Submission 51 — Summer Foundation — NDIS Quality and Safeguards Commission | External submission

Joint Standing Committee

Inquiry into the NDIS

Quality and Safeguards

Commission

July 2020

The Summer Foundation acknowledges the work of Summer Foundation staff in enabling this submission.

Contact Name: Dr George Taleporos

TABLE OF CONTENTS 2

INTRODUCTION 3

RECOMMENDATIONS 6

NDIS QUALITY AND SAFEGUARDS AND YOUNGER PEOPLE IN RAC 7

PROBLEM: THE LACK OF ACCESS TO THE FULL RANGE OF NDIS QUALITY AND SAFETY SAFEGUARDS

AMONGST YOUNG PEOPLE IN RAC. 7

SOLUTION 7

PROBLEM: CONFUSION AMONGST NDIS PARTICIPANTS AND PROVIDERS REGARDING THEIR QUALITY AND

SAFEGUARDING RIGHTS AND OBLIGATIONS. 8

SOLUTION 8

SDA PRACTICE STANDARDS: PROBLEMS AND SOLUTIONS 9

PROBLEM: THERE ARE CONFLICTS BETWEEN THE SDA PRACTICE STANDARDS AND JURISDICTIONAL

REGULATIONS THAT ARE NOT RESOLVED 10

SOLUTION 12

PROBLEM: THE REQUIREMENTS RELATING TO THE SEPARATION OF HOUSING AND SUPPORT ARE NOT

CLEARLY DEFINED. 12

SOLUTION 13

PROBLEM: THE SDA PRACTICE STANDARDS USE OBSCURE LANGUAGE TO DESCRIBE SDA PROVIDER

OBLIGATIONS AND OFTEN FAIL TO PROVIDE ADEQUATE DETAILS ABOUT SPECIFIC TERMS OR CONCEPTS. 13

SOLUTION 14

PROBLEM: THE HUMAN RIGHTS OF SDA TENANTS AND ASSOCIATED OBLIGATIONS OF SDA PROVIDERS

ARE NOT CLEARLY IDENTIFIED AND DEFINED. 14

SOLUTION 16

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INTRODUCTION

Established in 2006, the Summer Foundation works to change human service policies and practices related to young people (18-64 years old) living in, or at risk of entering residential aged care (RAC) facilities.

Our Vision is that young people with disability and complex support needs live where and with whom they choose, with access to high-quality housing and support options that enhance health, wellbeing and participation.

Our Mission is to create, lead, and demonstrate long-term sustainable systems change that stops young people from being forced to live in RAC because there is nowhere else for them.

Access to high quality support and housing is a key priority area for our organisation. We have worked extensively on a range of research and policy projects to address the quality and safeguarding needs of people with complex disabilities.

We are currently funded by the NDIS Quality and Safeguards Commission to deliver a national Specialist Disability Accommodation (SDA) Quality and Safeguards education project.

The “Welcome Home – towards best practice management in Specialist Disability Accommodation” project will support SDA providers across Australia to understand their obligations under the NDIS Quality and Safeguarding Framework and the SDA Practice Standards, and build their capacity to develop a rights-based approach to the delivery of SDA services.

We are developing a suite of education and training materials and will deliver web-based training to SDA providers across Australia.

The Welcome Home resources will draw on the experiences of SDA providers developing and implementing policies and procedures to conform with the SDA Practice Standards, as well as the independent living experiences and aspirations of people with disability to inform what good practice should look like. The perspectives of SDA providers and people with disability will be incorporated into the resources in the form of videos and written case studies.

Our expertise on the quality and safeguarding needs of young people in or at risk of admission to RAC and quality and safeguarding of SDA informs this submission.

In this submission we identify problems, solutions and recommendations relating to the Inquiry’s Terms of Reference:

Related Matters, specifically the Commission’s approach to younger people in residential aged care; and

The adequacy and effectiveness of the NDIS Code of Conduct and the NDIS Practice Standards.

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The lived experience of young people in or at risk of RAC is at the centre of our work and informs this submission. We believe it is important that decision-makers hear the voices and understand what it is like to be forced to live in RAC. In light of this, we commence our submission with a small sample of the stories that we have collected about life from young people who have lived in RAC.

“The staff were not trained at all to look after a young person. I was not able to be taken anywhere outside of the nursing home because there was no vehicles able to carry an electric wheelchair. My care was substandard. During my time in the nursing home my carers physically, sexually and emotionally abused me. I am more than willing to talk about this abuse because the public need to know about what happened to me. My story needs to be heard. I tried to talk to people about my abuse and they kept telling me that they would look in to it but never did. This abuse has caused me to distrust most people I meet and I have a huge fear and distrust of medical and care professionals.”

50 years old (in RAC from 18 years old for 11 years) “Life in the nursing home was living hell. I lost all my choice and control. All I used to do when my parents weren’t there was lock myself in my room and watch TV. Because I was the youngest person in the facility I had to talk or to share interests with. I took up smoking again because I was

bored and the nurses gave more attention to the smokers. I got to go outside more often. I was in a no‐one manual wheelchair back then and couldn’t get out of my room… In the nursing home some of the

nurses were very slack and didn’t seem to want to be bothered. They said they had too much paperwork to do, it seems like there is more paperwork than time for clients. I mean, when you’re a nurse you’re meant to care about people. They only cared about their pay cheque. There needs to be a place that people want to visit. My friends did want to come and see me, but didn’t because they didn’t want to come and hang out in a nursing home. There was nothing there for young people, to do. I couldn’t have my radio up and play loud music. I wasn’t even allowed to Skype home to my parents in because the nurses didn’t want to be caught on the camera. I felt unloved, unwanted and lonely. It was horrible.” – 33 years old

“I lived in the aged care nursing home for two years and my health went downhill in that time. The care I received at the aged care nursing home was terrible. They would slather barrier cream on my sores which had to be scraped off after I left. They did not manage my catheter properly, failing to change it frequently enough and making mistakes with inserting it. I went to hospital 3 or 4 times with sepsis. At one time I had told them that the catheter had come out and I was left sitting there for hours and burnt by my urine. They didn’t know how to look after someone with MS – someone from the hospital had offered to come out and talk to them about caring for MS and they didn’t follow up. They would leave me in the showers – they’d put me in for showering and I would push the buzzer when I was ready – they would come back and turn off the buzzer and then leave me sitting there. I decided to buy an egg timer (I hid it in my bag) to see how long they took to come for me – I timed the delay – 36 minutes one day I waited after buzzer had been turned off – they just kept on doing it. The shower chair was ripping my skin from sitting there so long, really hurting.” – entered RAC at 55, lived there for 2 years

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These stories illustrate the importance of addressing the quality and safeguarding needs of young people in aged care. We thank the storytellers for sharing their experiences.

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RECOMMENDATIONS

Recommendation 1: Ensure NDIS participants in RAC have equal access to safeguarding provisions as other NDIS participants.

Recommendation 2: The NDIS Quality and Safety Commission must implement a strategy to build the capacity of RAC providers to understand their responsibilities towards NDIS participants and for NDIS participants to understand their rights.

Recommendation 3: SDA Practice Standards be updated to clarify compliance requirements, address conflicting requirements and require the highest level of safeguarding where jurisdictional requirements differ.

Recommendation 4: The SDA Practice Standards must be updated to provide comprehensive criteria for the separation of housing and support services.

Recommendation 5: Update the SDA Practice Standards to provide plain language and clearly defined key terms, concepts and performance outcomes.

Recommendation 6: Update the SDA Practice Standards to clearly specify how providers can meet their human rights obligations.

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NDIS QUALITY AND SAFEGUARDS AND YOUNGER PEOPLE IN

RAC

As of 31 March 2020, in Australia there were 4,018 NDIS participants who were in RAC of these, 171 were under the age of 45 years1. These participants have the same human rights as all other NDIS participants, however they are not currently afforded the same quality and safeguarding protections. There is also widespread confusion and a lack of knowledge among both participants and RAC providers about the protections that do apply. We have identified the following problems and solutions to address this area of need.

Problem: The lack of access to the full range of NDIS quality and safety safeguards amongst young people in RAC.

Currently, NDIS quality and safeguards do not apply to aged care providers.

The protections offered by the Aged Care Quality and Safety Commission are designed to protect the frail aged at the end of their lives, not to build the capacity of people with disability to re-engage in the social and economic life of their community. They are not suitable for meeting the needs of young people with disabilities.

We are aware that the NDIS Quality and Safeguards Commission is working with other agencies across the Commonwealth, particularly the Department of Health, the Department of Social Services and the Aged Care Quality and Safety Commission, to transition regulatory arrangements for RAC providers supporting NDIS participants from 1 December 2020. This was meant to occur 6 months earlier but was delayed as a result of the COVID-19 pandemic.

The capacity building of RAC providers to enable them to transition to the new standards is a significant issue and should be addressed as part of this, or as a problem of its own.

Solution

The work to introduce regulatory arrangements with RAC needs to occur with the utmost urgency. The pandemic which has delayed the introduction of these arrangements has only increased the need for oversight. The visitor restrictions that have been put in place to protect the health of residents in aged care has resulted in further isolation and less oversight by friends and family. This is likely to have increased the chance of abuse and neglect while reducing the likelihood that it is reported and addressed.

It is vital that the new regulatory arrangements are not delayed any further.

1 National Disability Insurance Agency. (2020). COAG Disability Reform Council Quarterly Report. 31

March 2020, Canberra, Australia: NDIA, Table H.10.

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Recommendation 1: Ensure NDIS participants in RAC have equal access to safeguarding provisions as other NDIS participants.

Problem: Confusion amongst NDIS participants and providers regarding their quality and safeguarding rights and obligations.

Currently, NDIS participants who are living in RAC have available the protections of the Aged Care Quality and Safety Commission, and the NDIS Code of Conduct when purchasing supports through the NDIS plan. Purchasing supports, seeking protections under multiple legislative instruments and administered by different commissions is difficult and confusing for individuals.

Furthermore, the Summer Foundation’s extensive consultations with RAC providers indicates that they commonly believe that, as they are not required to register as NDIS providers to provide the NDIS items listed above, they are, therefore, not bound by the NDIS Code of Conduct. This lack of knowledge and understanding of the regulations negatively impacts on the safeguarding protections available to NDIS participants who are in aged care.

Therefore, it is critical that the quality and safeguarding requirements are made clear to both participants and providers. Work is needed to build the capacity to understand their rights and responsibilities.

Solution

This strategy should fulfil the following key objectives:

Firstly, to educate the aged care sector, and RAC providers in particular, about their quality safeguarding obligations towards NDIS participants. Education and the provision of information should be backed by the imposition of severe penalties for RAC providers who fail to fulfil their obligations.

Secondly, to advocate for NDIS participants who are living in RAC or at risk of admission to RAC and their supporters. This campaign should educate this cohort about their rights on the importance of exercising choice and control when purchasing NDIS funded supports, and the capacity-building opportunities of contracting community-based providers. This educative role could be undertaken by the NDIS Quality and Safeguards Commission or outsourced to an organisation with close links to young people in RAC.

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SDA PRACTICE STANDARDS: PROBLEMS AND SOLUTIONS

SDA providers create independent living environments through a range of housing models, from group homes to single apartments. They support NDIS participants with the highest level of support needs, including people with extreme physical impairments and complex behaviours.

An SDA provider’s compliance obligations extend across Commonwealth and state/territory legislation, including residential tenancy laws, consumer laws and building and health and safety laws.

SDA providers are required by the NDIS Quality and Safeguards Commission to comply with the NDIS Code of Conduct and the SDA Practice Standards.

In a complex and volatile service environment, SDA providers need clear and comprehensive guidance about their role and responsibilities. The Practice Standards are not effective as a ‘communications piece’. Our work has been focused on SDA and therefore this submission is focused on the SDA Practice Standards. We have found that the SDA Practice Standards do not provide adequate guidance about the standard of policies and procedures that an SDA provider must achieve to realise performance outcomes.

Many SDA providers express dissatisfaction with the SDA Practice Standards in their current form and the low level of guidance they offer for establishing management practices that will comply with the Quality and Safeguarding Framework:

“Therearealotofpeoplewhodon’twanttodothewrongthing,butthereisarisk theymightbecausethereisalackofguidanceaboutwhatweshoulddo.Clearguidance wouldmakeeveryonesomuchhappier.”(SDAProvider)

Many SDA providers feel they are establishing management practices ‘in the dark’. This SDA provider is concerned that, in lieu of more adequate guidance on practices, the sector will need to wait until disputes emerge between SDA tenants and providers in order to test the quality of their policies and procedures:

“There’squitealotofconfidencegiventoustobeabletocomeupwiththebestoption.

Untilthisisreallytested,Idon’tthinkanybodyisgoingtobeabletosayonehundred

percent,‘Ithinkwehavegotthisright’…Ifitwastestedinatribunal,whatwould theoutcomebe?”(SDAProvider)

Research by the Welcome Home project has revealed that SDA providers who are new to the disability housing sector commonly rely on the support services they work with to establish tenancy management practices. This suggests the SDA Practice Standards are not providing adequate guidance

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to these SDA providers, to confidently establish what their service obligations are under the Quality and Safeguarding Framework and independently develop appropriate policies and procedures.

The health and wellbeing of SDA tenants is reliant on an SDA provider’s capacity to understand and uphold all rights and responsibilities related to an SDA tenancy. This includes explaining a tenant’s rights in a way that empowers the individual as a consumer, and ensuring SDA staff have the appropriate knowledge and skills to implement key policies and procedures.

Shortcomings in the SDA Practice Standards create significant risks for the SDA sector, including non-compliance with performance standards designed to protect SDA tenants and the embedding of poor management practices across the sector.

The performance indicator for Enrolment of an SDA Property requires an SDA provider to comply with all state and territory legislation that is ‘relevant’ to the delivery of SDA services:

Mechanismsareinplacetoensureaprovidermaintainsongoingcompliancewiththe

National Disability Insurance Scheme (Specialist Disability Accommodation

Conditions) Rules 2018 and all relevant laws and standards, including building standards and tenancy laws that apply to specialist disability accommodation dwellings.

The Practice Standards do not comprehensively identify these ‘relevant’ areas of law or provide any guidance with regard to this obligation, even though SDA providers identify this as one of the most complex and challenging areas of SDA management:

“Howdoweensurecompliancewiththingsthatarenot[inthe]practicestandardslike residential tenancy, Work Safe practices, building compliance with construction codes,allthesethingsdon’thaveagoodlevelofgovernanceatthemoment.There needstobeamechanismtomakesurethereiscompliancewiththosethings.”(SDA provider)

Below, we illustrate specific problems with the SDA Practice Standards and suggest solutions to resolve these problems.

Problem: There are conflicts between the SDA Practice Standards and jurisdictional regulations that are not resolved

The SDA Practice Standards do not provide adequate guidance on how an SDA provider should proceed when state or territory laws do not align with the Practice Standards.

This performance indicator for Service Agreements requires SDA providers to ensure an SDA service agreement complies with state or territory residential tenancy legislation:

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Workisundertakenwitheachparticipanttodevelopawrittenserviceagreementthat

meets the requirements of the National Disability Insurance Scheme (Specialist Disability Accommodation Conditions) Rules 2018, and any applicable state or territoryresidentialtenancylegislation.

However, with the exception of the Victorian Residential Tenancies Act (RTA) 1997, state and territory tenancy laws do not include provisions for SDA tenancies. Residential tenancy laws typically offer a lower level of protection for tenants than that required by the SDA Practice Standards.

Example: Notices to Vacate

The SDA Practice Standards set a 90-day notice period for a tenant to vacate a premises as a minimum term in an SDA service agreement:

Intheabsenceofanyapplicablestateorterritoryresidentialtenancylegislation,writtenservice

agreementsshoulddealwiththefollowingmatters:

i) theprovidertogivetheparticipantaminimumof90days’noticebeforethe participantisrequiredtovacatethepremises,unlessshorternoticeisrequiredto addressrisksofharmtotheparticipantorothers.

Under the residential tenancy laws in several states, notice periods for vacating a premises range from 7–60 days. In states where 90-day notice periods are required, the circumstances in which a shorter notice period can apply include matters that do not relate to ‘risksofharm’, such as owing rent or bond payments.

While the SDA Practice Standards outline minimum terms that must be observed “intheabsence”of state or territory residential tenancy legislation they do not clarify if these minimum terms should also be applied when state or territory legislation is simply inadequate. This creates uncertainty for SDA providers around the terms and conditions that should be included in an SDA service agreement:

“IfItakeNSW,forexample,NSWallowsforpeopletohaveaminimumof30days’ noticefromalandlordwhereasthePracticeStandardswouldsay90-daynoticeperiod.

Thenintermsofbreakingyourlease,under[residentialtenancylegislation]youwould

also incurabreakleasefee. It’snotreallyclearundertheSDAPracticeStandards whetherthat’spossibletodobutinpracticaltermsyouarenotgoingtobeabletodraw downonsomebody’sDSPaheadoftime,soitdoesbecomealittlebitcomplicatedin termsofnegotiatingtenancyarrangements.”(SDAprovider)

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Solution

The SDA Practice Standards should expand the guidance on how to proceed when state or territory legislation does not align with the Practice Standards. This should include circumstances where legislative provisions are absent, inadequate or impractical.

An SDA service agreement should provide the highest level of protection available to a tenant in a jurisdiction and defer to the minimum terms outlined in the Practice Standards when state or territory legislation offers inadequate protection.

An emerging good practice amongst SDA providers who deliver services in multiple jurisdictions is to tailor their SDA service agreement to align with the points of greatest protection for a tenant in each state and territory:

“We’vegotclausesthatwe’reintroducingtoourSDAagreement…justtomakesure thatwherethereareconflictswiththePracticeStandards,theintentionistobein favourofthetenant.”(SDAprovider)

Problem: The requirements relating to the separation of housing and support are not clearly defined.

The SDA Practice Standards support the requirement for SDA and in-home support services to be separately delivered to an SDA tenant.

The Practice Standards require an SDA provider to ensure a tenant can distinguish between their SDA and other NDIS support services, including SIL service providers. An SDA provider must also ensure a tenant’s service choices are not limited by any conditions of their tenancy.

However, the standards do not provide adequate guidance for achieving this outcome.

Example: Separation of housing and support and responsibility to report abuse and neglect

The performance indicator for tenancy management simply asserts the requirement to define the roles and responsibilities of SDA and other support providers working with an SDA tenant. There is no additional guidance, such as reference to Quality and Safeguards principles or detailed performance criteria, to help establish the scope of the SDA provider’s tenancy management responsibilities or distinguish these from the responsibilities of other service providers:

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Documentedarrangementsareinplacewitheachparticipantandeachparticipant’s

otherNDISprovidersthatdeliversupportedindependentlivingsupportswithina specialistdisabilityaccommodationdwelling.Ataminimum,thearrangementsshould outlinethepartyorpartiesresponsibleandtheirroles(whereapplicable)

Research by the Welcome Home project has identified some confusion amongst SDA and SIL providers about their tenancy management responsibilities.

This SDA provider explains that, despite working through the SDA Practice Standards, they failed to understand their obligation to establish policies for managing serious incidents in an SDA household, assuming it would be the role of the SIL provider:

“Wewereauditedayearago…Weonlyhadoneareaofnon-compliance,thatwas abuseandneglectbecauseatthatpointwedidn’trealiseitwasourresponsibility,we thoughtitwouldbeonthesupportprovider.”(SDAprovider)

Under the SDA Practice Standards, an SDA provider’s tenancy management obligations include the establishment of policies and procedures to manage potential conflicts in SDA households, SDA tenants’ complaints and the reporting of serious incidents. Confusion amongst service providers about their roles and responsibilities in this performance area may undermine the efficient implementation of policies and procedures designed to protect tenants from harm.

Solution

The SDA Practice Standards should more clearly align an SDA provider’s service obligations with their responsibilities as a registered NDIS provider, including their conditions of registration.

Agreements between SDA and other support service providers should be easy to understand and include performance indicators for support services.

SDA performance indicators for tenancy management should provide examples of mechanisms that an SDA provider can utilise to distinguish service roles and responsibilities and apply these consistently across key policy areas.

Recommendation: The SDA Practice Standards must be updated to provide comprehensive criteria for the separation of housing and support services.

Problem: The SDA Practice Standards use obscure language to describe SDA provider obligations and often fail to provide adequate details about specific terms or concepts.

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The following performance indicators from the SDA Practice Standards do not provide an adequate explanation about the procedures an SDA provider is required to follow.

Example: Tenancy Management

Documentedarrangementsareinplacewitheachparticipantandeachparticipant’s

otherNDISproviders.

The legal status of ‘documented arrangements’ is not defined in this performance indicator. It is unclear whether the term refers to a formal and legally binding agreement such as a ‘collaboration agreement’, or a more flexible and informal arrangement between service providers and an SDA tenant, which a service provider may not be obliged to uphold.

Solution

The SDA Practice Standards should give detailed explanations or provide sector-specific examples of key terms and concepts, e.g. ‘documented arrangements are made in addition to formal agreements… and do/do not have the same status as a legal contract’.

Example: Service Agreements

The SDA Practice Standards state:

Workisundertakenwitheachparticipanttodevelopawrittenserviceagreement

The process of ‘working’ with a participant to ‘develop’ a service agreement refers to an SDA provider’s obligation to ensure appropriate communication methods, such as verbal explanations, are used to explain the terms and conditions of an SDA tenancy.

However, research by the Welcome Home project has revealed confusion amongst SDA providers about whether this performance indicator also implies a process of negotiation between an SDA provider and a participant about the terms and conditions in an SDA service agreement.

Recommendation: Update the SDA Practice Standards to provide plain language and clearly defined key terms, concepts and performance outcomes.

Problem: The human rights of SDA tenants and associated obligations of SDA providers are not clearly identified and defined.

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The primary obligation of SDA providers is to uphold the legal, human and consumer rights of SDA tenants. This is recognised in the SDA Practice Standards performance outcome for Rights and Responsibilities:

Eachparticipant’saccesstospecialistdisabilityaccommodationdwellingsisconsistent

withtheirlegalandhumanrightsandtheyaresupportedtoexerciseinformedchoice andcontrol.

The UN Convention on the Rights of Persons with Disabilities asserts a number of human rights related to independent living. The SDA Practice Standards do not consistently identify these rights or clearly define them as they relate to the delivery of SDA services.

Example: Rights and Responsibilities

Each participant’s autonomy, including their right to privacy, intimacy and sexual expressionisrespected.

This performance indicator clearly identifies the rights of a person with disability to respectfortheir inherentdignity,individualautonomy(Article 3, CRPD) and therighttoprivacy(Article 22, CRPD). The reference to ‘intimacyandsexualexpression’contextualises these rights in terms of how they may manifest in an individual’s home life.

Example: Tenancy Management

In contrast, the right of a person to choose who they live with (Article 19, CRPD) and the right to freedomfromexploitation,violenceandabuse(Article 16, CRPD) are implied in the policy and reporting responsibilities under the tenancy management performance area but are not separately defined as a tenant’s human rights:

Where applicable, policies and procedures are in place about how a provider will declare,advertiseandfillvacanciesinsharedliving,includinghoweachparticipant’s views,preferencesandneedsaredocumentedandtakenintoaccount.

Documentedarrangementsareinplace…forthefollowingmatters:

c) Policies and procedures for responding to violence, abuse, exploitation or conflictinvolvingoneormoreparticipantwhichmayimpactontheconditionof thedwelling;

The right of a person with disability not to be obliged toliveinaparticularlivingarrangement (Article 19, CRPD) is implied in multiple references to a participant’s right to exercise choice and control but is not clearly defined as a tenant’s human right.

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Each participant’s right to exercise choice and control over other NDIS support provisionisnotlimitedbytheirchoiceofspecialistdisabilityaccommodationdwelling.

Other human rights relevant to independent living are not referenced at all in the SDA Practice Standards.

The right of a person with disability to access services “topreventisolationorsegregationfromthe community”(Article 19, CRPD) is not identified in the Practice Standards. Yet this right may be undermined by SDA tenancy conditions that limit the range of support services a tenant can engage to provide them with support in their home. To avoid these kinds of conditions, human rights obligations need to be clearly spelt out in the Practice Standards.

Solution

The SDA Practice Standards should clearly identify and define the human rights of people with disability that relate to the delivery of SDA services. Furthermore:

Individual rights should be clearly identified, with specific reference to Article 19 of the

UNCRPD

Performance indicators should provide clear guidance on how these rights are upheld by the obligations of SDA providers including the implementation of policies and procedures
The obligations of the SDA provider should be clearly distinguished from the rights of SDA tenants
Performance indicators should provide context about how each of these rights may be upheld in an SDA environment

Recommendation: Update the SDA Practice Standards to clearly specify how providers can meet their human rights obligations.

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