Siblings Canada

Sibling Relationships and Developmental Disability Services: From Coerced Care to Entitlement is an academic article authored by Dr. Natalie Spagnuolo, Dr. Josée Boulanger, and Helen Ries, the co-founder of Siblings Canada. The article, published in Disability Studies Quarterly, explores how to best support people with intellectual disabilities (ID).

Below is a plain language summary of the key ideas, developed with the help of Jessica Golden, a self-advocate for people with ID.

What the article is about:

• People with ID often don’t get the funding or services they need — especially in Ontario, but also in other places.
• Because of this, they often can’t choose who supports them.
• This means their basic right to choose and make decisions about their life is not being fully respected.
• Family members often provide unpaid support while also going to work, school, and doing other important things.

The impact on families:

• Parents are expected to care for adults with ID. Often it is mothers.
• Siblings, especially sisters, are also expected to take on caregiving roles.
• Research shows that it is usually not a choice, but something they are pressured to do.
• Many are not prepared for this role. It can be very physical, emotional, and take lots of time and money.
• There is new proof that this work can hurt their health, prevent them from having jobs, and force them to live in poverty.

The impact on people with ID:

• When people with ID don’t get to choose who supports them, they can lose independence and control over their lives. This puts their rights and wellbeing at risk.
• People with ID have been fighting for their rights for a long time — but they can still be forced to accept help from people who don’t even share their goals and values.
• Just like everyone else, people with disabilities don’t always get along with their family.
• But they may have to accept their family’s help with things like eating and getting dressed, even if it causes other problems. This is called coerced care.

Problems with the current system:

• Government programs don’t give enough help to people with disabilities because they expect families to take care of them for free.
• This is why these services are not properly funded.
• Some families have personal support networks to help — but these still rely on women’s unpaid work and can be hard to keep going over time.

Advocacy and inclusion:

• Families have worked hard to create and to improve services.
• But sometimes, family advocacy ignores the voices of people with ID.
• True inclusion means people with ID have the chance to speak for themselves and make their own choices.

A better way forward:

• People with disabilities should always get the support they need. This is called an entitlement-based system.
• It means getting support is a right, like going to school, not just something we can choose to give or not.
• People with ID should be able to choose:

1. Where they live
2. Who supports them
3. How their support is managed

Final thoughts:

• We need to make sure the basic human rights of people with ID are respected. This includes the right to choose.
• We should think about all the work that women do for free, like taking care of a family member with ID, so that their rights are respected too.
• Real change will only happen when we listen to people with lived experience—including people with ID and their families.

In 2018, Siblings Canada conducted an online survey to better understand the experiences of adult sibling caregivers. The survey was completed by hundreds of people and set the groundwork for a paper we co-authored with the Centre for Addiction and Mental Health (CAMH).

The study was published in the Journal of Policy and Practice in Intellectual Disabilities in April 2020 and can be found online.

Since the onset of the COVID-19 pandemic, Siblings Canada has made efforts to understand the experiences of adult sibling caregivers. From May to July of 2020, in collaboration with the Centre for Addiction and Mental Health (CAMH), we conducted an online survey exploring the specific concerns of sibling caregivers, their emotions and the resources they found most helpful during the pandemic.

Later that year, the Journal of Intellectual Disability Research published a paper on our findings titled, Exploring the experiences of siblings of adults with intellectual/developmental disabilities during the COVID-19 pandemic.

The loss of a brother or sister with a disability can be profound.

This document provides advice and tips to support you through this challenging time and we hope you will find it helpful.

In late 2020, we sent a follow-up survey to further understand the sibling caregiving experience and see what had changed since the pandemic started. Sixty of the 91 siblings from the original survey responded; they agreed the pandemic continued to weigh heavily on their families. Sibling caregivers are still experiencing high levels of stress, worry and sadness.

To learn more about our findings, review our follow-up report.

Books can be a way for siblings to feel less alone in their experiences. It can also be helpful for other family members as well as service providers to get a better understanding of the life of siblings.