Intellectual disability in primary care
Overview
Target audience
The following information has been prepared for primary care health professionals such as general practitioners (GPs), practice nurses, midwives, dentists, pharmacists, and other allied health professionals.
Purpose
People with intellectual disability (ID) experience poorer health outcomes and greater burdens of disease than those in the general population, with greater rates of multi-morbidity, preventable hospitalisations, and premature death. Additionally, people with ID also face high levels of undiagnosed and unmanaged health issues exacerbating existing health conditions and potentially affecting continuity of care. Primary health care plays a key role in addressing the health care needs of the whole population, acting as the first line-of-defence as well as allowing access to government subsidised services and treatments. Yet people with ID are still faced with disproportionate and unequitable health outcomes.
What is intellectual disability?
ID typically begins during the developmental stages of life (usually before 18 years) and involves impairments in intellectual function and adaptive behaviour. People with ID may find difficulties in learning new things, understanding concepts, problem-solving, maintaining focus, and memory recall. Some people with ID may also find it difficult managing their behaviours, emotions, and interpersonal relationships. ID can often be classified based on standardised intelligence testing, from mild, moderate, severe, and profound. The more severe a person’s ID, the more their communication, mental capabilities, and day-to-day functioning skills are impaired.
Communication tips
Communication is one of the key barriers to healthcare for people with ID. Although each person is unique and can have varying levels of communication levels, these are some general guidelines to follow.
Words matter
The words people use plays an important role in everyday life. They have the power to comfort, inspire, and makes others feel a sense of belonging. At the same time, they can also have devastating effect, even unintentionally. As a primary care health professional, it is important that you are up to date with sensitive language use when communicating with people with an ID.
For more information on inclusive language, please visit: https://www.stylemanual.gov.au/accessible-and-inclusive-content/inclusive-language/people-disability
Augmentative and Alternative Communication (AAC)
AAC devices can help bridge the communication gap between you as the health professional and patients with ID. If they are necessary, they can help improve the exchange of critical health information, leading to more efficient consultations, and overall improving patient health outcomes. It is recommended that you become familiar with different types of AACs and be able to recognise a patient’s preferred form of learning and tailoring your approach accordingly.
Tips
- Directly communicate and engage with the person rather than the accompanying support person.
- Speak slowly and clearly using short sentences.
- Treat the person with respect and dignity as well as using age-appropriate language. For example, do not speak to an adult as you would with a child.
- Be expressive with your body language and facial expressions.
- Put them at ease with some easy-to-answer general questions like what their favourite food or movie is before jumping straight into the consultation.
- Explain to them the purpose of the consultation and what will be done and why.
- Be sensitive to non-verbal cues and reactions.
- Provide alternative or augmentative means for communication (AAC) if they are unable or uncomfortable communicating verbally (e.g., picture exchange, hand signals, tablet, or smartphone with AAC apps, letterboards, and communication boards).
- Familiarise yourself with their personal AAC devices or methods and know how to use them.
- If communication problems persist, ask their permission if it’s okay to direct the questions to their support person, whilst also keeping them actively involved.
- Be comfortable with extended periods of silence. Many individuals may need extra time to process a question or formulate a response. Talking during this time may distract them.
- Although some people may have difficulties speaking, they can usually understand what is being said to them. Be aware of their expressions that could indicate their understanding.
- Check your own understanding of what the person has said by repeating the key points back to them and confirming if your interpretation is correct.
- Do not pretend to understand what a person has said if you do not. Ask them to repeat or rephrase until you have.
- Always try to provide clear explanations and check that the person has understood what you have said. Ask them to try and repeat the information back in their own words or means.
Below is a video that demonstrates how a doctor should not interact with a person with ID. The second half of the video then demonstrates how the doctor should be talking to the person.
This second clip explains what people with ID and autism are wanting from their interactions with health professionals.
Preparation for consultation
Preparing and planning for an appointment with a person with intellectual disability can help maximise the appointment for the patient, improve delivery of care and support for the individual. Here are some tips:
- Schedule appointments during periods of the day where the wait time is likely to be less (e.g., first appointment, first appointment after lunch) so the individual isn’t waiting too long.
- Having a separate waiting room, if required, that is quiet and inviting.
- Allocating longer time slots for the appointment, especially the initial appointment.
- Facilitate the individual to have a support person attend their appointment with them if they wish.
- Send the individual or their support person regular appointment reminders leading up to the consultation.
- Encourage the individual to bring and use any communication aids. Try to use these during the appointment as a first means of communication rather than asking the support person (g., headphones, health passport).
- Review the patients notes from previous appointments prior to identify communication needs and medical history. Often individuals find themselves having to retell their story.
- Ask the patient for permission to obtain their collateral history from family and support people.
Consultation environment
The environment plays an important role in facilitating effective communication between the practitioner and patient. Being flexible and adapting the consultation environment, if need be, can help a patient feel more at ease. (reasonable adjustments)
- Ensure the location is wheelchair accessible and waiting areas are spacious and free from decorative floor pieces.
- Make sure the consultation environment is quiet and free from distractions.
- Provide appropriate waiting room activities (e.g., puzzles, toys, magazines, and books)
- If required, ensure there is space for an alternate, separated waiting room.
- Aim to have the individual see the same health professional for every visit, resulting in rapport building and allowing for a more comfortable and personable experience.
- If the person wishes for their support person to stay for the consultation, arrange the seating so that the health professional is focusing on the patient rather than the support person.
- Ensure that the person has access to their AAC devices and provide some alternatives if they did not bring their own (e.g., communication board).
Annual Health Assessments
Why do an annual health assessment?
There is strong evidence that annual health assessments are an effective way to identify unmet health needs in people with an intellectual disability.
An annual health assessment for a person with intellectual disability is covered by Medicare item 701 (brief), 703 (standard), 705 (long) or 707 (prolonged). A health assessment for people with an intellectual disability may be claimed once every twelve months by an eligible patient. This is like the standard over 75 yearly health assessment.
Tools to support annual health assessments
The Comprehensive Health Assessment Program (CHAP) is an evidence-based tool for carrying out annual health assessments for people with intellectual disabilities in Australia. CHAP is unique to most annual health assessments as it is a two-part questionnaire requiring collaboration between the person with the intellectual disability, their supporter, and their GP.
The first part of the assessment creates a comprehensive health history and is completed prior to the appointment by the individual, their family or other support people.
At the appointment, the first part is reviewed, and the second part completed. Practice nurses can assist patients with part one as well as sections of part two with a final review with the GP.
On completion of the GP’s review, a health action plan should be agreed upon by the patient and GP in collaboration with those involved in providing support.
NDIS
What is the NDIS?
The National Disability Insurance Scheme (NDIS) is an Australian government scheme that provides funding for eligible people with a disability to enable them to achieve a better quality of life, more independence, acquire new job skills, and spend more time with family and friends. Many people with intellectual disability are eligible for the NDIS. More information about the NDIS and how primary care practitioners play a role in providing information to support applications and other NDIS functions is available on their website: https://www.ndis.gov.au/applying-access-ndis/how-apply/information-gps-and-health-professionals.