A Summary of ASAN’s Invitational Summit on Supported Decision-Making and Transition to the Community: Conclusions and Recommendations.
Introduction:
The Autistic Self-Advocacy Network (ASAN) recently released a document stating the conclusions from their “Invitational Summit on Supported Decision-Making and Transition to the Community”. This was a summit that included allies and self-advocates to disability justice, and focused on possible alternatives in housing and healthcare to the paternalism disabled people and other patients experience today. The full “Conclusions and Recommendations” PDF can be found here. In this blog post, I will summarize some primary issues and takeaways from this document, and highlight its relevance to Not Dead Yet’s audience and purpose.
ASAN begins their document by addressing the problem of “guardianship”. Disabled people with “full” guardianships lack the right to basic life decisions, including with whom they associate and where they live and work, without the guardian’s consent. Guardians may also directly make decisions for the disabled person in their “care”. Because such guardianships have led to abuse and exploitation, some (such as ASAN) have recently turned toward a “supported decision-making” process, instead of the paternalistic guardianships (p. 3).
This shift toward supported decision-making provides the context for ASAN’s October 2016 summit, in which both this and larger efforts at deinstitutionalization were discussed. This means that supported decision-making must be thought of in the context of non-hierarchical community relationships; the goal of deinstitutionalization, after all, is to end the paternalistic relationships between disabled people and our “carers” that make institutional confinement so brutal. Ultimately, an international team produced a list of “four components critical for successful integration into the community” and elaborated on each in the rest of the document (pp. 3-4). I will discuss each briefly below.
- Housing (pp. 5-11)
Group members recommend educating and engaging landlords on the specific needs of disabled residents; and interrogating the ableist idea that a disabled person is untrustworthy if they do not have a guardian speaking on their behalf. Additionally, ensuring more housing is available to disabled people living on Section 8 housing benefits is crucial. By extension, this requires securing affordable and accessible housing for all people, a fight which is still ongoing. Thus, ASAN encourages disability rights activists to work alongside fair-housing activists to ensure disabled tenants’ equal right to housing. Once an accessible, affordable living situation is secured, those assisting in the transition must be attentive to each person’s unique needs and modes of communication.
- Relationships & Natural Supports (pp. 12-20)
ASAN encourages government-funded peer support networks (not connected to institutions) for people in the transition process between institution and community, as long as there are safeguards to ensure that peer supporters will not turn into pseudo-guardians.These supporters might look like ombudspersons who amplify the voice of the disabled person in legal settings, instead of speaking for them. In starting programs like this, trainings for these workers must emphasize the difference between their role and the role of the “guardian.” More than one supported decision maker per person is recommended so that none become a guardian; no supported decision-maker should gain unilateral control over one person’s life, and multiple witnesses help to prevent this.
- Healthcare (pp. 20-22)
Treatments and options, and the details therein, must be accessible and understandable to disabled people who may undergo them. Supporters should aid in this to make sure their clients are able to exercise informed consent to medical treatments. On a larger scale, ASAN recommends training medical professionals to work better with their disabled patients. Discussion of healthcare will be expanded further in below paragraphs, particularly with regard to its importance for Not Dead Yet’s mission.
- Long-term Services & Supports (pp. 22-28)
In the search for supports, we as disabled people should have access to those who can help us choose which services to use in the long-term. Some support networks act as agents, screening and recommending support staff for disabled people who may need them (with the disabled people making the final decision as to which services to use). ASAN encourages governments to fund these support networks. To further aid in ensuring disabled peoples’ decision-making autonomy, ASAN recommends keeping a detailed record of all decisions made and modes of communication used by the disabled person so that this information is available to new supporters and other workers in the person’s life. In order to make sure choice and autonomy remain possible, funds for long-term services and supports for which the person is eligible should “follow the person” in their choices of setting, supporters, and other direct care workers. In contrast, currently, funding tends to be structured around the institutions that house disabled people, providing an incentive to continue institutionalizing us.
Relevance to Not Dead Yet
ASAN recommends that multiple voices must work in concert with the disabled person’s to make sure that it is possible to make an informed decision in line with the person’s wants and needs. At Not Dead Yet, we see an overwhelming number of cases in which patients’ underlying disability-related needs are ignored or devalued in discussions of assisted suicide. We also see that people feel pressure to choose assisted suicide because they feel like “burdens”, or who feel pushed toward suicide because of shame, depression, and fear of further disablement. These feelings are taught by an ableist society.
Normalizing community solidarity and welcoming disabled people into neighborhoods, especially those with affordable housing, we can grow networks of mutual support and friendship. Exposure to others who live with disabilities everyday –– including those who might need help using the restroom, need constant in-home care, and have other needs typically associated with ableist shame –– helps to correct the cultural devaluation that leads some to request assisted suicide.
The prospect of multiple long-term supporters who are trained to communicate effectively with the disabled person, instead of for any of us, is a promising step toward combating abled paternalism and ensuring that we can speak for ourselves and make our own choices. Via support networks, we can maintain more control over who interacts and assists in our lives and in what ways. With a multitude of self-chosen people working together with us, with many of whom we may have had long-term relationships, it is possible for healthcare decisions to be made in accordance with the disabled person’s desires. Lastly, the presence of multiple, trained supporters alongside patients in medical settings can help to correct against intentional and unintentional doctor intimidation, especially toward patients who have previously experienced institutionalization and abuse.
Conclusion:
Using their four main components for integration, ASAN and its national and international allies hope to produce a “cultural shift” in perceptions of disabled people at large (p. 29). This shift requires money and support of governments –– meaning that those in power must radically shift their present views of disabled people. It is our hope as advocates for disability justice that we can reinvent (supported) decision making for disabled people, so that our voices are most central in our own medical decisions, and that supporters and professionals work in solidarity with us, instead of simply speaking over us.