On August 8th 2019 during the IASSIDD conference in Glasgow, a Memorandum of Understanding (MoU) was signed between IASSIDD and EASPD (European Association of Service providers for Persons with Disabilities). EASPD promotes equal opportunities for people with disabilities through effective and high-quality service systems, and works towards ensuring the full implementation of the UN Convention on the Rights of Persons with Disabilities, thereby representing over 17.000 organisations. The MoU is an important agreement expressing the willingness to collaborate and to improve the understanding of intellectual disabilities and help create a more inclusive, fulfilling, and accepting society.
The COVID-19 pandemic has the effect of accelerating and revealing exclusionary practices in society, and we are witnessing widespread failures to accommodate to the needs of people with disabilities. At the same time, healthcare workers and organisations who have to work harder than ever before to help vulnerable groups, are met by many with expressions of support and calls for action to reform healthcare. IASSIDD and EASPD’s aim for this debate is to bring together professionals who can share their views on the impact of COVID-19 on people with disabilities and their relatives and caregivers, and on the crucial role that service providers can play, and who can provide an insight into how we should move forward.
Luk Zelderloo has been professionally active in the disability sector for over 35 years. He is one of the founding fathers and the Secretary General of EASPD. Additionally, he is a board member of Social Services Europe, a platform for non-profit social services, and the Chairman of EMINO, a Flemish non-profit organisation offering supported employment and job coaching for persons with disabilities and vulnerable groups on the open labour market. Zelderloo has extensive knowledge of public policy developments, managing EU funded projects, quality of social services, and deinstitutionalisation and community-based care. He has acted as a speaker and organiser of conferences on topics such as education and employment of persons with disabilities, staff training, state aid, poverty reduction, person centred technology, combating sexual abuse, social policies, capacity-building and stakeholder cooperation.
Zelderloo: “During the COVID-19 crisis that has hit persons with support needs and their support staff so dramatically hard, we did not value diversity. On the contrary. Across the globe re-medicalisation was reported. People were stripped from their already limited self-determination and control over their own lives was even more limited. Empowering support was too often reduced significantly. What are the learnings of this crisis? How do we prevent a derailing of the Human Rights agenda in times of crisis? In my contribution I want to share the perspective of support services acting as Human Rights enablers.”
Panelist: Christine Linehan
Christine Linehan BA, MA, DipStat, PhD, CPsychPsSI is an Associate Professor with the UCD School of Psychology, University College Dublin. Christine is also the Director of the UCD Centre for Disability Studies which engages in research, teaching and outreach activities in the disability field. Prior to joining UCD, Christine was an Associate Professor at Trinity College Dublin’s National Institute for Intellectual Disability and was a Senior Research Officer at the National Disability Authority, the statutory body advising the Irish Government on disability issues. Christine’s research interests include disability policy, resource allocation and epidemiology.
Christine is currently chair of IASSIDD’s Comparative Policy and Practice (CPP) Special Interest Group. In 2020, the CPP, joined by external academics and practitioners, conducted a survey of caregivers of people with intellectual and developmental disabilities on their experiences during COVID-19. The findings, from 12 countries, outline these experiences and reveal similar trends among these diverse countries, and will be presented during this session.
Hanna Blom-Yoo is a theologian and a human rights activist for people with a disability. She is married with three children. Her oldest daughter Jasmijn (11) was born with a rare chromosomal disorder. Despite the fact that the Dutch health care is pretty well organised, it is quite a challenge to get all the support you need as a person with a disability, and as parents and siblings of this person.
During the COVID-19 crisis, Jasmijn's daycare was closed, so she had to stay home. The crisis had a huge impact on Jasmijn and her family, more than necessary. So what could be helpful in order to improve things for people with a disability? What lessons can we learn from this crisis?
As a volunteer, Hanna organises concerts with top musicians for people with a disability and their families, because music unites people and gives them the opportunity to enjoy beauty together. At the closing of this conference, such a concert will take place.
Esther Bakker-van Gijssel, MSc, MD (ID-physician), PhD is a science practitioner in the Department of Primary and Community care - Intellectual disabilities and health of the Radboud university medical center, and in the Academic Collaborative “Stronger on your own feet” in Nijmegen. In the Radboud university medical center she is appointed as a principal clinician, who takes a leading role in innovative and integrative healthcare for people with intellectual disabilities. She is also medical director at Siza, a service care provider for people with disabilities in the beautiful surroundings of Arnhem, the Netherlands.
Chair of IASSIDD’s Health Issues
Esther is currently chair of IASSIDD’s Health Issues Special Interest Research (SIRG) Group. In 2020 the Health issues SIRG and the Surrey place research group (Toronto, Canada) organised a Health SIRG symposium which had to be cancelled due to COVID-19. The symposium was transformed into 3 webinars with the overarching theme COVID-19. She presented the findings of a study conducted by her research department in which 72 Dutch ID service care providers collected data on COVID-19 in relation to people with ID. These data, presented in factsheets were shared with the Dutch ministry of Health, Welfare and Sports who based their policy on it.
Debate leader: Boris van der Ham
Boris van der Ham is chair of the Dutch Association of Healthcare providers for people with Disabilities, Vereniging Gehandicaptenzorg Nederland (VGN)* since 2019. Furthermore, he is chair of the Dutch united umbrella organisations of care (BoZ) and member of the board of several civil society organisations, like Humanist International, in business and culture. Also, he is a writer and an actor. Earlier in his carrier he has been member of Dutch parliament.
In his role of chair of VGN he witnessed the enormous impact of COVID-19 and the measures, on people with disabilities, their families, professionals and the service organisations as well as the enduring efforts to reduce this impact.
A major highlight to him was last November when the general assembly approved of the Vision2030 and its implementation agenda. This involves close collaboration of all members with people with disabilities, their natural network, professionals and civil society organisations to enable a meaningful life and full participation of people with disabilities.
* In 170 member organisations of VGN 200.000 persons with intellectual and/or motor disabilities and/or hearing and/or visual impairments receive care and support from 171.000 professionals.