Overview of care pathways for people with intellectual disability
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Stages of the care pathway
This page provides a brief overview of the stages of a mental health care pathway for a person with intellectual disability and how health, disability, and social service professionals could help during each stage.
Some professionals will already have in-depth knowledge of this pathway, while others may be less familiar. For more specific information for your profession, see the following pages:
For more information and tips on providing support and resources to people with intellectual disability and their support networks, it may be helpful to look at the care pathway information for people with intellectual disability and support networks.
1. Recognising mental health problems in a person with intellectual disability
The first step of a mental health pathway is recognising a mental health problem so that the person can seek help if they need it.
Identifying that a person with intellectual disability is having problems with their mental health can sometimes be difficult. Often they do not, or cannot, let people know they are having problems. You may notice someone’s behaviour has changed or they may say they feel different to normal. Learn more about Recognising mental health problems. If you think someone may be having problems with their mental health, you can support them by communicating with them about how they are feeling.
Communicating with the person about their mental health
People with intellectual disability may be confused or worried about why they feel different to normal. Try to communicate with the person about their mental health, using the methods that they prefer. You can:
- check in with the person and ask how things are going for them lately
- remain non-judgmental, show empathy and offer reassurance
- acknowledge how the person is feeling (e.g. “I’ve noticed that you seem upset”)
- ask open-ended questions (e.g. “How are you?”)
- let the person know that they can speak to you about any worries they have if they want
- offer to help the person talk to their carers, family members or other supporters about how they are feeling if that would help them
- let the person know you can assist them to get help if they need it.
Find out more about adjusting your communication.
2. Supporting the person to seek help
The next step is supporting the person to seek help. This will differ depending on your role and relationship to the person, as well as the mental state of the person. There are various ways that you can help the person to seek help. For more information about each of these steps, please view the section for people with intellectual disability on Where to start to get help.
- If the person is in crisis, see the Emergency help page for what to do.
- Encourage the person to speak to their GP first.
- Support the person to call mental health helplines or call on their behalf.
- Support the person to seek a counsellor if the person wants to talk to someone about stressful events.
- Let the person know that they can also get help online. You could provide some examples of websites and online tools that may help.
For more information about how to support a person to seek help, these e-learning courses (developed with disability professionals in mind) by 3DN’s Intellectual Disability Health Education may be helpful:
- Recognising Common Mental Illness
- How to Support a Person with a Possible Mental Illness and Intellectual Disability
- How to Support a Person in a Mental Health Crisis
The courses are available to access for a small fee.
3. Supporting intake or assessment
A referrer, such as a GP, will initiate or suggest contact with a mental health service or professional. Before a person starts seeing a mental health professional, they may have what is called an ‘intake’ session. This may be conducted over the phone or in person. The intake session is to find out more about the person, the issues they are seeking help for, and whether the health worker or service will be right for them.
If you are involved in supporting a person with intellectual disability to seek help for their mental health, help them to be prepared. Health and disability professionals can find out more about specific things they can do to help the person prepare.
If the person is rejected from mental health services at intake stage
- support the person to speak to the referrer. The referrer could initiate contact with the service to discuss the referral and any concerns they may have
- seek an alternative option from the referrer
- help the person to make a complaint with the service or with the Health Care Complaints Commission. For more information, see our section on How to advocate within the I am a person with intellectual disability section of this website.
Supporting the assessment process
After the intake stage the person will have an assessment. In some cases, the first contact a person has with a mental health service is during the assessment stage (e.g. their referrer may have provided information about them during the intake stage).
During an assessment, mental health professionals will ask detailed questions about the person’s current presenting problem and history. Assessments for people with intellectual disability can take longer than the general population as:
- they can have complex physical and mental health histories
- rapport can take longer to develop
- communication needs mean that information is collected more slowly
- there are often several people involved (e.g. carer, family member, support worker, health workers).
Supporting the person through assessment involves similar steps to supporting the person during intake. Depending on your role, some things you can do include:
- help the person to prepare. For more information, see our section for health professionals or disability professionals
- accompany the person. For more information, see our section for disability professionals.
4. Supporting treatment
People with intellectual disability can often need more support during the treatment stage to implement treatment strategies and monitor their progress.
Treatment planning should be underpinned by the guiding principles of managing mental ill-health in people with intellectual disability, including recovery-oriented practice. See the Guiding principles section for more information.
You can contribute to treatment planning by:
- providing your thoughts and expertise as a professional who provides support or care to the person
- being part of a multidisciplinary team, which may include health, allied health and disability, and social service support providers, and collaborating to plan and co-ordinate the person’s treatment plan.
The two main types of treatments used are pharmacological interventions and psychological therapies. You can learn more about types of treatment. 3DN’s Intellectual Disability Health Education also has a course on treatments and supports for mental illness. The course is available for a small fee or for free through My Health Learning on HETI for NSW Health staff members.
How you can support treatment will depend on your role. It may include helping the person to monitor for side effects, supporting therapy techniques, or supporting the person to have a healthy lifestyle. You will find more information in the section specific to your role as a health, disability or social service professional.
5. Supporting Transfers of Care
Transfers of care include:
- when a person is discharged from hospital or finishes with a community mental health service, or
- transitions to another service at key times in their life.
All professionals play an important role in the person’s recovery. For example, you could:
- assist the person with their Transfer of Care plan, where appropriate
- provide or link the person with appropriate supports
- encourage the person to talk to someone they trust if they start to feel unwell again.
For more specific information about things that you can do, see the section that is relevant to your professional role.
The person with intellectual disability may also require psychosocial support during transitions, including when:
- transitioning from child and adolescent to adult services
- transitioning from adult to older adult services
- moving to a new location.
Appropriate transfer of care is needed in these situations. For more information, you can see the Transfers of care section.
Equipping people with intellectual disability and support networks to navigate care pathways
It is important to equip people with intellectual disability to navigate and self-advocate across the mental health care pathway. You can do this by:
- providing accessible information about services and pathways tailored to people with intellectual disability. You can find out more about how to provide accessible information in 3DN’s Making mental health information accessible for people with intellectual disability – A Toolkit
- being aware of supports and services that have experience in intellectual disability mental health in the local community
- informing people with intellectual disability about known challenges and what they can do to manage roadblocks (e.g. if a referral is not accepted, they can ask for other appropriate services). You can read more about Strategies for common challenges.
- maintaining contact and following up regularly to discuss any challenges
- obtaining advice from specialist intellectual disability mental health services when things are not working. Generally, requests for advice and the ability to refer to specialist services is limited to registered health professionals (i.e. some services only take referrals from psychiatrists and Local Health District mental health services).