invisibleloadOT

The UNSEEN framework

Six lenses for capturing invisible load and turning it into evidence. UNSEEN brings together established frameworks, research based tools and almost a decade of practice across mental health, the NDIS and workplace rehabilitation. It builds on the evidence rather than replacing it.

See the evidence basePacks built on UNSEEN

Four lenses capture the load. Two turn it into evidence.

  • Uneven days

    Function changes from day to day, so one snapshot misleads. Capture best, typical and worst days, and how often each happens.

  • Net effort

    Tasks get done at a cost in time, energy and recovery. Capture the cost, not only whether the task was done.

  • Supports removed

    Family, friends, strategies and systems do work that disappears from view. Ask what would happen without them.

  • Every setting

    People cope in one setting at a cost in another. Look past the assessment room to home, work and the day after.

  • Evidence measures

    Use established frameworks and measures so what you have captured holds up.

  • Name the need

    Write findings and recommendations in functional terms a decision maker can act on.

Invisible load is the effort, energy and support it takes a person to get through everyday life with a disability or condition that others can't readily see, and that a single assessment, observation or form tends to miss.

It's our practice term, not a diagnosis or a standardised measure. It brings together established research so the load can be captured in assessment and written up as evidence. It has six parts.

  • Fluctuation

    Function changes from day to day and over time, so one snapshot misleads. UNSEEN lens: Uneven days.

    Disability described as episodic, with triggers for major episodes (O'Brien et al. 2008).

  • Hidden effort

    Tasks get done, at a cost in time, energy and recovery. UNSEEN lens: Net effort.

    Workload as “the cost incurred by a human operator” to reach a level of performance (Hart and Staveland 1988); mental fatigue with time on task (Boksem, Lorist and Meijman 2005); delayed worsening after exertion in ME/CFS (NICE 2021).

  • Support holding it together

    Family, friends, strategies and systems doing work that disappears from view. UNSEEN lens: Supports removed.

    “No work is inherently either visible or invisible” (Star and Strauss 1999); compensation strategies in adult ADHD (Canela et al. 2017).

  • Masking and context

    Coping in one setting at a cost in another. UNSEEN lens: Every setting.

    Camouflaging in autistic adults and the exhaustion that follows (Hull et al. 2017); capacity compared with performance (WHO ICF 2001).

  • Managing the condition

    Appointments, medication, forms, planning and monitoring. UNSEEN lens: Net effort and Supports removed.

    Burden of Treatment Theory, “the work that patients and their networks do” (May et al. 2014); illness, everyday and biographical work (Corbin and Strauss 1985); anticipating, identifying, deciding and monitoring (Daminger 2019).

  • Accumulation

    Carried over months, the load adds up to exhaustion, burnout or relapse. UNSEEN lens: Uneven days.

    Allostatic load, “the wear and tear that results from chronic overactivity or underactivity of allostatic systems” (McEwen 1998); autistic burnout (Raymaker et al. 2020).

Harder to see, harder to be believed

People with invisible disabilities “often go unnoticed or are not believed about their difficulties” (Hendry et al. 2022). Invisible conditions are judged less legitimate than visible ones (Godard, Hebl and Nittrouer 2022), and people face ongoing decisions about whether to disclose at work (Santuzzi et al. 2014; Norstedt 2019).

  • 5.5 million

    Australians (21.4%) had disability.

  • 24.7%

    of people with disability named a mental or behavioural disorder as their main condition.

  • 1.7 million

    Australians (6.5%) had psychosocial disability, and 87.2% of them had other types of disability too.

  • 290,900

    Autistic Australians (1.1%), 91.4% of whom had disability.

Sources: ABS, Disability, Ageing and Carers, Australia 2022; ABS, Psychosocial disability, Australia 2022.

Where we focus

An invisible disability is “a physical, mental or neurological impairment that cannot be seen” (Hendry et al. 2022).

  • Mental health and psychosocial

    Depression, bipolar disorder, schizophrenia, anxiety disorders, PTSD and other psychological injury.

    Core focus

  • Neurodevelopmental and learning

    Autism, ADHD, learning disability, fetal alcohol spectrum disorder.

    Core focus

  • Chronic illness and fatigue

    ME/CFS, diabetes, arthritis, respiratory conditions, cystic fibrosis, HIV, sleep disorders.

    Core focus

  • Pain

    Chronic pain.

    Core focus

  • Brain and neurological

    Acquired and traumatic brain injury, epilepsy, multiple sclerosis, chronic migraine.

    Where function is affected

  • Sensory

    Hearing loss, vision impairment, sensory and processing difficulties.

    Where function is affected

What we build on

Everything invisibleloadOT teaches and sells draws on the frameworks, measures and research below. Standardised measures are named and referenced, never reproduced, and licences are checked before use.

Frameworks and models

  • WHO ICF. Shared language for functioning and disability, environmental factors, and capacity compared with performance. (WHO 2001)
  • Biopsychosocial model. Biological, psychological and social factors together. (Engel 1977)
  • Person Environment Occupation (PEO). Performance as the fit between person, environment and occupation. (Law et al. 1996)
  • CMOP-E. Person, occupation and environment, with engagement as well as performance. (Townsend and Polatajko (eds) 2007)
  • Model of Human Occupation (MOHO). Volition, habituation, performance capacity and environment. (Kielhofner; Taylor (ed) 2017)
  • NDIS Act 2013, section 24. Six functional capacity areas: communication, social interaction, learning, mobility, self care, self management. (NDIS Act 2013 (Cth))
  • Recovery oriented practice. Hope, person first and holistic practice, personal recovery, social inclusion. (AHMAC 2013)
  • Psychosocial hazards Code of Practice. The 14 common psychosocial hazards at work. (Safe Work Australia 2022)
  • Episodic disability framework. Disability that comes and goes, with triggers and uncertainty. (O'Brien et al. 2008)
  • Burden of Treatment Theory. The work of being a patient, weighed against capacity. (May et al. 2014)
  • Trauma informed practice. Safety, trustworthiness, choice, collaboration, empowerment and respect for diversity. (Blue Knot Foundation 2023)
  • Cultural safety. Cultural safety is determined by Aboriginal and Torres Strait Islander individuals, families and communities; culturally responsive and safe practice is an OT competency. (Shared Code of conduct 2022; OTBA Competency Standards 2018)

Measures

  • NASA TLX. Workload across six subscales; we use it to structure ratings of task demand alongside validated measures. (Hart and Staveland 1988)
  • WHODAS 2.0. Functioning across six domains, in 36 and 12 item versions. (Üstün et al. 2010)
  • LSP 16. Clinician rated life skills. (Rosen et al. 1989; Buckingham et al. 1998)
  • HoNOS. Clinician rated clinical problems and social functioning. (Wing et al. 1998)
  • Vineland 3. Adaptive behaviour: communication, daily living skills, socialisation. (Sparrow, Cicchetti and Saulnier 2016)
  • ABAS 3. Adaptive behaviour across conceptual, social and practical domains. (Harrison and Oakland 2015)
  • COPM. Self rated performance and satisfaction in valued occupations. (Law et al. 2019)
  • Adolescent/Adult Sensory Profile. Sensory processing across four quadrants. (Brown and Dunn 2002)
  • MOHOST. Occupational participation across six sections. (Parkinson et al. 2006)
  • K10. Non specific psychological distress. (Kessler et al. 2002)
  • DASS 21. Depression, anxiety and stress. (Lovibond and Lovibond 1995)
  • Fatigue Severity Scale. Fatigue severity and its impact on function. (Krupp et al. 1989)
  • Lawton IADL Scale. Eight instrumental activities of daily living. (Lawton and Brody 1969)
  • CAT Q. Camouflaging: compensation, masking, assimilation. (Hull et al. 2019)
  • EFPT, Kettle Test, Multiple Errands Test. Executive function in real tasks, with cue levels. (Baum et al. 2003; Hartman-Maeir et al. 2009; Shallice and Burgess 1991)