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What happens when our parents aren't around anymore?

Updated: Apr 6, 2023

One of the questions that so many family members have about their loved one with an intellectual disability is what will happen to them when they’re gone.
It isn’t a fun subject, but it’s important to consider. You will play a central role in the lives of your sibling. Having a plan in place with your sibling(s), parents/guardians, and greater support network will help ensure peace of mind and full inclusion.
Today, we’re going to talk about future planning.

Siblings will be there when parents are not
Two people sit at a table looking at a laptop.
It’s a fact of life – your parents won't always be around. Many siblings will take on a primary advocacy and/or support role in the lives of their sibling after a parent or guardian’s death.
This isn’t a pleasant subject, but it’s an important one to come to terms with. You may have to play a central role in your sibling’s direct or in-direct support needs. This could come in the form of helping to manage their finances or support staff, providing them with a place to live, or supporting them in their daily lives.
Whatever the case, it’s important to be aware and to have a conversation with your sibling and your parents/guardians about what that future could look like and the role you will play in it.

To get the conversation started, check out some of the future planning resources available online. The Plan Institute offers a useful future planning tool that will help to maximize your sibling’s inclusion and support them to live a fulfilling life on their own terms.

Leverage your relationship to support your sibling in living their best life
Text-based photo with a definition of legal capacity on the left. On the right, an image of a woman with a disability speaking into a microphone at an event.

Parents or guardians play a central role in the decision-making process for people with an intellectual disability. Financial decisions, housing arrangements, and support worker hiring are often done by parents or guardians. This is often the case because we don’t recognize the autonomy of people with an intellectual disability in making their own decisions.
The ability to make your own decisions, also known as “legal capacity,” is not a guaranteed right for people with intellectual disabilities. Legal capacity is defined as “the capacity to have rights and exercise those rights freely.” People with intellectual disabilities are denied legal capacity through substitute decision-making laws and systems. In fact, New Brunswick is the only province or territory in Canada to implement a court-recognized supported decision making process that affirms the autonomy of people with intellectual disabilities.
Decision making is a crucial area where you can advocate with your sibling.
Although not always the case, a parent’s expectations for the lives of their child with an intellectual disability may be entirely different than what they personally want out of life. As a sibling, you have a lens into your brother or sister’s life that your parents do not. You may talk about interests, relationships, or goals your sibling is not comfortable discussing with your parents.

Knowing what your sibling wants out of life puts you in their corner during future planning. Until every person with an intellectual disability has a right to make decisions for themselves, you can offer a powerful voice of support so they can live a life they choose, not one chosen for them.

Financial literacy is crucial for both you and your sibling
Someone holding a jar full of money.
Registered Disability Savings Plans, Hansen Trusts, Disability Tax Credits … there is a labyrinth of municipal, provincial/territorial, and federal funding programs that people with an intellectual disability and their families need to navigate to get government support. This convoluted system of bureaucratic nonsense makes it nearly impossible for someone without a professional background in public policy, financial planning, or both, to access the financial resources your sibling is entitled to. The system is entirely ableist and, regardless of government attempts to make it more accessible, is nearly impossible for anyone to navigate effectively.

It is up to you, your sibling, and their support network to do the navigating.

Siblings Canada recently launched a financial literacy course for the siblings of people with an intellectual disability. Savvy Siblings is an excellent starting point to make you aware of the benefits that exist for people with disabilities and how to navigate the system.

It's a lot to process, and that’s okay

A pink neon sign on a forest background that reads "and breathe."

This conversation can be a lot. We’re talking about a difficult and emotional subject. The loss of a parent or guardian is traumatic, and becoming the primary advocate for your sibling is a significant responsibility. But you’re not navigating this process alone. Your sibling is going through the same emotions and experiences – it will be a new dynamic for everyone.

This is why it’s important to think about the future now. Many siblings are caught completely off guard by this new role. Accidents happen, and many people are unprepared for a more direct role in their sibling’s life. Time spent thinking and preparing for the (inevitable) future means that, when the time comes, you can spend less time processing this new role and more time focusing on what matters – spending time with your family and friends and moving into this new phase of life together.

You’re building an inclusive future together

Two people holding hands.

A major strength of being the sibling of someone with a disability is that inclusion is a normalized part of your life. By recognizing your sibling’s right to live a life of their own, in which they can pursue their passions and interests on their own terms, you are helping to build a more inclusive future for all people with disabilities.

Change is incremental – it happens gradually, with one small step forward at a time.

Take it one day at a time and we’ll create a future where all people with an intellectual disability lead fully inclusive lives of their own choosing.
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