Improving outcomes for National Disability Insurance Scheme Participants who require Supported Independent Living

Provider and Sector consultation – October 2020

From: James O’Brien

Chair

Prader-Willi Syndrome Australia Ltd

Introduction

I represent people who have Prader-Willi Syndrome (PWS), their parents and supporters. Many people with PWS live in disability shared living arrangements with Supported Independent Living (SIL) supports or will do as they grow older. We welcome the opportunity to contribute to this very important consultation1 at the invitation of the National Disability Insurance Agency (NDIA).

I will provide a general explanation about PWS to improve your understanding and respond to the specific issues and questions raised in the Paper, from the PWS perspective.

PWS is a rare, life-threatening condition. It is a complex, multistage genetic disorder affecting multiple systems in the body. It significantly impacts on behavior, learning, mental and physical health. Adults with PWS exhibit high anxiety, complex and at times challenging behaviours and cognitive dysfunction throughout their lives. They have poor judgement and are socially isolated. Whilst they have variable intellectual disability, they all have significant cognitive and functional impairments, including in executive brain function (planning and organising). A defining feature of PWS is compulsive over-eating, to the point of death.

‘BEST PRACTICE GUIDELINES FOR STANDARD OF CARE IN PWS’ have been published, for use internationally. More successful outcomes are achieved when SIL service providers adopt the specialist skills and techniques needed to support people with PWS.

People with PWS typically die young, due to complications associated with obesity. However, when PWS is managed properly, and those with the condition have the right support, they can be expected to lead a more ordinary life and live longer. As adults, they need life-long support from Supported Independent Living services (SIL), typically in purpose-built Specialist Disability Accommodation (SDA). A combination of an appropriate SDA environment and staff SIL skills at appropriate intensity levels, mean that people with PWS can exercise their human rights. The SIL/SDA support model needs to be designed specifically to ensure the needs of people with PWS can be met, where complementarity of SIL and SDA delivers support in the least restrictive way.

Purpose

The feedback provided in this submission refers firstly to the Consultation Paper, and then the specific questions. The Prader-Willi Syndrome Australia (PWSA) has some concerns about the validity of the proposed approach in the Consultation Paper, which contains many broad and uninformed statements. The PWSA provides the following feedback:

1 The Consultation Paper was available from the web page https://www.ndis.gov.au/providers/housing-and-living-supports-and-services/housing/supported-independent-living

    www.pws.org.au                                                              2

PWSA does not agree that existing group home environments are ‘legacy’; they deliver better outcomes[2] for some Participants and need to remain available as an option for Participants who choose that model.
We disagree with the conclusion that “a subjective approach” has determined a level of support. Many people with PWS have supplied the NDIA with reports and tests results from experts in their fields. It is on that basis that the Plan budget was determined.
While PWSA is open to a future that embraces assistive technology, PWSA has not been provided with, or discovered to date, any examples of “contemporary living models using assistive technology” for people with complex intellectual disabilities that have better outcomes for them when compared with human support that offers practical and social engagement, so often lacking for those with intellectual disability and cognitive impairments. People with such disabilities are likely to continue to rely on [SIL] staff[3] to provide opportunities for participation and assistance to be engaged in activities and social interactions for the foreseeable future.
PWSA advises that people with PWS will, due to an ongoing lack of capacity, find it difficult or impossible to grasp the concept of a Roster of Care (RoC), and then hold a provider accountable for delivery. But the Participant should, with the support of their Nominee or other advocate be involved to the extent they can be. Therefore, it is not helpful for the NDIA to have further removed the Participants’ opportunities to participate by making unexplained decisions about reduced RoC hours and SIL budgets on 1/7/20. It is a dangerous assumption for the SDA to make that all residents of an SDA have the same support needs. Funding for complex Participants must be at a level for each individual, so providers can meet their duty of care obligations.
PWSA believes that the NDIA, in referring to SIL as “daily personal supports in shared living arrangements”, has an intention to bring SDA budgets into this new plan review approach, without being transparent about its intentions. PWSA wants more information and clarity about whether, and how this approach will impact a Participant’s SDA assessment and SDA budget.
PWSA notes that the National Disability Insurance Scheme (NDIS) is quite new, so errors in quotes are to be expected. If errors were at 40% and negotiations protracted, then the NDIA has to accept responsibility for not enabling the SIL process as envisaged. The stakeholders were unfamiliar with the SIL quoting process. So, instead of changing the ‘quote and negotiate’ process before we have been given the chance to ‘have a go’, the negotiation process should be retained, with efforts made by the NDIA to ensure that the provider has in fact involved the Participant in any submission of a RoC to the NDIA. Also, the NDIA must resource the process properly. It is unacceptable to members of the PWSA that a ‘cookie-cutter’ approach was taken to many in-kind SIL budgets, which seems to be the result of the 1 July 2020 changes. Engaging quickly with providers must not outweigh allowing time for the Participant to submit evidence properly.

Where Participants were excluded from the SIL/RoC development process, they should now be offered the chance for involvement, without invoking a Plan Review.
There is concern about the disproportionate emphasis on sustainability in contrast to the welfare of Australia’s most vulnerable citizens in the proposed approach. PWSA is disappointed that the NDIA only has a “strong belief that long-term Scheme sustainability and participant choice and control can co-exist, and that there is not a trade-off between one and the other.” rather than guaranteeing the safety and welfare of the intellectually disabled. The PWSA does not want to see the emergence of the flawed aged care model for the SIL-SDA cohort of Participants.
Participants should not be caused disadvantage by the NDIS through promotion of choice and control in the domain of home and living more than for other domains; there should be equivalent promotion of choice and control in other critical areas such as legal systems, employment and political life.
PWSA challenges the assumption that “The rapid escalation in SIL costs is not in the long- term interest of participants…” PWS is complex. PWS is known in many countries around the world to be an intensive, and therefore expensive condition to support. As a result, there are specialised homes across the world, specifically for residents with PWS. People with PWS need the funds that have been identified, and which have been typically under- estimated during the scheme’s development, so that they have the correct support; That is in their long-term interests. Some complex Participants can also experience regular episodic increase in support needs. Failure to provide adequate supports results in poorer medical and behavioural outcomes and a diminished quality of life, which in the long term requires a higher level of support. It reduced support could also lead to a failure of duty of care by the NDIA and the Scheme overall.
“SIL was created to help transition from block-funding arrangements”. That is not the understanding of the PWSA. It is clear that there will always be a need for the SIL/SDA group home model. Some Participants prefer it. Living alone, or in a dangerous SRS environment, for a person with intellectual disability, engagement impairments and behaviours of concern is creating isolation for some Participants and setting them up for failure, rather than positive, constructive outcomes.
PWSA wants to see details about the appeals process for problematic SIL/SDA budgets
PWSA reminds the NDIA that pre-NDIS group home staff have always provided Active Support in group homes, because it delivers the best outcomes for those with intellectual disabilities and other cognitive impairments. Residents are to be no worse off under the NDIS in relation to SIL and other services. Active SIL Support is critical for PWS, to maximize opportunities for better outcomes. So, whilst “Attendant Care” is a primary service for the physically disabled, it is only one aspect of SIL service provision in group homes.

PWSA welcomes the contribution of Support Coordination and its separation from the Participant’s SIL provider.
Members look forward to an expectation and practical mechanisms for the Participant and their Nominee to have complete transparency about SIL staff rosters, on a daily basis, preferably online.

Response

From a provider and sector perspective, what drives the 1.3% month-on-month cost increases to SIL participant plan budgets, with particular note to FY2019/20?

There was an original under-estimation about how much it really costs to provide proper support for the complex cases that live with intellectual and other cognitive disabilities using SIL services in SDA. Research has shown that better outcomes are achieved for this cohort when key factors are in place to ensure quality of life outcomes. Many providers had already been delivering the following, which must be built into ongoing Plan budgets (this is not plain and simple attendant care activity). The success factors for people with PWS and others are:

All staff trained in Active Support and PWS complex support skills.
Strong practice leadership of individual direct support workers and their team through regular coaching, observation and feedback about their practice, discussion of Active Support in team meetings and individual supervision, shift planning, and support to maintain focus on the quality of life of the people they support, including maximising personal choice and control, as core to everything they do.
Practice leadership structured such that leaders are close to every-day practice, and their tasks are not split across different positions.
Senior organisational leaders having a shared understanding of Active Support, and recognising and valuing high quality practice.

At the same time, with the improved involvement of third-party providers, to help reduce challenging behaviours in the home, the parties are now documenting, and are more aware of the services needed to support people with complex needs.

What could the NDIA do to help providers and the sector address plan budget inflation?

The SIL staff need to be able to monitor and report on the under-performance of third-party providers. For example, in the vast majority of cases the person with PWS won’t be able to effectively understand a Service Agreement or a scheduled booking. They will not realise if the community access provider comes late or leaves early. The Participant will rarely have the planning and organising capacity to document the evidence of under-performance and report it. So, a good way to weed out unsuitable, expensive operators will be for the SIL staff to monitor and report to the Q&SC on behalf of the Participant.

The Participant should be allowed to spend their Core Social, Community and Civic Participation budget, with their familiar SIL provider staff, if the Participant choose this process. This will help to keep administrative overheads lower because:

Support Coordinators wouldn’t be needed so often to arrange community access providers.

www.pws.org.au 5

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Participants who choose their SIL staff to go out and about with will be happier. This will reduce challenging behaviours and the administrative costs associated with managing Incidents.

Certain SIL staff should have Key Worker8 responsibilities given to them. Key Workers have good administrative skills as well as their Active Support skills and can track their Participant’s commitments more effectively. This then reduces instances where a provider cancellation fee has to be paid unnecessarily. The Key Worker can also ensure that the rest of the SIL team (and visiting providers) implement the Participant’s at home capacity building plans, proactively and consistently. This will make it more likely that the Participant can progress towards their goals at home and beyond.

A person with PWS will always needs support throughout their life. If the support is inadequate in the disability sector, the person will end up generating costs in other sectors such as justice, hospital or mental health. So, the systems must work together for the best outcomes for the Participant, then costs to the community overall will be managed. So, the NDIA must collaborate with other service sectors such as police and hospital emergency so that futile cost shifting activity does not occur to the detriment of the Participant.

What are the most significant challenges that participants face when receiving person-to-person support in shared living arrangements?

Staff do not have enough time to provide meaningful support and understand and resolve the problems.
Inconsistency in staff supports: o Either some think they are only there for attendant care only, when the Participant is expecting Active Support, or o there are too many casuals who don’t know the residents or the routines or the residents’ plans that they are supposed to be implementing.
An inability for Participant to communicate their needs effectively
An inability to identify and report under-performance of the SIL provider, so progress towards goals is hampered.
Participants don’t know whether the staff on shift have the Intensity Level skills that have been allowed for in their Plan. There needs to be more transparency by SIL providers (to the Participant and their Nominee or advocate) about the NDIS skill level of each staff member delivering service in the RoC.

What has been the impact of recent SIL changes to provider operations and participant experience?

The PWSA is very dissatisfied by the actions of the NDIA. The NDIA changed the SIL quoting process suddenly. It:

took choice and control even further away from Participants,

added to the distrust of the NDIA that Nominees and others have
put SIL providers under more duress, as the NDIA created an additional change management burden, to the disadvantage of the workforce and the Participants
Further undermined the confidence of disability providers and increased uncertainty in the sector as yet more changes have to be implemented, putting further pressures on already stretched resources.
left providers in the awkward and costly position of having to explain the chaos, not of their making, to service users’ Nominees and families,

What advice do you have for the NDIA working more closely with participants regarding their SIL supports?

It will not be helpful for the NDIA to work more closely with SIL-SDA Participants. The Participant’s own expert providers who know them and their functional limitations best, can more accurately provide (or have already) any evidence the NDIA is seeking.

The NDIA has already shown that many of its staff do not have enough understanding of the day to day impacts of extreme, and cumulative functional impairment. The NDIA staff are seen to be overworked, lack continuity of involvement and often get NDIS Plans wrong. My members do not have any evidence to trust that direct NDIA involvement will improve outcomes for their family member with SIL in SDA.

What are some effective ways for providers and participants to jointly work through and agree on an appropriate roster of care?

Where a person has been in supported accommodation before the NDIS, the pre-NDIS Roster of Care should be shared with the Participant and their Nominee, family member or advocate. That would be a starting point for the discussion.
Then the provider must meet with the Participant and their supports, to identify needs. Apart from the basic ‘attendant care’ support, the needs would be based on the Participant’s other goals (such as doing some housework, some cooking, or socializing online with a friend, an advocate or a recreation opportunity),
After that, the provider can explain their proposed RoC, and how it will support the Participant’s goals, plus implementing any other plans for activity that happens in the domestic environment. Once agreed, it is sent to the NDIA.
If the NDIA does not endorse the proposed RoC, the NDIA must explain to all parties directly which SIL support hours (ie. services) have been rejected and why it thinks the new roster will be adequate for the Participant to progress their goals and remain safe.

What could the NDIA do to help assist providers in communicating the rationale behind a change in a participant’s circumstance?

If the NDIA had critical information about an adverse change to a Participant’s RoC or budget circumstances, then it is up to the NDA Planner to communicate such information and provide the rationale directly to the Participant and their Nominee. It would be nonsensical for a service provider to be involved in such communications when they are also just a recipient of the

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information. The service provider would not be able to answer all the Participant’s and Nominees questions. To involve the provider as a communication ‘middleman’ is wrong. It would be expensive for them and lead to a perception that the provider was the cause of the change, when it is the NDIA who would be responsible and accountable.

The implications of this question are concerning. Is the NDIA intending to make sudden adverse decisions about an un-negotiated change in RoC and therefore SIL budget? Could that mean that a Participant was suddenly unable to afford to continue living in their own home?

Some disabled people want the choice of a SIL-SDA group home to support them to strive for their goals from a solid foundation of support, like an ordinary person would.

If a single, isolated ‘Independent Assessment’ of a Participant resulted in an adverse change to support circumstances (eg. reduced RoC hours), then the PWSA would strongly encourage its members to question the validity of such an assessment. It would support its members to investigate, if that was their choice.

However, question 7 is extremely vague. The PWSA does not clearly understand it. If it is about capacity, how could there be ‘a change of circumstances’ that suddenly surprised a Participant? They and their providers are the ones who know if something has changed in the Participant’s impairments or capabilities. The SIL Key Worker or House Supervisor should be communicating with the Participant and Nominee/advocate on a regular basis, in a team approach to Participant support. As such, if a change is emerging, the SIL supervisor should be discussing it immediately with the Participant and their supporters, even before the NDIA becomes involved.

Once a RoC is in place, it should not be subject to review by the NDIA for at least a year, or longer when it is clear that the Participant has reached a plateau in their level of capacity for activities of daily life.

The NDIA must not put any of its SIL SDA residents at risk of homelessness. Because PWS is so complex, there are almost no providers with the right SIL expertise to deliver support in purpose designed SDA to allow for food management. So, in a thin market, where the Participant has no choice, then the NDIA must make an adequate Plan budget available. The NDIA must not create a situation where SIL providers do not feel confident that they could meet their duty of care responsibilities on the budget provided and are forced into the position where they have to decline to support complex residents.

How are providers currently informing participants and their families about the supports that they should be receiving? What has been more effective in your experience?

Many members have not been invited to be involved in any discussions about what SIL supports their Participant should be receiving. No effective communication methods have been identified, because, if there were any invitations, they were not successful in joint SIL quote development. Not only that, some providers are not telling Participants or Nominees what SIL hours they are quoting and actually delivering.

What might explain variability in support levels across providers for participants with similar circumstances?

Participants with similar circumstances may have different Plan budgets.

People with PWS are most likely to have various management plans in place that SIL staff should be implementing (e.g. one person could have plans for oral health, behaviour support, exercise, specialised menu, mental health, etc.). If these plans are not implemented in the home, it will be hard for goals to be met. At times there may be cultural differences within individual SDAs where the SIL staff are not actually spending time actively implementing the plans. This might encourage the provider to reduce staff hours. Members note that there is as much variability in the quality and quantity of support provided between houses of the same provider as there is between different SIL providers. That implies differences in operating models between providers. In the absence of any research about Participant outcomes, no conclusions can be drawn from this about which models are better. However, logic would point to better success when staff are more skillful, engaged and in an appropriate RoC for the complexity of the household.

Sometimes house supervisors who are supposed to be working at one house full time, split their attendance across two premises as the provider tries to save money. But it means a poorer service will be delivered, with less opportunity for SIL staff to build their own skills in looking after complex Participants.

An inflexible staffing structure within a house is a problem. This can cause high staff turnover and poor support levels. This tends to occur when there are no career progression opportunities within the house, and when staff can’t be rewarded for building skills and working with complex Participants. Staff have been known to say that if their pay is going to be the same, they want to be placed in a SIL house by their employer where the Participants are not as complex as those with PWS.

We acknowledge that the process of providing a consistent high quality, extensively trained support team that is skilled in supporting complex needs is challenging within an NDIS insurance-based scheme that is largely motivated to deliver cost savings. We believe that a SIL quoting structure that accommodated more highly skilled and tertiary trained/educated staffing, with appropriate remuneration, will deliver improved outcomes for complex Participants.

10. What support from the NDIA would be most helpful to providers to reduce administrative challenges?

Acknowledge that some Participants with cognitive impairments have reached a predictable but low level of independence. Then provide a SIL budget to deliver appropriate support rather than frequently reassessing in the hope that the Participant’s needs have changed to allow a smaller budget.
Better forward planning and keeping the scheme stable so that stakeholders can get on with their work. The sudden change to the SIL quoting process on 1/7/20 was quite destructive. If rules need to change, an impact assessment must be done beforehand, and the change activities themselves funded by the NDIA. Then at least 6 months’ notice should be given before implementation.
Also, there needs to be better planning within the system to recognize the multistage nature of some disabilities like PWS, so that updates to Plans are not so onerous. There is a need for “Aging in place” programs to be built into SIL-SDA service options.

11. What are a provider’s pain points in working with NDIA on SIL rosters of care, and what else could the NDIA do to simplify processes?

As for 10 above. Also:

The NDIA does not have stable rules and enough of its own staff to manage the applications
SIL provider will have already involved the Participant and looked at and assessed the Participant’s reports of impairments in order to make a RoC proposal. So, if the NDIA accepts the quote, the process will be simpler. A Participant check-in for SIL is just another unhelpful overhead that the SIL provider will have to administer.

12. Do these guiding principles appropriately shape SIL reform?

The Principles have a number of significant gaps which need to be addressed:

Participants, in the first instance, need to be provided with real support to develop their goals for their NDIS Plan, in advance of making decisions about how to use any ensuing funded supports. The NDIA has failed to ensure advocacy for people with SIL in SDA who lack the informal supports to assist with goal setting. Therefore, support for goal setting needs to be included in the Principles.
Whilst the NDIA is proposing to offer the dignity of risk, it has not articulated how it will ensure that a risk does not become a crisis. People with PWS often over-estimate their capabilities (confabulation9) and take risks that deliver them into crises including homelessness and the justice system. Principle 6 is far too vague. The NDIA has to explain how it will ensure that no Participant will be left in a situation like Anne-Marie Smith in South Australia, who perished under the watch of the NDIS.
The approach does not have enough focus on the needs of those with an intellectual disability and how they differ to those who have only a sensory or physical impairment. Research has found that support for people with intellectual disabilities in supported accommodation services needs to go well beyond the type of attendant care that is relevant for people with primarily physical or sensory disabilities without cognitive disabilities.10 Therefore, an additional Principle is required: Support must be of high quality (i.e. Active Support11 complements Positive Behaviour Support), and the model of support funding must ensure that staff receive the training and practice leadership that evidence indicates are necessary to deliver this.
A simpler assessment process might be welcome in theory, but for people with PWS, it could easily fail in practice. PWS is a very complex condition, with a lot of evidence12 that it is not like other intellectual disabilities. Therefore, the Principle needs to include the concept that the assessment mechanisms will be proportionate to the nature of the

disability, and the Participant must be allowed to supply, and have considered, any

additional reports they want to submit. In the UK, it was found13 that unless people were able to submit a breadth and depth of information about the impacts of their disabilities, they did not receive the level of support they needed for social, community and economic participation that they were striving for.

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and providers the appropriate ‘reasonable and necessary’ support funding to meet their duty of -care obligations for this vulnerable group of Australians. The NDIA needs to:

Acknowledge that most people who have this level of need will need it for their lifetime and that a goal of maintaining a safe and suitable SIL-SDA home environment will most likely be a goal repeated year after year
As significant service users there should be a working group of these Participants (and their Nominees or other representative) who can inform the NDIA about lived experience and how to improve the approach. This group is to be facilitated by the NDIA.

In summary, PWSA has some serious concerns with the approach as it appears in the Consultation Paper. It jumbles together SIL and SDA components. Also, it fails to recognise the specialised service needs of people with intellectual disabilities and seems to have been developed based on some flawed assumptions. People with intellectual disabilities need support in their homes, well beyond attend care, and people with PWS need to be supported in an even more specialised way. Then they can flourish.

PWSA cannot support the approach in its current form. I would be happy to meet with you to elaborate on the reasons for our concerns.

James O’Brien Chair Prader-Willi Syndrome Australia

    www.pws.org.au                                                             12