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 (Cooper et al., 2015), preventable hospitalisations (Weise et al., 2021), and premature death (Trollor et al., 2017). Additionally, people with ID also face high levels of undiagnosed and unmanaged health issues (Lennox et al., 2007), 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 (Marshall et al., 2020).

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.

  • 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.

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.

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.

What are the benefits of the NDIS?

The NDIS will provide support for the individual that is both reasonable and necessary due to their disability. These include:

  • Access to community engagement activities such as social, study, sporting, or other interests.
  • Support to live independently
  • Allied health services needed due to an individual’s disability which include occupational therapy, speech therapy, and physiotherapy.
  • Home and vehicle modifications and assistive technologies (e.g., wheelchairs, adjustable beds, stairlifts, hearing aids related to person’s disability).
  • Learning new things and new skills.

Who is eligible for the NDIS?

The NDIA are the only ones that can decide eligibility. To be eligible, an individual must:

  • Be under the age of 65 when applying to join the NDIS.
  • Live in Australia.
    • They must be an Australian citizen OR
    • Hold a Permanent Visa OR
    • Hold a Protected Special Category Visa
  • Have an impairment or disability that is likely permanent (e.g., lifelong).
  • Significant impacts in activities of daily living across one or more of the six functional areas due to a primary disability
  • A child under the age of 6 years with a permanent disability or developmental delay which impairs daily function and capacity are eligible for the NDIS through Early Childhood Early Intervention (ECEI). Referral to an Early Childhood Partner will be the first step rather than completing an Access Request Form.

The role of the GP and health professionals in the NDIS

GPs, practice nurses, and other primary care health professionals play a crucial role in the NDIS. This includes:

  • Helping people understand the benefits of the NDIS, especially people who have limited community engagement and support outside their GP.
  • Identifying patients who are not currently receiving disability support and referring them to current information on the NDIS website about eligibility and who can access the NDIS.
  • Completing paperwork and providing copies of relevant reports or assessments to support an application to the NDIS

GPs specifically, are also responsible to complete NDIA (National Disability Insurance Agency) paperwork needed to meet evidence requirements once the patient has requested to join the NDIS.

  • If the patient currently DOES NOT RECEIVE funded support, the patient will provide the GPs an Access Request Form.
    • GPs only need to complete Part F of the Access Request Form (pages 5-8).
  • If the patient currently RECEIVES funded support, the patient will provide the GPs with a Supporting Evidence Form.
    • GPs only need to complete Sections 2 & 3 of the Supporting Evidence Form.
  • Provide copies of relevant reports or assessments that details the functional impact of the person’s intellectual disability, and/or information about the intellectual disability.

Tips for GPs when providing evidence for NDIS

When completing NDIS documentation, it is important to:

  • Write for a non-medical audience with a focus on function and support needs
  • Identify the primary disability, indicating
    • Type of disability and date of diagnosis.
    • Persistent and permanent nature of the disability and available treatments (medication, therapies, surgeries).
    • Factors of the disability (e.g., behavioural issues, cognitive impairment, anxiety) that impacts on the person’s functionality.
  • Describe the functional impacts and support needs that relates to the primary disability.
    • Substantial impact of the disability of the person’s day-to-day functioning occurs across one or more of the six areas in the table below.
  • Identify the type and frequency of support the person needs to carry out their day-to-day activities.
    • Gather information from individual, family, carers, and support persons about day-to-day functions. Additionally, family and carers can write family/carer impact statements.
    • Examples of different types of support across the six areas of functional impact can be found in the table below.

Misconceptions of the NDIS

There are some common misconceptions about the NDIS and what they can provide. The NDIS Act and the rules made under the NDIS Act tells us which supports will not be funded by the NDIS.

The NDIS cannot fund a support that is:

  • the responsibility of another government system or community service.
  • not related to a person’s disability.
  • day-to-day living costs that are not related to a participant’s support needs.
  • likely to cause harm to the participant or pose a risk to others.

Additionally, the NDIS will not fund:

  • diagnosis and assessment of health conditions and disabilities.
  • medication, medical and dental services, specialist services, hospital care, surgery, and rehabilitation.
  • Clinical care for mental health conditions.
  • Planning and logistics for a patient to return home after a hospital stay.
  • General hearing and vision services not related to a person’s disability (e.g., prescription lenses).

How to bill when completing an Access Request Form for a patient

It is expected that GPs will perform an examination to assess or confirm a patient’s current medical condition during the consultation. The time taken for GPs to provide details and information for the NDIS documentation may be claimed under a Medicare item if it was carried out as part of the consultation. A Medicare rebate is not payable under subsection 19(5) of the Health Insurance Act 1973 if the GP provides details about a patient without an associated consultation and without the patient present.

It is up to the discretion of the GPs to select the most appropriate Medicare item number that best reflects the nature of the consultation.

References

Cooper, S.-A., McLean, G., Guthrie, B., McConnachie, A., Mercer, S., Sullivan, F., & Morrison, J. (2015). Multiple physical and mental health comorbidity in adults with intellectual disabilities: population-based cross-sectional analysis. BMC Family Practice, 16(1), 110. https://doi.org/10.1186/s12875-015-0329-3

Lennox, N., Bain, C., Rey-Conde, T., Purdie, D., Bush, R., & Pandeya, N. (2007). Effects of a comprehensive health assessment programme for Australian adults with intellectual disability: a cluster randomized trial. International Journal of Epidemiology, 36(1), 139-146. https://doi.org/10.1093/ije/dyl254

Marshall, P., Gellie, A., Tapim, A., Lehmann, J., Powell, K., Baglot, N., Went, R., & Rasalam, R. (2020). Effective communication with people who have an intellectual disability disorder about their diabetes: a guide for health professionals.

Trollor, J., Srasuebkul, P., Xu, H., & Howlett, S. (2017). Cause of death and potentially avoidable deaths in Australian adults with intellectual disability using retrospective linked data. BMJ Open, 7(2), e013489. https://doi.org/10.1136/bmjopen-2016-013489

Weise, J. C., Srasuebkul, P., & Trollor, J. N. (2021). Potentially preventable hospitalisations of people with intellectual disability in New South Wales. Medical Journal of Australia, 215(1), 31-36. https://doi.org/https://doi.org/10.5694/mja2.51088