In cooperation with the European Network on Independent Living (ENIL), DRD held a webinar on ‘Aging with Disabilities in the Community’ on the 6th of February 2020. This report summarizes the webinar. A recording of the webinar can be watched on youtube.
The webinar was opened by Adolf Ratzka, founder of the Independent Living Institute (ILI) who welcomed the 33 participants and gave a short introduction to the topic. The goal of the webinar was to learn from each other how to implement the rights of disabled people to age in the community, rather than residential institutions, through community-based policies and programs that promote self-determination.
Judy Heumann, life-long US and world-wide disability rights activist and cabinet member in the Clinton and Obama administration, talked about her involvement in the disability rights and Independent Living movement. The World Institute on Disability which she co-founded in the early 1980s held a conference on aging with disabilities in the late 1980s, where young and old people from the Independent Living movement and representatives of organizations of older people came together to discuss their different philosophies. Judy highlighted the importance of raising awareness among disabled people to speak up for programs that allow them to live independently as they get older. Disabled people should fight for the abolishment of age limits for support services and should promote coalitions between generations to empower each other and learn from each other. Furthermore, seniors in the Independent Living movement should join the boards of organizations representing older people.
Next spoke Gerard Quinn, professor of law at the University of Leeds and at the Wallenberg Institute, University of Lund, Sweden. He explained the difference between the American and European approach to Independent Living. In Europe, there is a social welfare approach instead of a social rights approach. It is all about needs and entitlements. There is little awareness that the way resources are targeted at people may be segregating them. A civil rights perspective is needed to redraft the social support system in Europe so that segregating treatment is seen as a form of discrimination. However, in the US the civil rights perspective on its own is not enough, a social model is needed too. According to Gerard Quinn, we should meet in the middle between the civil rights model in the US and an improved social rights model in Europe.
He also spoke about the intersectionality of age and disability, and mentioned the Toronto Declaration of 2012 where experts from around the world acknowledged the need for a paradigm shift: from seeing aging and disability as two separate disciplines to bridging the two fields. Cultural perspectives influence how older people are treated. With a decreasing ‘functionality’ of the body, the right to self-determination in daily life, property or financial matters is reduced. Market forces and fiscal policies lead to the building of institutions and work against human rights oriented philosophies.
Gerard Quinn also highlighted the importance of the involvement of persons with disabilities and their organizations in the process of drafting the UN Treaty on the Rights of Older People. Even though most people are in favor of community living there are groups accepting exceptions. It is important to understand them and work together to preserve the achievements so far.
Eve Hill, disability rights lawyer, former Deputy Assistant Attorney General, US Department of Justice and co-leader of Inclusivity Strategic Consulting Group, presented the US perspective on community based services for elders with disability. According to the Americans with Disability Act, disabled people have a civil right to receive services in the most integrated setting appropriate for them (integration mandate) according to the Supreme Court decision in the Olmstead case. The Olmstead decision has been enforced for different services for people with all types of disabilities but not specifically for elders in nursing homes even though there is no legal reason why the decision should not be applied to older persons or to nursing homes. The integration mandate is hard to implement for older people with disabilities because the groundwork has not been laid in terms of societal expectations, costs, service models and funding streams.
There is a societal mental block against civil rights for elders. given the belief that the disabilities that elders develop are just part of aging and not real disabilities. It is assumed that older people want to live with other older people and that they face more isolation in the community than in the nursing homes. Further, the integration mandate has two legal hurdles to overcome: first, undue burden, meaning services in an integrated setting would be significantly more expensive than institutional services. And second: fundamental alteration, meaning jurisdictions are not required to create new services in the system. The Olmstead decision is difficult to apply when it comes to making housing accessible and affordable because housing is not a government service. There are some communities that offer cohabitation models or village models but they tend to rely on private funds and long term care insurance plans.
Eve Hill pointed out that in transferring the Olmstead approach abroad it is important to focus on not creating institutions but supporting community based systems.
Eric Rosenthal is the founder and Executive Director of Disability Rights International (DRI), an organization that among other things monitors and fights abuses in institutions. His observation is that old large institutions originally designated as psychiatric facilities are turning into institutions for elders. DRI has documented severe abuses in institutions worldwide filing cases on the right to community living. The Federico Mora case from Guatemala is one of the first cases they filed seven years ago and a decision is not expected before next year. Through litigation, DRI was able to kick-start some changes but there is the risk that the institutional model is reproduced in the community as a consequence of closing big institutions. This problem can also be seen on a structural level when EU Funds are used to build residential institutions such as group homes in the community with no individual choice. He highlighted that the solution should always be Independent Living in the community instead of fixing problems in institutions. The Inter-American Convention on Protecting the Human Rights of Older Persons includes the right to community integration, right to autonomy and defines segregation from society as a form of violence. Linking segregation and violence can be used as legal tool for enforcing community integration. There is also an affirmative obligation to create services that will allow community integration, choice and opportunity. Eric Rosenthal considers the Inter-American Convention to be a model to learn from that could benefit the justiciability, immediate enforcement and implementation of positive rights. However, the legal framework is necessary but not sufficient. Public pressure, awareness, exposure and publicity is needed as well as a change of focus in international funding.
The final speaker of the webinar was Ines Bulic Cojocariu, Deputy Director at the European Network on Independent Living (ENIL) and Coordinator of the European Coalition for Community Living. ENIL is part of the European expert group on the transition from institutional to community-based care working with the EU Commission to promote deinstitutionalization at the EU level. While ENIL was pushing to ban the usage of EU funds for institution-based services, the expert group on older people defended the usage of the money for residential care settings. Ines Bulic spoke about the two-track approach within the EU legal and policy framework concerning community-based care for disabled people and older people. In her view, the intersectionality is most often not seen. The main issue is, support services are often limited to those of working age and to basic needs as people are getting older. There is a high reliance on informal and unpaid care and residential care because of the lack of formal community-based services. Older people with disabilities are more often under guardianship, and there is a debate about assisted suicide in some countries. As older people are not seen as disabled and do not identify themselves as disabled, there is a lack of disaggregated data on older people with disabilities and a lack of awareness among older people about the CRPD. On the other side, the EU interprets deinstitutionalization and an insufficient availability of residential care as a challenge. Ines Bulic referred to the case Delecolle v. France at the European Court of Human Rights of an older man (under partial guardianship) who was not allowed to marry a long-time friend due to allegedly not being able to understand the financial implications of that decision. The court found that the right to marry and establish a family (Art 12 ECHR) benefitted only those with full legal capacity. To move forward it is crucial to raise awareness about the CRPD and Independent Living in relation to older people with disabilities, regardless of whether they identify themselves as disabled or not. Long term care should be brought in line with the CRPD and support should follow persons from birth to death. It is necessary to challenge the lack of community-based services in court and to promote the use of EU funds to develop community based services for all age groups. Further, a joint position on assisted suicide is needed.
The webinar pointed out the main challenges for aging with disabilities in the community. By bringing together the elder community and the disability community we can promote community-based services for older people with disabilities.