This may include uncertainty or disagreement around:

• whether a person should have an assessment
• assessment approach
• diagnosis
• management plan
• discharge and transitions.

​Key suggested actions

Assessment

• Use past assessments to gain more information and avoid repetition.

• Identify areas where further consultation and investigation are required to help resolve uncertainty or disagreement.

• Use adapted diagnostic tools like the DM-ID 2 and other specific clinical instruments designed for people with intellectual disability – see Assessment tools and the Intellectual Disability Mental Health Core Competency Framework. Also consider the use of culturally sensitive and appropriate tools; see the e.g. First Nations peoples and CALD sections and websites such as the Transcultural Mental Health Centre’s cross-cultural mental health resource kit.

• If:
  • the person could not finish an assessment, or
  • the assessment results may not accurately reflect the person’s mental state or their presenting issue e.g., they were very tired or sick at the time of the assessment, or
  • you believe that the person’s mental state or presenting issue has changed since the last assessment

⇒ consider repeating the assessment.

Diagnosis

• Consider convening a multidisciplinary, multiagency complex case review.

• Consult relevant clinical guidelines in your setting.

• Where necessary, agree on one or two ‘working hypotheses’ for diagnosis that the team can continue to refine by further assessment and investigation.

Management plan

• If uncertainty around diagnosis is still unresolved ⇒ consider commencing treatment for the most likely diagnosis. Monitor the treatment response and revise the diagnosis as appropriate after further information is obtained or opinions are received.

• If there is uncertainty over the management approach ⇒ decide to ‘trial’ a treatment within a set review period.

• Review the most recent literature on treatment modifications for people with intellectual disability. See the Treatment section of the care pathway for more information.

Discharge

• Start planning for discharge early in admission. Include the person, their support networks, and members of their team in developing the discharge plan. Ensure all parties are aware of the discharge plan.

• If there is disagreement around supports required after discharge ⇒ discuss with the person, their support networks, and professionals what current supports they have, gaps, and preferences for additional support. See the Planning for the discharge of a person with intellectual disability after a mental health admission – A planning tool. NDIS packages can be discussed with the person’s Support Coordinator or Local Area Coordination (LAC).

• If there is uncertainty around who will monitor progress and monitor for deterioration after discharge ⇒ establish who will be responsible for follow-up processes and document their name(s) in the discharge plan.

• Clinicians may need to take a more active role post-discharge with people with intellectual disability as they can have difficulty attending community appointments (e.g., due to transport issues).

Transitions

• If differences in child and adolescent and adult service models (e.g. eligibility, service responsibility, approach) are leading to uncertainty or disagreement over transition approach ⇒ start planning early; let the person and their family know about these differences as soon as possible and convene meetings with the person, their family, and the transitioning services as appropriate. Where there will be a change in service/approach, discuss plans to gradually introduce the changes to the person to mitigate distress.

• If unclear roles and responsibilities of services are leading to a lack of continuity in care during transition ⇒ develop partnerships with relevant services and agencies to discuss roles and responsibilities and the handover process. Develop checklists and agreements to support this process e.g., see the Interagency collaboration to provide mental health care to people with intellectual disability – A Memorandum of Understanding (MoU) template. Active handover is important; maintain follow-up with the person once they have moved to the new service for an agreed-upon time to minimise the chance of disengagement.

Key suggested actions

• Seek advice from others (e.g., a Specialist Intellectual Disability Health Team or Clinical Nurse Consultants) on more appropriate services.   

• Consider temporary arrangements for the person that will not traumatise them or hinder their recovery while issues are resolved (e.g., if the person is on a waiting list to see a psychiatrist, the psychiatrist could advise their GP on management until they can be seen; a longer stay in an inpatient setting etc).

• Support the person to make a complaint if necessary. Suggest that they look at the I am not happy with the service section.

See the Transfers of care section of the Care Pathway for more information.

Key suggested actions

Seek to understand what the person and their support networks think about the diagnosis and appropriate care plan, along with any reason(s) for not agreeing with what has been put forward. Encourage the person or their support networks to have an advocate with them if they would like. Where necessary, bring in a patient representative, if one exists in your service, to provide support and mediate.

Assessment and diagnosis stage

• If the person or their support networks do not believe their presenting concerns are due to mental health causes ⇒ rule out any physical health causes or adverse reactions to medication.

• If the assessment was conducted at a time and place where the person was not comfortable or able to be fully engaged ⇒ reconsider what supports the person may need during the assessment process and repeat the assessment.
  • Also consider repeating the assessment(s) if the person’s presentation has changed.

• Ensure appropriate assessment and diagnostic tools for people with intellectual disability have been used (where available).

• Refer for a second opinion if appropriate. See the Specialist intellectual disability services list. 

Treatment planning stage

• Facilitate supported decision-making by providing all the information (in ways the person can understand) necessary for them to make a choice. See the Guiding principles section for more information.
  • Conduct capacity assessments in appropriate ways e.g., see the NSW Trustee & Guardian website which includes a Capacity Toolkit.

• If the person or their support networks did not understand the diagnosis or treatment plan ⇒ identify their communication needs, clarify what they did/did not understand, and seek to provide further explanation using preferred communication methods. See the Communication section for more information.

• If the person is hesitant about the treatment plan because they may i) have had similar diagnoses in the past, but treatments provided for that diagnosis did not work or ii) the treatments suggested at present have not worked in the past ⇒ carefully review the person’s history. Discuss with the person and their support networks what has or has not worked in the past and discuss alternative treatment options where necessary.

• If the person or their supporters is worried about medication side effects or polypharmacy ⇒ ensure medication is trialled and used responsibly. See the Treatment section for more details.

• Where possible, try to provide the person with a “something else” option they can choose until agreement can be reached on the most appropriate treatment option.

• If a person’s Guardian does not consent to the treatment plan → arrange a meeting to discuss their concerns and views. Always advocate for the person with intellectual disability’s recovery and wellbeing.
  • If the person and their Guardian’s desires do not match, arrange a meeting and discuss each person’s preferences and their reasons. Seek to make a plan that incorporates the views of all parties to the greatest possible extent (N.B. while the person’s legal Guardian will have the final say when consenting to a treatment plan, ensure the person is kept informed at all stages about their proposed treatments, why they are required, and what to expect).

Services

• If the person or their support networks do not want to utilise the service(s) outlined in a treatment or transfer of care plan, or do not want to return to previously utilised services, discuss what their reasons are.
  • If it is due to the feasibility of attending the service(s) ⇒ consider what supports the person may need to attend appointments (e.g. community transport) and how you can help or consider closer services.
  • There is potential the person may have experienced trauma at their previous service ⇒ utilise trauma-informed care principles and consider culturally safe and responsive care where appropriate. See the First Nations peoples and CALD sections.
  • If the person or their support networks do not believe that they need to continue accessing mental health services ⇒ provide i) information about what to do in the event of a relapse (what this looks like, who to contact, what to do), and ii) provide education about the recovery process and what it means to be well.

• Identify alternative service options and present them to the person (including location, treatments available, services offered). Work collaboratively to decide which services may be most suitable for them.

Treatment options not working

Key suggested actions

• Consider potential reasons why the treatment is not working.
  • The treatment plan is not being followed ⇒ review adherence to the treatment plan including medication compliance and application of psychological therapies. Identify the barriers and facilitators to adherence and address these e.g. the effects the absence/presence of support.
  • Medication is not providing the intended response ⇒ consider whether medications have been prescribed responsibly, especially in the context of other medications the person is taking (see the Treatment section for information on prescribing guidelines). Conduct a medication review or link in with an accredited pharmacist who can advise on safe and appropriate medicine-use in people with intellectual disability.
  • Psychological therapies have not been appropriately adapted to the person’s needs ⇒ consider the person’s needs and adaptations that may be required (e.g., increased focus on the behavioural elements of cognitive behaviour therapy). See the Treatment section for more information.
  • Undiagnosed or undermanaged physical health conditions may be hindering mental health treatment and management ⇒ review or investigate the person’s physical health history and consult with their health professionals e.g. their GP where necessary.
  • Changes in the person’s life circumstances (e.g. recent stressors, bullying) may be contributing to treatment resistance ⇒ review the person’s circumstances and any changes that have occurred. Take note of any behaviour changes, including location and antecedents, which may help to identify contributing circumstances. 
  • Past or present trauma is contributing to treatment resistance ⇒ utilise a trauma-informed approach to care. See the Guiding principles section for more information on trauma-informed approaches. 

• If a person experiences multiple relapses, review their diagnosis and consider differential diagnoses. Re-assess the person, including whether additional supports are required e.g., disability, educational, or vocational supports.

The person keeps presenting to the emergency department

Key suggested actions

• Find out reasons why the person may be presenting to the emergency department.
  • The person’s support networks or group home is finding it difficult to manage behaviours of concern (e.g. self-harm) ⇒ suggest consulting with a behaviour support practitioner or conducting a behaviour support assessment or review. Assess if additional supports (e.g. disability supports) are required.
  • Treatment options are not working ⇒ see the Treatment options not working stalemate.
  • Undiagnosed or undermanaged physical health conditions that have not been properly investigated ⇒ suggest a physical health review.
  • The person does not have a regular GP, resulting in lack of ongoing monitoring ⇒ support the person to find a GP (you can direct them to the Where to start to get help section).
  • The person does not have a crisis plan ⇒ create an interim crisis plan e.g., people to contact and helplines that can be called out of hours, then facilitate the creation of a full crisis plan in consultation with the person, their support networks, and professionals.
  • Issues related to prescribed medication (e.g., the person has not had a recent medication review or is having difficulty taking medication as prescribed) ⇒ suggest that they see their GP or psychiatrist for a medication review and/or consult an accredited pharmacist for a Home Medicines Review.

• Connect people with Assertive Outreach Teams (see the WayAhead directory) if they may benefit from ongoing contact and monitoring.

This could include a service provider who i) does not communicate with other providers or participate in joint care initiatives or ii) is unwilling to work co-operatively during handover at a time of transition.

Key suggested actions

• Consider potential reasons for a lack of collaborative care.
  • Barriers such as a lack of time to attend meetings or joint appointments, or burden associated with agreed tasks ⇒ initiate contact and openly determine barriers and potential solutions e.g. involvement of service providers via videoconference or reducing burden using electronic communications.
  • Confusion or disagreement around roles and responsibilities ⇒ discuss for all services and renegotiate if necessary.

• Initiate a meeting with relevant service providers and outline how working co-operatively can help to meet the needs of the person, especially at times of transition. See the Team uncertainty or disagreement across the care pathway stalemate for common issues around transitions of care and the Transfers of care section.

• See the Working with people with intellectual disability and their team section.

The person does not have the right support services to manage their recovery

Key suggested actions

• Contact the person’s care coordinator to review the supports the person has and what other supports may be needed.

• Schedule a case conference to review support needs with their team.

• Liaise with the person’s NDIS Support Coordinator to ensure their funding package and supports are appropriate.

• If applying for further NDIS funding, or appealing if funding amount is insufficient, facilitate or suggest the person’s care coordinator facilitates the accumulation of evidence from the person’s wider support network advocating for funding to allow for reasonable and necessary supports.

Support networks cannot appropriately monitor or support treatment

Key suggested actions

• Seek to understand reasons that support networks cannot monitor or support treatment:
  • Supporters are not clear what their role is in the management and monitoring of the person’s treatment plan ⇒ implement a plan to ensure roles are clear and that there is consistent monitoring and implementation of the treatment plan.
  • The person is showing escalated behaviours of concerns such as aggression ⇒ review or facilitate the creation of a behaviour support plan with documented de-escalation strategies. Make sure that their support networks are using de-escalation strategies (including approved restrictive practices) appropriately.
  • Support networks are overwhelmed with other support needs or have their own mental health concerns ⇒ consider and discuss their needs and provide resources to support them e.g. the Looking after myself section.

• Suggest to the person’s carer or family the need for a support worker or additional NDIS supports if they are unable to support the person’s treatment and monitoring.

• Where applicable, discuss the role of disability support staff in supporting recovery with disability support agency senior staff and refer them to the NDIS Workforce Capability Framework.