Market Readiness

MONASH UNIVERSITY AND VICTORIAN INSTITUTE OF FORENSIC

MEDICINE SUBMISSION TO THE JOINT STANDING COMMITTEE ON

THE NATIONAL DISABILITY INSURANCE SCHEME

September 2018

Name: Anna Cartwright, Alexandra Hopkins, Joshua Zail.

Address: Monash University, Clayton Campus, Scenic Blvd & Wellington Road, Clayton, VIC, 3800

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Introduction

Anna Cartwright, Alexandra Hopkins and Joshua Zail are Monash University students in the final year of their Bachelor of Science Advanced - Global Challenges (Honours) degree. In their Honours year the team is focussing on the issue of Young People in Residential Aged Care Services (YPiRACS). Young People (those under 65 years of age) living in RACS are arguably one of the most isolated groups within society. In 2017, there were over 6,000 YPiRACS in Australia, with more than 500 under the age of 50 years. There is consensus across the healthcare and disability sectors that RACS are generally an inappropriate for Young People.

The implementation of the National Disability Insurance Scheme (NDIS) provides a new opportunity for young people currently living in RACS to access Specialist Disability Accommodation (SDA) and community services which are currently non-accessible. It also provides an opportunity for young people to be diverted from entering RACS through the provision of appropriate SDA and other supports.

This submission is in response to the Joint Standing Committee of the NDIS inquiry into Market Readiness. We have focussed on the SDA market and accessing the NDIS in the context of aged care.

The two research projects that form the basis for the statements in this submission are a geospatial analysis and recommendations developed through expert/ stakeholder panels. A description of the methods and results are attached in the appendix of this document.

Two key themes relevant to this inquiry emerged from this research:

1. Accessing the NDIS.

2. SDA Market Readiness.

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1. Accessing the NDIS:

Many young people currently living in RAC are eligible for the NDIS. However, it seems that many are experiencing problems accessing the NDIS and are being caught in the friction between the NDIS and the Aged Care system.

This sentiment is supported by the recommendation from expert/stakeholder panel:

That a proactive, multidisciplinary and collaborative approach be taken to assist younger people in RACS their family and staff to understand and be aware of their rights and choices to access services and equipment funded through the NDIS and other community services.

2. SDA Market Readiness:

We see young people entering into and residing for long periods of time in RACS. This is generally considered to be an inappropriate living situation. This points to the lack of appropriate SDA to service the needs of young people in RACS or those at risk of entering RACS. Until the SDA market reaches maturity we will continue to see young people being forced into RAC through lack of alternative options. Both the Expert/ Stakeholder Recommendations and the Geospatial Analysis support this conclusion.

Recommendation from expert and stakeholder panel:

That better Specialist Disability Accommodation (SDA) and more housing stock is created for people with disability, especially for young people living in aged care allowing for the appropriate housing stock and supports to promote alternative models of care. Although NDIA and government sector are currently addressing an increase in funding would expedite the progress of this initiative.

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Geospatial Analysis:

This map provides an age- and population-standardised measure, allowing for comparison of regions with different total populations and age structures. The national age-standardised prevalence of YPiRACS is 29 per 100,000 people aged less than 65 years.

The highest prevalence Statistical Areas Level 4 (SA4s) (34-49 per 100,000) were almost exclusively restricted to the south-east quadrant of the country, covering many areas of regional Victoria and NSW, as well as some of regional Tasmania and Southern Queensland. 17 of the 21 SA4s in the highest prevalence group are in regional Australia.

Of particular interest is a cluster of highest-prevalence SA4s around regional Victoria and southern NSW, including La Trobe – Gippsland, Warrnambool and Southwest Victoria, Ballarat, Northwest Victoria, Shepparton, and Murray in NSW.

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This map provides a measure of changes over time. A negative number (green shading) indicates a decrease in number of YPiRACS, while a positive number (blue shading) indicates an increase.

Between 2009 and 2017, the total number of YPiRACS decreased by 425 (6384 to 5879), which gives an average change of approximately -5 persons per SA4. While the number of YPiRACS decreased in Queensland and NSW by 136 and 131 persons respectively, Victoria experienced an increase of 40 persons.

Interestingly, the regional Victorian SA4s showing the highest prevalence also show increases in numbers of YPiRACS. This cluster of SA4s with increasing numbers of YPiRACS, and the net increase across Victoria, are unexpected and might represent a policy failure. La Trobe – Gippsland is of particular interest, as it features a large increase in numbers of YPiRACS, as well as high prevalence and density of YPiRACS. Inner capital city areas tended to experience a decrease in the number of YPiRACS. The five SA4s with

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the largest decrease were all in capital cities. This was not an overwhelming trend though; some areas of Melbourne and Sydney experienced significant increases.

Nationally, prevalence is higher in regional areas than capital cities. Interpretation of these findings is complex, as people with disabilities tend to experience lower socioeconomic status [1,2] which could lead to migration to areas with lower cost of living, such as regional areas. The need to maintain reasonable proximity to healthcare and other services may result in people with disabilities avoiding remote and very remote areas, which could lead to relatively high prevalence in regional areas. Alternative forms of short and long-term care for people with disabilities may be more accessible in major cities, leaving an extremely thin SDA market in regional Australia. This makes sense in the context of independent data collected from multiple sources: The YPiRACS proportion living in regional areas (31%) is higher than the general population proportion (26%), and the RACS population proportion (30%) [3,4,5].

[1] Glover JD, Hetzel DM, Tennant SK. The socioeconomic gradient and chronic illness and associated risk factors in Australia. Australia and New Zealand Health Policy. 2004;1(1):8.

[2] Australian Bureau of Statistics. A profile of people with disability in Australia. Disability, Ageing and Carers, Australia: Summary of Findings, 2015 [Internet]. 2015. Available from: http://www.abs.gov.au/AUSSTATS/abs@.nsf/Latestproducts/4430.0Main%20Feature s452015?opendocument&tabname=Summary&prodno=4430.0&issue=2015&num=&vi ew=

[3] Aged care data snapshot - 2017 [Internet]. 2018. Available from: https://www.gen- agedcaredata.gov.au/Resources/Access-data/2018/January/Aged-care-data-snapshot- 2017.

[4] Summer Foundation. Personal Communication to the researcher, premised on AIHW data provided to Summer Foundation. 2018.

[5] Population Estimates by Remoteness Area (ASGS 2016), 2007 to 2017. Australian Bureau of Statistics. Regional Population Growth, Australia, 2018.

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Appendix 1. Method for Geo-Mapping of Young People in Residential Aged Care

A geospatial analysis was performed with Statistical Areas Level 4 (2011 edition) as the core geographical unit. There are 87 spatial SA4s, covering the whole of Australia without gaps or overlaps. The Australian Bureau of Statistics (ABS) designed this geographical structure to reflect labour markets within each State and Territory, within the population limits imposed by the Labour Force Survey sample.

The AIHW is Australia’s national agency for statistics and information pertaining to health and welfare. The AIHW provided the researcher with data on YPiRACS, collected via the Aged Care Funding Instrument (ACFI) appraisal, which should be submitted for every resident. Appraisals are carried out by aged care staff and include specific assessment tools. The responsible government department, currently the Department of Health, reviews the ACFI appraisals to ensure they have been conducted accurately and can accept or reject the appraisals. The level of government funding provided to RACS is based on the care needs and dependency of individual residents as assessed by the ACFI.

The most current SA4 population estimates published by the ABS are available from the data portal ABS.Stat. These estimates are derived from census figures.

The 2011 SA4 structure was downloaded from the ABS website and imported to the Esri ArcMap platform. Esri is the standard Geographic Information System (GIS) for most human services and public health agencies, and a growing number of healthcare organizations globally. The analysis comprised data cleaning, formatting and calculations in Microsoft Excel, followed by import of the data to ArcMap, and construction of 13 choropleth maps. In ArcMap, each SA4 was represented as a polygon, and tagged with attributes such as SA4 Name, land area, or count of YPiRACS. Choropleth maps were constructed to visualise the geographical distribution of measures including prevalence, density, rates of change, age structure, gender breakdown, health/mental condition counts, and care needs ratings. Colour schemes were restricted to single-hue progressions and diverging schemes, increasing the suitability of the maps for colour- blind viewers and greyscale printing.

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Appendix 2. Recommendations for Improving the Quality of Care for Young People

in Residential Aged Care.

Methods and Recommendation Development:

These recommendations were generated in consultation with experts in, and stakeholders including representatives from:

a) aged care

b) clinical practice

c) policy and research

d) young people in residential aged care

e) law.

Three methods were applied to develop evidence for this work:

1. A literature review

2. A retrospective review of deaths among young people in RACS reported to Australian coroners

3. Expert consultation forums utilising a modified Nominal Group Technique.

From this analysis 10 recommendations to reduce the risk of harm among young people in RACS were formulated for consideration by RACS providers, government, agencies and professionals working in the field.

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Recommendations:

Improving Clinical Care

1. That educational resources and specific training programs to address cultural and condition-specific needs of younger people are developed and made available to RACS staff who are regularly involved in care of younger people. *

2. That primary care health professionals (including; GPs, allied health professionals and specialists) and RACS staff are educated and supported to provide individualised and coordinated care to improve access and delivery of required general medical assessments and condition specific care of younger people in RACS. *

3. That the clinical response to an adverse incident involving younger people in RACS is appropriate and aligned with the residents’ advanced care plan.

4. That the national disability and health care systems better support the provision of rehabilitation programs and access to health professionals to ensure that all younger people in RACS have access to the appropriate therapy, promote reablement and capacity building for their condition.

Collaborative Approach

5. That a proactive, multidisciplinary and collaborative approach be taken to assist younger people in RACS their family and staff to understand and be aware of their rights and choices to access services and equipment funded through the NDIS and other community services. *

6. That a national collaborative support and advocacy network incorporating consumers, disability advocates, RAC providers, medical, nursing, allied health and other stakeholders be developed and implemented to improve the care and lives of younger people in RACS.

Increasing Choices for Young People in RACS

7. That better Specialist Disability Accommodation (SDA) and more housing stock is created for people with disability, especially for young people

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living in aged care allowing for the appropriate housing stock and supports to promote alternative models of care. Although NDIA and government sector are currently addressing an increase in funding would expedite the progress of this initiative. *

8. That RACS apply the supported decision-making model for younger people in RACS, specifically to empower younger residents’ decision making surrounding their quality of life and respecting the principle of ‘dignity of risk’.

Reviewing and Reporting

9. That the health, law and ageing research unit’s recommendations from 2017 for prevention of injury related deaths in residential aged care services be reviewed by the original research team, medical, nursing and allied health professionals to determine their outcomes to date and to identify those pertinent to younger people in RACS.

10. That all incidents with a severe or fatal outcome (IRS grade 1 and 2) involving a younger person in RACS are externally investigated, the findings collated, analysed and stored in a single nation-wide database. Incidents of lesser severity should be internally reviewed and subjectable to audit by the Australian Aged Care Quality Agency.

• Recommendations voted most important for implementation by experts and stakeholders

A published recommendation book can be found at:

http://vifmcommuniques.org/wp-content/uploads/2018/08/YPiRACS- Recommendations-Ebook-FINAL.pdf

This document outlines the aim, rational, actions and barriers to each of the 10 recommendations as well as outlining the issue.

In terms of this submission the information relevant to the two recommendations mentioned is outlined below:

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1. That a proactive, multidisciplinary and collaborative approach be taken to

assist younger people in RACS their family and staff to understand and be aware of their rights and choices to access services and equipment funded through the NDIS and other community services.

Aim:

To ensure that every young person in RACS can easily access the services they wish to access and that no young person is involuntarily omitted from access to such services.

Rationale:

Parts of the aged care system also sit within the broader Australian Health Care System. This contributes to concerns that young people in residential aged care are getting caught between multiple systems [6]. This is exemplified by the recent implementation of the National Disability Insurance Scheme (NDIS). Young people living in RACS are eligible to receive assistance from the NDIS including planning and assessment, assistance with care-related costs (excluding daily living expenses or accommodation), support to age- appropriate networks, therapy and allied health support and specialist equipment [7].

However, there is still general confusion about how the NDIS fits into the existing aged care sector (National Aged Care Alliance, 2016) [8]. The Senate Standing Committee on Community Affairs found that there was a lack of clarity and contradicting evidence surrounding the role of the NDIS and that this uncertainty extended to individuals, families and service providers (Community Affairs References Committee, 2015) [9].

Actions:

This can be achieved by:

• RACS staff being encouraged to seek and be receptive to consultation with NDIS support coordinators.
• RACS staff and managers are made fully aware of the benefits that they are eligible for through the NDIS and how this differs through funding via the ACFI.
• Younger residents and significant others continue to be made aware of their entitlements under the scheme.

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Limitations:

Potential limitations of this recommendation and barriers to implementation include coordinating and navigating this suggestion with the rollout of the NDIS scheme. The implementation of this recommendation would also require changing perceptions of workers within the sector to overcome institutional and systemic barriers.

[6] National Aged Care Alliance. Improving the interface between the aged care and disability sectors. 2016. [cited 2018 Aug 6]. Available from: http://www.naca.asn.au/Publications/Improving%20the%20Interface%20Between%2 0the%20Aged%20Care%20and%20Disability%20Sectors.pdf

[7] National Disability Insurance Scheme (NDIS). Younger people in residential aged care. Supports the NDIS will fund for younger participants in residential aged care [press release]. 2013. [cited 2018 Jun 15] Available from: https://www.ndis.gov.au/document/supports-ndis-will-fund-younger 45

[8] National Aged Care Alliance. Improving the interface between the aged care and disability sectors. 2016. [cited 2018 Aug 6]. Available from:

http://www.naca.asn.au/Publications/Improving%20the%20Interface%20Between%2 0the%20Aged%20Care%20and%20Disability%20Sectors.pdf

[9] The Senate Community Affairs References Committee. Adequacy of existing residential care arrangements available for young people with severe physical, mental or intellectual disabilities in Australia. Canberra, Australian Capital Territory: Commonwealth of Australia; 2015.

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2. That better Specialist Disability Accommodation (SDA) and more housing

stock is created for people with disability, especially for young people living in aged care allowing for the appropriate housing stock and supports to promote alternative models of care. Although NDIA and government sector are currently addressing an increase in funding would expedite the progress of this initiative.

Aim:

To reduce the number of young people forced to live in RACS and increase the availability of appropriate alternatives that they may wish to pursue.

Rationale:

Currently, the disability accommodation market is fragmented with limited housing stock available. As of July 2016, the NDIS introduced the Specialist Disability Accommodation (SDA) payment policy which budgets $700 million to SDA annually [10]. The Summer Foundation estimates that $2.5 billion is needed to create housing for the ~6,000 young people currently living in RACS in Australia [11]. Additional funding is also needed to develop housing for the 2,000 young people entering RACS annually in Australia (Parliament of Australia, 2017) [12].

Actions:

This can be achieved by:

• Identify the amount and type of accommodation needed to supply young people at risk of and currently living in RACS.
• Increase national budget allocated to the development of SDA.
• Develop specified SDA.

Limitations:

Potential limitations of this recommendation and barriers to implementation include limited financial resources. Additionally, a commitment by government across all

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jurisdictions to work with funders of new RACS. Finally, the new housing stock would need to cater for the individual needs of residents.

[10] Wilkie R, Winkler D. NDIS Specialist Disability Accommodation: Pathway to a mature market. 2017;1-22. [cited 2018 Aug 2]. Available from: https://www.pwc.com.au/pdf/ndis-specialist-disability-accommodation-aug17-v2.pdf

[11] Winkler D, Taleporos G, Bo’sher L. How the NDIS is using the market to create housing for people with disability. The Conversation 2017. [cited 2018 Aug 2] Available from: https://theconversation.com/how-the-ndis-is-using-the-market-to-create- housing-for-people-with-disability-83144

[12] Parliament of Australia. Answers to Estimates Questions on Notice Social Services Portfolio (Official Hansard), S.C.A. Committee, Editor. 2017.

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