Intellectual disability and inclusive health care
Everyone has a right to safe, respectful and high-quality care. Our resources are designed to help health professionals and consumers work together to improve the quality and safety of care for people living with disability.
People with disability can face barriers in healthcare because services are not always accessible, communication can be poor, and disability needs are not always understood. Not only can this suggest a lack of compassion and respect, but it can also lead to higher mortality rates, increased incidence of preventable illness and more frequent hospital admissions.
Our resources are designed to support health professionals to improve the care they provide to people with disability, and to empower consumers to know their rights and understand information about the care they receive.
Healthcare rights
People living with disability deserve the same care as everyone else. Our Charter of Healthcare Rights describes the rights all people have to:
- Access
- Safety
- Respect
- Partnership
- Information
- Privacy
- Give feedback
We have an easy English version of the Charter and a guide for people with cognitive impairment that is also available in easy English.
User Guide for the Health Care of People with Intellectual Disability
Our User Guide for the Health Care of People with Intellectual Disability is designed to support health services who are implementing the National Safety and Quality Health Services (NSQHS) Standards. The NSQHS Standards are mandated in all hospitals, day procedure services and public dental services across Australia. They describe the standard of care that people can expect from health service organisations and provide a quality assurance mechanism that ensures expected standards of safety and quality are met.
Our user guide provides actions for delivering health care for people with intellectual disability, strategies for improvement and resources to support health professionals improve health outcomes for people with intellectual disability.
Four steps to inclusive health care
The four steps to inclusive health care are designed to support health professionals engage with patients in a way that priorities their individual needs and treats them with dignity and respect. Our fact sheet for health professionals describes how you can make reasonable adjustments for your patients, and our inclusive health care poster can be displayed in health services to explain the four steps to staff and consumers.
Our easy read document provides questions that people can ask health professionals about making reasonable adjustments to suit their needs.
1. Plan with me
Plan for reasonable adjustments for a safer and higher quality of health care.
Consider what the person needs to access your service and plan to make those adjustments to your approach and the physical environment.
2. Understand me
‘Know what is usual for me so you can work out what health care I need.’
Understand the person’s disability to help the person make health decisions. Find out as much as you can about the person, their goals, preferences, likes and dislikes. Don’t make assumptions about a person’s behaviour – check what it means for them.
3. Communicate with me
‘Talk with me and include me in conversations about my diagnosis and treatment and check my understanding. Know my capacity and my right to be supported in making decisions about my health care.’
Communicate with the person in a manner they can understand. This might include using simple language and concrete terms, Easy Read information or visual aids. Talk with the person directly, rather than the accompanying person, in a way that is positive and inclusive for them.
4. Act with me
‘Follow up on test results and treat my health issues. Don’t assume my symptoms, illness or disease are part of my disability.’
Use what you know about the person’s baseline to identify concerns that need further investigation or review. Regularly check how the person is feeling about the health care they are receiving. Follow up on any issues identified in the comprehensive assessment, either directly, or through organising referrals.
Inclusive care resources for health professionals and consumers
Accessing safe and high-quality care can be challenging for people living with an intellectual disability. There are certain areas that require extra attention, and we have addressed these with fact sheets for clinicians and easy read resources for consumers.
Still needs tweaking but struggling to find a way to introduce this collection as we have seemingly picked 3 areas which I’m assuming pose significant safety and quality risks to people with intellectual disability
Good communication and positive behaviour support
Knowledge and understanding of how to communicate with people with intellectual disability is vital for safe and high-quality health care. Using positive behaviour support involves strategies that address the needs of the person.
Transitions of care
Transitions of care for people with intellectual disability can be high risk. The successful transfer of information is vital for safe health care.
Polypharmacy
People with intellectual disability are often at higher risk of adverse effects from medications as the information about their medicine may be difficult to understand. These risks increase when you are taking multiple medicines.
Reasonable adjustments
Equitable access to safe and high-quality health care is a human right. A reasonable adjustment is when a change to an existing approach or process is essential to ensure the person’s access to a service. Making reasonable adjustments for people with disability to access services is required under the Commonwealth Disability Discrimination Act 1992.
Legal framework
Within Australia, Commonwealth and state and territory legislation is in place to acknowledge the human rights of people with a disability; promote independence, economic and social inclusion; facilitate access; provide safeguards and enact the United Nations Convention on the Rights of Persons with Disabilities.
Under the Commonwealth Disability Discrimination Act 1992, reasonable adjustments are described as a duty of care to prevent discrimination.
State and territory governments each have disability inclusion legislation for public authorities (including health authorities) that mandate disability inclusion action plans. The inclusion of a Disability Access and Inclusion Plan ensures services meet the needs of people with a disability, their families, and carers.
To provide safe and inclusive health care for people with intellectual disability, the four steps to inclusive health care assists in making reasonable adjustments.
Examples of reasonable adjustments
Pre-appointment:
- Accessible information pack about the hospital/clinic/appointment
- Pre-appointment visit to the hospital/clinic to become familiar
- Flexibility in appointment times, for example, appointment times which fit around their daily routines
- Telephone reminders for the appointment
- Accessible car parking.
Appointment
- Speaking directly to the person with intellectual disabilities throughout the healthcare encounter, for example, to explain during the procedure what is happening and what is happening next
- A longer appointment time, for example, a double appointment
- An appointment during a quiet time, for example, first or last appointment of the day
- The family being present during the appointment
- Explaining consent procedures and providing Easy Read information
- Checking for understanding of the information that has been given
- Demonstration of a physical examination using either yourself or another to show what is planned to gain the person's permission
- Procedure explanations in Easy Read or pictorial format, or if available, a video of a planned procedure
- Access to toilets before and after a visit
- Playing the person with intellectual disability’s favourite music, or music in general during the procedure to relax and distract them.