The complexity of FASD necessitates a human rights approach to supporting people with this disability. However, supports and services are still lacking for people with FASD and it remains a low priority in Canada for research and policies informing resources and services.
The United Nations (UN) developed the Convention on the Rights of Persons with Disabilities (CRPD) to ensure that human rights are given to everyone regardless of ability or functioning. The CRPD ensures that countries promote and protect the civil, political, social, economic, and cultural rights of people with disabilities.
Canada ratified the CRPD in 2010, which means they are legally bound by this convention. Canada has agreed to develop policies and legislation at all levels of government that provide people with disabilities opportunities for protection from discrimination, provision of accommodations to address their needs, and participation in the decisions that affect them. However, Canada has yet to provide a national framework that guides provinces and territories on how to incorporate the CRPD into their policies and legislation.
Some researchers have looked at how people can use the CRPD to inform service provision for those with disabilities, and limited research has looked at using the CRPD to inform work with specific disability groups, like autism. It is important to consider how we can use the CRPD to empower self-advocates with FASD and their care providers. Other countries, like Australia, have recently looked at using a human rights-based approach to create a framework of service provision to address FASD.
The CRPD holds promise as a tool of advocacy for self-advocates with FASD and their care providers. Three identified areas of need for people with FASD that might benefit from using the CRPD as an advocacy tool are: diagnosis, housing, and criminal justice. The CRPD can be used to advocate for new accommodations, supports, and services for people with FASD or for modification to existing frameworks to accommodate people with FASD.
FASD falls well within the definition of a disability as provided in the CRPD. However, people with FASD may not secure a diagnosis due to various challenges with the process. This may create barriers to accessing the necessary supports and services for individual success. Even when an individual is recognized to have FASD, they may need to meet the diagnostic criteria for an intellectual disability (i.e. IQ below 70) in order to receive support and services.
Ensuring access to comprehensive assessment and diagnostic services are aligned with several articles outlined in the CRPD, including awareness-raising (Article 8) and the right to health and healthcare without discrimination on basis of disability (Article 25).
People with FASD are overrepresented in the criminal justice system. This may be due to the unique characteristics of FASD making them more vulnerable in the criminal justice system to criminalization. The CPRD identifies that people with FASD have the right to be able to access justice (Article 13). This includes ensuring that justice professionals have access to effective training to provide accommodations.
Therapeutic jurisprudence is an approach to law that is consistent with the CPRD. It can address the rules or procedures of the law, including the behaviour of legal professionals. This has resulted in the development of therapeutic courts that resolve to divert people away from criminal courts to community programs that will help to reduce the likelihood of future offences. Incorporating a therapeutic jurisprudence framework into cases involving people with FASD could be an opportunity to incorporate a rights-based approach to addressing the need of people with FASD who come in contact with the law. At this time, there is one therapeutic court dedicated to supporting people with FASD in Manitoba.
People with FASD are at a higher risk of housing instability, which increases their likelihood of poorer health outcomes. Healthy outcomes are possible when supports are available to meet the person’s unique needs. However, current housing models aren’t set up to meet the changing needs of people with FASD. What’s more, the lack of FASD informed services and providers can mean that people with FASD face additional challenges and adverse outcomes.
The Housing First model is consistent with the CRPD and focuses ensuring that people have housing first and foremost and combines supportive services as needed. This approach can be used to ensure people with FASD have access to safe, supportive, and stable housing. Adopting this model (with modifications to address the unique needs of people with FASD) would bring housing supports for people in alignment with the CRPD; particularly the right to live independently and be included in the community (Article 19), have respect for the home and family (Article 23), and provision of an adequate standard of living and social protection (Article 28).
Take Home Message
There is an urgent need for a rights-based research, practice, and policy for people with FASD. The CRPD provides a valuable tool and framework to advocate for changes to accommodate people with FASD. The articles in the CRPD can be used to empower FASD advocates and to remind governments of their obligations as a ratifying party to the CRPD.
For more information, including recommendations, please read the full issue paper here.
Authors: Kelly Harding & Lisa Whittingham
Date: May 2021