Navigating Healthcare for an Adult with a Developmental Disability in Ontario

If you’re supporting an adult with a developmental disability in Ontario, one of the hardest and most important jobs is helping them get good healthcare. Adults with a developmental disability tend to have more health needs but poorer access to care — and the single biggest thing a family or support worker can do about it is build a steady relationship with one willing family doctor, and prepare well before every appointment. This guide walks through the access gap, how to find and keep primary care, the tools that make appointments work, hospital visits, transitions, and where to find specialized help — in plain language, with every figure sourced and dated.

The short version

• Adults with a developmental disability in Ontario have more health needs but worse access to care. They see family doctors about as often as everyone else, yet get far less preventive care and die prematurely at nearly four times the rate of other adults (ICES/H-CARDD, 2019: 6.1% vs 1.6% dying before age 75). The highest-leverage move a family or support worker can make is securing and keeping a continuous relationship with one willing family doctor.
• Ask your family doctor for a periodic comprehensive “Health Check.” It’s built on the Canadian consensus guidelines (Sullivan et al., 2018) and the free Surrey Place tools, and since April 1, 2023 Ontario physicians can bill OHIP fee code K133 for exactly this kind of visit.
• Prepare every appointment and hospital visit in advance using a “health passport” / “About My Health” form and a “My Hospital Form” (both from Surrey Place), by tracking symptoms, and by bringing someone who knows the person well. Hospital and emergency-room visits are especially high-risk for communication breakdown, missed pain, and disrupted routine.
• The move from children’s (pediatric) to adult care is a documented drop-off point. Start planning early — age 14 and up in Ontario’s system — and use Ontario Health’s Transitions quality standard to insist on a named “most responsible provider.”
• Specialized developmental-disability health clinics are scarce and mostly Toronto-centred (for example, Surrey Place). In Waterloo Region, Hamilton, and Halton there is no dedicated adult primary-care clinic for intellectual and developmental disabilities, so families rely on general family practices plus these clinical tools.

What every family should know

1. The access gap is real, measured, and persistent. In Ontario, roughly 0.78% of adults have a developmental disability (about 66,000 adults under 65; H-CARDD Atlas, 2013). They have higher rates of chronic disease and mental health conditions, yet receive worse preventive care and have dramatically worse outcomes in the system.
2. Good primary care is protective. Greater continuity with one primary-care provider is linked to fewer emergency department visits — and this effect is stronger for adults with a developmental disability than for the general population (Durbin et al., 2018).
3. The periodic Health Check is the central proactive tool. It’s recommended by the Canadian consensus guidelines and supported by free, downloadable Surrey Place tools, and the evidence shows it improves preventive care and clinician confidence.
4. Preparation closes gaps. Health passports (“About My Health”), symptom tracking, and a knowledgeable support person genuinely improve appointments and hospital stays — though passports only work if staff actually read them.
5. Hospitals and emergency rooms are the highest-risk settings. Communication breakdown, unmanaged pain, restraint, and disrupted routine come up again and again; family or staff presence and a prepared hospital form are the main protections.
6. Transitions and specialized services are weak points. The move from pediatric to adult care is a well-documented drop-off, and specialized developmental-disability health services are unevenly available across Ontario.

The access gap — why this matters

Adults with a developmental disability (Ontario’s legal and funding umbrella term under the Services and Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act, 2008; the advocacy sector and clinical literature often use “intellectual disability” or “IDD” — intellectual and developmental disabilities) experience worse health and worse access despite greater need.

Population and burden. The H-CARDD Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario (ICES/CAMH, 2013) identified 66,484 adults aged 18–64 with developmental disabilities — a prevalence of 0.78%, higher than the 0.5% previously assumed. This group lived in poorer neighbourhoods and had higher rates of physical and mental health problems than other Ontario adults.

The outcomes gap (ICES/H-CARDD, “Addressing Gaps in the Health Care Services Used by Adults with Developmental Disabilities in Ontario,” Lin E, Balogh RS, Durbin A, et al., Feb 21, 2019; study period 2010–2016). Compared with adults without developmental disabilities, adults with developmental disabilities were:

• Nearly 4 times more likely to die prematurely (before age 75): “6.1 per cent of adults with developmental disabilities compared to 1.6 per cent of adults without developmental disabilities died prematurely.”
• Nearly 2 times more likely to have a repeat emergency-department visit within 30 days: 34.5% vs 19.6%.
• More than 3 times more likely to be readmitted to hospital within 30 days: 7.4% vs 2.3%.
• 6.5 times more likely to have an alternate-level-of-care (ALC) day: 4.6% vs 0.7%.
• 17.5 times more likely to spend at least one day in long-term care: 3.5% vs 0.2%.

The preventive-care gap. Although adults with a developmental disability see family physicians about as often as others, only 22.0% received a periodic health examination over a two-year period (vs 26.4% of others), and they had lower screening rates for colorectal, breast, and cervical cancer (Ouellette-Kuntz et al., 2015; H-CARDD). They are also more likely to have cancer diagnosed at an unknown stage — roughly twice as likely for breast (1.94×), colorectal (1.90×), and lung (2.17×) cancer (Ontario Cancer Registry linkage, 2007–2019).

Emergency-room use. About one in three adults with a developmental disability visit the emergency department each year; in Ontario they are seen there roughly twice as often as the general population, and continuity of primary care reduces this (Durbin et al., 2018: 33.96% vs 20.28% visiting the ED).

The common barriers (from peer-reviewed reviews): communication difficulties (the most consistently cited); clinician discomfort and lack of training; time-limited appointments; physical and attitudinal barriers; fragmented and poorly coordinated care; fear and negative past experiences; and a loss of the person’s own voice when clinicians speak only to the supporter (integrative reviews of barriers and facilitators to primary healthcare for people with intellectual disabilities and/or autism, 2020–2022).

This guide focuses on navigating the system. Related topics have their own pages: the underlying physical-health differences and how to stay well are covered in Physical Health and Active Living for Adults with Developmental Disabilities in Ontario; mental health, dual diagnosis, and diagnostic overshadowing in Dual Diagnosis and Diagnostic Overshadowing in Ontario: A Family Guide to Mental Health and Developmental Disability; aging and dementia in Aging with a Developmental Disability in Ontario: A Guide for Families; and communication methods and AAC in Communication and AAC for Adults with Developmental Disabilities in Ontario. Consent and capacity are covered separately.

Finding and keeping a family doctor

A continuous relationship with one willing family doctor or nurse practitioner is the foundation. Continuity — seeing the same provider over time — is linked to fewer emergency-room visits, and more strongly so for adults with a developmental disability (Durbin, Balogh, Lin, Wilton, Lunsky, Journal of Autism and Developmental Disorders, 2018).

How Ontario families find a provider. Ontario has a real primary-care shortage, though it is the least severe in Canada. Per OurCare lead Dr. Tara Kiran, quoted in CMAJ (April 24, 2023): “Ontario fared the best with just 13% of people saying they didn’t have a primary care provider they see regularly” — versus roughly 27% in British Columbia and about 31% in Quebec and Atlantic Canada. (OurCare’s 2025 follow-up found about 88% of Ontario respondents now report having a regular provider.)

• Health Care Connect (Ontario’s provincial matching program): register online at Ontario.ca/healthcareconnect or by phone. A nurse “Care Connector” matches registrants to providers accepting patients; priority goes to higher-need people, and a disability or chronic condition can be flagged in the registration. Registration doesn’t guarantee a match, and waits can be long. Under the $2.1-billion Primary Care Action Plan (launched January 27, 2025, led by Dr. Jane Philpott’s Primary Care Action Team), the province committed to connecting everyone on the Health Care Connect waitlist as of January 1, 2025 with a provider by Spring 2026, and everyone in the province by 2029. Per Health Minister Sylvia Jones (CBC News, January 12, 2026), the waitlist held “234,000 people…as of the start of 2025 and now there are about 57,000” — a reduction of more than 75%.
• Other routes: the CPSO Physician Register (to find contact information and call to ask about availability), Community Health Centres, and Family Health Teams (team-based care that can be well-suited to complex needs).

What good primary care looks like for this population (per the Canadian consensus guidelines and Surrey Place): a person-centred approach; comprehensiveness and continuity; noting in the chart that the patient has a developmental disability; allowing extra time and multiple visits; involving someone who knows the person; and proactive, preventive care rather than reactive, symptom-only visits.

The comprehensive periodic Health Check

While routine annual physicals are no longer recommended for asymptomatic general-population adults, the Canadian consensus guidelines specifically recommend a periodic comprehensive health assessment (“Health Check”) for adults with a developmental disability, because they are at risk of specific and often overlapping conditions and may communicate symptoms differently.

The clinical backbone — the Canadian consensus guidelines. Primary care of adults with intellectual and developmental disabilities: 2018 Canadian consensus guidelines (Sullivan WF, Diepstra H, Heng J, et al.), Canadian Family Physician 2018;64:254–279. This updated the 2006 and 2011 versions and was produced through the Developmental Disabilities Primary Care Program (DDPCP) at Surrey Place, Toronto, funded by the Ontario Ministry of Health and the Ministry of Children, Community and Social Services.

The tools — Surrey Place “Tools for the Primary Care of People with Developmental Disabilities.” First published in 2011 (with the MUMS Guideline Clearing House) and updated in 2019 and 2023, they are free at ddprimarycare.surreyplace.ca. Key tools families can bring to a doctor:

• IDD Health Check (full, brief, and Telus PS Suite EMR versions; English and French) — organizes a comprehensive assessment: a developmental-disability-specific Cumulative Patient Profile, chronic disease management, a systems review and risk assessment (including sleep, nutrition, mental health, trauma, substance use, sexual health, safety and abuse, immunizations, cancer screening, and medication review), a physical exam, and a written health action plan.
• About My Health — a worksheet the person and caregiver complete describing likes and dislikes, communication strategies, accommodations, and what helps them feel at ease; also available as an Ocean (CognisantMD) e-form.
• My Health Care Visit — prepares for and records a specific visit.
• Health Watch Tables — syndrome-specific check-ups (for example, Down syndrome, autism).

Evidence the Health Check works. A two-site Ontario family-health-team study (Durbin, Selick, Casson, Green, Perry, Abou Chacra, Lunsky; Canadian Family Physician 2019;65(Suppl 1):S66–72) found that patients who received a Health Check had significantly higher documentation of blood pressure, weight, BMI, and influenza vaccination (all exceeding 70%, P < .001), and non-significantly higher rates for mammograms (63% vs 54%), fecal occult blood testing (39% vs 23%), and diabetes testing (80% vs 61%) — comparable to general-population rates. Pap-test rates stayed low in both groups (34% vs 32%). Staff who performed Health Checks reported significantly higher comfort and skill, though fewer than half felt they had all the necessary skills and resources. International evidence (for example, UK incentivised annual health checks; Buszewicz et al., 2014) similarly shows increased preventive maneuvers and disease detection.

The Ontario billing lever. Effective April 1, 2023, Ontario added OHIP fee code K133 (“Periodic Health Visit for Adults with Intellectual and Developmental Disabilities”) to the Schedule of Benefits, at a fee of $160.00. You can tell your doctor this fee code exists — it explicitly funds the extra time a Health Check requires.

Practical use: download the IDD Health Check and About My Health forms, complete them at home, and bring them to the doctor. A Health Check often takes more than one visit; a team-based approach (clerical staff, nurse, physician) and doing some history-taking virtually can make it feasible.

Preparing for appointments

• Build a health passport / “About My Health” document and keep it current; update it whenever there’s a significant change or a new provider (including the emergency room or specialists). Include diagnoses, medications, allergies, baseline behaviour, communication method, pain signals, sensory sensitivities, accommodations, and substitute-decision-maker contacts.
• Track symptoms over time (many people with a developmental disability won’t volunteer symptoms), including changes in behaviour, sleep, appetite, and function — these are often the only signs of pain or illness.
• Bring someone who knows the person well to help interpret and coordinate; the guidelines recommend identifying one such person to attend appointments and help coordinate care.
• Make short appointments count: book longer or double appointments, send the About My Health / My Health Care Visit form ahead, prioritize the top concerns, and request the first or last slot to reduce waiting-room time. Bringing the person’s usual communication supports or AAC device also helps — see Communication and AAC for Adults with Developmental Disabilities in Ontario.
• A caution on passports: the evidence is mixed — passports help when staff read and use them, but two randomized studies found no measurable improvement, largely because providers didn’t use them consistently. Hand the document over explicitly and ask staff to read it.

Hospital and emergency visits — the highest-risk setting

Emergency-room and inpatient stays concentrate risk: an unfamiliar environment, disrupted routine, time pressure, rotating unfamiliar staff, communication breakdown, unrecognized or undertreated pain, and use of restraint. A qualitative study of family caregivers of hospitalized adults with a developmental disability (Charles, 2020) surfaced four themes — “Need for Advocacy,” “Need for Better Communication,” “Sense of Abandonment,” and “Lack of Confidence” — with concrete worries about medication errors, poor pain management, and toileting. Systematic reviews of acute-hospital experiences point to the same three problems — communication, information sharing, and compassion and respect — and suggest hospital passports and intellectual-disability liaison-nurse roles help.

What helps:

• Prepare Surrey Place’s “My Hospital Form” in advance (developed in 2020, originally a COVID-19 hospital transfer form, with input from Dr. Yona Lunsky and Dr. Ullanda Niel). It communicates medical information, substitute-decision-maker contacts, and communication and behavioural support needs, and is meant to be ready before an emergency.
• Family or staff presence provides a calming, interpreting, and monitoring role — especially for pain, which is frequently missed.
• Bring the health passport / About My Health and hand it directly to triage and nursing staff.

Accommodation rights in hospital matter here too, but the depth of those rights (the AODA, the Human Rights Code, informed-consent obligations) and the detail of consent and capacity are covered separately.

Being a good support person in the room

Aim to be an effective supporter without taking over:

• Don’t speak over the person. The guidelines and reviews stress supported decision-making with direct patient communication and balanced (not supporter-dominant) involvement; the person’s autonomy suffers when clinicians talk only to the supporter.
• Prepare and share information (passport, symptom log), help interpret communication, and prompt the person rather than answer for them.
• Know the consent and privacy basics — in Ontario, a substitute decision-maker under the Health Care Consent Act acts only when the person is not capable for the specific decision at hand. (Capacity and consent detail is covered separately.)

The pediatric-to-adult transition

Aging out of pediatric services is a documented drop-off in coordinated care. Pediatric care tends to be centralized, coordinated, and relationship-rich; adult care is more fragmented, and families often become the de facto transition coordinators. Youth with a developmental disability are also more likely to have complex co-occurring conditions, magnifying the risk of falling through the cracks (Frontiers in Pediatrics review, 2025).

How to prepare (Ontario specifics):

• Start early. In Ontario, integrated (tri-ministry) transition planning is available to young people 14 and older who meet the developmental-disability definition. Best-practice frameworks (for example, CanChild’s “Best Journey to Adult Life,” 2009; CAPHC national approach, 2016) recommend beginning around ages 12–14.
• Use Ontario Health’s quality standard Transitions From Youth to Adult Health Care Services (Health Quality Ontario, 2022; for ages 15–24). Its six focus areas: early identification and readiness, information-sharing and support, a written transition plan, a coordinated transition with a single “designated most responsible provider,” introduction to adult services before transfer, and a completed transfer.
• Tools: SickKids Good2Go readiness checklists (for patients and parents); the Surrey Place transitions resources; and confirm an adult family doctor is in place before pediatric care ends.

Specialized supports in Ontario — verify and date

Specialized developmental-disability health services exist but are scarce and unevenly distributed, concentrated in Toronto.

• Surrey Place (Toronto) runs the Family Medicine Consultation Clinic for adults 18 and older with a developmental disability, providing specialized health assessments and recommendations. Eligibility: the client must be registered with Developmental Services Ontario (DSO) and have a referral from their primary care provider sent to Surrey Place. It also houses the DDPCP, which produces the guidelines and tools (funded by the Ontario Ministry of Health and MCCSS).
  • Current disruption: Surrey Place OPSEU members (Local 511, about 350 workers) began strike action on May 25, 2026, part of a coordinated province-wide OPSEU/SEFPO action (per TorontoToday, May 25, 2026, “about 350 workers at developmental services organization Surrey Place walked off the job,” among roughly 800 workers across four Toronto agencies and about two dozen agencies province-wide). Surrey Place’s own notice stated: “Services remain open, however we are operating with significantly reduced clinical capacity. In addition, we are unable to process new intakes or accept new inquiries at this time… There will be a delay of up to 6-8 weeks for service to begin.” Verify current status before relying on Surrey Place services.
• H-CARDD (CAMH, with ICES) is a research and knowledge-translation program, not a direct clinical service; it produces the population research and the clinician and family resources.
• The OHIP K133 fee code (since April 1, 2023) is a structural support that lets any Ontario physician be paid for a periodic Health Check. Per Ontario’s billing brief, it requires the patient’s developmental disability to have onset before age 18 and a minimum of 50 minutes total direct contact; one such code is payable per patient per physician per 12 months. There is no published data on how much it is being used since 2023 — the literature suggests uptake “remains limited.”
• AIM’s regions (Waterloo Region, Hamilton, Halton): there is no dedicated adult primary-care clinic for intellectual and developmental disabilities in these areas. Hamilton Health Sciences’ developmental clinic is pediatric (under 18). Bethesda (in the Niagara/Hamilton area) offers specialized behavioural and allied-health supports (psychology, occupational therapy, speech-language pathology, social work, behaviour consultation), not primary medical care. Families in these regions rely on general family practices applying the Surrey Place tools. (Reena is developing a multidisciplinary primary-care clinic model in York Region — outside AIM’s regions and still emerging as of 2025.)
• The scarcity is documented. The Reena/Surrey Place/CAMH “Policy Brief: Primary Care for Adults with IDD” (dated July 14, 2025) states that adults with a developmental disability “require targeted outreach and accessible supports to help navigate and transition” and must be “explicitly identified as a priority population for attachment” under Ontario’s Primary Care Action Plan; it calls for “regional interdisciplinary consultation and outreach teams… particularly in underserved and rural areas,” noting that despite strong evidence, guidelines, and tools, “uptake and consistent implementation remain limited.” Researchers note Canada has limited specialized training in this area and “an absence of local community-based clinical teams.”

Medication review

A periodic medication review matters because taking many medications at once (polypharmacy) and overuse of psychotropic drugs are common. In Ontario, over a six-year period, 39.2% of 51,881 adults with a developmental disability filled at least one antipsychotic prescription, rising to 56.4% among those living in group homes (Lunsky, Khuu, Tadrous, Vigod, Cobigo, Gomes, 2017) — often without a documented psychiatric diagnosis, suggesting off-label use for behaviour. The 2013 Atlas found that adults with a developmental disability and a co-occurring psychiatric diagnosis were more likely to be dispensed five or more medications at once (29.4% vs 13.4%). People with a developmental disability can be more sensitive to medication effects and less able to report side effects. The Health Check builds in a medication review (ideally with a pharmacist reconciliation). Psychotropic use and dual diagnosis are covered in more depth in Dual Diagnosis and Diagnostic Overshadowing in Ontario: A Family Guide to Mental Health and Developmental Disability.

Where families get stuck

The core problem is that mainstream healthcare is not designed for this population: standard appointment lengths, triage that depends on the patient reporting symptoms, rotating hospital staff, and fragmented cross-sector care all disadvantage people who communicate differently and have complex needs. The real leverage lives in a few concrete places families can actually use: a continuous family doctor (the single biggest lever), the Canadian consensus guidelines and Surrey Place tools (which give a doctor a ready-made framework), the K133 fee code (which pays for the time), Ontario Health’s transitions quality standard (which lets families demand a named responsible provider), and DSO registration (the gateway to specialized services). The recurring lesson across the evidence is to be proactive — build the relationship and the documents before the crisis.

A step-by-step plan for your family

Staged, concrete next steps for a family or support worker, with the signposts that would change them.

Stage 1 — Foundation (do now).

1. Secure a continuous primary-care provider. If the person has none, register with Health Care Connect (Ontario.ca/healthcareconnect or by phone) and flag the developmental disability and any chronic conditions to raise priority. Keep contact and health-card details current. If no match within a few months, also call CPSO-listed family doctors directly and ask Community Health Centres and Family Health Teams about capacity.
2. Register with Developmental Services Ontario (DSO) if you haven’t — it is the gateway to specialized services, including Surrey Place’s Family Medicine Consultation Clinic.
3. Build the documents: complete Surrey Place’s “About My Health,” start a symptom and behaviour log, and pre-fill the “My Hospital Form” so it’s ready before any emergency.

Stage 2 — Proactive care (within the year).

1. Book a periodic Health Check. Ask the family doctor to use the Surrey Place IDD Health Check and to bill OHIP K133. Bring the completed About My Health form. Aim for at least a comprehensive assessment every 12 months; if the practice can’t accommodate the time, ask about a team-based approach or a referral to a specialized consultation clinic.
2. Request a medication review as part of the Health Check, ideally with a pharmacist reconciliation — especially if the person is on an antipsychotic without a clear psychiatric diagnosis, or on five or more medications.

Stage 3 — High-risk moments.

1. For any hospital or emergency-room visit, hand the My Hospital Form and About My Health directly to triage and nursing staff, ensure a familiar person stays present, and explicitly flag pain signals and communication needs.
2. For a young person approaching adulthood, start transition planning by age 14, use the Ontario Health Transitions quality standard to insist on a single “designated most responsible provider,” and confirm an adult family doctor is in place before pediatric discharge.

What would change this plan: a locally available specialized adult clinic opening in Waterloo, Hamilton, or Halton (currently none) would shift step 1’s fallback; confirmation that Surrey Place services have resumed after the strike would restore it as a referral option; and published data on K133 use would clarify how realistic step 4 is in a given practice.

Grey areas and points of confusion

• Access data is uneven and often not recent. The strongest Ontario numbers come from H-CARDD/ICES using administrative data from 2009–2016 (Atlas 2013; “Addressing Gaps” 2019). They are robust but now several years old; the 0.78% prevalence is itself an administrative-data estimate and likely undercounts.
• Health passports have mixed evidence. They help communication when used, but randomized studies found no measurable service improvement, largely due to inconsistent provider uptake. They are worth using, but not a guarantee.
• Health Check screening effects are partial. The Ontario two-site study showed clear gains in general health measures but non-significant gains in cancer screening and persistently low Pap-test rates — real-world implementation is harder than the recommendation.
• Specialized-service availability is genuinely limited and shifting. Provision is Toronto-centred; there is no confirmed dedicated adult primary-care clinic for developmental disabilities in Waterloo, Hamilton, or Halton, and even Surrey Place’s services were disrupted by a strike beginning May 25, 2026. Verify current availability directly.
• K133 use is unknown. No published billing-volume data confirms how widely the fee code is being used since April 2023.

How current is this, and what to double-check

This is general information, not medical, legal, or financial advice. Families and support workers should confirm current details with the person’s own clinicians and with the named programs directly, as services, fees, and waitlists change.

Recency: Figures are dated inline. The core disparity statistics rest on 2010–2016 administrative data (published 2013 and 2019); the guidelines are the 2018 edition; the tools were updated through 2019 and 2023; the K133 fee code dates to April 2023; the OurCare 13% figure is from 2022–2023 (with an 88%-attached 2025 follow-up); the Primary Care Action Plan waitlist figures are from January 2026; the Surrey Place strike began May 25, 2026. Treat pre-2019 figures as directional.

Source reliability: Priority was given to the Canadian consensus guidelines (Canadian Family Physician), Surrey Place/DDPCP clinical tools, ICES/CAMH/H-CARDD population research, peer-reviewed reviews, and Ontario government sources. Some contextual items (news releases, the July 2025 policy brief, media coverage of the strike) are secondary and are labelled as such.

Terminology: This guide uses person-first “adults with a developmental disability” as house style, matching Ontario’s funding and legal system (DSO, Passport, MCCSS). Where cited sources use “intellectual disability” or “IDD,” that usage is preserved. Outdated and stigmatizing terms are not used, and support-needs language is preferred over functioning labels.

Related: Dual Diagnosis and Diagnostic Overshadowing in Ontario: A Family Guide to Mental Health and Developmental Disability · Aging with a Developmental Disability in Ontario: A Guide for Families · Communication and AAC for Adults with Developmental Disabilities in Ontario · Physical Health and Active Living for Adults with Developmental Disabilities in Ontario