Intellectual Disability Healthcare in General Practice

from

https://www.safetyandquality.gov.au/clinical-topics/intellectual-disability-and-inclusive-health-care

Overview

People with intellectual disability have the same right to safe, respectful, accessible and high-quality healthcare as all patients. In general practice, care should be proactive, structured and adapted to the person’s communication, cognitive, sensory, behavioural and physical needs.

People with intellectual disability may experience poorer healthcare access due to inaccessible services, poor communication, lack of clinician confidence, diagnostic overshadowing and limited understanding of their disability-related needs. These barriers can contribute to preventable illness, higher hospital admission rates and increased mortality.

Key Principles in General Practice

1. Person-centred care

Treat the person as the primary patient, not only the carer or support worker.
Speak directly to the patient wherever possible.
Respect the person’s dignity, autonomy and preferences.
Involve family, carers, support workers or substitute decision-makers when appropriate and with consent.
Ask what usually works best for the person during healthcare appointments.

2. Avoid diagnostic overshadowing

Diagnostic overshadowing occurs when symptoms are incorrectly attributed to the person’s intellectual disability rather than being assessed as a possible medical issue.

In general practice:

Do not assume behaviour change is “just disability”.
Consider pain, infection, constipation, medication adverse effects, mental illness, trauma, abuse, sensory distress or environmental triggers.
Compare with the person’s usual baseline.
Ask carers: “What is different from usual?”
Follow up abnormal symptoms, test results and unresolved concerns.

3. Reasonable adjustments

Reasonable adjustments are changes to usual systems or processes that allow a person with disability to access healthcare safely and equitably. These are required under the Commonwealth Disability Discrimination Act 1992.

Pre-appointment

Adjustment	Practical Examples
Provide accessible information	Send simple information before the visit explaining the appointment purpose, clinic location, who they will see, and what may happen.
Offer familiarisation	Allow a pre-visit to the clinic to see the reception area, waiting room, consulting room, toilets and parking.
Flexible appointment timing	Offer first or last appointment of the day, quieter times, or times that fit the person’s usual routine.
Appointment reminders	Use SMS, phone call, written reminder, or reminder to carer/support worker.
Check access needs	Confirm wheelchair access, accessible parking, accessible toilets, mobility aids and need for support person.
Check communication needs	Ask whether the person uses verbal communication, gestures, pictures, Easy Read material, communication device, interpreter or carer support.
Check sensory needs	Ask about sensitivity to noise, lights, crowds, touch or waiting-room distress. Offer quiet waiting space or waiting in car until called.
Book adequate time	Use longer appointment, double appointment, or separate appointments for complex issues.
Record adjustments	Document preferences and reasonable adjustments in the patient file so reception, nurse and GP are aware.

appointment

Adjustment	Practical Examples
Speak directly to the patient	Address the person with intellectual disability directly, not only the carer or support worker.
Use simple communication	Short sentences, concrete language, one question at a time, avoid jargon, allow extra processing time.
Explain step-by-step	Explain what will happen next during history, examination, investigations or procedures.
Check understanding	Ask the person to repeat back, show, point, or confirm understanding using their preferred communication method.
Use Easy Read/visual aids	Use pictures, diagrams, body maps, written plans, pictorial medication instructions or Easy Read consent forms.
Allow support person	Permit family, carer or support worker to be present if the patient wants this.
Demonstrate before examining	Show equipment first; demonstrate examination on yourself or support person; ask permission before touching.
Modify environment	Quiet room, reduced noise, dim lights if needed, fewer people in room, allow comfort items or music.
Offer breaks	Pause during history, examination or procedures if the person becomes distressed or overwhelmed.
Provide toilet access	Ensure toilet access before and after the consultation or procedure.
Provide clear written plan	Include diagnosis/working diagnosis, medication changes, investigations, referrals, follow-up and safety-net advice.
Confirm follow-up responsibility	Clarify who will book tests, collect medication, monitor symptoms, attend referrals and arrange review.

Four-Step Framework for Inclusive Healthcare

1. Plan with me

Aim

Plan reasonable adjustments before and during the consultation to improve safety, access and quality of care.

In general practice

Ask:

Does the patient need a longer appointment?
Do they prefer a quiet room or reduced waiting time?
Do they need Easy Read resources?
Do they communicate verbally, with gestures, communication device, pictures or support person?
Are there sensory triggers such as noise, light, touch or crowding?
Is a pre-visit familiarisation helpful?
Are appointment reminders needed?

Practical GP actions

Add communication and adjustment preferences to the patient file.
Use alerts or notes in the practice software.
Offer double appointments for complex care.
Book predictable appointment times.
Ensure reception staff are aware of agreed adjustments.
Provide written information in accessible format where possible.

2. Understand me

Aim

Understand the person’s disability, baseline function, preferences, behaviour and usual communication style.

Key points

Ask about:

Usual behaviour and function.
Communication style.
Mobility and personal care needs.
Eating, swallowing and nutrition.
Sleep pattern.
Continence.
Pain expression.
Behavioural changes.
Sensory sensitivities.
Decision-making capacity.
Support network.
NDIS involvement.
Guardianship or substitute decision-making arrangements.

Clinical importance

A change from baseline may indicate:

Pain
Infection
Constipation
Urinary retention or UTI
Dental disease
Medication adverse effect
Depression or anxiety
Trauma or abuse
Environmental stress
Sleep disorder
Seizure activity
Endocrine/metabolic illness

3. Communicate with me

Aim

Communicate in a way the person can understand and participate in.

Communication strategies

Use short sentences.
Use simple, concrete language.
Avoid jargon.
Ask one question at a time.
Allow extra response time.
Use pictures, diagrams, body maps or Easy Read material.
Check understanding by asking the patient to explain back in their own way.
Speak directly to the patient, not only to the carer.
Confirm whether the patient wants the support person involved.
Use positive, respectful and inclusive language.

Example phrases

“I’m going to explain what I’m doing before I examine you.”
“Is it okay if I listen to your chest now?”
“Can you show me where it hurts?”
“What helps you feel calm during appointments?”
“Would pictures help explain this?”

4. Act with me

Aim

Act on health issues, follow up results, arrange referrals and ensure the person receives equitable care.

GP responsibilities

Follow up abnormal results.
Ensure referrals are completed and attended.
Provide accessible written plans.
Confirm medication changes are understood by the patient and carers.
Use recall systems for preventive health.
Coordinate with specialists, allied health, disability services, NDIS supports and carers.
Review whether reasonable adjustments were effective.

Comprehensive GP Health Assessment

History

Presenting concern

Clarify:

Main symptom or concern.
Onset and duration.
Severity.
Triggers.
Associated symptoms.
Change from baseline.
Carer observations.
Functional impact.
Pain indicators.
Behavioural changes.

General health review

Screen for:

Vision impairment.
Hearing impairment.
Dental problems.
Dysphagia or aspiration risk.
Constipation.
Reflux.
Nutrition and weight change.
Sleep disturbance.
Continence issues.
Mobility and falls risk.
Epilepsy or seizure history.
Respiratory disease.
Cardiovascular risk factors.
Endocrine disorders.
Skin issues.
Menstrual and sexual health where relevant.
Immunisation status.

Mental health and behaviour

Assess for:

Anxiety.
Depression.
Trauma.
Grief.
Sleep-related behavioural deterioration.
Environmental stressors.
Abuse, neglect or exploitation.
Substance use where relevant.
Behavioural triggers and protective factors.
Current behaviour support plan.

Medication review

People with intellectual disability may be at higher risk of medication adverse effects, especially with multiple medicines. Polypharmacy is a recognised safety issue in this population.

Review:

Current medicines.
PRN medicines.
Psychotropics.
Antiepileptics.
Anticholinergic burden.
Sedatives.
Opioids.
Over-the-counter medicines.
Complementary medicines.
Indication for each medication.
Effectiveness.
Adverse effects.
Monitoring requirements.
Whether medications can be simplified or deprescribed.

Examination

Tailor the examination to the person’s tolerance and consent.

General examination

General appearance and distress.
Hydration.
Weight/BMI.
Blood pressure.
Pulse.
Temperature.
Respiratory rate.
Oxygen saturation if clinically indicated.
Mobility and gait.
Skin integrity.
Dental/oral health if tolerated.
Signs of injury, neglect or bruising.

Systems examination

As clinically indicated:

Cardiovascular.
Respiratory.
Abdominal, especially constipation or pain.
Neurological baseline.
Musculoskeletal and mobility.
Ear, nose and throat.
Skin.
Mental state/behavioural observation.

Preventive Healthcare Priorities

Cardiovascular risk

Assess:

Blood pressure.
Lipids.
Diabetes risk.
Smoking status.
Physical activity.
Diet.
Weight.
Family history.
Medication contributors to metabolic risk, especially antipsychotics.

Cancer screening

Check eligibility and accessibility for:

Bowel cancer screening.
Cervical screening.
Breast screening.
Skin checks where clinically indicated.

Reasonable adjustments may be needed for screening procedures, consent processes and preparation.

Immunisations

Review:

Annual influenza vaccination.
COVID-19 vaccination as per current recommendations.
Pneumococcal vaccination where indicated.
Shingles vaccination where indicated.
dTpa boosters.
Hepatitis B if risk factors.
Travel vaccines if relevant.

Sexual and reproductive health

Do not assume a person with intellectual disability is not sexually active.

Assess sensitively:

Consent and capacity.
Contraception.
STI risk.
Menstrual issues.
Pregnancy planning or prevention.
Sexual safety.
Abuse or coercion.
Cervical screening needs.
Menopause or hormonal symptoms where relevant.

Mental Health

People with intellectual disability can experience anxiety, depression, trauma, grief and other mental health disorders, but symptoms may present differently.

Consider:

Behavioural change as a possible expression of distress.
Sleep change.
Appetite change.
Withdrawal.
Irritability.
Self-injury.
Aggression.
Loss of skills.
Increased repetitive behaviour.
Somatic complaints.

Management may include:

Clear diagnosis where possible.
Psychosocial and environmental interventions.
Positive behaviour support.
Carer education.
Psychological therapy adapted to cognitive capacity.
Medication only when clinically indicated, with monitoring.
Referral to psychiatry, psychology or specialised intellectual disability services when needed.

Positive Behaviour Support

Good communication and positive behaviour support are important for safe and high-quality healthcare.

In GP, behavioural concerns should prompt assessment for:

Pain.
Constipation.
Infection.
Sleep disturbance.
Medication adverse effects.
Mental illness.
Trauma.
Sensory overload.
Environmental changes.
Communication frustration.

Management should focus on:

Understanding the function of behaviour.
Identifying triggers.
Supporting communication.
Reducing distress.
Reviewing restrictive practices if present.
Involving carers and behaviour support practitioners.
Avoiding unnecessary sedating medication.

Transitions of Care

Transitions of care are high-risk for people with intellectual disability. Safe transfer of information is essential.

High-risk transitions include:

Hospital admission.
Hospital discharge.
Emergency department presentation.
Change in accommodation.
Change in carers.
Transition from paediatric to adult services.
Transfer between GPs or specialists.
RACF or supported accommodation admission.

GP actions:

Provide clear referral letters.
Include baseline function and communication needs.
List reasonable adjustments.
Reconcile medications after discharge.
Follow up discharge summaries.
Confirm pathology/imaging results.
Ensure carers understand the management plan.
Arrange timely post-discharge review.

Consent and Capacity

Key principles

Capacity is decision-specific and time-specific.
Intellectual disability does not automatically mean lack of capacity.
Support the person to make decisions wherever possible.
Use simple language, Easy Read material, visual aids and extra time.
Involve substitute decision-makers only when required.
Document capacity assessment and consent process.

Capacity assessment should consider whether the person can:

Understand the relevant information.
Retain the information long enough to decide.
Use or weigh the information.
Communicate a decision in some way.

Documentation

Document:

Information provided.
Communication supports used.
Patient’s expressed preference.
Role of support person.
Capacity assessment.
Consent obtained.
Substitute decision-maker involvement if applicable.

Safeguarding

People with intellectual disability may be at increased risk of abuse, neglect, exploitation and coercion.

Consider safeguarding when there is:

Unexplained injury.
Frequent presentations.
Fearfulness around a carer.
Poor hygiene or malnutrition.
Missed appointments.
Medication mismanagement.
Financial exploitation concerns.
Sexual safety concerns.
Sudden behavioural change.
Carer stress or burnout.

Management:

Speak with the patient alone where safe and appropriate.
Use trauma-informed communication.
Assess immediate safety.
Document objectively.
Follow mandatory reporting obligations where applicable.
Involve appropriate safeguarding, disability, hospital or social work services.