Submission by Marilyn Gale as an individual
JOINT STANDING COMMITTEE ON
THE PROVISION OF SERVICES UNDER THE NDIS FOR PEOPLE
WITH PSYCHOSOCIAL DISABILITIES RELATED TO A MENTAL
HEALTH CONDITION
The consequence of losing PIR in the transition to NDIS; Currently PIR provides the opportunity for ‘real’ care coordination such as – Meeting with client and carer/family and all support workers to devise a plan that optimises the engagement of services (everyone on the same page, knowing who is doing what so there is no overlap of services). There will be no funding for this to continue as the client will not pay for services to come together (from their package). LAC in the Central Highlands region state that this is not allowed for in their Support Coordination role (they cannot attend meetings). Use of evidence based tools such as The Recovery Star to elicit the client’s goals.
This is time consuming as it looks at all facets of the client’s life and their
aspirations. It is not a tick box exercise but requires time and energy on the part of the client to look holistically at where they currently are and where they would like to be. It also requires substantial rapport between the Facilitator and the client which takes time to develop and therefore time for this plan to come together. PIR currently coordinates care for the most complex mental health clients, in the community. Who will support these clients in the future to ensure they have supports in place and to intervene early, to prevent relapse? Clinical services do not and will not have capacity to do this work and in fact I believe the absence of PIR and other community mental health services will prove to be a heavy burden on clinical services.
The specialist skills of PIR will be lost. Currently we have highly skilled
professionals who have tertiary qualifications and experience in both clinical and non clinical mental health systems. We have been able to attract these workers because they are reasonably reimbursed and valued in the PIR program. Our experience of collaboration and the progress we have made in system reform will be lost in the competitive environment of NDIS. Currently PIR Facilitators have flexibility in their approach to people with severe and persistent mental illness. This allows for the episodic nature of mental illness and engagement on the client’s terms rather than a rigid program that is only reviewed on an annual basis. Who will be managing the crisis for this client group? Where is their expertise in delivering this vital role? To support clients in crisis you need to hold some level of risk in terms of mental health issues, aggression, forensic history and risk to property. Currently, even the definition of crisis for those with psychosocial disability is unclear. PIR is contracted to work with those who meet the NDIS criteria and to work with those who do not. Who will work with this cohort (those who don’t receive support through NDIS) post July 2019 when PIR is no longer funded?
Lack of funding for assessments to be completed prior to NDIS assessment means
that evidence may not be as complete or convincing as it could be. E.g.
Occupational Therapist assessment.
Attempting to fit the client to the program requires some acceptance of
‘Permanent Disability’. For people who have a concept of recovery it is further stigmatising to an already marginalised group. The reliance of participants to access MyGov, the Portal and other I.T. skills that they do not have is further isolating and will ensure many do not commence or proceed with NDIS.
The idea that you can adequately assess the psychosocial needs of a person, over the phone shows absolute ignorance of the type of person you are assessing. Our clients will miss out on services as, due to their illness and often lack of insight they can portray their life circumstances to be very different to the reality that exists when an assessment is conducted in their own home environment.
Case Study from a mother whose child has an intellectual disability and over the past 2 years has developed a serious mental illness. The family live in the Central Highlands region and the mother stated the following occurred. Received an initial phone call from NDIS asking if they would accept NDIS support. The caller conceded that if they did not accept NDIS they would not have service provision. The family said they would apply for an NDIS package. The mother reported the caller was calling from Geelong and was abrupt in manner. A further phone call received approx. 2 weeks later where the family asked for a ‘face to face’ meeting. They were told they could have this but it would mean waiting for up to 3 months (going back in the queue). They reluctantly accepted the phone assessment. The mother attended training by VALID to understand how the plan would be put together and what would be required e.g. copy of reports from psychiatrist The plan they were offered was the same as the previous ISP that was 4 years old. The mother tried to explain that there had been significant changes in mental state and behaviour in this time, resulting in the child threatening people at day program and at home, with a weapon. The caller said no changes were allowed. No documentation was wanted according to the NDIS caller. The LAC contacted the mother several months later (2017) and offered to meet and alter the plan to reflect the current situation. The mother was informed at the VALID training that if she wanted to complain, a 6 month wait exists, for a complaint to be heard. There was no access to ‘call back’ the initial NDIS caller. This mother is an intelligent and articulate professional person who asked the question ‘how does a person with an intellectual disability, whose parents also have an intellectual disability, understand this process?’
My question is ‘how is choice and control’ facilitated by a phone call and the threat to go the bottom of the queue if a face to face meeting is requested? Many people with severe and persistent mental illness have cognitive problems that effect their ability to recall what happened that day or a week before so, when a phone call is made it is not unusual for them not to recall who they spoke to or what they spoke about. Phone calls are simply not useful for these people but how will NDIS know this? Clients will often tell you that they are fine and everything is ‘good’ and they have no problems with their mental health yet, if you were to go to their home you would find a very different picture. If you had built a relationship and understood their mental illness you would be able to intervene early to prevent relapse or crisis. The episodic nature of mental illness means it is very difficult to assess a person’s functionality and apply that to an annual plan. There must be allowance to review these plans at least quarterly. PIR have the expertise to engage the client in their own planning and review. Face to face contact with the person and their supports are key elements to gathering relevant information. Consideration of the relationships that already exists between service providers and the client and their family/supports is vital to meaningful assessment and outcomes.
Features of the PIR program that should be maintained in the NDIS world:
- Assertive outreach – in recognition some potential clients will need alternative methods of engagement, assertive outreach involves services reaching into the
community where potential clients are located, rather than having clients go to a service. Assertive outreach is often carried out in multidisciplinary teams, and can involve integrated clinical support.
- Outplacement – involves co-location of Support Facilitators in services and other locations where contact with the hard to reach potential client group is increased. Outplacement may occur in clinical or community support settings, and is usually a regular but not permanent co-location arrangement. E.g. Dept of Justice, Clinical services Funding to provide Service System work commenced by PIR and described by Urbis as: ‘The high degree of flexibility embedded within both PIR Organisation design (for example dedicated system reform roles compared to models where system reform is considered embedded within all roles), as well as the innovation funding available to resource system reform projects, has contributed to early evidence of sustainable change across the system.’ (Urbis 2014-15 report on PIR)
My concerns regarding service provision also extend to the following: Advocacy: Advocacy is experienced by clients as the practical outworking of presence. That is, clients first experience an unconditional acceptance of themselves as human beings, and out of this acceptance comes practical assistance to create stability in their lives and strengthen their capacity to develop and maintain a life that is meaningful for them. (from 2014-2015 Annual PIR Report produced by Urbis P/L)
My concern is around advocacy as this appears to be very hard to obtain and something that is critical for people with severe and persistent mental illness. I understand that there should be no ‘conflict of interest’ where service providers put their own business interests first, before the client so I don’t understand how this will work with existing providers who are advertising that they can offer all care coordination services and assistance to develop a plan. Are they explaining that they will be paid for this and that the client has a choice of providers? How do we know this is happening? How will people in SRS (supported accommodation) have access to independent advocacy? It is not in the best interest of the owners/managers of SRS to advise clients they have the right and can gain assistance to live independently, so who will advocate for this group of clients? How is it that in the tender for the LAC it was stated that the LAC would not be able to
provide ‘direct service provision’ and yet they are taking on the role of ‘Support
Coordination’ for all but around 25% who will receive this coordination from the NDIA? (Central Highlands region). As PIR is also a Commonwealth funded program that has block funding until 2019 would it not make sense to utilise the skills of these professional mental health workers to support and advocate for people with severe and persistent mental illness? “But what I was surprised about was how much she or they advocated for me, for something I’ve been battling by myself for literally 10 years, we got something done in six months.” – Client (from the 2014-2015 Annual PIR Report produced by Urbis P/L)
Carers: For many carers, their own social engagement, employment, and other relationships had gradually diminished due to their role as a primary carer. For some the consequences were loss of friendships or intimate partnerships, employment and even accommodation. Carers recognised that, just as living with someone with a severe mental illness had impacted on their lives, receiving additional support from PIR had also had a positive impact on their lives and lives of those around them. “For the first time in 13 years I can say I feel happy and I feel as if life is going really well with me and it wouldn’t be if it wasn’t for Partners in Recovery and it’s not just me it’s my two older boys and their wives and their children … if I think of how many people Partners in Recovery has affected I’m going to have to spread it out to the other two boys, their wives, the four granddaughters, my [separated] husband and I guess even friends to a certain extent and you know my brother and sister in law in [city] who have been very supportive of [my son], it’s been a huge effect. “ - Carer T “After 16 years of care PIR is the second time I’ve encountered a group of professionals who get the importance of the person and the evidence of the loved [one’s] experience. The other was a living skills centre (health closed it down in 08).” - Survey carer 2 (from 2014-2015 PIR Annual Report produced by Urbis P/L) We will loose funding for carers. Carer support organisations offer so much more than ‘respite’. The opportunity to meet with other carers with the support of qualified staff cannot
be underestimated. Allowing for illness education (psychosocial) is a vital role that existing carer organisations provide along with opportunities for group and individual support.
The PIR Annual Report for 2014-2015 identified client needs as: Many clients identified multiple unmet needs. Over half (54%) of clients had unmet needs for daytime activities, with a similar proportion (53%) having unmet needs for psychological distress and social life (50%). Two fifths of clients also had unmet needs for physical health (42%), and employment (42%). The Minimum Data Set for this time period also identified that 37% of PIR clients live alone with 31% having less than a year in their current accommodation. Only 6% were employed and 60% identified as having no carer. People with severe and persistent mental illness often fall through the cracks of current service systems. Evidence tells us that the relationship they have with their ‘keyworker’ will determine their level of participation and can be an enormous influence on their sense of hope and belief in their own recovery. People who are confident to access services will need very little help however the more complex client, needs far more support. To assume that these people will access ‘mainstream services’ is assuming a great deal. As no commitment has been made by the Victorian State Government in regard to ongoing funding for psychosocial support for those who do not meet NDIS eligibility, I have serious concerns for the ongoing health and wellbeing of these people.
Current gaps in the NDIS planning for people with a psychosocial disability: The lack of communication with the LAC in the Central Highlands means that we do not know if a client is being assisted by them to complete the plan so we cannot have vital input. NDIS brochures are not readily available. After making a number of phone calls (waiting on a phone line for over an hour each time) and checking the website it appears that publications are not available unless you print the documents yourself. E.g. the NDIS Planning Workbook NDIS impact on the workforce Unskilled/poorly skilled staff, unable to deal with crisis or complexity No supervision, either 1:1 or peer Lack of training Casual workforce with no attachment to the employing organisation Peer Support? All employing agencies need to meet the National Mental Health Standards and hold accreditation against them. Minimum qualifications and skills to work with people with severe and persistent mental illness need to be set.