Submission to Inquiry on Independent Assessments for People with Parkinson's Victoria | External submission

Submission to the Joint Standing Committee on the

National Disability Insurance Scheme’s Inquiry into

March 2021

Parkinson’s Victoria

587 Canterbury Road, Surrey Hills VIC 3127 • PO Box 239, Surrey Hills VIC 3127 P 03 8809 0400 Freecall 1800 644 189 F 03 9888 4605 E info@parkinsons-vic.org.au W www.parkinsonsvic.org.au ABN 59 604 001 176

Table of Contents:

Preface……………………………………………………………………………………. 3
Introduction to Parkinson’s Victoria……………………………………………….. 3
‘Young-onset’ Parkinson’s and a need for NDIS support………………………. 4
Responses to the Terms of Reference……………………………………………… 5

4.1 a. the development, modelling, reasons and justifications for the introduction of independent assessments into the NDIS;…………………………………………………. 5

4.1 c. the human and financial resources needed to effectively implement independent assessments;…………………………………………………………………………………. 6

4.1 d. the independence, qualifications, training, expertise and quality assurance of assessors…………………………………………………………………………………… 6

4.1 e. the appropriateness of the assessment tools selected for use in independent assessments to determine plan funding…………………………………………………… 7

4.1 f. the implications of independent assessments for access to and eligibility for the NDIS…………………………………………………………………………… 8

4.1 g. the implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports……………………… 9

4.1 h. the circumstances in which a person may not be required to complete an independent assessment:…………………………………………………………. 10

4.1 i. opportunities to review or challenge the outcomes of independent Assessments………………………………………………………………………….. 11

4.1 j. the appropriateness of independent assessments for particular cohorts of people with disability, including Aboriginal and Torres Strait Islander peoples, people from regional, rural and remote areas, and people from culturally and linguistically diverse backgrounds.……………………………………………………… 11

4.1 k. the appropriateness of independent assessments for people with particular disability types, including psychosocial disability……………………………………… 12
Recommendations……………………………………………………………………………………. 12
Conclusion………………………………………………………………………………. 12
References………………………………………………………………………………. 13

Joint Standing Committee on the National Disability Insurance Scheme

PO Box 6100

Parliament House

Canberra ACT 2600

The Impact of Independent Assessments on the Parkinson’s Community: A submission by

Parkinson’s Victoria opposing the implementation of Independent Assessments under the

National Disability Insurance Scheme (NDIS).

1. Preface:

Parkinson’s Victoria welcomes the opportunity to provide a submission to the inquiry of the Joint

Standing Committee (JSC) on the National Disability Insurance Scheme (NDIS) into independent

assessments (IA).

This submission addresses the key concerns surrounding the proposed implementation of the IA

framework and its anticipated impact on the Parkinson’s community. Given the complexity of

progressive neurological conditions including Parkinson’s Disease and Atypical Parkinson’s

conditions, this submission highlights the concerns within the framework and emphasises the need

for a person-centred and individualised approach to accommodate those with complex, progressive

and often fluctuating symptomatology and function.

2. Introduction to Parkinson’s Victoria:

Parkinson’s Victoria is a not-for-profit, member based organisation committed to improving the lives

of people living with Parkinson’s through advocacy, research and support. We raise awareness and

funds for services and research in order to improve the quality of life for people living with Parkinson’s,

as well as those living with rarer, Atypical Parkinson’s conditions Australia-wide. We provide

information, education, advice and peer support services to improve the lives of those living with

Parkinson’s conditions, their families and carers, peer support groups and health care professionals.

3. ‘Young-onset’ Parkinson’s and a need for NDIS support:

Empirical research in Australia estimates that the incidence of Parkinson’s disease currently ranges

between 84,000 (lower end) and 212,000 (higher end), something that is conservatively estimated to

grow by 79% from 2014 to 2034. More than 27,000 Victorians live with Parkinson’s disease (Ayton et

al, 2018), and while the condition is more common in people over 65 years of age where prevalence

is greater than 82%, 18% are of working age (Deloitte Access Economics Report, Living with

Parkinson’s Disease, 2015). For those of working age, approximately 20% will be in later stages of

disease where severe disability occurs before the age of 65 years. It is therefore estimated between

3-5% living with Parkinson’s disease will be within scope for the NDIS. Access and equity to the NDIS

for those living with Parkinson’s remains concerning, with inconsistent and inadequate assessment

already an issue for this complex and progressive neurological condition.

Parkinson’s symptomatology is complex and progression continues despite medication therapy.

Considering the heterogeneous nature of the condition, it is important to note that Parkinson’s doesn’t

just affect movement. Non-motor symptoms including pain, autonomic dysfunction, anxiety,

depression, fatigue, communication issues, swallowing problems, sleep disturbance and cognitive

decline, can be equally incapacitating. The functional impact of these motor and non-motor symptoms

largely depends on disease progression and response to medication therapy. Daily, and even hourly

fluctuations in symptoms and function are common which can result in variable capacity to perform

daily activities and sustain an individual’s expected and valued responsibilities or roles. Access to

suitably experienced health professionals can assist in managing the challenges of Parkinson’s

(Parkinson’s Victoria website; professional support). This is also the case for those with a rare Atypical

Parkinson’s condition, with average age of diagnosis typically in the sixties, and for which there is a

poorer prognosis and more rapid symptom progression (McFarland 2016). The functional impact of

these unique, complex and progressive conditions remains misunderstood, with stakeholders

reporting significant gaps in knowledge to support assessment as well as inconsistency in outcomes.

Parkinson’s Victoria acknowledge the positive impacts the NDIS has on the Parkinson’s Community.

Whilst we support the NDIS’ pursuit of improved equity and consistency within the scheme, the

Independent Assessment (IA) framework and proposed implementation raises significant concerns

for the Parkinson’s community’s continued and improved access to important NDIS supports.

Ensuring people with Parkinson’s can continue to access age-appropriate support is important for

improving individual outcomes (Deloitte Access Economics Report, p. 105). As part of its guiding

principles, the NDIS Act (2013) emphasises it will provide ‘certainty’ that participants will receive care

and support over their lifetime (NDIS Act, 2013; Part 2; 4). The proposed IA framework has generated

significant anxiety and uncertainty within the Parkinson’s Community. In addition to the significant

emotional and physical burden of living with a progressive neurological condition that has no cure,

NDIS participants report significant issues with current assessment and now face the increased risk

of being inappropriately denied NDIS supports or allocated insufficient funds to support their care

needs and life goals.

4. Responses to the Terms of Reference:

As per the Parliamentary Committee’s request, this submission responds to the ‘Terms of Reference’

highlighted for inquiry: (Independent Assessment Parliamentary inquiry terms of reference)

4.1 a. The development, modelling, reasons and justifications for the introduction of

independent assessments into the NDIS;

Whilst the rationale behind the Independent Assessment (IA) framework is acknowledged (equity of

access, fairness, consistency and scheme sustainability), concerns remain regarding consultation

with community in its developmental process and the proposed pace of implementation, particularly

for those living with complex, progressive neurological conditions.

As a guiding principle of the NDIS Act, it emphasises that people living with a disability have the right

to be “equal partners in decisions that will affect their lives” (NDIS Act, 2013, Part 2; 4). Whilst the

Minister for NDIS, Hon. Stuart Robert acknowledged that “people with disability (will) have a seat at

the table when it comes to implementing these reforms” (https://www.ndis.gov.au/news/5207-

landmark-reforms-deliver-promise-australias-ndis ), greater consultation and engagement with core

service recipients and disability organisations surrounding the developmental process for reforms on

IA is required.

IAs are to be implemented from the middle of 2021 for all applicants over 7 years of age (NDIS

Consultation Paper - Access and Eligibility with Independent Assessments, p.3). However,

Parkinson’s Victoria considers this model requires more comprehensive exploration, with greater

emphasis and analysis on its likely impact on people with complex and changing progressive

neurological illness. The Tune Review (2019) specifically stated; “the NDIA should not implement a

closed or deliberatively limited panel of providers to undertake functional capacity assessments”

(Tune Review 2019, p. 67), in support of a person-centred model. However the IA suggests a ‘one

size fits all’ model which is inconsistent with the recommendations of the Tune Review.

Implementation is being modelled on outcomes of a pilot of 600 participants, lacking representatives

of those living with physical or complex disability (Independent assessment pilot | NDIS).

The second pilot, whilst more inclusive of physical disability and greater in numbers, is still incomplete

(The second independent assessment pilot | NDIS). With participation in the pilots reliant on

volunteers, pilot results are not necessarily representative of those who have communication issues,

complex needs or less likely to self-advocate. The NDIA claim the findings from the second pilot

should “help how (the NDIA) implement independent assessments later this year” The second

independent assessment pilot | NDIS. With the end of the second pilot anticipated at a similar time to

the national rollout of proposed reforms, it seems highly unlikely for there to be sufficient opportunity

to apply learnings and make improvements to the IA implementation based on the pilot’s outcomes

and feedback obtained.

4.1 c. The human and financial resources needed to effectively implement independent

assessments;

Parkinson’s Victoria acknowledges the financial burden that many prospective participants

experience when compiling evidence in preparation for NDIS access and planning decisions. Despite

the financial advantage of having a ‘free’ assessment, arranged by the NDIS, applicants will still

require evidence of permanence from their medical team. The current IA model does not replace the

need for individuals to continue to require assessments from relevant health professionals in order to

direct their care. With the NDIS preventing Independent Assessors from providing recommendations

on support needs or “to provide any clinical or other professional advice to participants or prospective

participants” (pg.7 IAP Tender Statement of Work revised 3 June 2020), individuals will still need to

pursue assessments from relevant health professionals in order to obtain clinical advice and

recommendations on supports. For those with complex neurological conditions, there is limited

access to coordinated health care and an increased burden on the individual to navigate supports.

The need to endure an assessment not specifically tailored to the needs of an individual with a

complex neurological condition is likely to cause unnecessary duplication of assessments, additional

costs and potential distress to the participant. This is even more pertinent in the Parkinson’s

community where symptoms of anxiety, depression and fatigue are significantly common.

4.1 d. The independence, qualifications, training, expertise and quality assurance of

assessors;

The needs of people living with Young Onset Parkinson’s, which accounts for 20% of our cohort, are

a relative ‘rarity’ in terms of presentation, and combined with the heterogeneous nature of the

condition, creates challenges in clinical assessment. The proposed changes state that the IAs will be

performed by ‘trained experts’ (p. 7). However, given the complexity of Parkinson’s and Atypical

Parkinson’s conditions, it is questionable as to whether an Independent Assessor will have the

specialised knowledge in order to fully explore an applicant’s functional capacity. If the health care

professional performing the assessment does not understand complex and fluctuating neurological

symptoms and disease progression, the assessment outcome is unlikely to be reflective of the actual

situation. This will be further compromised when the individual has cognitive or communication issues

and lacks insight or is unable to express how their condition impacts their function.

Despite the NDIS’ principles of ‘participant choice and control’ (Part 2, section 3 (1e) National

Disability Insurance Scheme Act 2013), individuals will be required to have an assessment completed

by an unknown Independent Assessor, rather than by their regular health care providers (who

understand their functional capacity and intricacies of their condition). Whilst the recent NDIS

Consultation paper (NDIS Consultation Paper - Access and Eligibility with Independent Assessments)

highlights that in some circumstances, applicants’ usual health care providers can be consulted or

additional information requested (p.20), there is no indication of when and how this interface would

be generated or supported nor the weighting of this additional information in the eligibility process.

The ‘independent’ nature of an NDIA-contracted assessor also remains questionable which raises

concerns surrounding the assessment process. Participant feedback raised in the Tune Review

highlighted that “NDIA staff do not understand disability or appreciate the challenges people with

disability face as part of everyday life” (Tune Review 2019 p. 28). Considering the complexity of

progressive neurological conditions such as Parkinson’s and Atypical Parkinsons, there is significant

concern that Independent Assessors will not have the specialised knowledge and expertise in these

conditions to ensure fair and equitable access to the scheme. The impact of inadequately experienced

and specialised assessors is likely to see denial of NDIS access or an allocation of funds that is

unsuitable for the participant’s functional needs.

4.1 e. The appropriateness of the assessment tools selected for use in independent

assessments to determine plan funding;

Conditions such as Parkinson’s and Atypical Parkinson’s require clinician knowledge surrounding the

complex nature of motor and non-motor symptoms to support evaluation of an individual’s functional

capacity. A functional capacity assessment requires skills in observation, interviewing, professional

judgement, selection of appropriate and relevant assessment tools as well as consideration of

historical events and fluctuations in function. It is a comprehensive process incorporating perspectives

from the individual, family, carers, specialists and health professionals as well as the environmental

context. A functional capacity assessment performed by those suitably trained in its application should

generate recommendations representative of an individual’s support needs and direct realistic budget

estimates.

Despite this, the original tender for the Independent Assessor Panel highlights that Independent

Assessors will not provide recommendations on the support needs of participants or prospective

participants (pg.7 IAP Tender Statement of Work revised 3 June 2020), yet the NDIA proposes that

participants will receive a personalised plan budget, informed by their Independent Assessment

(NDIS Consultation Paper - Access and Eligibility with Independent Assessments, p. 11).

The current suite of assessment tools proposed by the NDIA were not designed, nor are they

recommended for the purpose of determining funding. Despite NDIA’s intention to use the results of

the IA to direct plan funding, there is currently no available information about how the NDIA plan to

calculate ‘personalised’ budgets utilising the data obtained from the assessments.

NDIA specify that “new and existing NDIS participants will undertake “three or four” tools from the

proposed suite of assessment tools as part of their IA (Independent Assessment toolkit NDIS

website). However, from the 6 core assessment tools currently highlighted in the proposed suite of

assessments, none will meet the needs for a complex disability such as Parkinson’s Disease. Of the

three tools most likely to be used to support funding allocation for Parkinson’s clientele (World Health

Organisation Disability Assessment 2.0. (WHODAS), the Craig Hospital Inventory of Environmental

Factors (CHIEF) and the Lower Extremity Functional Scale), none have been evaluated for the

purpose of directing funding.

NDIS claims the assessments will allow the Independent Assessor to find out about ‘good days and

bad days’, and highlights that individuals can elect to have the 3 hour assessment performed over a

number of appointment times (NDIS Consultation Paper - Access and Eligibility with Independent

Assessments,, p.18). Whilst we acknowledge the NDIA’s attempt to cater for variations in function,

the selected assessment tools are checklist-based and, as such, do not have sufficient detail to

adequately assess someone with Parkinson’s or Atypical Parkinson’s condition. This is particularly

the case for individuals who fluctuate on a daily or even hourly basis. A ‘point-in-time’ assessment

should not form the basis for significant decisions surrounding eligibility and allocation of funds for

people with Parkinson’s.

The above Consultation Paper also highlights an opportunity for informal chat to aid the Independent

Assessor and applicant / participant in getting to know each other (p.18), but how these conversations

will be interpreted and weighted by the NDIA remains unclear.

4.1 f. The implications of independent assessments for access to and eligibility for the NDIS;

The NDIA indicate that the data obtained through the IA will be norm-referenced with other

participants sharing similar ‘scores’ and levels of functional capacity ([NDIS Consultation Paper:

planning policy for personalised budgets and plan flexibility,](NDIS%20Consultation%20Paper:%20planning%20policy%20for%20personalised%20budgets%20and%20plan%20flexibility,) p. 13). This notion of ‘grouping’

individuals based upon outcomes obtained from point-in-time, checklist and score-based assessment

tools, raises significant concerns surrounding the NDIA’s understanding of disease-specific

implications on function. Parkinson’s and Atypical Parkinson’s conditions are complex and

heterogeneous. Determining functional capacity requires specialised knowledge and understanding

of the complex symptomatology and potential for fluctuations and progressive deterioration in

function. Establishing the impact of disease based upon point-in-time, ‘disability neutral’ assessment

tools creates significant potential for this cohort to be allocated a budget that is inappropriate for need,

or more importantly, the potential to be erroneously denied NDIS eligibility.

The NDIA highlights the potential frequency of IAs throughout a participant’s NDIS journey (at different

life-stages and at least every 5 years; NDIS Consultation Paper - Access and Eligibility with

Independent Assessments, p. 11) as well as their ability to inform an eligibility reassessment decision

(p. 22). Incorporating regular IAs has the potential to create uncertainty, fear and disengagement and

appears contradictory to the NDIS Act’s intention of providing ‘certainty of care and support’

throughout one’s lifetime (Part 2, section 4 (3) NDIS Act, 2013).

Similarly, there is concern that reassessments throughout an individual’s NDIS journey utilising these

assessment tools may not be adequately reflective of symptom progression and result in unrealistic

budgets, inadequate supports and potentially unnecessary reassessments of eligibility.

Learnings noted in the final report following the Royal Commission into Aged Care Quality and Safety,

highlight that; “who assesses a younger person, and when, has a significant influence on whether the

younger person enters residential aged care.” (Aged Care Royal Commission Final Report: Summary

1.3.10 p.122). Similarly, it states that; “assessments of younger people with significant care needs

should be undertaken by assessors with expertise and knowledge of service options” (p.122). It

remains essential that participants be assessed by suitably trained and experienced health

professionals and that the assessment outcomes are reflective of one’s actual function and needs.

Implications of inappropriately denying individuals with access to NDIS supports based upon

inexperience and inappropriate measures can have life-altering consequences and result

in admissions into permanent care as opposed to supporting participant needs in a community setting.

4.1 g. The implications of independent assessments for NDIS planning, including decisions

**related to funding reasonable and necessary supports;**

Historically, NDIS plan budgets have been established in response to an individual’s life goals. Yet

the proposed IA format does not include any recommendations for discussion or documentation of a

participant’s goals, aspirations or historical context. The NDIS state that “a participant will use their

personalised budget to pursue their goals, and meet their disability-related support needs” (NDIS

Consultation Paper: planning policy for personalised budgets and plan flexibility,p.17), yet their budget

will be established before the individual has an opportunity to discuss their goals and needs. With

draft budgets being informed by the results of the IA and with Independent Assessors having no

opportunity for clinical recommendations, there is significant potential for inappropriate budget

allocation and the subsequent hindrance of the participants’ goals and needs.

IA results may have a ricochet effect on budget allocation and subsequent access to reasonable and

necessary supports. If the outcome is not representative of an individual’s situation, there is a reliance

on the expertise and advocacy skills of other NDIA staff, including planners or delegates to realise

the discrepancies between actual and recorded levels of function and request amendments to

budgets accordingly.

NDIA stipulates that draft budgets can only be changed in ‘specific circumstances’, with the reliance

on the delegate to initiate the request for alterations to the allocated budget. Whilst it has been made

clear that Independent Assessors will be health care professionals, there is insufficient information

surrounding the credentials and expertise of NDIA Delegates and planners. As a result, we have little

assurance that there will be suitable opportunity for draft budgets to be appropriately analysed and

adjusted.

If a draft budget excludes an allocation of funds for high-cost supports such as complex assistive

technology or home modifications and if a delegate neglects to determine and explore this shortfall,

individuals with complex progressive neurological conditions, such as Parkinson’s and Atypical

Parkinson’s, may have inadequate funding allocations for essential equipment and home

modifications. The implications of this can be the difference between someone remaining in their own

home or entering supported disability accommodation, particularly when individuals require timely

access to funds without the need to jump through bureaucratic hoops.

Of similar concern for those with rapidly progressing neurological conditions, is the proposal the “funds

can’t be over-drawn above the funding level released into a plan at each interval” (either monthly or

quarterly); (NDIS Consultation Paper: planning policy for personalised budgets and plan flexibility,

p. 20). This has the potential to result in temporary periods of inappropriate supports and subsequent

risk to participants and carers.

4.1 h. the circumstances in which a person may not be required to complete an independent

**assessment:**

Parkinson’s Victoria oppose the introduction of mandatory IAs. The only circumstances in which a

person may require an IA is if they decline to source a preferred health professional or have no access

to a suitable health professional who can provide a functional capacity assessment. For those with

permanent and progressive disabilities, there should be no ongoing requirement to complete an IA,

as their eligibility to remain on the scheme should not be in question and the results from an IA provide

insufficient information to direct funding budgets.

As previously noted, the assessment tools that are proposed to form the basis for IA were not

designed, nor evaluated for the purpose of determining funding budgets. Wherever possible,

personalised budgets should be informed by suitably experienced health professionals who are

familiar with the participant’s condition and situation and who have specified recommendations based

on comprehensive functional assessments.

4.1 i. opportunities to review or challenge the outcomes of independent assessments;

The NDIA highlight the fact that participants will not be able to request a new IA if they disagree with

the IA results (NDIS Consultation Paper: planning policy for personalised budgets and plan flexibility).

Given the complexity of Parkinson’s and Atypical Parkinson’s conditions, it is questionable as to

whether an Independent Assessor will have the specialised knowledge, or tools, to support

assessment of an applicant’s functional capacity. Further, if the health care professional performing

the assessment is unable to assess the full complexity of neurological symptoms and anticipate

disease progression, the assessment outcome may not be reflective of the actual situation and

therefore impact the draft budget. This may be further compromised if the individual has reduced

insight or communication issues and is unable to acknowledge or express how their condition impacts

their function. Having no opportunity to dispute the assessment results or request a reassessment by

an alternative assessor is unfair and has implications of inappropriate allocation of funds,

inappropriate re-evaluation of NDIS eligibility and participant disengagement from the scheme.

4.1 j. the appropriateness of independent assessments for particular cohorts of people with

 **disability, including Aboriginal and Torres Strait Islander peoples, people from regional,**

**rural and remote areas, and people from culturally and linguistically diverse**

backgrounds;

Part of the justification behind the implementation of the IA framework is due to inconsistencies across

different socioeconomic backgrounds. Yet, the implementation of IA is likely to further disadvantage

those in remote and rural regions rather than aid equity of access and improve fairness in the scheme.

NDIS Participants will be limited for choice of organisations that provide an IA service and may be

allocated an assessor with a health qualification or speciality not suited to the individual’s specific

functional need (for example, allocating a Physiotherapist rather than Speech Pathologist to an

individual with significant communication and cognitive issues). This is especially so in rural and

remote areas, where successful IA tenders are likely to be from large organisations, covering

considerable geographical areas. Rural participants will be further disadvantaged by geographical

limitations and the likely completion of telehealth assessments, regardless of participant choice and

potential communication, cultural or language barriers.

4.1 k. the appropriateness of independent assessments for people with particular

    **disability types, including psychosocial disability**

Parkinson’s and Atypical Parkinson’s conditions are highly complex. Having access to Health

Professionals with sufficient experience and knowledge in management of these conditions is already

challenging. With the Parkinson’s community experiencing motor fluctuations, complex

symptomatology and progressive deterioration in function, there is concern that functional capacity

will be inadequately captured using the proposed model of IA.

IAs are likely to result in individuals being ‘categorised’ inappropriately, establishing unrealistic

budgets and generating stressful, and inappropriate revisions of eligibility. For individuals diagnosed

with a progressive neurological condition, that has no cure, there should be no requirement to re-

establish or reassess NDIS eligibility at any stage. This added threat of having NDIS support revoked

has potential to exacerbate common non-motor symptoms such as anxiety and depression and may

inevitably lead to participant disengagement and risk of harm to both the individual and carers.

5. Recommendations:

Parkinson’s Victoria recommend the following:

Immediately pause the proposed implementation of compulsory Independent Assessments
Thoroughly consult with stake-holders, including people with a disability, their supporters, the

disability sector and service providers impacted by progressive neurological conditions.
Complete a thorough, independent evaluation of the proposed model of IA.
Re-evaluate the training and expertise required of assessors, planners and delegates to

ensure plan budgets are allocated appropriately.
Ensure participants maintain access to sufficient funds, in a timely manner, due to rapid

disease progression or unexpected change in circumstances

6. Conclusion:

Parkinson’s Victoria thanks members of the Joint Standing Committee for the opportunity to raise

matters of concern regarding the proposed IA model. Parkinson’s Victoria seeks greater stakeholder

consultation and the development of evidence in order to support the IA model. Further investigation

is required to determine more appropriate assessment methods and tools for individuals living with

complex, progressive neurological conditions. Similarly, a re-evaluation of assessor requirements and

expertise is also required, in order to ensure that the functional needs of this clientele are met with

realistic budget allocations, reflective of individual goals, needs and anticipated progression. Without

amendments, the IA model is likely to create further anxiety, uncertainty and disengagement, putting

people with disabilities, and their carers, at potential risk for harm.

8. References:

Ayton, D., Ayton, S., Barker, AL., Bush, AI and Warren, N. (2018). Parkinson’s disease prevalence

and the association with rurality and agricultural determinants. Parkinsonism & Related Disorders.

October 2018.

CHIEF: Craig Hospital Inventory of Environmental Factors Version 3.0, 2001. Craig Hospital

Research Department, Colorado. CHIEF

Deloitte Access Economics; Living with Parkinson’s Disease, An updated economic analysis 2014,

Parkinson’s Australia Inc.

McFarland, N (2016) Diagnostic Approach to Atypical Parkinsonian Syndromes Continuum (Minneap

Minn) vol 22, 4 Movement Disorders; 117-42

Ministers for the Department of Social Service; The Hon Stuart Robert MP Media Release “Landmark

reforms to deliver on the promise of Australia’s National Disability Insurance Scheme (NDIS), 28

August 2020. https://www.ndis.gov.au/news/5207-landmark-reforms-deliver-promise-australias-ndis

National Disability Insurance Scheme Act (2013) National Disability Insurance Scheme Act 2013

NDIS Consultation Paper – Access and Eligibility with Independent Assessments Nov 2020, Version

1.0 NDIS Consultation Paper - Access and Eligibility with Independent Assessments

NDIS Consultation Paper – Planning Policy for Personalised Budgets and Plan Flexibility Nov 2020,

Version 1.0

NDIS (2020) Independent Assessment Pilot; Independent assessment pilot | NDIS

NDIS (2020) The Independent assessment toolkit; The independent assessment toolkit | NDIS

NDIS (June, 2020) Attachment 1 – Statement of Work, Request for Tender; Independent Assessment

Panel Reference Number – 1000724626. IAP Tender Statement of Work revised 3 June 2020

NDIS (2020) The second Independent Assessment Pilot The second independent assessment pilot |

NDIS

Parkinson’s Victoria website: Professional support https://www.parkinsonsvic.org.au/parkinsons-and-

you/professional-support/

Parliament of Australia: Joint Standing committee on the National Disability Insurance Scheme Inquiry

into Independent Assessments; Terms of Reference Independent Assessment Parliamentary inquiry

terms of reference

Royal Commission into Aged Care Quality and Safety: Summary Report, Aged Care Royal

Commission Final Report: Summary 2021

Tune, David (2019). Review of the National Disability Insurance Scheme Act 2013; Removing Red

Tape and Implementing the NDIS Participant Service Guarantee Tune Review 2019

Ustun, T, Kostanjsek, N, Chatterji, S & Rehm, J., (2010) WHODAS: Measuring Health and Disability,

Manual for WHO Disability Assessment Schedule WHODAS 2.0. WHODAS