DOCUMENT 15
FOI-24/25-0120
Research – Factors affecting plan budget and utilisation
IA project- addressing historical biases in planning to control for these variables
and identify supports that should be funded.
The Tune review and review of data by the OSA indicates a number of factors,
such as location and socioeconomic factors impact the size and utilisation of
NDIS Plan budgets (greater disadvantage = lower plan and lower plan
utilisation).
Requesting a broad review of the literature to identify known factors which
impede service utilisation.
Brief
Identified factors for TAB to provide a short commentary of impact and options
for remediation:
CALD
ATSI
Multiple participants in the family
“thin market”
Regional/remote/very remote
Education status
Health/services literacy
Date
06/05/2021
Requester(s)
Katrin s47F - personal   p– Assistant Director (TAB)
Researcher
Jane s47F - personal priv - Research Team Leader (TAB)
Cleared
N/A
Please note:
The research and literature reviews collated by our TAB Research Team are not to be shared external to the Branch. These
are for internal TAB use only and are intended to assist our advisors with their reasonable and necessary decision-making.
Delegates have access to a wide variety of comprehensive guidance material. If Delegates require further information on
access or planning matters they are to call the TAPS line for advice.
The Research Team are unable to ensure that the information listed below provides an accurate & up-to-date snapshot of
these matters.
1  Contents
2
Culturally and Linguistically Diverse Populations ........................................................................... 2
2.1
Barriers and impact ................................................................................................................. 2
2.2
Potential responses ................................................................................................................. 3
3
Aboriginal and Torres Strait Islander Communities ........................................................................ 3
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3.1
Barriers and impact ................................................................................................................. 4
3.2
Potential responses ................................................................................................................. 4
4
Multiple participants in the family .................................................................................................. 6
4.1
Barriers and impact ................................................................................................................. 6
4.2
Potential responses ................................................................................................................. 6
5
“Thin Market” ................................................................................................................................. 6
5.1
Barriers and impact ................................................................................................................. 7
5.2
Potential responses ................................................................................................................. 7
6
Regional/remote/very remote ........................................................................................................ 8
6.1
Barriers and impact ................................................................................................................. 8
6.2
Potential responses ................................................................................................................. 8
7
Education status .............................................................................................................................. 9
7.1
Barriers and impact ................................................................................................................. 9
7.2
Potential responses ................................................................................................................. 9
8
Health/services literacy................................................................................................................. 10
8.1
Barriers and impact ............................................................................................................... 10
8.2
Potential responses ............................................................................................................... 10
9
References .................................................................................................................................... 11

2  Culturally and Linguistically Diverse Populations

A study by Zhou [1] has found that the rate of access of specialist disability services by people with
disability who were from culturally and linguistically diverse (CALD) backgrounds is highly
disproportionate to their presence in the community.
As a whole, people from CALD backgrounds:
•  Have a similar level of disability as Australia-born people.
•  Have a greater rate of profound and severe disability.
•  A higher level of need for assistance in undertaking core activities.
For younger age cohorts targeted by specialist disability services, there is little difference in the level
of need for assistance between people from CALD backgrounds and the rest of community. Those
people who mainly speak languages other than English at home have a relatively higher level of need
for assistance than those who speak mainly English at home.
2.1  Barriers and impact

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•  Some cultures tend to offer more informal care to their community and family members
than others [1, 2].
•  Literacy and language skills, including lack of understanding about disability (at an individual
level and by parents of children with a disability).
•  The need for an interpreter.
•  Lack of knowledge about what government funded services exist in Australia. Particularly
those who come from cultures where states provide very limited support to people with
disability. Although multilingual information is available, this cohort may not proactively
search for services.
•  Cultural competence of service providers.

2.2  Potential responses

•  Recognition that this service access gap exists.
•  Narrowing the gap requires better understanding (research) of how cultural characteristics
of people with disability from CALD backgrounds impact their access.
•  Effectively disseminate service information targeting people with language barriers of the
existence of services.
3  Aboriginal and Torres Strait Islander Communities

The Australian Institute of Health and Welfare (AIHW) reports that the prevalence of disability is
more than twice as high in Aboriginal and Torres Strait Islander populations [3]. Among the
Aboriginal and Torres Strait Islander population there are higher rates of young people caring for
people with disabilities and higher rates of people with intellectual and psychological
disabilities involved in the criminal justice system [4]. Participation rates of Indigenous people in
disability services are lower than the reported prevalence of disability [4].
Many Indigenous people see trauma and loss of their cultural lands and sacred sites as constituting
signiﬁcant disabilities [5]. Disability is also seen to arise as a result of a lack of Western education,
such as the inability to read or do arithmetic, and the difﬁculty in getting past the barriers of
discrimination to access government and non-government-managed services [5]. Furthermore,
disability is commonly accepted as just part of life and supporting people with disabilities is seen as
family business [5].
Although not disability specific, the 2014-2015 Aboriginal and Torres Strait Islander Health Survey
conducted by the Department of the Prime Minister and Cabinet found that 35% of respondents
believed they had been treated unfairly within the previous 12 months because they were an
Aboriginal or Torres Strait Islander person [6]. Of those, 13% reported they had avoided seeking
healthcare due to experiencing unfair treatment in the past [6]. It is highly likely that these trends
also occur in the disability sector.
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3.1  Barriers and impact

Aboriginal and Torres Strait Islander people are not sufficiently involved in planning, delivering and
evaluating relevant services [4].
•  Lack of facilities that provide culturally appropriate services
•  Lack of information regarding services available
•  Negative attitudes of providers (perceptions of racism, blame and disregard or culture)
•  Social marginalisation
•  Remoteness
•  Child care
•  Transportation
•  Mistrust in government services and agencies.
•  Cultural attitudes, shame and stigma [5, 7]
o  Categorisation on the basis of perceived abilities or disabilities is seen as another
attempt to erode their social solidarity.
o  Discussing a person’s physical impairments can bring shame and embarrassment to
the person and to his or her family.
o  Family roles often function as a barrier for the provision of disability services because
offering help and assistance to Indigenous people with disabilities can be
misinterpreted as an embarrassment and an insult to the competence of their
family.
•  Transience of non-Indigenous people in very remote areas makes it very difficult for them to
form the support networks that are needed to assist with the raising of a child with
disability.

3.2  Potential responses

•  Empower Aboriginal and Torres Strait Islander people and their communities to develop and
implement new engagement strategies [4].
•  Development of an Indigenous deﬁnition of disability that captures the diversity of cultures
and experiences of colonisation among the Indigenous population [5].
•  Increase the cultural competency of service providers [5].
•  Development of a conceptual framework for research and policy development regarding
Indigenous people with disabilities, each Indigenous community must be understood in the
context of their experience of colonisation, disadvantage and cultural heritage [5].

The study by DiGiacomo, Delaney [8] provides a table of carer and providers suggestions to address
barriers to access.

Solution Categories
Carer-preferred solutions
Provider solutions
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Aboriginal
•  Provide education, workshops,  •  Grassroots-based; educating
Community
information sessions, and
families and teachers on
Controlled Health
support groups (especially for
disability and available
Service-based support
children with intellectual
services; focus on prevention.
disability) for families.

•  Work within a family-centred,
•  Opportunities for carers to
flexible model, personal
speak with health
approach, and holistic
professionals/ service providers
approach.
face-to-face (rather than
computer or phone).

•  Collect accurate data on
number of children in the
community with disabilities to
inform local and government
strategies.
Aboriginal Child
•  Need for a dedicated support
•  Work within a centralised, case
Disability Support
worker/ Aboriginal Child
manager model; explore other
Workers
Disability Worker with disability
effective and acceptable
expertise - role in care
models (including funding
navigation, health education,
models) in urban Aboriginal
interpretation of medical
populations.
jargon and liaison support with
services.
Increased flexibility
•  Increased flexibility and
•  Minimise red-tape and rigid
responsiveness of respite
criteria, particularly during
services.
crisis; increase flexibility for
Aboriginal families.
School-based support
•  Utilise school data on
•  Increase awareness of
Indigenous and disability status
disability and support available
to ensure adequate resource
across professions and within
distribution; facilitate linkages
communities; increase
between other support
opportunity for network
agencies and schools.
building across sectors.
Contact Information
•  Routinely updated listing of

services and contacts for
support (general and disability-
specific information; with
consideration for child’s
developmental stages).
Inter-sectoral
•  Partnerships between schools,

partnerships
parents, and community
controlled organisations were
also seen as strategies to
enable access to services.

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4  Multiple participants in the family

Statistics from the United States indicate that approximately 21% of households with children with
disabilities had multiple disabled children [9]. However, not much is known about the characteristics
of households who have multiple children with disabilities and their experiences.
One important limitation of the existing caregiving research is its exclusive focus on one focal child
with disabilities in households [9]. In instances where families have multiple children with
disabilities, researchers often randomly choose one child for analysis or might select the child with a
more severe condition, ignoring any other children with disabilities in the household [9].

4.1  Barriers and impact

Various reports have found that households with more than one child with a disability are [9-11]:
•  More likely to be single parents.
•  Lack of support system/informal supports.
•  Less likely to be in work.
•  High levels of stress and poor mental health.
•  Negative social status.
•  More likely to be in semi-skilled or unskilled manual jobs.
•  More likely to be dependent on income support.
•  Less likely to own their own home.
•  Markedly higher rates of income poverty.
•  Greater unmet needs at all income levels.
•  Higher prevalence of disabled adults in the household.
•  Time spent on the coordination of care for each individual child is significant
o   increased direct and indirect costs to these families
4.2  Potential responses

•  Expanding support (beyond the current level) for low income households raising multiple
children with disabilities [9].
•  Providers and professionals should anticipate that families raising multiple children with
disabilities likely experience significantly elevated rates of hardship and deprivation. They need
to assist these families to efficiently co-ordinate care for multiple children with disabilities and
secure all available support services and entitlements [9].
5  “Thin Market”

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Thin markets exist where there is a gap between the needs of participants and the services available
in the market. The persistence of thin markets can constrain the agency’s ability to deliver
reasonable and necessary supports.
The below barriers, impact and potential responses were taken from the thin markets discussion
paper commissioned by the Commonwealth Department of Social Services and the NDIS [12].
5.1  Barriers and impact

•  Geographic isolation: Physical distance and travel time results in higher costs for service delivery
for isolated or highly dispersed communities
•  Vulnerable clients: The communities that some providers serve may have complex and higher
needs including isolation, complex disability, support needs and challenges in self-determining
their need. These clients require more highly qualified staff to service their needs.
•  Higher operating costs: Low client numbers (or difficulty in finding/connecting with clients that
are in the region), and/or highly dispersed clients result in higher per client costs than can be
supported under existing NDIS staff utilisation.
•  Workforce: Challenges in recruiting and retaining qualified workforces and providing learning
and development opportunities.
•  Temporary supply gaps:  Some supports (such as certain specialist’s supports and allied health
services) take time to reach levels required to meet demand.
5.2  Potential responses

Market Facilitation: These responses seek to enable competitive markets, for example by giving
participants information about the service options or providers available to them, or matching
supply and demand through electronic platforms. Supply partnerships, such as place-based
collaborative models, alternative business models, co-operatives or sharing infrastructure between
providers, can also support providers to overcome their service delivery challenges.
•  Examples that fall under this approach include the facilitation or provision of e-markets
platforms (e.g. my Aged Care), or programs that aim to facilitate the growth or transition
of the sector (e.g. the Sector Development Fund).
Market Deepening: These responses seek to encourage supply to meet needs, including by
‘bundling’ together demand for different services to enhance efficiency, where supplying one of the
services is inefficient; by pooling individualised funding to ensure economies of scale for a provider;
or by stimulating or providing direct supply inputs, such as by encouraging skilled workers into
markets in need.
•  Examples that fall under this approach include the mechanism used in the Multipurpose
Services model to bundle aged care, disability and health services, or programs that
encourage skilled workers to move to regional or remote areas (e.g. the Bonded Medical
Places Scheme, or the National Rural Health Student Network)
Regulation: These responses may control market operation to varying degrees through regulating or
setting prices, controlling market access, or otherwise governing the operation of the markets to
ensure it achieves service objectives.
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•  Examples that fall under this approach include: adding or modifying regional loadings
within the regulated price regime (e.g. changes accepted as part of the Independent
Pricing Review); or selection of service providers who can deliver services within certain
catchments.
Alternative commissioning models (incl. community led responses): This includes options that
involve direct commissioning or government provision of services, for example regulated monopoly
(one service provider) or oligopoly (few service providers) models. Options would also include
commissioning of community led responses (whether or not the financing would come from
government).
•  Examples that would fall under this approach include: directly contracting with a
provider, or number of providers, to provide access to services; or providing seed
funding for a community-led partnership.
6  Regional/remote/very remote

The burdensome effects of disability are amplified by the degree of remoteness. Unfortunately,
those who live outside of metropolitan areas become victims of circumstance.
6.1  Barriers and impact

•  Contrast in quality and availability of disability support services between the major cities and
rural and remote areas
•  Lack of capacity in over-stretched towns to deal with disability
•  Lack of and prescriptive nature of respite services
•  Lack of suitable alternative activities for people with disability
•  Transport
o  Lack of availability of public transport in some rural and remote areas
o  Greater costs incurred by people with disability in travelling to consultations
o  Increased time expended by health professionals in delivering services in rural and
remote areas compared with metropolitan areas.

6.2  Potential responses

The National Rural Health Alliance and National Disability and Carer Alliance have provided some
solutions to the above issues [13].
Tele-practice
•  Tele-practice is a therapy service that is delivered in-part or in-whole via remote
telecommunication. This may comprise elements including (but not limited to) Skype, video
sharing, instant messaging, email, and telephone.
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•  Tele-practice can eliminate travel time, and increase choice in service providers outside the
local area.
Allied Health Assistants
•  Allied health assistants (AHAs) are certificate-qualified individuals who can implement
interventions under the guidance of an allied health professional, remotely or in-person.
•  AHAs can have an in-depth knowledge of local community needs at the same time as having
a broad knowledge of allied health services.
•  The combination of an AHA and clinician brings expertise in the local community, and
expertise in clinical practice, as well as providing a more regular and timely service to
individuals, since the clinician need not be physically present at all times.
Fly-in-fly-out practitioners
▪  FIFO allied health practitioners who specialise in disability have the potential to empower rural
and remote communities, and build capacity amongst generalist allied health practitioners,
educators, and allied health assistants.

7  Education status

The AIHW states that:
•  21% of people aged 16-64 who acquired disability before age 15 left school before 16 (8.9%
without disability).
•  34% of people aged 20 and over with disability have completed year 12 (66% without
disability).
•  17% of people aged 20 and over with disability have a bachelor’s degree or higher (35%
without disability).
Level of education attained can affect participation in other key life areas, including employment,
ability to achieve economic independence or the skills to manage adult life (following school).
7.1  Barriers and impact

•  Some schools can create barriers to education for children with a disability. Lack of
educational attainment impacts the participant and society.
•  Lack of an assertive family member/informal support network to advocate on the behalf of
the participant can make it difficult to navigate the system.
o  Mild intellectual disability may be a barrier to reaching out and obtaining support.

7.2  Potential responses

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Lack of any suggestions in this area. Allocation of an advocate for participants with a lack of
understanding of how to navigate the NDIS and find services/providers. More frequent check-ins
with high risk participants.
8  Health/services literacy

Individual health literacy is the skills, knowledge, motivation and capacity of a person to access,
understand, appraise and apply information to make effective decisions about health and health
care and take appropriate action. Health literacy is important because it shapes people’s health and
the safety and quality of health care [14].
8.1  Barriers and impact

Some of the different people who may be at higher risk of low individual health literacy include [14]:
➢  People from lower socio-economic backgrounds.
➢  People with lived mental health experience
➢  Elderly people
➢  People living with disabilities
➢  Aboriginal and Torres Strait Islander peoples
➢  People from CALD backgrounds
➢  People with drug and alcohol dependencies
➢  People experiencing chronic or complex illness
➢  People who are homeless, socially isolated or geographically isolated.

•  Lack of knowledge impacts the decisions made and actions of participants at home, in the
workplace and the community.
•  Health literacy influences people’s lifestyle choices, the type of preventive health actions
they take and the way they access, use and maintain healthcare regimens.
o  can exacerbate underlying access and equity issues that people from disadvantaged
groups may be experiencing
•  A person with a disability may have difficulties with physical access to health services, or
have difficulty communicating with healthcare providers which is a barrier to participating in
their own health care.
8.2  Potential responses

To address health literacy in a coordinated way in Australia it’s necessary to:
•  Embed health literacy into high-level systems and organisational policies and practices.
•  Ensure that health information is clear, focused and useable.
•  Integrate health literacy into education for consumers and healthcare providers.

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9 References

1.
Zhou Q. Accessing disability services by people from culturally and linguistically diverse
backgrounds in Australia. Disability and Rehabilitation [Internet]. 2016 2016/04/23; 38(9):[844-52
pp.]. Available from: https://doi.org/10.3109/09638288.2015.1062925.
2.
Boughtwood D, Shanley C, Adams J, Santalucia Y, Kyriazopoulos H, Pond D, et al. Culturally
and Linguistically Diverse (CALD) Families Dealing with Dementia: An Examination of the Experiences
and Perceptions of Multicultural Community Link Workers. Journal of Cross-Cultural Gerontology
[Internet]. 2011 2011/12/01; 26(4):[365-77 pp.]. Available from: https://doi.org/10.1007/s10823-
011-9155-9.
3.
Australian Institute of Health and Welfare. Disability in Australia: trends in prevalence,
education, employment and community living. Canberra, Australia. Bulletin no. 61. Cat. no. AUS 103.
AIHW; 2008. Available from: https://www.aihw.gov.au/getmedia/c11c595b-1531-4ca9-95ab-
071c1b68d8e9/bulletin61.pdf.aspx?inline=true.

4.
Canuto K, Harfield S, Wittert G, Brown A. Listen, understand, collaborate: developing
innovative strategies to improve health service utilisation by Aboriginal and Torres Strait Islander
men. ANZJPH [Internet]. 2019; 43(4). Available from: https://onlinelibrary.wiley.com/pb-
assets/assets/17536405/ANZJPH%202019-4 Full Issue for Download-1565156916153.pdf#page=7.
5.
Gilroy J, Donelly M, Colmar S, Parmenter T. Conceptual framework for policy and research
development with Indigenous people with disabilities2013; (2):[42–58 pp.]. Available from:
https://search.informit.org/doi/10.3316/informit.751842945817584.
6.
Australian Health Ministers’ Advisory Council. Aboriginal and Torres Strait Islander Health
Performance Framework 2014 Report. Canberra, Australia: AHMAC; 2015. Available from:
https://www.pmc.gov.au/sites/default/files/publications/Aboriginal and Torres Strait Islander HP
F 2014%20-%20edited%2016%20June2015.pdf.

7.
Aboriginal Disability Network New South Wales. Telling it like it is: a report on community
consultations with Aboriginal people with disability and their associates throughout NSW, 2004–
2005. 2007. Available from: https://fpdn.org.au/telling-it-like-it-is/.

8.
DiGiacomo M, Delaney P, Abbott P, Davidson PM, Delaney J, Vincent F. ‘Doing the hard
yards’: carer and provider focus group perspectives of accessing Aboriginal childhood disability
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services. BMC Health Services Research [Internet]. 2013 2013/08/19; 13(1):[326 p.]. Available from:
https://doi.org/10.1186/1472-6963-13-326.
9.
Ghosh S, Parish S. Prevalence and economic well-being of families raising multiple children
with disabilities. Children and Youth Services Review [Internet]. 2013 2013/09/01/; 35(9):[1431-9
pp.]. Available from: https://www.sciencedirect.com/science/article/pii/S0190740913002132.
10.
Lawton D. The number and characteristics of families with one or more than one disabled
child1998. Available from: http://eprints.whiterose.ac.uk/75145/1/Document.pdf.
11.
Kimura M, Yamazaki Y. The Lived Experience of Mothers of Multiple Children With
Intellectual Disabilities. Qualitative Health Research [Internet]. 2013 2013/10/01; 23(10):[1307-19
pp.]. Available from: https://doi.org/10.1177/1049732313504828.
12.
Ernst & Young Australia. NDIS Thin Markets Project Discussion paper to inform consultation,.
2019. Available from: https://engage.dss.gov.au/wp-content/uploads/2019/04/Thin-Markets-
Project-Discussion-Paper-2019-04-05.pdf.

13.
National Rural Health Alliance and National Disablity and Carer Alliance. Roundtable Report:
Implementation of DisabilityCare Australia in rural and remote areas,. 2013. Available from:
https://www.ruralhealth.org.au/document/roundtable-report-implementation-disabilitycare-
australia-rural-and-remote-areas-national.

14.
Australian Commission on Safety and Quality in Health Care. Health literacy: Taking action to
improve safety and quality. Sydney; 2014. Available from:
https://www.safetyandquality.gov.au/sites/default/files/migrated/Health-Literacy-Taking-action-to-
improve-safety-and-quality.pdf.

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DOCUMENT 20
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Research – List of Rapidly Progression Conditions
Generate a list of rapidly degenerative conditions.
As part of the Independent Assessment project - Personal Budget tool
(PBT) the Scheme actuary asked TAB for a list of rapidly degenerating
conditions for participants whom would be in the NDIS.
Brief
TAB SMEs were able to identify some - motor neuron disease,
Some types of muscular dystrophy
Some types of Spinal Muscular Atrophy.
However it is likely there are some chromosomal disorders or medical
conditions that result in a disability that also have rapid deterioration.
Date
19/03/2021
Requester(s)
Jane

s47F - personal  (Assistant Director – TAB)
Researcher
Janes47F - personal priva - Research Team Leader (TAB)
Cleared
N/A
Please note:
The research and literature reviews collated by our TAB Research Team are not to be shared external to the Branch. These
are for internal TAB use only and are intended to assist our advisors with their reasonable and necessary decision-making.
Delegates have access to a wide variety of comprehensive guidance material. If Delegates require further information on
access or planning matters they are to call the TAPS line for advice.
The Research Team are unable to ensure that the information listed below provides an accurate & up-to-date snapshot of
these matters.
1  Contents
2
List of rapidly progressing conditions ............................................................................................. 2
Research – List of Rapidly Progression Conditions
  Page 1 of 2
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2  List of rapidly progressing conditions

This list was compiled using a combination of search terms in Google such as:
Rapid*/fast
OR
Progress*/degenerat*
OR
Condition*/disease*/diagnos*

Every effort was made to locate conditions considered rapidly progressing (change in
condition/circumstance in <12 months), however, this list should not be considered exhaustive as
some conditions may have been overlooked. Any condition that made mention of “slow”
progression was not included.

•  Motor Neurone Disease (MND)/Amyotrophic lateral sclerosis (ALS)/Lou Gehrig’s Disease
•  Spinal Muscular Atrophy – Type 1 & 2 are rapidly progressing
•  Duchenne muscular dystrophy (DMD) – many individuals rapidly progress
•  Progressive supranuclear palsy
•  Primary progressive aphasia – rapid progression, usually live 3-12 years after diagnosis
•  transmissible spongiform encephalopathies/Prion disease
o  Creutzfeldt-Jakob Disease (CJD)
o  Variant Creutzfeldt-Jakob Disease (vCJD)
o  Gerstmann-Straussler-Scheinker Syndrome
o  Fatal Familial Insomnia
•  GM1 gangliosidosis
•  Canavan disease
•  X-linked adrenoleukodystrophy
•  Rett syndrome – Stage 1 & 2 progress rapidly

Research – List of Rapidly Progression Conditions                                                                                                                Page 2 of 2

Page 2 of 2

Document Outline

10. Deep Vein Thrombosis Pulmonary Embolism
11. Bursitis - Evidence Based Treatments
12. Degenerative Lumbar Disc Disease
13. Osteoporosis - Evidence Based Treatments
14. Osteoarthritis - Evidence Based Treatments 2021
15. Factors affecting plan budget and utilisation 2021