Planning process issues impacting people with complex needs

The Housing Connection

Together. Yourchoices. Yourdreams

31 Albert Ave

Chatswood NSW 2067

5 September 2019 Ph: (02) 9415 2311 Fax: (02) 9413-4770

ABN: 77 144 980 898

Joint Standing Committee on the National Disability Insurance Scheme                                                                                 thc@thc.org.auSubmission via website                                                                                www.thc.org.au

Dear Committee Members,

I am writing on behalf of The Housing Connection (THC). The organisation delivers core services to 173 people and supported independent living services (SIL) to 11 people across the Northern Sydney District. THC has been operating since 1981. The feedback below is under the headings from the reference items identified on the website. The content below is based on feedback from people with disability, their families that we support. Along with THC employed support coordinators, team leaders and other personnel who have participated in planning meetings.

The experience, expertise and qualifications of planners It would appear that this varies significantly amongst planners. However, having a planner with known relevant experience does not guarantee a positive planning outcome. The use of Local Area Coordinators (LAC) who gather the planning information and send it into an NDIA planner who does the plan does not make sense and has resulted in errors for participants. Below are two examples of this: 1.1. The interpretation of Mitchell’s needs by the NDIA planner, from the information supplied by the LAC, resulted in allocating resources for him to attend a centre based day program Monday to Friday from 9 am to 3pm. Mítchell is on the autism spectrum, has a diagnosis of OCD, experiences anxiety. Mitchell does not tolerate group activities and is very rigid in his choice of activities. Mitchell can engage in challenging behaviours, including assault, if staff are not trained in his support, including his comprehensive behaviour support plan. Mitchell was receiving 1:1 support, via carefully selected staff, and had been receiving this for many years as it met his needs and reduced challenging behaviours. A review was requested and tailored community based options was then available in his plan. Mitchell has a history of service delivery failure where robust clinically based training and support is not in place. 1.2. The LAC on Lily’s second plan review uploaded another participant’s information on the portal for the NDIA planner. Hence, Lily’s plan was not based on her needs, and her plan had significantly reduced supports. It took 8 months of follow up and requests for a review to have Lily’s plan reviewed. Her plan is still not correct and another review has been requested, with no outcome yet. Lily has had to miss key core supports for over 12 months with a significant impact on her health and wellbeing.

Participants have also had variable planning outcomes with NDIA planners. This includes not reviewing information ahead of a review meeting; rejecting evidence from specialists (see below for further examples) and inexperience in communication with adults with intellectual disability. One example is: 1.3. Audrey attended her third plan review meeting. Audrey has a diagnosed mild/moderate intellectual disability (ID), a borderline personality disorder and some health needs that she requires support to manage. Her mother is frail and relies on Audrey’s support staff and

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support coordinator to manage the communication demands and issues due to Audrey’s disability. The NDIA planner in the meeting questioned Audrey’s eligibility for NDIS; suggested she should access mainstream services; and that she would need to be reassessed. Audrey communicated that she had been assessed to death whilst at school and that this was inappropriate. After the meeting Audrey lodged a complaint. Her plan ended up being okay. However, the inappropriate communication and information resulted in an escalation of Audrey’s behaviours of concern that took 4 days to de-escalate and resulted in significant additional support from our organisation.

The ability of planners to understand and address complex needs The plans for people with complex needs frequently do not reflect the planning discussions and therefore the resources to manage complex needs. In addition, the evidence from specialist such as behaviour support practitioners and relevant professions is often not taken into account. This has an impact on plans around the staffing requirements; the need for staff to have training in a behaviour support plan; team meetings; the requirement for double up shifts to train staff in the participants needs.

The sector has been advised that the complex pathways team would be in place from October 2018. There has been no evidence of it in the discreet area where THC delivers services. In the last eight weeks, two people requested access to this pathway. This has not been acknowledged, no feedback was provided, and they also received inadequate plan. The concept of the complex needs pathway would be of benefit to a cohort of people with intellectual disability, with complex needs, and having a single planner and point of contact. Five recent examples include: 2.1. Derek was at risk of losing his job due to the assault on another client at his place of work and behaviours of concern in the community placing him at risk of contact with the criminal justice system. At the August review, meeting the support coordinator requested a plan for more than 3 months at a time. The previous three monthly plan, the planner identified that in three months the participant would need to be living with someone and needed SIL funding and if not his overnight support would be reduced. The plan after the August meeting did not include SIL and did not provide resources to safeguard his work and provide additional support at times of high risk in the community. A review was requested and there has been no response. A SIL quote has been submitted and there has been no response. 2.2. Scott is now has just had his fourth plan review completed. This was due to be completed in early August. There has been no feedback on the SIL review to date. The planning process does not include discussion or consideration of SIL. This is a separate process. Scott’s recently approved plan is missing two days of support (9-3pm) during the week, outside the SIL funding. An email was sent to the planner regarding the missing two days. There has been no response. The nominee has submitted a plan review. There has been no response within the 14 days identified as the turnaround time. Scott has a clearly identified need for 1:1 support.

NDIA has sent emails to advise that if a service delivers services not in the plan, to not expect payment. Organisation’s have a duty of care to ensure the wellbeing of participants. The planning errors, incapacity to review plans swiftly (and to correct obvious errors), places participants and the community at risk. NDIA has a demonstrated history of pushing all liability to service providers, including carrying debt on behalf of the NDIA.

2.2.1. Scott has had significant issues with his plans since 2016. His first plan was much less than what he received under ADHC. A plan review took 11 months to action. The second plan was also inadequate and included a request by NDIA to have an independent review of the model of support. At the third planning meeting, the independent review of the model of support (requested by NDIA) was rejected by NDIA personnel as not providing enough evidence. Scott is a person who requires 24/7 support and supervision with all activities of daily living and his behaviour support plan (verified by the independent review) indicates that he requires 1:1 support and very specific environmental considerations. The NDIA has been insisting

that because he lives in a house with five bedrooms, that there needs to be four other people living with him, despite the model of support being historically based on meeting the needs of two people with complex needs. Scott has a profound intellectual disability with a non-organic degenerative diagnosis. NDIA planners assuming that he will get better goes against his history and medical advice. Scott’s family are extremely stressed about the planning anomalies. In addition to plans that do not line up with evidence from specialists; due to inadequate resourcing and consideration of environmental considerations, P.R.N medication is being used to manage his behaviours. They argue that this is breaching his human rights, which I agree with. 2.3. Daisy had appropriate provisions in her plan for day support and SIL for the first three years. Her fourth plan has resulted in her not receiving adequate social and community participation funding. As a result there is no funding for periods during the week when she is not at her preferred day program. This is resulting in an escalation of behaviours when she does not have support. A plan review has been requested and rejected. Another plan review has been requested and we have asked for supporting evidence from the engaged clinical psychologist. Daisy has a behaviour support plan that all staff need to consistently implement to manage behaviours of concern. Daisy lost her father last year and her mother has limited capacity to advocate on her behalf. 2.4. Julia is in a similar situation to Daisy. Her SIL funding is adequate but her day supports have been cut. The NDIA planner decided Julia was ready for open employment, despite a letter to the contrary from a social enterprise that she attends under her community participation funding. Julia used to have 2:1 staffing and has done extremely well over the last 6 years. The reduction of funding and support during the week has seen a deterioration in her behaviours of concerns. In particular, excessive drinking, being deceiptful, exploiting others and placing herself and others at risk in the community. 2.5. Xavi is a Korean NDIS participant who relies on Support Coordination to assist him in his service delivery coordination. THC has Korean speaking staff members, with a social work background, who are qualified to deliver this service. Xavi’s recent plan review was ok, except for the exclusion of support coordination. He requested that he is unable to properly utilise NDIS funding and access any of his services without the support of a Korean speaking Support Coordinator. When he requested for Support Coordination funding to be included, the LAC and interpreter explained the planner refused to approve for SC funding, that he was only eligible to receive SC once only. He speaks no English and the language barrier causes huge stress for him. The LAC and interpreter threatened the participant that if he sought a plan review, to be able to have support coordination included, that his current plan that is okay might be affected. This has left Xavi extremely anxious and stressed, he has felt devalued and his needs utterly dismissed. Yana from THC is currently supporting the participant to communicate to all his current service providers including organising speech therapy, anger management therapy, respite support, how to approve invoices sent to the participant for approval as his plan is planned managed. Yana, in the last week supported Xavi to contact NDIA. He was unable to answer or comprehend any NDIS related terms, ended up crying, and became verbally abusive due to the frustrating circumstances. Xavi feels that the NDIA is being culturally insensitive to meeting his needs.

The ongoing training and professional development of planners We have seen no evidence or change in the last three years around any training delivered.
The overall number of planners relative to the demand for plans For some participants the delay in plan reviews we have been advised is due to staff shortages or dealing with a backlog, ‘we will get to it when we can’, was one email response for Lisa (noted above). We have witnessed a high level of turnover in NDIA personnel. Not having a single planner is a huge issue for participants who have to demonstrate and explain themselves every three, six or twelve months depending on their plan timeline. The capacity of planners to rectify errors without going to a review is of serious concern.

Participant involvement in planning processes and the efficacy of introducing draft plans In Derek’s most recent plan review meeting (see 2.1. above), the planner specifically asked for him not to attend. It had been organised for Derek to attend the last half hour of the meeting as this would work better for him. The Support Coordinator for Derek was shocked at the request of the planner, who insisted that the planner meet with Derek at the end of the meeting. Derek did not receive adequate funding to cover all his support needs. Derek is a risk of losing his work placement due to assaults on other participants. Having a person present is critical, for at least part of the time, to understand who the person is and what their support needs are. This is critically important for adults with intellectual disability and those with complex support needs.
The incidence, severity and impact of plan gaps This is massive and is indicative of the systemic issues with the planning process. Over 1 week ago, I sent a list of planning issues for 16 people with complex support needs, who had either run out of funds in their plan or were about to run out. NDIA has advised us not to provide services to people who have no funds in their plans. Given that plan reviews are not responded to, that there can be gaps from a review meeting to plan finalisation, this leave the cohort of people we support, adults with intellectual disability and with complex needs, at risk to themselves and others. We have participants who are at risk of contact with the criminal justice system who have no funds left and the request for a review has received no response. To not deliver a service that places someone at risk of harm is not acceptable.

As this point in time, our organisation has $113k in manual claims outstanding that we have escalated to NDIA. This is estimated to increase given that we have 16 people we have immediately identified and written to the local NDIA office about who have no funds in their plans or significant gaps.

THC is a small organisation with approximately $5m in revenue. Given the lean pricing, our organisation cannot continue to carry the cost of delivering services due to the ongoing planning issues.

The reassessment process, including the incidence and impact of funding changes This has been outlined above. If you require more specific information, this can be provided.
The review process and means to streamline it Getting the planning process right would be a good start. Having a single planner would mean continuity of information and the capacity to confer annually and process a review based on change of circumstances only. If no change, a role over of the plan. This would save considerable NDIA and provider resources.

At present, the perception in the sector and based on experience is that if things are going well, cut funds, resulting in escalation of issues and poor outcomes.

The amount of time we spend supporting participants around the review process and managing poor plans is excessive. The NDIA will only communication with the participant nominee, which we support. However, many of the nominees are family members who come to us for advice, support and assistance. They frequently say that they cannot understand the NDIA lingo and get confused. Some family members have given written consent for another person to talk to the NDIA on their behalf and they requests are not accepted by the NDIA.

We have a handful of participants who have received a two-year plan, but with only enough funds for one year.

The incidence of appeals to the AAT and possible measures to reduce the number To date no one we support has gone down this path. However, we will do so shortly if current and ongoing issues are not resolved. People we support and their families have been patient for the last 3 years and we are advising them to go to an AAT review if the ongoing issues are not resolved.
The circumstances in which plans could be automatically rolled-over Covered in 8 above. Happy to provide more information if requested.

The circumstances in which longer plans could be introduced As per 10 above.

The current NDIA pricing for core supports is based on attendant care services. It does not account for the specific cost of delivering supports to people with intellectual disability and those with complex needs. This includes the training required (in behaviour support plans, double up shifts - at a minimum 8 x 8 hour shifts before an assessment of competency can be made), clinical review meetings around the implementation of behaviour support plans and their reviews, coordination of supports relating to physical and emotional wellbeing.

The above is illustrative of the systemic issues that we witness as a service provider and based on the conversations with participants and their significant others. Our Board of Directors is very concerned about the level of systemic issues with the scheme.

THC has been delivering individually tailored community based service before the 1983 Richmond report. THC is an organisation that has been at the forefront of innovation and thinking outside the box in its practice since 1981. The planning process, as it stands, is an impediment to the principles of choice, control, reasonable and necessary supports.

Solutions

A single point of contact in the planning process
Planning process to include consideration of SIL
A requirement to consider the evidence from reports, including those of specialists, prior to a planning meeting
A draft plan, including SIL, if applicable is sent to the nominee for approval
If any questions, gaps, errors, then these should be rectified by the planner via telephone, email, face-to-face and the planner should be able to rectify errors and gaps.
NDIA to cease the practice of deleting any service bookings once a new plan is approved – as there can be invoices outstanding against the old plan.
A light touch review after 12 months with the same person and if there are no changes a rollover of the plan.

If you require additional information or clarification, please do not hesitate to notify me.

Yours sincerely,