As detailed above, we would welcome more research, evidence and evaluation on the various ways SDM and related reforms from the CRPD could be implemented. The VRLC suggestions of a spectrum of co-decision making, as well as SDM particularly seem worthy of further investigation. Such an approach is also endorsed by Davidson et al’s review of the international literature.
‘SDM should be considered as an important part of a continuum of decision making from autonomous decision making through to substitute decision making. Law, policy and practice have tended to focus on either end of the spectrum and have sometimes approached decision making as if people are either globally capable or incapable, but most people require some level of support with decision making.
Flynn and Arstein-Kerslake have undertook in 2014 a review of law reform across various jurisdictions:
Northern Ireland: Assisted Decision-Making (Capacity) Bill, which they note ‘presents an interesting mix of supports (including the option of entering binding assisted decision-making agreements and co-decision making agreements) and substitute decision making (such as decision-making representatives and informal decision makers). They are concerned that the model is premised on a ‘standard’ of mental capacity as a prerequisite for retaining legal capacity. Certainly the position of the ACT Human Rights Commission is that the ACT Human Rights Act, particularly the right to equality (s 8) and consent to medical treatment (s10(2) read in light of the CRPD mean that there should be a presumption of capacity unless that is demonstrated otherwise.
India has a draft Rights of Persons with Disabilities Bill 2011 and amendments to the National Trust Act, which include the proposed abolition of plenary guardianship and transition of those currently under plenary guardianship to a new limited form of guardianship. While supportive of change based on Article 12, Flynn and Arstein-Kerslake nonetheless raise concerns that this model may still function like a substitute decision making regime.
Canada: British Columbia have existing laws in place that allows individuals to chose representatives under agreements and types of decisions, although these are limited and do not include refusing life-saving treatment, placing the person in an institution, limiting contact with others or consenting to treatment over the individual’s objection. While noting a lack of research in this area, Kohn et alsuggest that women are more likely to be principals than men under the BC model, and non-relatives appear to be frequently selected as alternative representatives. This model also includes the selection of ‘monitors’ to oversee the representatives, and in these cases approximately 30% of monitors are other family members and equally 30% are friends. Kohn et al submit that if supported decision is likely to occur primarily with families, then the dynamics inherent in such relations can be both positive and negative. Bach and Kerzner have also written extensively on how the CRPD could be adopted into Canadian law, including submissions to the Ontario Law Reform Commission.
United States: Booth Glen has also written of the extensive academic work underway in the United States, including a new National Centre for Supported Decision Making, a draft supported decision-making Bill in Texas, and the work of Autistic Self Advocacy Network (ASAN) in developing model legislation. ASAN has released ‘An Act Relating to the Recognition of a Supported Healthcare Decision-Making Agreement for Adults with Disabilities’, and accompanying educative material.
Sweden and Saskatchewan: Kohn et al notes the so called ‘good man’ court appointment co-decision making process used in current Swedish and Saskatchewan law.
How can a person’s need for support be balanced with that person’s right to independent decision making? (Question 8)
We have addressed this question above in relation to the Safeguard Principles. Again, it seems clear that education and resources for all persons participating and supporting are critical, based on evidence-based research. The Government must be prepared to invest in this area, particularly in the transition and trial periods, if law reform is to succeed.