Inclusion International is organizing 2 side events and co-hosting 4 side events at the 12th Conference of State Parties.
The events we are organising are:
- Persons with Intellectual Disabilities and Institutions: Lived Experiences and Ways to Achieve Deinstitutionalization on Wednesday, 12th June 4:45 PM – 6 PM in Conference room C
- Digitalization, Empowerment and Decision-making: How can we ensure that persons with intellectual disabilities are included? on Thursday, 13th June 3 PM – 4.15 PM in Conference room B
Persons with Intellectual Disabilities and Institutions:
Lived Experiences and Ways to Achieve Deinstitutionalization
The UN Convention on the Rights of Persons with Disabilities recognizes the right of persons with disabilities to live in the community. Article 19 of the UN CRPD defines this right into three main components: choice, support and inclusion.
For many years, people with disabilities and mainly persons with intellectual disabilities and persons with psychosocial disabilities have been institutionalized. Professionals have long argued that placement in an institution is a necessity. Due to the lack of quality services in the community and little support to parents themselves in raising their children with a disability, institutions were seen as providing quality care. The result was that placement of children with disabilities in institutions was the main and regular solution.
Many studies and investigations led by human rights activists and families representatives have revealed the horrid and sub-human conditions of living in these institutions. Studies also highlight regular violence and abuse caused to persons with disabilities because of institutions.
Spearheaded by people who experienced living in an institution, organisations of persons with disabilities, family members and the human rights community, a movement has been created which calls for institutions to be closed.
Yet, more than a decade after the adoption of the CRPD by the UN and 177 ratifications, institutions still exist in every region of the world. Worse still, low-middle income countries who have never had institutions have started to build them.
Some governments are providing alternatives to institutions, which are not CRPD compliant. Smaller placement facilities (such as group homes or ‘family-like’ institutions) are justified as providing transitions from institutional to community living. According to the CRPD, these are providing segregated living conditions and therefore are still institutions.
In 2017, the CRPD Committee adopted general comment No. 5 on living independently and being included in the community (referring to article 19), which clearly stated the obligation of States Parties to adopt a concrete plan of action for deinstitutionalization, including the closure of current institutions and not to build new ones.
The general comment provides a definition for institutions as any living arrangement whatever its size, that has certain defining elements, such as obligatory sharing of assistants with others and no or limited influence over whom one has to accept assistance from; isolation and segregation from independent life within the community; lack of control over day-to-day decisions; lack of choice over whom to live with; rigidity of routine irrespective of personal will and preferences; identical activities in the same place for a group of persons under a certain authority; a paternalistic approach in service provision; supervision of living arrangements; (…).
However, successful experiences and good practices do exist. Existing examples of positive deinstitutionalization processes that include the development of successful alternatives to segregated residential custodial care, have been the result of a joint and collaborative approach between persons with disabilities, governments and civil society organisations. It is important to share these experiences with States Parties and organisations who want start the process but still face challenges to achieve an inclusive community life.
The objective of the side event is to provide a platform to share the lived experience of self-advocates from different countries who have experienced institutionalization and to talk about the challenges they faced and lessons learned in working in partnership with government toward alternatives to segregated, institutional models of custodial care.
Discussions will focus on the following questions:
- How did a lived experience in institution influenced the life of persons with intellectual disabilities? What impact did it have?
- How persons with disabilities and their families through their representative organizations can be involved in an advocacy process to ensure deinstitutionalization
- What are the States Parties obligations with regards to institutions to be fully compliant with Article 19 and the GC No.5?
- What steps can Governments take to achieve inclusive community supports, with and for people with disabilities?
- How can Governments work with community members to ensure the deinstitutionalization and social inclusion of persons with intellectual disabilities?
- What examples can be shared about how people with intellectual disabilities are included, and are contributing meaningfully to the life of the community?
The event is co-hosted by Inclusion International, Keystone Human Services, Young Adult Institute and International Disability Alliance. The permanent missions of Moldova and New Zealand will co-sponsor the event.
It will take the form of a panel discussion in interview-style led by self-advocates and parents from different countries with government representatives from Moldova as well as a member of the CRPD Committee.
The event of a duration of 1.15 hour will include panelist presentations and interactive debate with the audience.
- Ms. Galina Nipomici, Representative of the Permanent Mission of the Republic of Moldova to the United Nations.
- Sue Swenson, President, Inclusion International
- Tia Nelis, Self-advocate-Policy and advocacy director, TASH, USA – Krista Carr, Executive Vice President, CACL, Canada – Diana Zgherea, Self-Advocate; Delegate, Keystone Human Services International Moldova Association
- Robert Martin, CRPD Committee, New Zealand
- Consuelo Senior, Assistant Coordinator Training, YAI, USA
Digitalization, Empowerment and Decision-making:
How can we ensure that persons with intellectual disabilities are included?
Nowadays, technology plays a key role in promoting inclusion of persons with disabilities in the community. Under the UN Convention on the Rights of Persons with Disabilities, the States have the obligation to promote the availability and use of new technologies, including information and communications technologies, (…), devices and assistive technologies, suitable for persons with disabilities.
In recent years, we have witnessed a rapid and remarkable evolution of technologies, and people with disabilities are among the consumers who benefit. Digitization and ICTs have helped to reduce barriers to inclusion. Assistive devices, alternative modes, format of communication and accessible information (etc.) required by the CRPD are applicable in many areas of life such as education, political participation, mobility, etc.
However, this technological revolution is not purely beneficial. Laws and regulations that recognize the value of these technologies fail to apply sufficient safeguards to protect users from the harmful and negative effects. Moreover, people with disabilities and particularly people with intellectual disabilities are rarely, if at all, included in discussions around these regulations, or in the creation of new technology products. This is despite the fact that States are obligated (in accordance with the CRPD and GC No. 8 on the participation of persons with disabilities in the implementation and the monitoring of the CRPD) to consult persons with disabilities and their families and to involve them as meaningful contributors in the decision-making process.
The objective of the event is to provide a multi-stakeholders platform to discuss the technology solutions and the positive and negative impacts that technologies have on the lives of persons with intellectual disabilities. The discussion will draw input from researchers, technology companies, self-advocates, families and a government representative.
The side event will address the importance of thinking about technologies for all persons with disabilities with a focus on persons with intellectual disabilities.
Discussions will begin to answer the following questions:
- How do technologies enhance the empowerment and inclusion of persons with intellectual disabilities?
- What are the risks of new technology innovations on the lives of people with intellectual disabilities; and what are the hidden and/or unknown negative sides?
- How do regulations and policies consider the safety of persons with intellectual disabilities with regards to technologies?
- How do we ensure that persons with disabilities are included in the decision-making processes and how do we make the discussions accessible for them?
- What is the role of families in this process and why is it important to include them in the discussions?
The event will be held pending assigned date and timeslot on the 12th or 13th of June 2019 with a duration of one hour and 15 minutes. It will be co-hosted by Inclusion International, the Inclusive Design Research Centre at OCAD University, Benetech, and the Coleman Institute for Cognitive Disabilities at the University of Colorado. The Canadian Government, G3ict and the International Disability Alliance will co-sponsor the event.
The side event will take the form of a panel discussion comprising representatives from Government, research institute, technology organizations, and civil society organizations. It will include panelist presentations and an interactive debate with the audience.
- Honourable Carla Qualtrough, Minister of Public Services and Procurement and Accessibility, Canada
- Axel Leblois, President and Executive Director, G3ict, Global Initiative for Inclusive ICTs
- Sue Swenson, President, Inclusion International
- Betsy Beaumon, CEO, Benetech
- Jutta Treviranus, Director of the Inclusive Design Research Centre, OCAD
- Tia Nelis, Self-advocate – Policy and Advocacy Director, TASH
- Emily Shea Tanis, Acting Executive Director, Coleman Institute for Cognitive Disabilities at the University of Colorado