Submission 22 — Summer Foundation — Transitional arrangements for the NDIS | External submission

Fall

Summer Foundation Submission to the

Joint Standing Committee on the National Disability Insurance Scheme

Contact: George Taleporos

Policy Manager

Summer Foundation Ltd. | ABN 90 117 719 516 | PO Box 208 Blackburn VIC 3130 | T +61 3 9894 7006 | F +61 3 8456 6325

Building better lives for young people in nursing homes | www.summerfoundation.org.au

EXECUTIVE SUMMARY ………………………………………………………………………………………………………………………………………. 4

INTRODUCTION …………………………………………………………………………………………………………………………………………………… 6

About the Summer Foundation ………………………………………………………………………………………………………………… 6

Young people in aged care in Australia …………………………………………………………………………………………………… 6

Australia’s human rights obligations ………………………………………………………………………………………………………. 6

The context of the Current Submission…………………………………………………………………………………………………… 7

THE BOUNDARIES AND INTERFACE OF NDIS SERVICE PROVISION: THE HEALTH & DISABILITY

INTERFACE AND OTHER SERVICE GAPS ……………………………………………………………………………………………………….. 8

The impact on the health system and potential long-term savings ……………………………………………….. 10

Gaps in Rehabilitation , Housing and Transport …………………………………………………………………………………. 11

Slow stream rehabilitation ………………………………………………………………………………………………………………………………………… 11

Housing ………………………………………………………………………………………………………………………………………………………………………….. 11

The critical role of housing ………………………………………………………………………………………………………………………………………… 12

Progress towards building the SDA housing market …………………………………………………………………………………………… 12

Transport ………………………………………………………………………………………………………………………………………………………………………. 13

Information Linkages and Capacity (ILC) and Local Area Coordination (LAC) …………………………………… 15

ILC …………………………………………………………………………………………………………………………………………………………………………………… 15

LAC ………………………………………………………………………………………………………………………………………………………………………………….. 16

NDIS PLANS ……………………………………………………………………………………………………………………………………………………….. 17

The first plan approach …………………………………………………………………………………………………………………………….. 19

Approaches to assessment and the need for specialists in planning for people with complex needs 20

NDIA’s budget-based approach to planning ………………………………………………………………………………………… 20

Avenues for resolving disagreements about participant supports ………………………………………………… 21

TRANSITIONAL READINESS FOR PARTICIPANTS AND PROVIDERS …………………………………………………….. 22

Participant Readiness ……………………………………………………………………………………………………………………………….. 22

Provider Readiness ……………………………………………………………………………………………………………………………………. 23

RECOMMENDATIONS………………………………………………………………………………………………………………………………………. 25

Remove the bureaucratic hurdles people preventing young from accessing the NDIS ……………. 25

Provide more support to bring young people from aged care into the NDIS faster …………………… 25

Bring forward support for young people in aged care who live in the last rollout sites …………… 25

Stop the pipeline of entry into aged care from the health system ………………………………………………….. 26

Take action to address the broken interface between health and disability ……………………………….. 27

Develop an effective national approach to quality and safeguarding for SDA …………………………….. 27

Commit to a transparent process for SDA Price and Framework reviews. ………………………………….. 28

Invest in building the capacity of people with disabilities to self manage their supports ………… 28

REFERENCES …………………………………………………………………………………………………………………………………………………….. 30

EXECUTIVE SUMMARY

The National Disability Insurance Scheme (NDIS), when designed correctly and implemented effectively will transform the lives of people with disabilities and assist Australia to meet its human rights obligations. By increasing socio economic participation, the scheme will also provide significant improvements to Australia’s economy, raise the shamefully low employment levels of people with disabilities and carers and increase our nation’s GDP. By providing individualised funding and shifting control from service providers to people with disabilities, economic efficiencies will follow, as consumers chase value for money and achieve greater outcomes.

However, during the current transition phase young people in aged care are facing significant barriers accessing the scheme as well as problems developing and implementing their NDIS plans. The bureaucratic processes in the NDIS as well as a lack of service expertise and appropriate housing are preventing hospitals from discharging people with disabilities with complex health needs back into the community.

Preventing new entries to Residential Aged Care (RAC) requires information and education at the coalface of discharge planning, and liaison roles that can oversee smooth transition of supports between sub-acute health and the community. People with complex support needs leaving sub acute services require flexible and responsive supports that can respond to changes in a timely way. Their needs may change rapidly, requiring input from both health and disability providers, especially in the period immediately after discharge.

The lack of suitable housing is a significant barrier to moving young people out of RAC and a major reason why they are remaining in hospital unnecessarily or moving into inappropriate institutionalised settings. The delay in introducing SDA payments, the hold-up in these payments being issued and market uncertainty has meant that very few housing options have been made available. This has meant that funding packages cannot be effectively utilised as the person remains in a nursing home or hospital bed with nowhere else to go.

Young people in aged care and those at risk of entry require a coordinated effort across sectors to meet their needs. It is not always clear which sector should be delivering a particular service. For people in rehabilitation after trauma or injury, the split of responsibilities between systems result in delays in service delivery and an inefficient service response. For younger people in aged care to have good outcomes, a jointly resourced approach across health and disability sectors is more efficient and effective than the current cross referral pathways.

For young people in aged care, who have complex support needs, planning is a difficult process. This is not a group, generally, who can navigate the NDIS pathway independently. There are significant inequities emerging because of the varied skill levels of planners, the amount of advocacy or supports an individual can access to prepare for planning, and the hasty haphazard manner in which plans are being developed.

We need to remember that being forced into aged care is a terrible outcome for young people, their families and friends and for our country. These young people’s emotional, physical and mental health all decline while they live in aged care. As aged care compounds a person’s disability, they are likely to have higher health and support costs when access to the NDIS is delayed. It is a terrible waste of human potential and resources. The NDIS has the potential to solve this problem and the early results from the transition suggests that a lot more needs to address the needs of young people in RAC during this period and beyond.

We need to take action to ensure that the NDIS delivers on its potential to stop young people being forced into aged care.

We need young people in aged care and those at risk of entering, to have an easy pathway into the NDIS, by making this group a designated “program” and bringing forward support for young people in aged care who live in the last rollout sites.

We need to stop the pipeline of entry into aged care with a strategic plan for discharge from hospital to the community through an effective NDIS plan, facilitated by expert designated staff who are responsible to prevent transfers of young people from hospital into aged care.

We need to fix the broken interface between health and disability so people can live healthy lives in the community and to prevent costly hospital admissions. This will require health outreach services that provide 24 hour on call nursing with staff trained to work effectively with people with complex disability and health needs. It will also require nationwide access to slow stream rehabilitation, transitional health services and ongoing support coordination for complex clients with changing needs.

We need to build housing that is accessible, affordable and adaptable to the specific needs of people with complex disabilities. We need to improve accessibility in the mainstream housing market and develop Specialist Disability Accommodation (SDA) that leads to positive outcomes associated with an active and full life in the community. There is a danger that the market will not provide this and unless we have an effective national approach to quality safeguards, market infrastructure and proactive market stewardship as well as clarity with respect to the roles and responsibilities of SDA providers.

We need to build the capacity of people with disabilities with complex needs to make the most of the NDIS. It is critical to develop understanding about how to prepare for planning and how to make informed choices about housing and support. Building capacity of individuals and their families to self manage is essential for the NDIS to maximise value and participant satisfaction.

INTRODUCTION

About the Summer Foundation

The Summer Foundation, established in 2006, is an organisation that works to change human service policies and practices related to young people living in, or at risk of, entering residential aged care (RAC) facilities.

Our Vision is that young people with disability and complex support needs will have inherent value as members of our society, with access to services and housing that supports their health and wellbeing. Our Mission is to stop young people from being forced to live in aged care because there is nowhere else for them.

Young people in aged care in Australia

According to recent Senate Estimates there were 6225 young people in Residential Aged Care (RAC) (Parliament of Australia, Senate Community Affairs Committee, March 2, 2017). Young people with disability living in RAC are one of the most marginalised and isolated groups of people in our society. Fifty three per cent of young people in RAC receive a visit from a friend less than once per year and 82% seldom or never visit their friends (Winkler, Sloan, Callaway, 2007). They generally lead impoverished lives, characterised by loneliness and boredom. They are effectively excluded from society with 45% seldom or never participating in leisure activities in the community (Winkler, Sloan, Callaway, 2007).

Senate Estimates also tell us that on 31 December 2016, there were 374 young people in residential aged care in the National Disability Insurance Scheme with a plan. A total of 2,058 young people in aged care were scheduled to transition into the National Disability Insurance Scheme in the 2016 17 financial year (Parliament of Australia. Social Service Portfolio, December 2, 2016). Therefore, the NDIS is not meeting its own targets with respect to transitioning young people in aged care into the NDIS.

Australia’s human rights obligations

These statistics demonstrate that Australia is failing to meet its obligations as a signatory to the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Article 19 of the United Nations CRPD says that all people with a disability have a right to live in the community. The convention stipulates that people with a disability should have the “opportunity to choose their residence and where and with whom they live on an equal basis with others, and not be obliged to live in particular living arrangements” 9, p. 13 (United Nations Convention on the Rights of Persons with Disabilities, 2007). This convention also states that people with disability should have a “range of in-home, residential and other community support services including personal assistance…to support living and inclusion in the community, and to prevent isolation or segregation from the community”.

The context of the Current Submission

The Summer Foundation is pleased to have the opportunity to contribute to the Productivity Commission’s study into NDIS Costs. Our organisation is well positioned to comment, as we have been heavily involved in working to ensure that the scheme meets the needs of people at risk or currently living in aged care. This work ranges from high-level policy work in relation to the NDIS, sector development in the field of neurological disability, market and technical development in Specialist Disability Accommodation, as well as in-depth research through our partnerships with leading academic institutions including Monash and Latrobe University. We are also active members of the Australian Housing and Urban Research Institute (AHURI).

This submission also brings together expertise from our Ambassadors, Storytellers and our NDIS Connections Workers. The case studies and examples outlined are real people who have had their stories deidentified, unless they were featured in our digital stories where participants have provided their consent to have their stories publicly available on YouTube.

Our Ambassador program provides us with insights that are only possible through our ambassadors’ first-hand experience of living in RAC, or being at risk of entering RAC. Our Ambassadors work in a variety of ways to advocate for young people with disability with high and complex support needs. Some of our ambassadors’ stories have been included here to demonstrate the human impact and explain the difference that the NDIS is making to people’s lives, as well as its shortcomings. Our ambassadors have also worked with us to create digital stories that are available on YouTube and some of these have been linked in our current submission

THE BOUNDARIES AND INTERFACE OF NDIS SERVICE PROVISION: THE HEALTH &

DISABILITY INTERFACE AND OTHER SERVICE GAPS

Young people in aged care and those at risk of entry require access to high levels of both disability and health supports. Currently, while there is still not enough housing to provide an alternative to RAC, access to quality health and disability supports needs to also include that provision in cooperation with the age care sector.

Experience so far for our cohort of entering the NDIS, indicates that the quality of access to supports and services from the NDIS and health systems varies greatly from individual to individual. The reason for this variation is not simply a lack of clarity about whose responsibility it is to provide a particular service, but the lack of real cooperation in jointly addressing a need for someone whose services sits across multiple sectors.

Scarce resources are being wasted chasing the appropriate funder for a particular need, leading to a deterioration in health, unnecessary hospital admissions and costs to the economy.

Young people living inappropriately in residential aged care facilities inherently have complex disability needs and complex health support needs. Although the NDIS Operational Guideline for Supports in the Plan outlines that nursing care, training and supervision is a reasonable and necessary support, our experience is that this vital service has not been included in people’s Plans. This may be for a variety of reasons, including:

the incorrect assumption from the NDIS Planner that community nursing will address these needs; ○ Community nursing was previously HACC funded and we know that this funding for people under 65 with disability was transferred to the NDIS, resulting in many community nursing ceasing services for people under 65.
the incorrect assumption from the GP/family/therapy team that the NDIS does not fund this type of service;

Understandably there is confusion regarding what are reasonable and necessary high care support needs given that people’s health care needs range from monitoring blood pressure, blood sugars and weight, which may be deemed the responsibility of mainstream services; compared to skin integrity checks, tracheostomy tube changes and catheter changes, which are accepted as disability related and therefore reasonable and necessary under the NDIS.

The interface between health and disability is a major area of concern and has posed many problems for our cohort during the transition. The NDIS’ effort at cost shifting is having a serious impact on the health of participants in the scheme. Add to this a lack of knowledge and understanding amongst planners of the NDIS and its Guidelines as well as the changes in mainstream nursing services has resulted in increased hospitalisations for people (due to urinary tract infections or skin breakdown) and others being at risk of remaining in residential aged care facilities. The impact of a broken interface between disability and health can have serious consequences as is demonstrated in Jarrod’s story:

Jarrod had a cerebral hemorrhage in his mid 40’s, resulting in an acquired brain injury, complex disability and clinical care needs. Jarrod’s needs couldn’t be met in the community

and he was discharged from hospital to residential aged care (RAC). The facilities Registered Nurse (RN) oversaw Jarrod’s catheter management and enteral feeding. Personal Care Assistants (PCAs) monitored Jarrod’s, skin integrity, blood pressure and sugars.

Jarrod’s wife successfully submitted an Access Request Form to the NDIA in early 2016 and Jarrod had a planning meeting in May. During this time his wife located an accessible housing opportunity. The first goal in Jarrod’s NDIS plan was to exit RAC and return to live with his wife and children in the community, with appropriate supports from the NDIS.

Jarrod’s NDIS plan did not provide funding for Jarrod’s clinical care. It is likely that the NDIS Planner assumed that Jarrod could access the day-to-day support he needs with feeding and continence, and oversee the management of his skin integrity blood pressure and sugars from health services in the community. Jarrod and his family found that the health system was unable to provide these services. Poor coordination of Jarrod’s personal and clinical care resulted in multiple hospital admissions from preventable conditions during his first three months of community living. On discharge from hospital Jarrod was declined HACC funded community nursing on the basis that he was an NDIS participant. Jarrod’s NDIS Support Coordinator has been forced to use funding allocated for other support areas to purchase services from a private nursing provider.

Jarrod’s situation highlights some of the current problems with the interface between the NDIS and Health.

Individuals with complex disability and clinical care needs generally experience their clinical care needs as part and parcel of their disability. Their ability to exit RAC and live in the community hinges on their access to home based clinical supports.

Jarrod’s interim solution is an unsustainable individual response to a systemic issue. Without a systemic solution, many young people may not be able to exit RAC, and those who do, may find that their community living arrangements are precarious, clouded by the constant threat of their readmission to RAC secure access to clinical care.

Outcomes in the NDIS and health interface can be improved by funding arrangements that ensure all necessary sectors are contributing to service types that bridge systems, and are jointly responsible for achieving outcomes. In the compensable system, where insurance companies are liable for lifetime care costs across all sectors (Health and Disability in particular), then bridging services such as case management do not have artificial splits between systems that create barriers to efficient outcomes.

Health services such as the Austin network in Victoria, have dedicated some of their staff resources to NDIS readiness, and have done internal education and support to their discharge planning teams, so that the NDIS is understood and access requests forms are being submitted in a timely way. However the responsiveness by the NDIA has been poor, with significant delays in getting planning underway, and implementation mostly is still not being achieved within reasonable timeframes.

When the NDIS is slow in processing a young person’s forms, there are unnecessary financial costs on the health system, hospital beds are not available for the critically ill and the hospital has no choice but to move the person into aged care.

Entry to the NDIS and effective planning requires an effective interface across these two sectors as well as one-on-one support and strong advocacy. Additional investment is required to make long term and nationwide repairs.

The impact on the health system and potential long-term savings

Reasonable and necessary support and diverting young people with disabilities away from aged care and into appropriate housing with the right supports in place will also result in cost savings for the health system.

Once in RAC, young people experience deterioration in their health, a loss of skills and their social networks diminish. Preventing new admissions is a much more efficient use of resources than letting young people be admitted to RAC and then moving them out. Most (59%) young people are admitted to an acute or rehabilitation hospital before their first admission to RAC (Winkler, Holgate, Sloan & Callaway, 2012). Preventing new admissions requires investment and involvement from both the health and disability sectors.

Young people in RAC are often highly susceptible to secondary conditions. These secondary medical conditions include pressure areas (31%), contractures (31%), urinary tract infections (23%) and chest infections or pneumonia (18%). Periodic admissions to acute health services are common – 42% of young people in RAC are admitted to an acute hospital each year, with some people experiencing multiple admissions (Winkler, Holgate, Sloan & Callaway, 2012).

Peter’s story demonstrates the serious impact that being forced into a nursing home can have on an individual’s health:

Peter has a degenerative neurological condition. His life in a nursing home compounds the effects of his disease and corrodes any hope he has of regaining a more normal life. In the 5 years he has lived in the nursing home his health has deteriorated living him in pain and bedridden

Recently he was admitted to hospital with health problems exacerbated by inactivity resulting in an extended stay. Nursing homes rarely have active therapy programs or rehabilitation and his well-being has suffered the affects of little movement and poor quality heath support. He came to the conclusion that he was actually more content in a clinical hospital environment than returning to his life in the nursing home. At least in the hospital there was an effort to keep health a priority. His emotional health is deteriorating each day as he considers his long-term prospects after he gets discharged and sent back to the nursing home.

Gaps in Rehabilitation , Housing and Transport

Slow stream rehabilitation Access to slow stream rehabilitation is a critical determinant of people with acquired disabilities. More NDIS participants regaining functional capacity reduces the long term costs of the NDIS.

Well planned, episodic and long term rehabilitation in a person’s home and community is now recognised as best practice and the appropriate model for this is delivered through a combined health and disability framework. We also have evidence that extended rehabilitation is associated with measurable functional gains and a decrease in support costs.

It is a serious concern that neither the health system nor the NDIS will be responsible for providing this service, particularly now with the progressive withdrawal of the ABI: Slow to Recover program in Victoria. Under the NDIS, we are seeing that the ‘acute’ phase of someone’s rehabilitation, which is provided by Health, is completed, the provision of essential rehabilitative supports is not being provided in the community.

In June 2015, the Senate Inquiry Into The Adequacy Of Existing Residential Care Arrangements

Available For Young People With Severe Physical, Mental Or Intellectual Disabilities In Australia

recommended that the Council of Australian Governments (COAG) develop and implement a national rehabilitation strategy including a framework for the delivery of slow stream rehabilitation in all jurisdictions. In November 2016, the Australian government response to that recommendation was that it was “Not supported”.

Housing

People with complex and high-level physical disabilities are forced to live in aged care because they have limited access to necessary support and limited suitable housing options. The introduction of the NDIS will provide the support needed to live independently and for some it will also provide funding through Specialist Disability Accommodation (SDA) payments, to meet the cost of accessible housing. However, Australia’s current housing market will not come close to meeting the demand for such housing unless Governments take action to stimulate supply. At recent Senate Estimates hearings in March 2017 it was reported that hardly any SDA payments have been made and this reflects the lack of SDA housing options in the community (Parliament of Australia, Senate Community Affairs Committee, March 2, 2017).

Peter’s story shows how many people are stuck in aged care because of the lack of availability of accessible and affordable housing:

Peter who has a neurological condition, registered as a NDIS participant in late 2016. Since then he has been able to secure 50 hours of physical therapy per year, but without a home environment where he can utilise all the new skills he learns, it is unlikely the benefits can be built on in any meaningful way. The process with his planner for the NIDS has not been smooth either. In fact, he believes the planner had little training or experience, and was ill equipped to understand his complex health needs.

Having a secure home environment where he can express himself and build a life is paramount for his emotional and physical health. Life in a nursing home is making a bad situation far worse. He is ready and willing to take on the challenge of a more independent

life but the longer he continues to have everything done for him in the nursing home, the quicker he will lose the vital skills he needs to pursue a quality life.

We need a range of options to fill the gap in accessible and affordable housing for people with disabilities including models that enable people to live with their partner and/or children. Many (46%) young people in RAC are in partner relationships and 27% are parents of school aged children 2. Australia desperately needs a to create more housing that is both accessible and affordable. Rather than continuing to build segregated specialist housing, the housing needs of people with disability need to be incorporated into mainstream housing strategy.

The critical role of housing Securing positive outcomes for both people with disability, families and carers will depend on a range of supports, including access to well located, secure and affordable housing. Housing is a critical enabler of employment for people with disability. Without access to housing located near employment, people with disability are unlikely to achieve the employment gains modeled by the Productivity commission. Many people with disability are unable to use private transportation, making access to public transport a critical enabler of employment. The inability to find affordable housing that provides access to employment will be an ongoing barrier to increasing employment rates.

Access to housing is an even more critical enabler of carers returning to work. Access to housing enables carers to return to work because adult children with disabilities are able to leave home and be supported to live in the community. Without access to housing, people with disability may have the personal care support to move out of home but they will not have the access to housing that is critical to leaving the family home.

Without access to well located, secure and affordable housing, the NDIS’ predicted GDP gains are unlikely to be achieved.

Progress towards building the SDA housing market The vision for SDA is described by the National Disability Insurance Agency (NDIA) as a vibrant, multifaceted, open and competitive marketplace operating sustainably to meet the housing needs of NDIS participants with very high needs who require a specialist housing solution.

The Summer Foundation is taking action by developing innovative housing and support models to demonstrate new living options for people with high-level physical disabilities. Our aim is to begin addressing the unmet need for accessible housing and to demonstrate design features for people with complex needs that can be replicated and improved upon. These projects bring together the latest in technology and adaptable design in conjunction with innovative approaches to support, and the use of assistive technology support people with significant disabilities to live with greater independence.

The life changing impact of access to accessible and affordable housing is demonstrated through David’s story, where timely access enabled him to be diverted from entering a nursing home:

In November 2015, David acquired a brain injury that would dramatically and permanently change the direction of his life and that of his family. Devoted and persistent advocacy from his wife, combined with fortunate timing has prevented this man from falling through the

cracks and ending up in a nursing home. He lived in an NDIS site at the time of his accident and while he was receiving inpatient rehabilitation, a rare supported housing opportunity emerged. The team supporting his rehabilitation worked with the housing provider, support service provider and the NDIS to implement a transition plan. The advocacy required to co-ordinate his move to a new supported home was extensive, and largely driven by his wife. Such a great outcome is rare, and aside from the heavy-duty advocacy required to achieve this, a pathway to a new permanent home from hospital is exactly how it should be in an ideal system. His wife reflects, “It’s such a relief, its such a lovely lovely outcome for all of us…I know it would have been hard for our children to come and visit David in a nursing home, that was never going to be OK.”

Summer Foundation has also been undertaking sector development over the past 12 months to lay the foundations for a vibrant SDA market. In the first year of this work achievements have included:

Clarity about the Rules and Pricing. The SDA Rule was made in early March 2017 and provides the legislative foundation of SDA. The Rule was accompanied by the Price Guide, Terms of Business and Guide to Suitability for providers. These documents provide many of the foundational elements for the SDA policy.
Engaged stakeholders. The first year of SDA operation has seen a wide variety of stakeholders engaged in the SDA policy. Not only have organisations with a track record been engaged, but also many new organisations are considering providing housing to people with disability for the first time. This includes the creation of new entities to deliver SDA, as well private developers and financiers.
The emergence of an SDA pipeline. Housing supply will always be slow to respond to new pricing. The first year of SDA has seen some new investment in housing for people with disability, albeit small scale and difficult to quantify at a national level.
Sector development underway. The Australian Government has begun investments to prepare the NDIS housing market through a trial platform to connect participants with SDA and providers, support for family run SDA projects, a demand study and engagement with financial institutions on home ownership products utilising SDA.
SDA funds committed in participant plans. Over $30 million of SDA funds have been committed in NDIS participant plans at the end of March 2017. At the end of December 2016, over 3,200 NDIS participants had SDA funds in their plans.

The progress at the end of the first year provides confidence that the market can see the potential for a scalable and financially sustainable approach to delivering SDA. However, there are still serious issues with respect to the broader policy framework that need to be addressed (See Recommendations).

Transport

Access to affordable transport is another significant gap, particularly for people living in regional and remote areas. People in metropolitan areas also face difficulties accessing transport that meets their needs and that they can afford. Our connections workers have observed that if a person is funded to undertake new activities in their NDIS plan, there is usually no provision for transport and no allocated funding. The result is that people are not able to undertake the activities that are necessary to improve their quality of life and they continue to be isolated. For young people in aged

care, this means that they continue to be stuck in the nursing home and unable to achieve the goals identified in their plan.

INFORMATION LINKAGES AND CAPACITY (ILC) AND LOCAL AREA COORDINATION

(LAC)

ILC

When the transition to the NDIS commenced we were concerned to see that ILC funding was not used as it was intended by the Productivity Commission. The key role of capacity building for people with disability and responding to the needs of Tier 2 had been ignored. Instead, ILC funding was being used to fund planning for people in the roll-out zones of the scheme and nothing had been done to achieve the objective ILC until very recently.

However, in May 2017, we were pleased to receive funding for ILC projects to address the problem of young people living in RAC.

The Hospital NDIS Readiness Project is providing resources for the process of leaving hospital, and reflect the recently agreed NDIS mainstream Working Arrangements. In the process we are developing digital stories with young people with lived experience of hospital discharge. A “Discharge Planning Practice Adviser” will be provided to the largest LHNs in NSW, Victoria, Queensland and South Australia to develop practice materials and train their staff on working with this cohort. These materials will be available to all 146 Local Hospital Networks (LHNs) through existing distribution channels, a symposium held in each jurisdiction and a national summit. The desired outcome of this project is assist more young people with complex needs in the health system (hospitals and sub-acute rehabilitation services) to live an ordinary life back in the community, by developing the health system’s capacity.

The Aged Care System NDIS Readiness Project is targeting Aged Care Assessment Team (ACAT) and

RAC providers to raise awareness amongst the aged care system about the needs of young people with disabilities and how to best support them to transition to community living. We are developing practical resources for RAC and ACAT providers. These resources provide information about how to best support young people currently in RAC, or at risk of entry. We are undertaking active outreach to RAC and ACAT services through workshops and training using the resources developed. We are focusing on areas with large numbers of young people in RAC. We are working in a place-based way to establish local service collaborations to reduce the number of young people entering aged care and to enable young people to leave aged care and live more integrated lives in their communities.

While these projects demonstrate a commitment by the NDIS to address the transition and interface issues facing young people with severe and complex disabilities, their remains an urgent need to provide outreach across Australia to identify young people in aged care, and engage each of them in the opportunity to become an NDIS participant. Coordinated services are needed to help them to understand and prepare for a planning meeting, as most cannot do this independently. For those who are currently in RAC, timeliness is important, as the longer they remain in RAC, without any additional supports, the more resources and effort are going to be required to enable them to return to active community participation. We understand that specialist teams within the NDIS have been set up to undertake this work and look forward to seeing some positive results.

LAC

We have not seen any evidence that LACs are effective in their role connecting young people in RAC to the NDIS. We understand that, as a result of their complex needs, young people in RAC are largely the responsibility of NDIS planners. However, we would like to see young people in RAC benefit from the local knowledge that Local Area Coordinators can potentially provide as well as targets for successful outreach to this cohort.

NDIS PLANS

A 17-year-old young man acquired a severe brain injury which resulted in extreme functional impairment as he lost the ability to move independently or speak verbally. His mother campaigned tirelessly for the introduction of the NDIS. Living in the Barwon NDIS trial site meant the young man would be an early NDIS participant. The mother describes their transition into the NDIS as ‘bumpy’. She anticipated the transition would involve a light review of her son’s state funded plan but… “All that we had learned, all the blood sweat and tears that had gone into my son’s plan had fallen by the wayside, it was heartbreaking.” They had to begin the process of rebuilding his plan, brick by brick. This process took a long time with many reviews and changes to the plan before it was finalised. “If you do get a plan and you’re not happy with it, have the courage to hand it back.” Vanda engaged the support of an advocate to help achieve her son’s plan. “We are now able to start dreaming and planning as a family again.”

Click here to see the family’s digital story which describes this family’s experience with the NDIS and planning

The pathway for planning under the roll-out phase is unclear, inconsistent and inaccessible to most young people in aged care. The split between the access responsibility and the regional planning process makes it difficult for someone with a complex communication or cognitive disability to get any sense of continuity, as they get passed along the system between different people. There is inconsistency in decision-making with respect to who goes into the different planning streams. Commonly we are seeing people with complex needs in the LAC planning stream, when they should be part of the NDIS delivered “complex planning stream”.

A lack of preparation support for planning means significant gaps have emerged, because individuals are unable to articulate their complete needs and goals as is required for a good outcome from planning. The important work of supporting people with NDIS preplanning and through the planning process is not being funded in the national roll out, and services such as case management that could have assisted are being de-funded prematurely as the NDIS rolls out.

The Summer Foundation stepped in for a limited period that has now come to an end, by providing connections assistance and some preplanning support for young people in aged care in a range of roll-out sites. This work has been made more difficult without the necessary information from government about the location younger people in RAC. There have also been problems in having our pre-planning support maximised with instances of pre-planning documents being completed and provided to NDIS but not read by the allocated planner.

Once in the planning process, wide variation in the skills and experience levels of planners has meant some plans have been woefully inadequate. However, with good support, and advocacy, and a planner who understands the person and their condition, people have been able to achieve excellent plans. We have found that the best outcomes occur when the planner is prepared to take the necessary time needed to understand person, as well as seeking out information from family members and practitioners who know the person well.

For plans to be effective and well-informed, we recommend that greater effort is placed on engaging YPIRAC’s ‘communities of support’ in the planning process as currently many families and friends feel peripheral to the process. Finding an effective way of including them would in the longer term save the NDIA money.

The following story demonstrates the importance of family involvement with planning, particularly with people who have cognitive and communication impairments:

A mother of an adult daughter who has Multiple Sclerosis is a primary advocate for her daughter. The daughter has lived in a nursing home for over seven years. Even though the nursing home is not conducive to maintaining relationships, the daughter tries her best to stay engaged with her four children and two grandchildren.

It was by chance that the mother found out about the NDIS when a visit to see her daughter coincided with the Summer Foundation also visiting the daughter. The mother wasn’t even aware that her daughter was living in an NDIS trial site. She often finds herself contemplating that fortuitous meeting, “If we hadn’t become connected to the Summer Foundation, we wouldn’t have known anything about the NDIS!”

The mother immediately registered her daughter with the NDIS and experienced wonderful support from the planner and local area coordinator assigned to her. The planner was a trained occupational therapist and understood the complexity of her daughters disability. The mother says, “The planner became our personal contact within the department and we could ring at anytime and they would provide any assistance required.”

Once the NDIS trial period had finished, the daughter’s plan became due for review. The mother and and daughter were confronted by the reality that the new planner was hopelessly inexperienced, “This planner did not have a disability experience background and had no idea of the philosophy behind the NDIS and how it was meant to work out for the most important person – the client. I had to tell her how this was meant to work and what my daughters requirements were and how to actually bring that to being!”

The mothers experience with the NDIS had deteriorated by the third plan review …“No actual review took place and her daughter received a ‘form’ letter advising that her plan would continue ‘as was’ for the next 12 months and if she required any changes to apply for an internal plan review within 3 months of receiving this letter! This letter was not even signed!”

One of the most significant challenges for the daughter throughout her NDIS experience was when she was initially asked about the goals she would like her NDIS plan to support her to achieve. Having been institutionalised so long, the daughter had lost the capacity to think and plan into the future. Now, with encouragement, she is able consider a more hopeful future and can to actively engage in the process of planning for this future.

Regardless of the obstacles, the mother still has high hopes for the NDIS, “This program could be unbelievable if done correctly and it would provide us with a world class initiative.”

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Additional consideration also needs to be in return to exploring more meaningful social and economic integration for people with disabilities. Sadly much of the one to one support provision we see being provided results in increased community presence and not true participation for its

recipients. Employment and volunteer opportunities are also not being explored at present for this cohort. Given the opportunity that employment would bring to improve quality of life and deliver socio-economic outcomes, this is disappointing and requires further effort and attention.

Planners will always be focused on achieving outcomes for participants. For people with complex needs, particularly those who have had a history of institutionalisation, outcomes are likely to be slow, and unlikely to be smooth, so reviewing plans process needs to account for those factors.

The first plan approach

The first plan approach has been adopted as a way of increasing the pace of the rollout. Rather than a thoughtful and in-depth approach to planning, this approach has involved planning over the phone and in most cases the existing state-based funding allocation is rolled over to form the participant’ s first NDIS plan. This results in particularly poor outcomes for young people in RAC. For example, Enhancement Packages initially provided under the Young People In Residential Aged Care (YPIRAC) initiative were recently capped at around $15,000. The work of the Summer Foundations NDIS Connections Officers has found that around 75% of YPIRAC in the trial sites had no prior relationship with the disability system. We are aware that many of the young people we have assisted to connect to the NDIS have plans with a monetary value of between $4,000 and $10,000, much of which may be inflexibly allocated for Support Coordination.

The first NDIS plan for many young people currently in aged care needs to include a Exploring Housing Options Package. This will give the participant 12 months to work out their housing goals and identify appropriate community options. This Housing Options Package funds a skilled practitioner to work through the questions listed above, as well as purchasing of specialist assessments from professionals such as an Occupational Therapist

With the first year of the NDIS plan taken up with these questions, it is not until the second year plan when the participant has the funding to approach the market and find their option. It can then take up to 24 months for a housing provider to build the required housing. This journey is three years from getting into the NDIS to leaving aged care for some young people. Three years is far too long for many young people with disabilities in aged care, particularly for those who have to wait until 2019 for the NDIS to reach their local area. Bringing forward the housing options package to all young people currently in aged care is one way to address the long wait.

We understand that there is some merit in a “first plan’’ approach for people with acquired disability, especially as they initially transfer from the sub-acute system in health to the community. This approach has been adopted in Victoria in the ABI-STR program, and recognises that functional capacity does not easily transfer between locations, and that goals can change rapidly according to the environment.

However, those first plans need to recognise that plan reviews will often need to be done after three or six months, and that consequent plans may be quite different in their make up and the resource required to achieve new goals.

We are also concerned that the ‘First Plan’ approach goes against the principle of ‘person centeredness and choice and control’. We understand this is a pragmatic solution by the NDIA to getting as many people signed up to the NDIS in the shortest time possible but we don’t support the process that compromises the underpinning principles of the scheme.

A member of our Connections Team observed that:

Part of developing people with disabilities’ skills and independence is familiarising them with the market economy and their active role in it. They need to experience being consumers of services and not passive recipient of them. This is about setting expectations. Sadly if people’s initial experience of the NDIS is receiving an ‘off the shelf’ – reference plans – then the promise of the NDIS for an individualised response is severely compromised. The NDIS is a once in a lifetime opportunity to reform the way in which disability services are provided and we have a role in ensuring that the NDIA do not renege on this. The NDIS must invest more time and resources into assisting people to develop their plans from when they enter the scheme so we can deliver something better than the broken system that we want to leave behind.

Approaches to assessment and the need for specialists in planning for people with complex needs

For young people in aged care, who have complex support needs, reference tools that try to average out plan costs are unlikely to be valid. There is a wide variation in the presentation and life circumstances that means tailoring an appropriate plan will require flexibility and creativity as well as expert knowledge and medical expertise. Some of the needs of young people in aged care, particularly the cognitive, communication or behavioural dimensions stretch the bounds of knowledge and skills of regular planners and assessors.

A more appropriate approach is to recognise that the generic pathway to services through planning needs to be replaced by a specialist stream, which can provide the specialised and intensive assessment and planning that is needed by this cohort. This would avoid the need to continually appeal and review plans that are inadequate or do not reflect the complexity and high needs of the individual.

We recommend creating team structures that support planners working with those with complex needs, that can be robust over time, and maintain collective knowledge about assessment processes as team membership changes, is an avenue to retain and refine ‘active’ assessment processes and tools.

A member of the Summer Foundation connections team observed:

The NDIS relies heavily on Allied Health Professionals to Assess NDIS participants’ needs. In general the assessment tools used by these professionals are valid and reliable. However, they tend to be only partial as it is the NDIS who dictates what needs to be assessed. OT’s for example, are frequently asked to assess a person’s equipment or technology needs but no time or resources are channelled into evaluating people’s existing or potential skills levels. Opportunities to do what the NDIS originally set out to do, namely build individuals capacity and increase independence are therefore frequently missed.

NDIA’s budget-based approach to planning

There are emerging problems in the interpretation of the price guide, as the language used starts to influence the way that services are requested. When the only way to get funding for goals is to ensure they are matched with the price guide, we see missed opportunities to provide valuable support that will reduce long term costs.

Our connections workers have observed that budget-based approaches to planning have reduced planning to discussions about ‘fundable’ items rather than goals and desired outcomes. This is changing the framework from a person-driven, whole of life approach to a much more pragmatic discussion about quickly getting a plan completed. It has meant that many plans no longer are provided in draft form prior to being locked in, and when they are not adequate, require formal appeals or plan review requests.

Avenues for resolving disagreements about participant supports

It is important that there are cost-effective and easily accessible processes in place for resolving disputes and complaints as well as appealing decisions made by the NDIA. For people with communication difficulties and intellectual impairments, access to advocacy will be critically important for there to be a level playing field. In fact, timely and free access to advocacy is required by all participants of the scheme.

Legal advocacy will be critically important in circumstances when complaints escalate to the Administrative Appeals Tribunal and all efforts should be made to resolve complaints without the need for legal representation.

When commenting on the NDIA’s approach to resolving disagreements, a member of our Connections Team reported that:

The process for appealing a rejection of NDIS eligibility has many holes in it. For example, the rejection letter that a gentleman we supported to apply for the NDIS recently received had no date on it, rather important given that people are given a set amount of time to appeal the process. It also instructed him to phone or email the NDIA to start the appeals process – neither of which he had the skills or resources (access to mobile phone or computer) to do, effectively excluding him from the appeals process.

TRANSITIONAL READINESS FOR PARTICIPANTS AND PROVIDERS

Participant Readiness

Engagement with the NDIS process relies upon an individual having a particular level of knowledge, experience and agency. Indeed the success of the NDIS is based upon ‘assumed capacity’ or the implicit belief that all prospective NDIS participants either possess these attributes or will be assisted to possess them (although by whom is still not clear). Sadly this is not the case for many young people in aged care whose knowledge, experience and agency are frequently compromised by their significant impairments, social isolation, lack of skills and knowledge, low expectations or loss of hope. Tackling these ‘disadvantages’ takes time and often skilled, assistance is needed if people with complex needs are to engage with the NDIS process in anything other than a tokenistic way.

The current administration of the NDIS creates a high barrier for participation by individuals with complex needs. Young people in RAC typically have few informal supports and many have cognitive impairment. Most don’t have ready access to a computer and/or are not able to navigate the Internet, both of which are required to activate plans and to find and negotiate supports with providers. This is demonstrated in Martin’s story:

Martin is a man in his early 50s with a lifelong disability who was permanently admitted to residential aged care (RAC) in 2012. Martin attended a special school where expectations were low and, despite a formidable mind, has poor literacy skills.

Martin lives on Disability Support Pension. His basic daily fee in RAC is 85% of his basic Pension. With the money left over each fortnight he struggles to cover his personal expenses. Martin can’t afford a mobile phone contract that would provide him with with a smartphone and Internet access.

When Martin got his NDIS plan he had no idea how to activate it. He was frustrated to learn from his Support Coordinator that he needed to set up a myGov account to access the NDIS Portal. Martin has never used the Internet or email, and his RAC provider has refused to allow him to access their WiFi to build his capacity in this area. Martin feels disempowered by his total reliance on his Support Coordinator to manage all aspects his NIDS plan. A situation that he feels echo’s his lack of control over any aspect of his life in RAC.

Various organisations are running information sessions for potential NDIS participants and their families ahead of rollout, providing an overview of the Scheme eligibility requirements and jurisdiction in an attempt to build their capacity to interact with the scheme. However, young people in RAC and their families, most of whom are unaware of the Scheme and their eligibility, often find it difficult to attend face-to-face sessions. More accessible and flexible approaches to delivering information and building the capacity of people with disabilities and their families are desperately needed.

Provider Readiness

Provider readiness is essential to enable young people with severe and complex disabilities to live a good life in the community. This includes a workforce with the experience, skills and attitudes as well as community health services that are responsive and accessible to people with high support needs. Health outreach services that combine direct care with a 24-hour on-call service are needed for people in the target group who require intermittent nursing care.

A pilot program jointly supported by Health and NDIA based on the Alfred Mobile Assessment and Treatment Service (MATS) program provides an evidence base for a model of community based health support for people with disability with high and complex needs to be rolled out across Australia. This pilot is likely to demonstrate cost efficiencies for both Health and the NDIA.

A major area of concern for Summer Foundation is the lack of SDA readiness, which is reflected in the lack of appropriate housing for people with complex needs.

Organisations and investors wanting to provide housing in the NDIS are currently facing serious issues, particularly with respect to quality and safeguarding, that are holding them back from building housing for younger people in aged care.

Firstly, NDIS is a national initiative, however disability housing requirements vary by state. Designing specialist housing is a small scale and intensive activity – navigating a maze of different regulations and redesigning housing models to meet each state’s requirements drives up the cost of housing. National variation also leads to inequality of housing options for people with disability across the country. The NDIS was intended to overcome these inter-state inequalities where some people with disability have access to housing options by virtue of their state of residency that are not available for people with disability in other states.

Secondly, State Government housing policies are overly restrictive and undermine choice and control; and community integration. Many State Government regulations for disability housing were designed decades prior to the NDIS. They focus on protecting people with disability against all risks at the expense of the core values of the NDIS, including restricting choice and control, autonomy and community participation. Requirements in some states could prevent people with disability from living in two-storey buildings, and require fire sprinklers to be installed throughout a home. This makes a person’s house feel like an hospital, rather than a home and doesn’t take into account the many other strategies that mitigate fire risk in apartment buildings.

Thirdly, specialist housing requirements remain unclear, and risk of misinterpretation to providers, including people with disability trying to enter home ownership. NDIS housing needs to comply not only with general state building requirements but also with special disability safeguards that are additional to normal buildings and therefore rarely known to builders. These requirements are poorly communicated to the market. As a result community housing providers and people with disability are currently building housing that could be non-compliant with the State’s requirements and therefore illegal to use for disability housing.

We are also concerned that the National Disability Insurance Agency is withholding SDA payments until each state makes its decisions around quality and safeguards. Current SDA providers housing people with disability are not being paid by the NDIS for this service. This is due to the NDIA’s

decision to prevent these providers from claiming any payments until each State establishes their quality and safeguards requirements. This uncertainty is having a serious impact on the sustainability of current SDA housing and is holding up future projects.

Finally, SDA readiness and choice and control within the SDA market is also being jeopardised by the SDA rules that require planners to allocate an in-kind SDA option, that is, government run housing in favour of other options that may be available in the market. This will limit market development and discourage investment in new and innovative housing options. It also reduces choice for NDIS participants. The SDA rules that providers must bear the full cost of vacancies, while appropriate in larger markets, will be problematic in the market such as those in regional/remote locations. In these locations the likely to see severe capital and borrowing restrictions because the risks will be seen as too high.

RECOMMENDATIONS

Below are a range of actions and strategies that are required to address the issues that have arisen during the transition to the NDIS. Some of these are underway as a result of recent ILC grants and Senator Reynolds’s five-point plan (SQ17-000297) targeting improved outcomes for young people in RAC.

Remove the bureaucratic hurdles people preventing young from accessing the NDIS

The Commonwealth should designate being in residential aged care a program that makes these young people automatically meet the NDIS requirements. The Commonwealth should write to the NDIA and direct them to add aged care to the list of 75 programs across Australia that are listed as giving automatic entry to the NDIS. Should any young people not meet the access requirements, the NDIS retains the power to revoke access to the NDIS.

Removing bureaucratic hurdles for entry into the NDIS will result in cost savings by reducing the need for detailed access assessments.

The NDIA should update its training to NDIS planners to ensure that that all young people in aged care coming into the NDIS have the opportunity to leave aged care. The NDIA’s policy is that all young people should be asked whether they wish to consider leaving aged care and the NDIA should automatically include a ‘Housing Options Package’ in their plan. This is not happening on the ground and requires more training and quality assurance reviews by NDIA to ensure it is being operationalised.

Provide more support to bring young people from aged care into the NDIS faster

Bringing young people in aged care into the NDIS faster will have long-term social and economic benefits because leaving aged care or being diverted away from aged care is associated with positive health outcomes, facilitate rehabilitation and reduces the likelihood of institutionalisation.

While we are pleased with the recent announcement that the NDIA have established dedicated teams who are responsible for making early contact with people under 65 in residential aged care to arrange face-to-face access requests a priority, we need evidence of the results that this is producing.

The NDIS should continue to report publicly on the number of young people in aged care who have become eligible participants with funding plans, and the number of young people who have not yet been registered with the Scheme. This should be, reported quarterly and broken down by NDIS site

Bring forward support for young people in aged care who live in the last rollout sites

The Commonwealth should bring forward the NDIS ‘Housing Options Package’ funding for all young people in aged care. This would fund young people in aged care to undertake all the preparations to leave aged care so their first NDIA plan is the funding to leave aged care, not just to develop a plan to leave. These young people can work through their complex housing and support needs before they get into the NDIS. At their first NDIS planning meeting they will know exactly what support they need to leave their aged care facility straight away. The Summer Foundation estimates it would cost around $8.5m (plus program management costs) to deliver.

This effectively brings forward the investment in participants to develop their housing options, which the NDIA would have paid for once the participant is in the NDIS. This would transform the lives of hundreds of young people in aged care across Australia, allowing them to most back to the community much faster.

The Commonwealth and States could also consider amending the ‘Facilitating Participants Plans’ Rule to allow a young person at serious risk of aged care entry to become an NDIS Participant immediately, allowing people who do not live in a location where the NDIS has Officially begun to submit an out of area request.

Stop the pipeline of entry into aged care from the health system

The NDIS and health systems need to work more closely together to ensure that when a young person is ready to leave hospital they can return to the community as quickly as possible, rather than being discharged into aged care.

Diverting young people away from aged care and back into the community faster will result in positive health outcomes and long-term savings to the NDIS as the physical and mental deterioration associated with aged care admission will be prevented.

The State and Commonwealth should declare fixing the hospital discharge pathway with the NDIS a strategic priority for 2017. This would involve the following actions:

The Disability Reform Council to establish a group of experts that reports back with a strategic plan to addressing this the health-disability interface, including discharge planning, access to slow stream rehabilitation and clinical services in the community.
Develop working arrangements between the NDIA and each hospital and Aged Care Assessment Team to ensure that young people in hospital are ready for discharge are immediately provided with an NDIS plan to return to the community, and not discharged into aged care. This must include consideration of whether an additional discharge planning role is needed to make sure young people in hospital do not fall through the cracks or suffer from blame and cost shifting between NDIA and hospitals. This role would facilitate discharge planning by exploring discharge options and coordinating supports, home modifications and equipment as early as possible in the hospital stay. While the Summer Foundation was funded to pursue this outcome, unless the funding is extended beyond the 12 months, the benefits will be limited. If the evaluation of the project indicates that the approach is producing the necessary results, the funding should be extended so that it can be rolled out across country.
The NDIA must review its internal access request and planning processes to ensure that these requests are processed quickly, particularly when individuals are stuck in hospital or at risk of entering aged care.
The State and Commonwealth Governments must ensure that young people in hospital at risk of aged care become participants immediately by amending the ‘Facilitating Participants Plans’ Rule and associated ‘phasing schedule’ for the NDIS to allow immediate access.

The NDIA and the Department of Health should report publicly on the number of young people who have entered aged care in sites where the NDIS is operating and this should be regularly considered by the Disability Reform Council as part of the NDIS performance framework.

Take action to address the broken interface between health and disability

Investment is needed in a range of initiatives and programs that address the broken interface between health and disability and reduce costs to the NDIS and the health system.

Example of worthwhile initiatives include:

Nationwide outcomes focused workshops involving health (acute and rehabilitation), Aged Care Assessment Teams, NDIA and disability service providers to understand and address challenges and barriers to returning people with high and complex support needs to community living, and to clarify and identify common goals, and develop outcome measures and potential solutions.
Slow stream rehabilitation and transitional health services across Australia including outreach to regional and rural areas. This will support people with severe brain injuries to improve their functional abilities and an increase their socio-economic participation thereby decreasing costs to the NDIS.
Health outreach services that combine direct care with a 24-hour on-call service are required for people in the target group who require intermittent nursing care. These services work with the individual, their support network and doctors to develop action plans to monitor and address predictable medical conditions (e.g. recurrent urinary tract or chest infections, epilepsy and pressure areas). These plans would enable support staff to proactively identify early warning signs and initiate appropriate intervention. Proactive health planning will reduce the incidence of secondary complications and acute hospital admissions.
Proactive, effective and ongoing support coordination should be provided when required to respond to complex and changing needs. For people with degenerative disorders (e.g. multiple sclerosis, Huntington’s disease and motor neuron disease) living in the community ongoing support coordination needs to be available to facilitate a rapid response.

Develop an effective national approach to quality and safeguarding for SDA

An effective national approach to quality and safeguarding requires a national framework that is coherent and outcomes focused. An inconsistent and disjointed approach to quality and safeguarding will hamper the market and reduce client choice and control.

key principles that should underline and quality and safeguarding framework for the future SDA market. These principles are:

Mainstream regulation and safeguards are accessible and applicable to people with disabilities. People with disability should be adequately protected like all Australians through the Building Code of Australia and state tenancy laws. Additional regulations should be provided when existing mainstream safeguards are inadequate. For example, the

protections in the Residential Tenancies Act in Victoria which currently excludes residential disability services, should be afforded to all Victorians. Mainstream legislation should be updated to account for SDA.

Capacity building is at the centre of safeguarding. People with disabilities should be supported to build their capacity to make informed decisions and achieve their tenancy rights and responsibilities. Safeguards should support informed decision-making through information resources, peer support, training resources, and access to advocacy.
Innovation and investment is promoted while maintaining safety standards. Regulation should be reasonable and necessary for safety while maximising investment in new innovative housing in the community. For example, a regulation which requires housing to be on the ground floor will prevent innovative developments in apartment style living. Given that “no one was ever regulated to excellence” regulation should be in place where it is necessary and pulled back where it risks damaging the market and reducing consumer choice.
The diverse needs of tenants are recognised and responded to. Safeguarding should recognise the diversity of the cohort that will be accessing SDA payments and respond accordingly with the necessary support and safeguards where needed. Regulation does not respond well to diversity so individualised safeguards and capacity building should be explored first to safeguard participants.
Roles and responsibilities are clearly defined. There will be a range of players responsible for the implementation of SDA including housing providers, support providers, tenancy managers, support coordinators and investors. Obligations and responsibilities with respect to compliance with rules and regulations need to be clearly and appropriately defined and assigned.
Complaints are welcomed and easy to make and disputes are easily resolved. Complaints are an opportunity to improve the quality of SDA and must be readily accessible to all tenants. Complaint mechanisms must be easily accessible, free and non-litigious to improve outcomes in the long run.

Commit to a transparent process for SDA Price and Framework reviews.

Investments in SDA housing are asset-specific and made over a horizon to 20-40 years. The Disability Reform Council (DRC) agreed that prices would be reviewed every five years. The NDIA has not provided any further information about how the review will occur. Financial institutions and SDA providers require certainty on the approach to reviewing SDA pricing in order to make these long term investments.

NDIA and DRC should provide the sector guidance on the Price and Framework reviews, including: Terms of Reference; timing and methodology for the review; approach to grandfathering; who will undertake the reviews; and opportunities for sector engagement.

Invest in building the capacity of people with disabilities to self manage their supports

Participants need to be supported to build their capacity to self direct their supports. The NDIA should increase investment in training staff, outsourced planners and LACs to provide information

and support around self-direction. Information and support with respect to self-direction should also be available on the NDIA website in arranging formats including easy to follow video instructions. Digital stories around self-direction would also assist people to understand what is possible.

The NDIA should also make self-direction more accessible by reinstating the float which provided upfront funding from where self managers could draw on to pay for their supports.

Increasing flexibility around what can be purchased and being able to carry forward savings to spend on achieving NDIS goals is also needed so that participants so that participants are incentivised to seek out value for money.

REFERENCES

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http://www.pc.gov.au/projects/inquiry/disability-support.

Parliament of Australia. Productivity Commission. (2011). Disability Care and Support Inquiry

report. Retrieved from: http://www.pc.gov.au/inquiries/completed/disability-support/report

Parliament of Australia. Social Service Portfolio. (2016). Index to questions on notice (Official Hansard). Retrieved from: http://www.aph.gov.au/Parliamentary_Business/Senate_Estimates/clacctte/estimates/sup1617/

DSS/index.

Parliament of Australia. Social Service Portfolio. (2012). National Disability Strategy 2010-2020. Retrieved from: https://www.dss.gov.au/our-responsibilities/disability-and-carers/publications articles/policy-research/national-disability-strategy-2010-2020

Parliament of Australia. Senate Community Affairs Committee. (2017). Answers to Estimates

Questions on Notice Social Services Portfolio (Official Hansard). Retrieved from: http://www.aph.gov.au/Parliamentary_Business/Senate_Estimates/clacctte/estimates/index

Winkler D, Holgate N, Sloan S and Callaway L. Evaluation of quality of life outcomes of the Younger

People in Residential Aged Care Initiative in Victoria. Melbourne: Summer Foundation Ltd. 2012.

Winkler D, Sloan S, Callaway L. Younger people in residential aged care: Support needs, preferences

and future directions. Melbourne, VIC: Summer Foundation Limited 2007. United Nations Convention on the Rights of Persons with Disabilities. New York: United Nations;