Tips for Communicating about Psychosocial Disability
MENTAL HEALTH, JUSTICE HEALTH, ALCOHOL AND DRUG SERVICES
The National Disability Insurance Agency gratefully acknowledge this resource has been developed with the practical assistance of the ACT Government’s Health, Mental Health, Justice Health, Alcohol and Drug Services, and Canberra Hospital and Health Services.
Developed by ACT Health Occupational Therapists, Division of Mental Health, Justice Health, Alcohol and Drug Services (MHJHADS) in consultation with the MHJHADS National Disability Insurance Scheme Clinical Leaders Group, 2014.
Recovery and Psycho social Disability
The concept of recovery has grown out of the mental health consumer movement and describes the personal process as people and their families/carers work through the challenges of mental health conditions and their experiences with services to re-establish self-esteem, identity and a meaningful role in society.
When people talk about mental health recovery, they do not necessarily mean achieving a state without mental illness or the impairments and disabilities that can result. Very often this is not possible. Even for people whose mental health condition is well managed, impairments and psychosocial disabilities can be long lasting or intermittent. Recovery is about achieving an optimal state of personal, social and emotional well being, as defined by each individual, whilst living with or recovering from a mental health condition.
In the context of the National Disability Strategy, recovery is about maximizing the potential of individuals with a psychosocial disability to participate in the community. Recovery approaches acknowledge that the effects of illness and subsequent psychosocial disability may or may not diminish over time. This means that while some people may recover to the point they do not require any mental health or disability supports, others will always require supports to assist and maintain their recovery, ongoing community participation and social inclusion.
Recovery is about growth and empowerment and the provision of choice for community participation. It is a pathway to social inclusion and a foundation for the provision of disability supports for people with a psychosocial disability.
It is important that within the process of assessment, recovery planning or planning with the NDIS, those strengths are identified and harnessed. This further supports a recovery-oriented approach.
(Adapted from National Mental Health Consumer and Carer Forum, 2011)
Accessing the NDIS
Access to the NDIS is described in the My NDIS Pathway guide. This guide is a useful resource for potential participants, carers and workers. The guide and additional information supporting families and carers is available on the NDIS website – http://www.ndis.gov.au/participants/planning-process
To access the NDIS, we’ll need to know some information about you. Everyone will provide this information in different ways. You might be asked to fill in a form or tell someone over the phone.” My NDIS Pathway, Your guide to being an NDIS participant,
Potential participants or their representative will be asked to provide a range of information. The information requested will be a mix of demographics (date of birth, address, citizenship etc.), direct supports (do they have a carer) and disability specific. In particular, having information ready in advance of the access request, about the type of disability they are experiencing (including the likely permanency), their treatment history and the functional impact of the disability process will help.
People who are not eligible for funding may still be able to access disability and mainstream supports available in the community. For further information about how people will be supported to access these community supports including the role of Local Area Coordinators (LAC) and information, linkages and capacity building (ILC) got to the NDIS website http://www.ndis.gov.au/people-disability/information-and-referral
The potential participant may be asked to provide evidence that they have or are likely to have a permanent disability. This needs to be documented by a health professional and in the case of psychosocial disability, this will be a treating GP or treating psychiatrist.
For the purposes of understanding the extent of functional impact and psychosocial disability, an “allied health professional” including an occupational therapist, psychologist, nurse or social worker can complete functional assessments. These assessments can be beneficial in the access and planning phases.
As suggested above, information about the person’s disability may be requested.
If there is a current assessment that addresses functioning (e.g. occupational therapy assessment, neuropsychological assessment) of the person you may wish to ensure that the participant or their representative has a copy of this or can advise the NDIA representative where this information could be sourced from. Additional assessment information can also be provided to support the functional assessment and or impact.
These could include and are not limited to:
- Pre-existing assessment reports from specialist clinicians. These could include; Health of the Nation Outcome Scale (HONOS) or Life Skills Profile 16 (LSP16)
- Assessment information provided by the participant and/or the participant’s carer to Australian Government agencies such as Centrelink (e.g. for the purposes of Carer Allowance, Carer Payment or Disability Support Pension)
- Assessment information provided to state/territory government agencies
- Assessment information provided to or prepared by participants’ existing service providers, e.g. PIR assessment or recently (within 6 months) PHaMS EST.
- Other assessment-related information the participant considers is relevant and useful in describing their support needs.
Determining Levels of Support
Information is helpful in determining access to the NDIS and can assist with planning. Frequency and duration of support can be difficult to conceptualize, especially when a person may have multiple needs and types of support identified. It is reasonable for a person to provide an indication of the frequency of support (e.g. daily, weekly, etc.) required. Further detail can be provided in the planning stage. Any detail that can be provided at the time will help when the NDIS planners or Local Area coordinators (LAC) (for some participants) are working with the person to develop their plan.
Hints for factors that determine the level and frequency of support:
- What roles, responsibilities, activities, and tasks does the person need support with?
- How often are tasks that the person requires assistance with performing? How many times does the person need support per day, per week, per month or per year?
- What support is currently provided? Are services already involved which can provide details about how long tasks take or areas that need more support/time?
- What are the goals of the support and will this affect time allocated? (E.g. learning skills in an area to build independence as opposed to doing the task for the person).
- Is this enough or the right sort of support to promote living an ‘ordinary life? The NDIS stated Vision is; ‘Optimising social and economic independence and full participation for people with disability’.
- What natural supports are around the person? Can these be maintained /sustained?
- What supports might be grouped or can overlap, e.g. support with transport might roll into support with social interaction or assistance with shopping.
- Draw up a weekly or monthly timetable with the person and identity when/where the person will require assistance/support.
- Will the level of support change? (E.g. due to the episodic nature of the person’s illness or the potential that the person will require less support in the future) Given this, what might be the average over a month, 6 months or year?
For more information/Guidance
- Please visit the NDIS website http://www.ndis.gov.au/Information for participants available on the NDIS website http://www.ndis.gov.au/participants
- Information specific to access
- Evidence of Disability
- http://www.ndis.gov.au/people-with-disability/access requirements/completing-your-
- NDIS Operational Guidelines are also available on the website
http://www.ndis.gov.au/about-us/operational-guidelines Of particular relevance to this stage of the process, are those guidelines related to: Gateway, Access, Planning and Assessment.
- If the prospective participant is linked to a multidisciplinary team, talk through the referral with relevant expertise in your team. There may be a dedicated staff member with specific NDIS knowledge.
- Consult with an Occupational Therapist for ideas to understand and support specific functional issues that people may face.
For more information/Guidance
- National Mental Health Consumer & Carer Forum (2011). Unravelling Psychosocial Disability, A Position Statement by the National Mental Health Consumer & Carer Forum on Psychosocial Disability Associated with Mental Health Conditions. Canberra.
- National Disability Insurance Scheme (2014), Operational Guidelines – Assessment of Participant’s Needs (v2.0).
- World Health Organisation, WHO Disability Assessment Scale 2.0.
- My NDIS Pathway, Your guide to being an NDIS participant
Connecting – symptoms > function > support
|Appearance – Issues related to self-awareness, appropriateness, social acceptance, motivation, self-care, lifestyle issues and safety.|
|Behaviour/Speech – Social engagement, rapport with others, level of arousal/activity, withdrawal, disinhibition, aggression, interfering behaviours, compulsions, awareness of others.|
|Mood/Affect – Depression, elevated mood, irritability, stability of mood state, appropriateness of affect, range of affect.|
|Perception – Hallucinations, derealisation.|
|Thought Form/Content – Paranoia, delusions, preoccupations, thoughts of self-harm/suicide, aggression, obsessions, anxiety, distracted/tangential thinking, poverty of thought.|
|Cognition – Alertness, orientation, memory, spatial awareness, concentration, learning, planning, problem solving, following instructions, generating ideas, social cognition (e.g. challenges with reading nuances of verbal and non-verbal cues).|
|Judgement/Insight – Self-awareness, understanding of illness and associated difficulties, issues of safety/ vulnerability, decision-making, response to stigma/discrimination.|
|Volition – Interest, intrinsic/extrinsic motivation, goal- oriented, aspirations, engagement, enjoyment.|
|Other – Treatment side-effects (e.g. sedation, weight gain, tremors etc.), sensory sensitivity, post-traumatic stress, low self-esteem, low confidence.|
Types of disability support that may be helpful includes personal support to;
|Legend: Functional domains in Access Request Form Section F|
|Mobility/ Motor skills|
|Factors of ill health that create difficulty||Functional Implications||Type of support considered|
|Example: paranoia/ anxiety||Unable to use public transport unaccompanied/ difficulty leaving the house||Person to accompany when using public transport/ provision of transport|
|Example: Delusional thinking/ hallucinations/ cognitive difficulties||Difficulty interpreting communications, following instructions, seeking help/ direction||Person to assist with interactions, especially with appointments|
|Example: post-traumatic stress and anxiety||Social withdrawal/ difficulty responding to social situations/ fear or distrust of others/ difficulty getting needs met||Person to accompany when attending social activities at least for a period of time|
|Example: Cognitive difficulties||Difficulty with organising tasks, learning new information, memory||Equipment that assists with recording and organising. Person to assist with learning and engaging in particular activities|
|Example: Amotivation/ Cognitive Difficulties||Difficulty with organising tasks, learning new information, memory||Person to supervise, prompt, support with care of house, managing money, getting services.|
|Example: Side effects causing weight gain, increased appetite, lethargy||Difficulty with self-care activities including hygiene, managing physical wellbeing, diet||Assistive equipment to enable self- care activities. Access to healthy lifestyle activities including exercise|