Adult Siblings of People with Developmental Disabilities: A Guide for Ontario Families

If you’re the brother or sister of an adult with a developmental disability in Ontario, this page is written for you first — and for the parents and providers who care about you too. You are very likely the longest-lasting relationship in your sibling’s life, and yet the system is built around your sibling and your parents, rarely around you. This guide walks through what the research actually says about growing up as a sibling, the unspoken “what happens when our parents can’t?” question, the range of roles you can legitimately choose, and where to find support — in plain language, with every figure and source kept.

This page owns the sibling’s perspective and experience. It connects to, but does not re-derive, the step-by-step succession process (see Future & Succession Planning in Ontario: A Guide for Aging Parents of an Adult with a Developmental Disability) or the trust and trustee mechanics such as Henson trusts and RDSPs (see Henson Trusts and Estate Planning for a Family Member on ODSP in Ontario).

The short version

• Siblings are the overlooked stakeholder, and usually the longest-lasting relationship in a disabled person’s life. Because people with intellectual/developmental disabilities (IDD) increasingly outlive their parents, the sibling bond typically outlasts the parent-child relationship — yet a system focused on the disabled person and the parents rarely includes or prepares siblings until a crisis makes it urgent.
• Growing up as a sibling is genuinely mixed — not a tragedy, not a fairy tale. Love, closeness, pride, empathy and resilience coexist with parentification, feeling overlooked (the “glass child”), absorbing family stress, and pressure to be the “easy” or high-achieving one. The research supports both risk and benefit; it does not support a single story.
• The future-care question is usually unspoken, and it defaults rather than gets decided. Most siblings anticipate taking on some role when parents can no longer provide support. That role can range from primary caregiver, to coordinator of paid supports, to decision-maker/financial steward, to simply an engaged sibling with no care role — and the healthiest path is honest family conversation and genuine choice, not silent assumption.
• Early involvement beats crisis hand-off. Siblings who learn about their brother’s or sister’s life, supports, finances, and preferences gradually are far better positioned than those handed everything the week a parent dies or is hospitalized. Where genuine decision-making authority actually lives is often unclear until it is tested.
• Structured sibling support exists but is uneven. For children, Sibshops (Don Meyer’s model) are widely available, including across Ontario. For adults, the strongest structured supports are US-based (Sibling Leadership Network, Sibling Support Project); Canada now has a national initiative — Siblings Canada (formerly The Sibling Collaborative), part of the Canadian Centre for Caregiving Excellence — offering peer connection, a learning hub, and a mentorship program.

What every sibling and family should know

1. You are likely to be in this relationship longer than anyone else. Sibling relationships are consistently described in the research literature as among the longest-lasting in a person’s life (Connidis & Campbell, 1995; Goetting, 1986, as cited across the sibling-disability literature), and with people with IDD living longer, siblings increasingly outlive parents as the enduring family relationship. This is precisely why it matters that siblings are engaged early rather than as an afterthought.
2. The system is built around the disabled person and the parents, not you. Parents are the recognized caregivers; the disabled person is the client. Siblings have historically been treated as “other” caregivers in research and are rarely at the planning table until a parent dies or becomes incapacitated. Providers, including day programs like AIM, typically interact with parents.
3. Most siblings expect to take on a role — and that expectation is often unspoken. Research finds “caregiver” is the most common role siblings anticipate. Canadian data show the vast majority of adult siblings already play supporting roles and worry about the future, but many families have not fully discussed it: in Siblings Canada’s 2021 survey of over 350 Canadian siblings, 89% already play supporting roles in their sibling’s life, yet only 69% had begun family conversations about the future — and most of those said much remained undiscussed.
4. There is a real range of roles, and they are all legitimate — including no care role. A sibling might become the hands-on primary caregiver, the coordinator/overseer of paid supports, the decision-maker or financial steward, or an engaged, loving sibling who deliberately does not take on a care role. Choice matters.
5. Preparation is best done gradually. Knowing the person’s routines, health, supports, finances, legal arrangements, and — above all — their own preferences, is far easier to absorb over years than in a crisis.
6. Support for you exists, but you often have to seek it out. Children’s Sibshops are relatively available; adult sibling supports are thinner and, in structured form, largely US-based, though Siblings Canada is now a national Canadian resource.
7. The evidence base on adult siblings is still thin, especially longitudinally and in Canada. Much research is on children; adult and Canadian-specific longitudinal data are limited. Treat single statistics with appropriate caution.

The overlooked stakeholder

The framing that leads this guide is well supported. Sibling relationships are “often the longest-lasting and most significant ones in individuals’ lives” (Connidis & Campbell, 1995; Goetting, 1986, as cited across the research literature). In the disability context, that fact takes on weight: as healthcare advances mean people with IDD live longer and often outlive their parents, typically developing siblings are “increasingly expected to assume the caregiving responsibilities” when parents no longer can (meta-synthesis of qualitative studies, ScienceDirect, 2024). Don Meyer, founder of the Sibling Support Project, puts the practical implication bluntly: “If you want to ensure a good long-term outcome for people with disabilities then invest in their siblings because they are going to be there in the long haul” (Empowering Ability podcast #039). Meyer has also described a stark resource imbalance in the US — many staff employed full-time to support parents, versus very few dedicated to siblings (a claim that is illustrative of his advocacy point rather than a verified headcount).

Yet siblings are routinely left out. Researchers have treated siblings as “other” caregivers (Litwin, Stoeckel & Roll, 2014; Marks, Lambert & Choi, 2002), and service providers report that they typically engage siblings only “at the time of parental illness/death or afterwards” rather than proactively (Engaging Siblings of Adults With Autism in Future Planning, clinical protocol, NCT03374072). This is the core friction point (see “Where the system leaves siblings stuck,” below).

Growing up as a sibling — the full range

The honest picture is mixed, and the research supports holding both truths at once.

The hard parts. Some siblings experience elevated anxiety, depression, and social isolation, and take on adult-like caregiving young — “parentification.” A study of 605 Italian adult siblings (aged 19–26) found that sibling-focused parentification, and the distress and lower-quality parent relationships associated with it, can negatively shape the sibling bond; social support and the “perceived benefits of parentification” buffered that distress (Frontiers in Psychiatry, 2022/2023). The “glass child” concept — popularized by Alicia Meneses Maples in a TEDx talk around 2010–2011 — names the dynamic in which a child’s needs are “looked right through” because a sibling’s needs dominate family attention, producing perfectionism, hypervigilance, and a sense of being the “easy one.” Cleveland Clinic, quoting Dr. Eshleman, describes glass children growing “into resilient, mature and responsible adults — not because we wanted to, but because we had to” (“What To Know About Glass Child Syndrome”).

The important caveat against catastrophizing. The “glass child” framing is contested. Some clinicians and writers warn it can pathologize ordinary families and frame disability itself as toxic (e.g., the March 2026 WBUR Cognoscenti essay “My twin brother was disabled, but I don’t consider myself a ‘glass child’”). Researcher Meghan Burke (University of Illinois; her work now continues at Vanderbilt) notes that most siblings surveyed describe their relationships as positive and report growth in compassion, resilience, and awareness of injustice. A 2022 twin study led by Ariel Knafo-Noam (Hebrew University), published in Child Development, found siblings of children with disabilities may develop greater cognitive empathy. The balanced reading: real risks exist, real benefits exist, and outcomes are shaped by family communication, support, and the severity/behavioural profile of the disability — not predetermined. A systematic review (Clinical Child and Family Psychology Review, 2024) found the literature genuinely mixed, with siblings reporting both guilt, anxiety and depressive symptoms and empathy, resilience and prosociality.

The lifelong emotional dimension

The emotions evolve but rarely disappear: grief (including “ambiguous loss” and anticipatory grief), guilt, worry, resentment, pride, and loyalty. Guilt is common — a sibling can feel guilty for being “the one who is okay,” for having opportunities their brother or sister does not, or for not wanting a caregiving role (Institute on Community Integration, “Navigating Grief and Loss: A Guide for Siblings of People with IDD,” Impact, Vol. 32, No. 2). Worry intensifies with age as siblings foresee the day parents can no longer provide care; the Canadian “Understanding the Sibling Experience” report described siblings in their 40s living with a “looming” feeling — “Siblings can see this impending crisis coming… What is going to happen when my parents can’t support my brother and sister? It is on me.” Grief is not a single event but recurs at life milestones, and survivor’s guilt and loss of purpose can surface acutely if a sibling with IDD dies. Alongside the hard feelings sit genuine pride, love, and loyalty — the relationship is valued in itself, not only as a duty.

The future-care question

This is the heart of the sibling experience in adulthood, and it is where assumptions most often replace conversation.

The expectation is widespread and often silent. “Caregiver” is the single most common role siblings anticipate when parents can no longer provide care (Hodapp et al., 2017). In a 163-item survey of 757 siblings, Burke, Taylor, Urbano & Hodapp (2012, American Journal on Intellectual and Developmental Disabilities) found siblings “expected to assume greater caregiving responsibility… if they were female, had closer relationships with and lived closer to their brother or sister… and were the lone sibling without a disability.” Parents frequently expect a sibling to step in while simultaneously being reluctant to formally “put it on them” — one mother’s much-quoted sentiment: “We never would put it on her. It’s not her responsibility. But I know she will be there for her” (NCT03374072 focus-group research).

The range of roles. It is important to name that “taking over” is not one thing. A sibling may become:

• the primary caregiver (hands-on daily support, sometimes co-residence);
• the coordinator/overseer of paid supports (managing staff, services, appointments — not doing the hands-on care);
• the decision-maker / financial steward (the person’s representative and the steward of their financial security); or
• an engaged sibling without a care role — remaining a loving, present brother or sister while paid or other arrangements carry the care.

All of these are legitimate. The research and the Canadian sibling organizations converge on the same message: what matters is choice and honest family conversation, not a default assumption that lands on one child (often a sister, often the geographically closest, often the only non-disabled sibling). The step-by-step succession process itself is walked through in Future & Succession Planning in Ontario: A Guide for Aging Parents of an Adult with a Developmental Disability; here the point is the sibling’s viewpoint: the right to be asked, to understand, and to choose the role that fits.

Canadian data on the reality. Siblings Canada’s 2021 online survey of more than 350 siblings from across Canada found that 89% play supporting roles in the lives of their siblings with disabilities; 85% feel it is important to connect with other siblings; 69% have had family conversations about the future while recognizing much remains to discuss; and while 20% currently live with their sibling with a disability, 41% anticipate living with them in the future (Siblings Canada 2022 infographic, “Understanding the emotional and financial wellbeing of siblings”). Reported barriers to planning were emotional (“especially fear”), family dynamics (e.g., differing views, a parent having died), parents not being ready or avoiding the conversation, and “the unknown” (living situations, finances, limited information from parents). The earlier 2018 report “Understanding the Sibling Experience” (Ries, Goll & Rossi), drawn from a 2017 needs-assessment survey of over 360 Canadian siblings, found that concern about the mental health of the brother or sister — and of the parents — was the single most frequent challenge, ahead of housing, managing relationships, and emotional support for the sibling themselves; notably, financial support ranked lower than mental-health concerns.

Getting ready, gradually

Early involvement beats a crisis hand-off. Providers consistently emphasize engaging siblings proactively rather than at the point of parental death (NCT03374072). What a sibling should gradually come to know and gather:

• The person’s life and preferences: routines, likes/dislikes, communication style, friendships, day programs (e.g., AIM), how they like to spend time, and — critically — what they want for their own life.
• Daily supports: who provides what, medications and health needs, behavioural supports, the paid staff and agencies involved.
• Finances: benefits (in Ontario, ODSP and Passport funding — the latter administered through Developmental Services Ontario, providing a base annual allocation with additional funding up to a defined maximum, subject to assessment and waitlists), bank/benefit arrangements, and any savings vehicles. The trust and RDSP mechanics that protect that money are covered in Henson Trusts and Estate Planning for a Family Member on ODSP in Ontario.
• Legal arrangements: who, if anyone, is the substitute decision-maker, and what decision-making supports exist (the mechanics of guardianship, powers of attorney, and supported decision-making are covered in the companion legal-capacity guide).
• Documentation: a “letter of intent” and similar records that capture the person’s history and preferences. Casale et al. (2021, Journal of Intellectual Disability Research), analyzing 495 siblings, found families most often identify a successor caregiver and hold planning discussions, but least often complete a letter of intent or secure residential placements — meaning the practical, transferable knowledge is frequently the last thing done, if at all.

The core message: information transferred gradually is absorbable; information dumped in a crisis is overwhelming.

The relationship is worth it for its own sake

A sibling is not only a future caregiver. The relationship deserves to be nurtured on its own terms — as friendship, shared history, fun, and mutual support. Research examining the sibling bond from both perspectives finds most siblings of people with IDD report positive relationships, and that siblings can be socializing agents who, being “less protective than parents,” promote independence and community belonging in the adult with a disability (NCT03374072). For a community like AIM’s, this reframes the sibling not as a caregiver-in-waiting but as a lifelong relationship worth supporting for its own sake — one of the most natural routes to Social Inclusion and Belonging for Adults with Developmental Disabilities in Ontario — which, as Meyer argues, also happens to produce the best long-term outcomes for the person with a disability.

Support for siblings — what currently exists (verified, 2025–2026)

For children — Sibshops (widely available, including Ontario). Created by Don Meyer, who launched the first Sibshop in 1982 at the University of Washington, Sibshops are lively, recreational peer-support workshops for school-age siblings (typically ages 8–13). They are a program of the Sibling Support Project (founded 1990; a program of Kindering in Washington State). Sibshops operate in hundreds of locations across the US, Canada, and more than a dozen other countries. In Ontario, they are run by numerous organizations, including Community Living Toronto, ErinoakKids (Mississauga/Halton–Peel region — free monthly workshops for siblings of active clients ages 4–18), Empower Simcoe (Barrie), and Autism Ontario chapters. Because AIM serves Waterloo Region, Hamilton, and Halton, ErinoakKids and Autism Ontario chapters are the most geographically relevant children’s options; families should confirm current schedules directly.

For adults — thinner, and the strongest structured supports are US-based.

• Sibling Leadership Network (SLN) — a US national organization founded in 2007 providing information, connection, and advocacy tools; it operates through state chapters (the SLN reports chapters in a majority of US states). Membership is free. Not a Canadian organization, but its resource library (future planning, caregiving, self-care) is openly accessible.
• Sibling Support Project / SibNet, Sib20, SibTeen — SibNet (created 1996 as a listserv; a Facebook group since 2009) is the oldest and largest online community for adult siblings; Sib20 (for siblings in their twenties) and SibTeen (adolescents) serve younger cohorts. These moderated groups are open internationally.
• Sibs (UK) and Siblings Australia (founded 1999) — long-standing national sibling organizations abroad, useful for freely available resources such as Sibs’ “Self-care for Siblings.”

In Canada — Siblings Canada (verify status; recently changed). The Canadian landscape has changed and this must be dated carefully. The organization began as The Sibling Collaborative and has since become Siblings Canada, an initiative of the Canadian Centre for Caregiving Excellence (CCCE), itself a program of the Azrieli Foundation (Siblings Canada page last modified September 29, 2025). As of 2026, Siblings Canada offers: a Learning Hub of free resources (financial security, mental health, communicating with family); virtual events; a Sibling Peer Mentorship Program matching adult siblings one-to-one; guides co-published with AIDE Canada (on mental health and on communicating with family about the future); and Savvy Siblings, a free self-paced online course on building a sibling’s financial security. It also runs Acceptance and Commitment Training (ACT) workshops for siblings, typically twice a year. Its research partners have included CAMH’s Azrieli Adult Neurodevelopmental Centre and Western University. Because names, hosts, and programs in this space change (the sibcollab.ca site and “The Sibling Collaborative” branding still linger online), anyone presenting Siblings Canada as available should confirm the specific offering is still live via canadiancaregiving.org.

When there’s more than one sibling — family dynamics

Where there are multiple siblings, expectations rarely fall evenly. Research repeatedly finds caregiving concentrates on female siblings, the geographically closest, those with the closest relationship, and the lone non-disabled sibling (Burke et al., 2012; Lee, Burke & Arnold, 2019). This asymmetry breeds resentment when it is assumed rather than negotiated — a dynamic well documented in family-caregiving accounts more broadly. Fairness is not necessarily equal division; it is transparent division that each sibling has genuinely agreed to. Siblings (more than parents) report wanting more open family communication about planning (Lee & Burke, 2019/2020, parent–sibling dyad research) — a recurring finding that points to the single most protective family behaviour: talking early, explicitly, and repeatedly.

Where the system leaves siblings stuck

The system rarely includes or prepares siblings until it is suddenly urgent. Family-support workers report engaging siblings at the point of parental crisis, not before (NCT03374072). In Ontario, adult developmental services are accessed through Developmental Services Ontario (DSO), with long waitlists for residential placement and Passport funding (community reports describe waits ranging from several years to 20+ years for residential supports); when a caregiving parent dies or becomes unable to provide care, DSO can escalate a person’s priority — but the sibling is often navigating this system for the first time, under pressure, and is advised to document the family’s caregiving situation in writing to DSO annually. The deeper friction is that genuine legal decision-making authority does not automatically pass to a sibling: being the person who shows up is not the same as being the recognized decision-maker or the manager of funds. The specifics of who holds legal authority and how it is established belong to the companion legal-capacity and Henson Trusts and Estate Planning for a Family Member on ODSP in Ontario guides; the sibling-relevant point is that showing up in a crisis without prior standing or information is the hardest possible entry.

Grey areas and points of confusion

• How much should a sibling be expected to take on? This is genuinely contested. One strand of research and advocacy — the “coerced care” analysis by Spagnuolo, Boulanger & Ries (Siblings Canada co-founder), “Sibling Relationships and Developmental Disability Services: From Coerced Care to Entitlement,” Disability Studies Quarterly — argues that a system relying on unpaid family labour (disproportionately women) is unjust to both siblings and the disabled person, whose right to choose their own supporters is compromised; it calls for an entitlement-based system in which support is a right rather than something families must provide for free. Another strand emphasizes that many siblings want a role and do not necessarily feel burdened (Kruithof et al., 2021). Both can be true; the resolution is choice, not a preset expectation.
• The “glass child” narrative. Useful for naming real, under-acknowledged pain, but contested as potentially pathologizing families and disability. Present it as one lens, not settled science.
• Positive vs. negative outcomes. The literature is genuinely mixed and often inconclusive; increased caregiving across the lifespan is well supported, but psychological outcomes vary widely and depend on mediating factors (family communication, social support, disability severity, and behavioural profile).
• Thinness of longitudinal and Canadian data. Most research is cross-sectional and focused on children; robust longitudinal data on adult siblings, and Canadian-specific data, remain limited. Canadian survey samples are modest and self-selected — the 2020 CAMH/Sibling Collaborative peer-reviewed paper (Redquest, Tint, Ries, Goll, Rossi & Lunsky, Journal of Policy and Practice in Intellectual Disabilities, 2020) analyzed 260 Ontario siblings across three age bands (20–29, 30–49, 50+), and the broader national needs-assessment reached about 360 respondents.

How current is this, and what to double-check

• Organizational status changes fast. The most important dating note: The Sibling Collaborative is now Siblings Canada, under the Canadian Centre for Caregiving Excellence (a program of the Azrieli Foundation). Older links (sibcollab.ca) and references to “The Sibling Collaborative” persist online and should be read as the predecessor. Verify any sibling program is still active before relying on it.
• US vs. Canadian applicability. Much structured sibling infrastructure (SLN, Sibling Support Project/SibNet) and most quantitative future-caregiving research is US-based; funding programs, legal roles, and services differ in Ontario, where DSO, ODSP, and Passport are the relevant systems.
• Self-selected samples. Sibling surveys typically over-represent engaged, connected siblings; the experiences of estranged or uninvolved siblings are under-captured.
• Popular vs. peer-reviewed sources. “Glass child” content is largely from clinics, blogs, and media; the caregiving/future-planning findings are peer-reviewed. This guide distinguishes the two.
• A specific unverified claim flagged. Don Meyer’s often-repeated contrast that hundreds of staff support parents while only about one supports siblings is illustrative advocacy rhetoric, not a verified headcount; it is presented as his framing, not as a statistic.
• Scope boundaries. By design, this guide does not detail the succession process, trust/RDSP mechanics, or the legal establishment of decision-making authority; those live in the companion Future & Succession Planning in Ontario: A Guide for Aging Parents of an Adult with a Developmental Disability, Henson Trusts and Estate Planning for a Family Member on ODSP in Ontario, and legal-capacity guides.
• Currency. All organizational offerings, program availability, and Ontario funding figures should be re-verified periodically; this guide reflects information available as of July 2026. It is general information, not legal or financial advice.

Related: Future & Succession Planning in Ontario: A Guide for Aging Parents of an Adult with a Developmental Disability · Henson Trusts and Estate Planning for a Family Member on ODSP in Ontario · Social Inclusion and Belonging for Adults with Developmental Disabilities in Ontario