverage [...]. Teams will propose impactful AI strategies able to be enacted in the near term, guided by an expert audience of mentors representing government, industry, academia and civil society. Strategies will be evaluated by the mentors according to their feasibility and scalability, potential to address truly global challenges, degree of supporting advocacy, and applicability to market failures beyond the scope of government and industry. The exercise will connect AI innovators with public and private-sector decision-makers, building collaboration to take promising strategies forward."

Of particular relevance to autistic persons is that the track on "AI and health" intends to "[i]dentify quick-wins areas and types of AI applications that hold high-potential impact on health outcomes and that are feasible and relatively simple to deploy". Under "Potential domains for AI quick-wins for Public Health", they list a number of workstreams, including "AI for primary care and service delivery", expecting that "Artificial Intelligence can help make certain types of diagnostics almost ubiquitous, sometimes in combination with off-the-shelf cameras or smartphones. Similar tools can help guide primary-care workers through treatments that they might otherwise not have been able [to] offer", among them "[s]ervices for [...] early childhood development disorders e.g., detection of [...] autism", "[p]re-diagnostics, self-assessment and remote screening ([...] mental health, [...] etc.)", and "AI-powered health consultations / telemedicine". Another workstream will discuss chatbots that "can help people with identifying [...] mental conditions".

If you are technologically well versed, please consider registering for this conference to ensure that the autistic perspective with regard to diagnostics and early detection is taken into consideration. Let us know if we can be of assistance: e.kofmel@autisticminority.org

Otherwise, the entire conference will also be webcast:

https://www.itu.int/en/ITU-T/AI/2018/Pages/webcast.aspx

Unfortunately, it is not clear if all tracks, such as "AI and health", and workstreams, i.e. "AI for primary care and service delivery", will be webcast simultaneously.

[Update 8 September 2018: As one of the outcomes of the AI and Health track, an ITU Focus Group on Artificial Intelligence for Health (FG-AI4H) was formed, which will meet for the first time on 26-27 September 2018 and is organizing a workshop on "Artifical Intelligence for Health" on 25 September 2018 at the headquarters of the World Health Organization (WHO) in Geneva, Switzerland.

https://www.itu.int/en/ITU-T/Workshops-and-Seminars/20180925/Pages/default.aspx

This is the first workshop in a planned series of workshops: "The aim of these workshops is to provide a platform for researchers, engineers, practitioners, entrepreneurs and policy makers to discuss standardization opportunities for the assessment of AI for health solutions and to identify use cases and data required for the evaluation and validation with open benchmarks."

While autism isn't mentioned in the programme of this workshop, and it seems very technical, some issues to be discussed are of concern to autistic people, such as access of AI researchers to databases, including repositories collecting our DNA and genetic and patient information, "for training and testing of the algorithms in the context of evaluation and validation with open benchmarks. It will address the need of open data sources and opportunities for how to make algorithms fair and unbiased, how to promote algorithmic accountability and how to make predictions equitable. [...] Identify who can share, own, control and maintain a variety of datasets and where should this data be stored in order to support 24/7 operational benchmarking infrastructure."

The workshop seems to be open to everyone who is interested, and the registration form includes the option of remote participation. Remote participation is also available for the subsequent FG-AI4H meeting. Places are limited, and applications (both for on-site and remote participation) will be handled on a first-come, first-served basis. Please register as soon as possible.

Furthermore, the FG-AI4H is inviting written contributions for its meeting, "inter alia on (1) the state of the art for artificial intelligence for health (e.g., terms, definitions, concepts, requirements, research gaps, methods, formats, standards ecosystem, applicable assessment / benchmarking frameworks); (2) specific use cases and their standardization; (3) medical AI research and standardization of use of AI in medical devices and diagnostics in healthcare; (4) top health industry issues/‌health emergencies and how AI could address those in a standardized approach; (5) medical data required for testing, training and evaluation of AI4H algorithms, considering various dimensions, e.g. availability, standardization, privacy and ownership."

Please use the template below and send written contributions to the secretariat: tsbfgai4h@itu.int

https://www.itu.int/en/ITU-T/focusgroups/ai4h/Documents/FG-AI4H-I-template.docx

Deadline for registration and written contributions: 19 September 2018

Written contributions will likely also be accepted for future meetings of the FG-AI4H. Any upcoming opportunities and events will be announced on its webpage:

https://www.itu.int/en/ITU-T/focusgroups/ai4h/Pages/default.aspx ]