If you or someone you care for has Fetal Alcohol Spectrum Disorder (FASD), it’s essential to understand that you have rights. These rights include access to a proper diagnosis and appropriate housing support. Being educated on these rights can make a big difference in securing the services and resources you need.
CanFASD recently held a webinar on FASD and human rights. If you missed it, you can watch the webinar recording on our YouTube channel. Read on for a brief overview of what was discussed in the webinar.
The United Nations Convention on the Rights of Persons with Disabilities
The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) is an international agreement that ensures people with disabilities, including those with FASD, are treated equally and have access to the same opportunities as everyone else. The UNCRPD emphasizes the rights of people with disabilities in all areas of life. This includes health, education, employment, housing, and participation in society.
For those with FASD, this means you have the right to:
- Proper Diagnosis: The ability to get a clear and accurate diagnosis is essential for accessing supports.
- Adequate Housing: Safe, stable housing is a basic human right. Support services should be in place to ensure that individuals with FASD can maintain it. As a result, those with FASD can achieve greater stability and independence in their living environments.
The Right to a Diagnosis
Although the UNCRPD does not include a specific section on FASD diagnosis, it covers this under the general definition of disability. Article 1 of the CRPD recognizes that people with disabilities, including FASD, face barriers that hinder their participation in society.
Getting a diagnosis is crucial for accessing the right support and services. Without a proper diagnosis, individuals may miss out on the services they need, leading to adverse outcomes.
However, there are challenges to getting a diagnosis. Limited resources and the need for specialized diagnostic services often prevent people with FASD from getting the help they are entitled to. In some cases, individuals with FASD may also face unfair expectations, like having to meet the criteria for an intellectual disability (e.g., having an IQ below 70), even if their needs are just as significant.
We need coordinated care that spans across health, education, and social services, ensuring that people with FASD can get the support they need from diagnosis through to adulthood. Early diagnosis is key, as research shows it leads to better outcomes, such as reduced contact with the criminal legal system and improved mental health.
The Right to Housing
Everyone has the right to live in a safe, stable home. For individuals with FASD, however, securing and maintaining housing can be particularly challenging. Many people with FASD experience housing instability or homelessness. This can be due to difficulties navigating housing systems that don’t accommodate their unique needs, or because of a lack of FASD-informed practices in housing support services.
When individuals with FASD do find housing, it’s often short-lived. Housing agencies may not understand the specific needs of individuals with FASD, leading to premature termination of services or eviction.
To ensure people with FASD can maintain housing, we need housing models that are specifically designed to meet their needs. One promising approach is the Housing First model. This model focuses on providing stable housing first, then pairing it with supportive services like mental health care, substance use treatment, and job training.
Housing First aligns with the human rights principles outlined in the UNCRPD, including:
- The right to choose your home and live independently (Article 19).
- The right to respect for your home and family (Article 23).
- The right to an adequate standard of living, including adequate food, clothing, and housing (Article 28).
For housing to be truly effective, it needs to be accompanied by FASD-informed support. This means services that understand the challenges faced by individuals with FASD and provide the right tools and resources to help them thrive in their homes and communities.
Resources and Support
If you or someone you care for is navigating the challenges of FASD, there are resources available to help. Remember you have the right to be supported, and there are resources available to help you navigate the path ahead. Here are some valuable tools and materials that can provide additional guidance:
- FASD From a Rights-Based Perspective: Unpacking the UNCRPD – This webinar recording outlines what the UNCRPD is and how it intersects with FASD.
- Framing FASD Policy, Practice, and Research Using the UNCRPD – This issue paper provides in-depth information about how the UNCRPD can be applied to FASD-related issues, offering a rights-based perspective on diagnosis, services, and support.
- ARCH Disability Law Centre – This organization offers legal support and advocacy to ensure that the rights of individuals with disabilities are upheld. Their resources can help guide you through the legal processes to secure necessary services and accommodations.