Improving outcomes for participants who require
Supported Independent Living (SIL):
NDIS Provider and Sector consultation paper
October 2020
From: Phil Lipshut
President
Supportive Families and Friends Association Inc
e. info@supportivefamilies.org.au
w. www.supportivefamilies.org.au
Mailing address: 110 Hull Rd Croydon VIC. 3136
ABN 20 573 694 289
1) About us
Supportive Families and Friends Association Inc (SFF) is a volunteer-run not-for-profit support association, for families of people with disabilities who live in Specialist Disability Accommodation (SDA) in Victoria. We have been in operation for more than 10 years.
We welcome the opportunity to contribute to this very important consultation into operation of the Supported Independent Living (SIL) funding for people living in SDA, at the invitation of the National Disability Insurance Agency (NDIS)¹.
The scope of our support and advocacy includes, but is not limited to:
- SIL staffing ratios and skill levels in SDA.
- Supported Independent Living (SIL) quoting process.
- Lack of transparency about contract performance by service providers.
- Safeguards in SDA homes and with SIL staff.
- SDA Residency Agreements.
- Residential Tenancies Act 1997 and tenants with a disability.
- Vacancy Management.
- Dedicated transport resources for residents in group homes (in place in Victoria for many years)
- Crisis issues, such as Covid-19 risk management
- Inadequate service provision, particularly for residents without independent advocates.
- The unmet need for Independent Advocacy, which is essential for many residents to benefit fully from the NDIS.
We have ongoing communication with the NDIA, senior officers in the Victorian Departments of Health and Human Services (DHHS) and Justice, the Victorian Public Advocate, the Victorian Disability Services Commissioner, National Disability Services (NDS), Health and Community Services Union (HACSU}, many SIL & SDA providers, and other disability service and advocacy agencies.
¹ The Paper was available from the web page https://www.ndis.gov.au/community/have-your-say/improving-outcomes-sil-participants
We have ongoing communication with the Victorian Minister for Disability, Luke Donnellan, and ask him to raise our concerns when meeting with the Council of Australian Governments (COAG) Disability Reform Council².
SFF is a member of the Victorian Government NDIS ITF Participant Needs and Mainstream Interface Working Group and the Victorian Government Stakeholder Advisory Committee.
2) Context
The group homes sector in Victoria is in a state of transition. The Victorian Government has transferred the management of about 450 group homes (housing about 2500 residents), previously managed by its Department of Health and Human Services (DHHS}, to 5 non-government providers selected by a tender process, whilst continuing to employ the transferred staff through secondment, and retaining a landlord (SDA) role over the majority of the transferred homes. Whilst the residents now have an NDIS Plan, the staffing cost is still being funded by the Victorian Government until SIL Funding is included in each resident’s Plan. Most of our members’ families live in the homes affected by this Transfer, which is in transition, and have not yet received SIL Funding from the NDIA.
There is also a part of the SDA sector in Victoria (about 50%) in which group homes have not been managed by DHHS, with a mix of SDA and SIL providers. I understand that the residents in those homes are already fully funded by the NDIA.
DHHS-managed homes had a well-established model of care. As the DHHS managed the intake of residents to all group homes, it was widely understood that the residents with the greatest support needs and the most challenging behaviours were housed in DHHS-managed homes. It is important to note that the extreme cognitive and behavioural impairments (amongst others) of these residents means that they are less able and require greater care. Whilst the DHHS care had flaws with inequitable staffing and funding, there were many positive features, which should be carried forward under new arrangements and enhanced by the NDIA³.
² https://www.dss.gov.au/our-responsibilities/disability-and-carers/programmes-services/government-international/disability-reform-council ³ Intergovernmental Agreement for the National Disability Insurance Scheme (NDIS) Launch https://www.coag.gov.au/sites/default/files/agreements/Intergovernmental%20Agreement%20for%20the%20National%20Disability%20Insurance%20Scheme%20%28NDIS%29%20Launch_unsigned%20doc.docx
The DHHS model, based on evidence-based research, included Active Support⁴ of residents by SIL staff; a Key Worker in the home, for each resident; a full-time House Supervisor for each home;, adequate staff ratios; and staff training standards enabling paid, non-face-to-face professional development time. All these features supported the quality of life for residents, and reduced Incidents.
We are concerned with the potential adverse effects of the NDIS rollout and the risk of inadequate SIL budgets into the future. The group home option is a preferred choice for some participants who would otherwise be very isolated, with monitoring technology their main source of safety in the domestic environment, and fewer and fewer convivial social interactions.
DHHS staff are a highly unionized⁵ workforce, with their own Enterprise Agreement.⁶ They receive better pay and conditions than staff in the part of the sector which has not transferred from DHHS, who work under a different Award.⁷
The transfer of the management of group homes from DHHS-managed to non-government providers, has implications for the Victorian Government’s Duty of Care to the transferred residents. Prior to the transfer, the Victorian Government had a Duty of Care for the group home residents through its DHHS, as the SDA and DIL provider. Residents each had an Agreement with DHHS.
Now, under the replacement arrangements, where there are separate SDA and SIL providers, with funding by the NDIS, Duty of Care has become blurred. Where does it sit? Various parties have separate responsibilities, but no one body has the responsibility previously accepted by the Victorian Government.
Residents with a physical disability may be capable of self-advocacy within the new arrangements, as may other residents who have a family advocate, but for most residents who are not in either of these categories, the new arrangements cannot be navigated with any confidence.
⁴ Active support & practice leadership, LaTrobe University Living with Disability Research Centre https://www.latrobe.edu.au/lids/research/effective-disability-services/active-support-And-practice-leadership ⁵ Main union is HACSU https://hacsu.asn.au/Disability~68 ⁶ Disability Services Enterprise Agreement Victoria 2018-2022 https://www.fwc.gov.au/document/agreement/AE500582 ⁷ Social, Community, Home Care and Disability Services Industry Award 2010 http://awardviewer.fwo.gov.au/award/show/MA000100
A participant must now have:
- Dependence for funds from NDIA.
- Agreements with the SIL Provider.
- Agreements with the SDA Provider.
- Tenancy Agreements.
- No knowledge of the Agreement [roles and responsibilities] between the SIL and SDA Providers
- Need to action disputes through VCAT , DSC or NDIS Commission.
- Support from Advocacy Groups which are not funded.
- Support Coordination by other parties.
Residents and their families, with no independent advocacy available, must manage multiple service agreements to cover the services provided to their loved one. A typical situation would involve agreements with the NDIS, the SDA provider, the SIL provider, the Day Service provider, the Support Coordinator, the Plan Manager, a Behaviour Support Plan specialist, a Dietician, a Speech Therapist, an Occupational Therapist and a Physiotherapist.
It must be noted that these changes were imposed on residents with no choice on their part!
It is important for the NDIA to understand the families of the residents in the 450 group homes which transferred from DHHS, and of affected families more generally.
Whilst we understand that many families of children in the NDIS may embrace the complexity of the Scheme, families of most residents in group homes are at a vastly different stage of their life. They are often elderly, burnt out and unwilling to engage in a complex environment. In order to participate, many, if not most, would require independent advocacy.
They have good reason to feel very apprehensive about the future of their loved one living in a group home! Until the Transfer and the introduction of the NDIS, arrangements were stable and living arrangements were reliable. Homes were managed by the DHHS, which reported through the Minister for Disability to the Victorian Parliament.
Massive change has been imposed with no choice and control!
The concepts of SDA and SIL have been introduced, with a splitting of these functions and providers.
The SIL provider has changed.
Under a Victorian Government Early Retirement Scheme, hundreds of the most experienced support staff, who were well-known to residents, have departed. They have generally been replaced by less experienced staff.
The nature of the Victorian Government’s Agreements with the new providers is not available to families and residents.
To date, residents do not have service agreements with SDA and SIL providers.
The NDIA now funds the resident’s life. The largest component of a resident’s NDIS Plan is for SIL, and this amount is being set without any input from nearly all residents and families.
The NDIS appears as a minefield to most families of group home residents. A place to avoid if possible.
3) Intent of our submission
Our submission represents the views of our members, who mostly have a family member living in a group home in transition from DHHS-management to one of the 5 new SIL providers. As the largest support association in Victoria representing families of group home residents, we are probably also representing the views of families who are not our members but have no voice in this process.
It is a generally accepted that the NDIA program works best for participants with a physical disability who can self-advocate, but is lacking in its understanding and application for those with an intellectual disability and other cognitive impairments. Confusion exists regarding how SIL funding works, particularly with the changes in the SIL funding since the 1 July 2020 and current delays.
Importantly, participants and their families are reliant on SIL and SDA Providers to deliver improved and consistent quality and service as provided pre NDIS. Participants and families do not understand the NDIS Rules or regulations that SIL and SDA providers must deliver against. Few people do! Independent advocacy is necessary for a large percentage of participants and their families.
Please note that:
- DHHS [other than as an SDA] has no direct responsibility in ensuring the participant’s relationship with their SIL provider. Commitments made by DHHS [or the perception of] during the Transfer over the past few years may not be delivered. Participants have no understanding of the Agreements that the Transfer SIL providers have with the Victorian Government and how they will apply. Nor do they have the mental capacity to hold the SIL provider accountable to any key performance indicators.
- The participant is dependent on the NDIA providing sufficient SIL funds, not the SIL or SDA Providers. The SIL and SDA providers must adhere to the NDIS Rules and Regulations.
- Individual Agreements must be made between the participant and the SIL and SDA providers, based upon the goals in the NDIS Plan. The participant must therefore be involved in any discussions between the SIL provider and NDIA and agree with any decision. Rules state that the participant must be involved. Members report that this is not always the case.
4) Consultation questions and reply
- 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?
An historical lack of adequate funding for the supports needed by this cohort of residents with complex needs is the basis of the current trend. That is, the truth about the extremity of impairment, and what is needed for these people to participate more fully in an ordinary life is only now becoming apparent. As the Scheme has rolled out, capacity building service providers have spent more time with their participants. This has given them insight into the actual barriers to independence, which were not apparent in a one-off meeting with a professional under artificial conditions. The barriers to building capacity and solution pathways are now being documented, thereby explain the plight of the participant in more realistic terms.
- What could the NDIA do to help providers and the sector address plan budget inflation?
By ensuring that a participant can spend their Social, Community and Civic Participation budget, with their familiar SIL provider staff, if they so choose, will help to keep administrative overheads lower. This is because: the participants who choose the SIL staff option, from time to time, will be more content with their choice, which will reduce challenging behaviours and the administrative costs associated with managing Incidents.
Ensure designated SIL staff have Key Worker8 responsibilities. A Key Worker can track their participant’s commitments more effectively and can, therefore, reduce the instances when a provider cancellation fee is paid unnecessarily. They can also ensure all the other staff implement the participant’s capacity building plans, proactively and consistently, thereby making it more likely that the participant will make progress towards their goals. Follow the social model of disability9 rather than a medical model. Then the NDIA could further promote community participation and access. The wider community would then have a better understanding of necessary supports for a person with complex needs, and why the costs are reasonable.
8 Making life good in the community. Implementing a keyworking system in a group home for people with intellectual disabilities. http://arrow.latrobe.edu.au:8080/vital/access/manager/Repository/latrobe:27750?queryType=vitalDismax&query=making+a+good+life 9 People with Disability Australia https://pwd.org.au/resources/disability-info/social-model-of- disability/#:~:text=The%20medical%20model%20of%20disability%20is%20all%20about%20what%20a,attitudinal% 2C%20communication%20and%20social%20barriers.
Some participants have reached a plateau in their independent skills of daily living, and the level reached is low. The NDIA needs to recognise that there will be a baseline maintenance level of SIL budget required for such participants for their lifetimes (although their community participation and recreation choices are likely to change over time). By building this into the participant’s Plan, money will be saved by not doing pointless reviews and Rosters of Care [ROC] over and over.
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What are the most significant challenges that participants face when receiving person-to- person support in shared living arrangements?
3.1. The participant has the relationship directly with the NDIA, SIL and SDA Providers. The SIL and SDA Providers are expected to adhere to the NDIS Rules and regulations. A participant is reliant on the SIL and SDA for their wellbeing. But the participant and nominee do not have the capacity to be familiar with all the NDIS rules and are thus disadvantaged. A participant’s “Choice and Control” is negligible. And it is impossible to hold the SIL provider accountable.
3.2. The NDIS rules state that for any services required by the participant, a quote must be obtained from the Service Provider based upon the requirements of the participant. This is then submitted to NDIS for their approval or otherwise. Once approved the participant then enters into an Agreement with the Service Provider, to provide the quoted services. The NDIS then make payments to the Service Provider directly or as approved by the participant’s Plan Manager or Self-Managed process. THIS PROCESS IS NOT BEING FOLLOWED.
3.2.1 Current practice is that the SIL Provider “should” discuss with the participant their needs and prepares a ROC based upon those needs. The SIL Provider then adjusts the ROC to take into consideration others factors which include shared supports, household supports, and such as required in accordance with their business practice. {Refer to item 3.4 of this submission]. The SIL Provider then submits the SIL quote to the NDIS and a SIL value for each participant is allocated usually following discussion and negotiation with the SIL Provider. The participant has not been involved since the initial discussions with the SIL Provider and only finds out what SIL amount has been approved by NDIS following advice from NDIS or the SIL Provider. The participant is then expected to form an Agreement with the SIL Provider based upon the SIL amount allocated to the participant.
3.2.2 If the SIL amount approved by NDIA is in accordance with the SIL amount required for the SIL Provider to provide the necessary quality and service to the participant, then an Agreement can be reached with the SIL Provider. If the SIL amount is not sufficient then the SIL Provider can advise
the participant that they cannot provide the necessary service to the participant and the participant should seek an alternative SIL Provider and possibly SDA accommodation. This is an Impossible task for the participant or Nominee. There is no choice because the needs remain the same and other SIL Providers cannot provide the necessary supports and service if the NDIA approved SIL amount remains the same.
3.3 It is possible for a SIL Provider and/or an SDA Provider to structure the mix of participants to maximise the total SIL value for a house. The SIL Providers are reviewing the mix of current houses to achieve this aim. The participant currently must accept the SIL value negotiated with NDIA. This will result in participants that have been in a specific satisfactory SDA accommodation for many years to be displaced without any Choice or Control. This is an intolerable situation.
3.4 A participant’s SIL amount is specifically for that individual and derived considering a Participant’s specific needs and used in the development of the ROC. But the participant won’t know if they are in fact getting the service hours being paid for. They do not have the intellectual capacity to understand and monitor their ROC. The ROC must allow for: (a) Individual supports for each Participant, to work towards their goals. (b) The supports that are shared between participants to maximize the efficient use of resources. (c) The supports available to all Participants to ensure the smooth running of the household.
With the changes to the Price List and the revised basis of the SIL amounts, the SIL provider must be able to cover items (b) and (c) within the amounts as nominated in the Price Guide. Participants and their families are concerned that service (a) above is diminishing.
Is there sufficient allowance for the SIL Provider to cover operating costs, contingencies etc.?
The participant’s SIL amount is thus affected by the requirements of other participants and any transfer to another SIL provider must take this into consideration.
- What has been the impact of recent SIL changes to provider operations and participant experience?
The NDIA changed the SIL quoting process suddenly:
- taking away choice and control from Participants,
- putting SIL providers under further duress, as the NDIA creates an additional administrative burden, to the disadvantage of the workforce and the participants
- What advice do you have for the NDIA working more closely with participants regarding their SIL supports?
Our members do not believe that direct NDIA involvement will improve outcomes for their family member. From our experience, many NDIA staff do not understand the day-to-day impacts of extreme, and cumulative functional impairment. We hear that many NDIA staff get NDIS Plans wrong. SFF does not support the use of ‘Independent Assessments’ for SIL budgets, in isolation from the evidence of SIL providers, who know more about the participant. Evidence from other jurisdictions10 has shown that the use of Independent Assessments reduces the likelihood of an optimal outcome for the person with the disability living an ordinary life, as promoted by the NDIS.
The major issue is the current lack of involvement of the participants with the SIL Provider in joint discussions with the NDIA. The current practice of the SIL Provider negotiating with the NDIA for the Participants SIL value is not acceptable, primarily due to the points mention in Question 3.
In discussions between the participant and the SIL Provider, an amount of SIL is determined sufficient for the SIL Provider to provide the necessary quality and service to the participant. Any reduction to this amount finalized by the NDIA will result in disagreement between the participant and the SIL Provider and could prevent an Agreement being reached which actions the points in Question 3. Negotiations between the participant and the SIL Provider should be done so all parties agree on the SIL value and thus avoid any negative outcome.
At present the participants NDIS Plan review happens at a separate time to the SIL quoting process. This means that, in a group home, each resident is probably reviewed at a different time. It would make sense, for the SIL budgets of all residents to be done together. The same NDIS Planner should be maintained for each review of the NDIS Plan and SIL needs. Lack of understanding occurs when a new NDIS Planner is introduced.
There is a lack of understanding of the capability of residents to understand the information being provided by NDIS. An Easy Read version is of no use to many residents.
10 The Second Independent Review of the Personal Independence Payment Assessment, UK, 2017 https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/604097/pip-assessment-second-independent-review.pdf
The reference to “participant check-ins” has NOT been experienced by our members.
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What are some effective ways for providers and participants to jointly work through and agree on an appropriate roster of care?
6.1. Firstly, there must be agreement on the quality and amount of service required by the participant. This must involve the participant and their nominee or advocate. Most participants do not understand the concept of the ROC, but expect that the same level, or preferably better, level of service provided before NDIS funding will be provided.
6.2. Apart from the basic ‘attendant care’ support, the ROC would be based on the participant’s other goals such as doing some gardening, some cooking, or social capacity building by playing a board game with the SIL staff member, joining in with a Zoom meeting with their family member, their advocate or a club of choice. The SIL provider must be transparent in making its ROC proposal, and how it reached the hours listed. If the NDIA does not endorse the proposed ROC, it must explain to all parties which support services are rejected, and why, and how this will be adequate for the participant to progress their goals. The criteria for approval must be “reasonable and necessary”, not compliance with an NDIS financial model!
6.3. The Service Provider is restrained by some issues with the NDIS Rules which are not suitable for an efficient or practical service. These must be resolved. The fact that the SIL Provider does not have an Agreement with NDIA and still must adhere to the NDIS Rules and Regulations [which the participant does not have the capacity to understand] is a major issue. Any such Joint Agreement should involve the participant and includes the agreement between the SIL Provider and the participant. This would also nominate the SIL value agreed between the parties, following negotiation with the Participant.
6.4. Some changes proposed by the NDIS are not as reflected in the participants NDIS Plan and participants are most concerned as costs should be involved in the SIL amount allocated. Issues such as Community participation, house bus transportation are typical of some costs not included in their SIL value. This will introduce many problems for participant potentially not being supported by an experienced staff member with whom the participant has familiarity and a sense of security.
6.5. As the participant may understand their needs, they are not aware of the needs of other house participants. A participants SIL value may take into consideration efficiencies associated with a SIL Provider being able to manage the staffing of the complete house. As the SIL value is
considered an individual amount and transfer would be complicated by an alternate SIL Providers staff and management policies.
- What could the NDIA do to help assist providers in communicating the rationale behind a change in a participant’s circumstance?
If a participant’s level of impairment has changed, the SIL provider should have been having early discussions with the participant and their Nominee. There should be no surprises. There must be evidence about a change in impairment before there is a change in SIL ROC and budget.
All communication by providers about a participant’s circumstances must be undertaken in the full knowledge of the participant and their nominee, as it is the participant that has an agreement with the NDIA, not the provider.
- How are providers currently informing participants and their families about the supports that that they should be receiving? What has been more effective in your experience?
Our members report that SIL Providers often do not involve the participants and Nominees. Our members want to participate in SIL ROC development. This should happen through collection of evidence of need, a meeting, a draft, a review, a ROC update, then submission to the NDIA.
Participants rely on their nominees and Support Coordinator for the management of their NDIS Plan and for an understanding of the participant’s SIL ROC and budget. It is essential that there is an efficient working relationship with the House Supervisor and staff for the efficient provision of supports. Our experience is that this relationship only exists in a minority of cases.
- What might explain variability in support levels across providers for participants with similar circumstances?
Participant Plans could vary in their SIL budgets. Some Plans will under-represent the true need because the participant did not have an independent advocate at Planning time. Alternatively, a family advocate may not have realized how to provide relevant evidence during the Planning process. In Victoria, staff at different providers work under different payment Awards. This will impact the hours and quality of care.
A factor that contributes to the variability of supports across SIL Providers is the different management policies and principles of the Provider. Business practices, overhead, risk assessments and contingencies all contribute to the variance. Unfortunately, a participant will not be aware of the issues until they are involved, and commitments already made.
If the NDIA approved SIL amount is not suitable for a SIL Provider to provide the necessary quality and service required by a participant, then it is highly unlikely that an alternate SIL Provider would be prepared to enter into an Agreement based on the same amount. This raises the issue, that the NDIA approved SIL value is not the correct amount required.
- What support from the NDIA would be most helpful to providers to reduce administrative challenges?
The NDIA must stop changing the rules. The sudden and flawed change to the SIL quoting process on 1/7/20 was quite destructive. And if rules need to change, an impact assessment must be done, and the change activities themselves funded by the NDIA. We recommend that at least 6 months’ notice be given before implementation.
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.
- 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?
3.2 answered this question
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Do these guiding principles appropriately shape SIL reform?
SFF does not believe so.
Most participants cannot understand, weigh up, and make momentous decisions about housing and living options that are in their own best interests. The NDIA is generating great risk for these individuals and shows no evidence of intending to manage that risk.
‘Simpler structures’ for assessing the functional impairments and needs of participants with complex needs is failing to recognize their need for higher levels of support. Participants living in group homes generally need a complex needs pathway.
SFF does not support a ‘hotel style’ model of care and support, which may involve digital monitoring of residents as an alternative for human support. Without adequate direct human support, a convivial domestic environment, where goals can be pursued, is less likely to be achieved.
"Transition to any alternative model of care must be of the participant's choice.
SFF is concerned that there is a lack of clarity about "Provider of Last Resort", a role previously
managed by the Victorian Government.
13. What items should a Home and Living Policy address?
* No forced evictions without a new and appropriate accommodation and support option having
been implemented.
* SIL budgets to enable the implementation of the participant's Plans *within* the home, by SIL
staff who know what to do, and do it consistently, no matter who is on shift.
* Staff training.
* Right of appeal on any aspect.
* Home and living means 'as an ordinary person would'.
14. Are there any other comments or suggestions? What have we missed?
There should be a SIL reference group with representatives of participants and families, to inform the NDIA on SIL policy. It could report to the COAG Disability Reform Council, or the Independent Advisory Council, like the ID Reference Group does.
5) Conclusion
The NDIA has proposed an approach for the management of SIL into the future. The SFF is concerned that the NDIA has failed to take account of the fact that many participants in group homes have cognitive impairments and complex support needs.
There appear to be gaps in the method of assessment and development of ROC, which raises questions as to how this cohort of Participants will be cared for if inappropriate budgets are approved.
The NDIA appears to be risking the health and wellbeing of a most vulnerable group of Participants citizens by potentially reducing supports until there is a problem. Given the NDIS’s history of slowly responding to changing needs, we fear that the NDIA may not react in time to prevent a crisis.
The Supportive Families and Friends Association is requesting a copy of the draft Home and Living Policy. SFF would like to participate more in its development. How can we access a copy?
When and where will the results of this consultation be publicized?
SFF would be pleased to meet with NDIA to discuss the content of this submission.