Parliament of SA, Social Development Committee inquiry re provision of services for people with mental illness under the transition to the NDIS

UnitingCare Wesley Bowden is an agency with a long history in supporting marginalised and disadvantaged communities. It provides a range of social welfare programs including carer support and Partners in Recovery. In addition UCWB is a registered NDIS provider and provides support to NDIS participants with a range of disabilities. Please find below our response to the inquiry questions.

The gap between the Federal Government’s predicted & realised percentages of mental health clients receiving NDIS support;
- It is becoming clear that a significant number of people who are currently receiving psychosocial program support through State or Commonwealth programs will not receive NDIS support but will have substantial ongoing support needs. The full transition into the NDIS Scheme is not yet complete and many psychosocial consumers are still waiting decisions regarding access to NDIS. The early indications are that for many programs only 60% of current clients will be accepted into the NDIS. A number of access requests are being rejected at the first application but subsequent applications providing more detailed information have been successful.
- There are a number of current program participants choosing not to apply to the NDIS at this point in time. This is due to a number of reasons and is most often related to their current wellbeing and other complexities in their lives. Some consumers have started the process of collecting evidence but have then disengaged as other life factors impact on their service engagement, for example deterioration in mental health, drug and alcohol abuse, involvement with police and correctional services. If a consumer does not test their eligibility for the NDIS he/she will not be eligible for any Continuity of Support programs.
- There is currently a long wait (one consumer was told that it could be 9 to 12 months) between planning meetings and the consumer receiving the NDIS plan. There is concern that many consumers of current programs, such as Partners in Recovery, will not have received their plans by the end of June 2019 when the programs will cease.
- Many consumers, and their carers and family members, are experiencing difficulty in providing evidence that the disability is ‘permanent’. This appears to be the main reason for psychosocial consumers not being provided access to the NDIS.
The reduction in funding to the Personal Helpers & Mentors program & Mental Health Respite Carer Support program & the impact this will have on people with mental illness;

Mental Health Respite Care Support

Carers provide a unique role in promoting wellbeing, providing care and fostering recovery for people with mental illness. Carers are a crucial component in any service delivery model. Many find themselves thrown into this role by the onset of severe mental illness in a family member and many continue to provide care due to

the lack of alternative services, particularly accommodation. Carers themselves are at an increased risk of developing mental health issues and the focus of carer support is particularly important in meeting the needs of vulnerable and ageing carers. Carers are aware that there are major changes being implemented to carer services next year by the Commonwealth. This, in addition to the major changes to mental health programs, is causing increased anxiety and distress for carers.

The Mental Health Respite Care Support funding has provided access to information and direct support to carers to maintain their wellbeing and meet their specific needs. This enables them to continue to provide the ongoing care and support to their family member with a mental illness.
The NDIS does not have a broad understanding of the role of carers. The Scheme is currently challenged to meet the needs of participants and it has not demonstrated that the emotional and social wellbeing of carers is a priority. Involvement of carers and families in the NDIS process is not standard and their specific needs not included in planning (this reflects that the plan is for the participant and is based on their needs and not the needs of the carer). Many carers are not aware that their needs may be addressed through the participants plan. Carers programs play an important role in keeping carers informed and supporting the pre planning and planning process. In addition there are number of participants with a psychosocial disability who lack insight and who may not recognise the key role that carers/family members play in supporting them. This means that carers are at significant risk of not having their specific needs recognised and will be substantially worse off than when they were able to access the Mental Health Respite Care funding.
The NDIS access process, collation of required evidence and pre planning require significant effort and carers play a key role in supporting the person with mental illness in achieving this. The carer funding has provided support to carers in undertaking this role and to successfully transitioning people into the NDIS. Without this funding it is unclear where carers will receive the information and assistance that they require.
Young carers are a particularly vulnerable group of carers. Many young carers are caring for a parent with a mental illness, it is difficult to say how many of those may be eligible for the NDIS but it is clear that many will not be. These young carers require an outreach model as many do not identify as carers or may be reluctant to discuss their situation due to the stigma associated with mental illness. Specific funding for this group of carers will cease next year.
Carers are extremely concerned about the future, specifically:
1. What programs and supports will be available for those consumers who are not eligible for NDIS
2. That existing programs will end before NDIS eligible consumers have received their plans
3. How they will access support in the future if they wish the care recipient to access the NDIS
The NDIA ILC funding, both nationally and state based, has not targeted the needs of carers.

Personal Helpers & Mentors program

The Personal Helpers and Mentors program is highly valued by consumers and carers. The program is focused on capacity building and skill development to improve a person’s ability to manage their daily life and reduce their social isolation. The staff have a high level of skills and this is reflected in their engagement with consumers and their ability to identify changing needs and deterioration in mental health.
The reduction in the Personal Helpers and Mentors and Helpers program has had a significant negative impact on some consumers. It has severely impacted on the ability of consumers to manage their daily living and access the community. There are consumers who are now isolated, living in squalor and only having their most basic needs met.

The ongoing requirements for block funded mental health services provided the State Government after the NDIS transition;

Many consumers require direct supports that assist them to maintain living independently, reduce their isolation, connect them to the community and assist them to access employment. Peer mentoring is an important aspect of this. These programs need to be recovery focussed, capacity building and flexible to meet the fluctuating needs of consumers.
Mental health consumers and carers/family members need to be involved in the development of new programs to ensure that future programs meet their needs
There is a strong need for ongoing case management support for consumers with severe and complex mental health needs
Housing instability, homelessness and lack of appropriate housing options is a significant issue for people with mental illness
Current consumers are being provided with both direct support and funding for assessments to complete their access requests for the NDIS. The cost of obtaining assessments such occupational therapy and neuropsychology assessments is significant. The concern is for future applicants with a psychosocial disability who may be eligible for the NDIS but will not have the same access to support and funding to facilitate this process.
There is a demonstrated need for a specific program to support mental health carers and family members
The interface between clinical services and community support programs need to be improved to provide a more holistic approach to supporting people with severe and complex mental health issues.

The effects on South Australians with mental health issues who are deemed ineligible to receive NDIS funding;

Currently many of those consumers are anxious and distressed about what support they will be able to access after the end of June 2019 and it is adversely affecting their mental health. Some consumers have already experienced a reduction in their services (or the service has ceased completely) and this has had a negative impact on their wellbeing. Many consumers value the support that they currently receive and are distressed that this support will no longer exist.

There is confusion about what services will be available from the PHN’s through Continuity of Support and the new Psychosocial Support Measure, and what state programs will look like after the end of June 2019. Both consumers and carers are fearful that the current levels of support will be further reduced.
Carers are very concerned as currently they find it difficult to access services for consumers. With many programs closing at the end of June 2019 they are anxious about what supports will be available both to the care recipient and themselves. Many carers are desperate and find engagement with mental health system frustrating and difficult, this has been well documented. Their concern is that this will worsen for those people not eligible for NDIS, particularly where a person has not tested their eligibility for the NDIS (for whatever reason)
There are emerging specific cohorts such as people with Borderline Personality Disorder and PTSD who are finding it difficult to access the NDIS. This cohort also has significant difficulty in accessing clinical services and community programs. This is a highly vulnerable population.
Without adequate supports there is a risk that there will be an increase in homelessness, involvement in correctional services, drug and alcohol issues and deteriorating mental health. Many people may fall through the cracks and not engage with any services.
It is likely that there will be additional pressure on acute and clinical mental health services if there is a reduction in the real support that people with a mental illness are able to access.

The sufficiency of services provided to people with mental health illness who are accepted into the NDIS;

The length of the NDIS process is causing great concern. The time taken from access request to the planning meeting and receiving the plan is long (most participants are waiting months, some as long as 12 months). This process is increasing the anxiety and distress of consumers. In one example a participant with a psychosocial disability and complex co-morbidities was informed by the Local Area Coordinator that she would receive her plan in four weeks as her needs are urgent. 8 weeks later she is still trying to find someone to talk to about when she will receive her plan. This process has been overwhelming for the consumer and has exacerbated both her mental and physical health. Other participants have been told that they may wait for 9 to 12 months for their plan in which time it is likely that their needs will have changed (and the program support they are currently receiving ceased).
Plans are often focused on core supports rather than capacity building supports. Participants with a psychosocial disability want to have recovery focused goals that increase their skills and capacity to engage in the community, gain employment and live independently. Many plans do not reflect this. In addition many participants need support to understand the plan and work out how it can best meet their needs
The NDIS plans are regularly being developed by Local Area Coordinators and NDIS planners who demonstrate limited understanding of psychosocial disability. The planning tool is sometimes used as a ‘tick box’ exercise and does not represent a person centred approach to planning. The specialised pathway for psychosocial disability has not been implemented in South Australia and this should be a priority
Participants have attended meetings where the Local Area Coordinator or planner did not have the detailed assessments and reports that were submitted with the NDIS access request documents. These reports and assessments often contain useful

information for the planning meeting. In one instance the supports facilitator from Partners in Recovery had a copy of these documents but the Local Area Coordinator refused to read them at the meeting or to take photocopies.

There is concern about the ability of the NDIS to respond to fluctuating need and crisis situations.
A significant number of consumers are not receiving support coordination in their plan - this is a cohort of consumers who are difficult to engage and are highly likely not to be able to manage the NDIS processes once they have a plan. This will place additional strain on carers and family members. The NDIS view of the role of support coordination is different from the type of coordination and case management that this cohort requires. This is causing confusion and concern for participants and their carers and family members.
A high level of expertise is required to provide support coordination and specialist support coordination to people with psychosocial disability. In UCWB’s experience the number of support coordination hours varies significantly even where consumers have similar support coordination needs. It is also UCWB’s experience with other NDIS participants that support coordination is often removed from a participants plan after the first of second year in the Scheme even where the actual need has not changed.

The effects on South Australians with mental health illness undertaking the application process for the NDIS;

The process of obtaining the evidence for eligibility has been overwhelming and for consumers (and carers) has caused great difficulty and distress. Many consumers have been discharged from clinical mental health services or have had no contact for a long period of time so have difficulty in obtaining reports. A number of GP’s are not aware that this population has access to NDIS and do not understand their role in providing evidence. Some GP’s have refused to provide a report or engage with the NDIS process. Consumers have had to participate in a range of assessments which has been stressful and has focused on their difficulties and functional deficits.
Consumers have also expressed concern and frustration that it is more difficult to access support for other issues impacting on their life as the focus of program support has shifted to ensuring completion of the access requests for the NDIS.
The reduction in current program support and the NDIS processes has had a significant impact on the emotional wellbeing of consumers (and carers). Some consumers are angry that they must go through the NDIS access process so that they are able to access continuity of support in the future.
The conflict between the language of mental health services which are focused on recovery and the language of the NDIS which is on permanent disability is causing distress to some participants. A number of consumers have expressed that the focus by the NDIS on their ‘deficits’ has impacted on their sense of hope for the future and self-worth.
Consumers and carers are concerned about where support to access the NDIS will come from in the future
Due to the significant length of time that the NDIS process is taking for people with a psychosocial disability are concerned that existing programs will have ended and they will still be waiting for their NDIS plan

Any other relevant matters.
- There are a number of consumers of existing programs who, due to a range of factors, will not have tested their eligibility for the NDIS by the end of June 2019. This will mean that those consumers will not be eligible for continuity of support programs although some of these consumers will have severe and complex mental health issues and have significant ongoing support needs.
- The current pricing of the NDIS means that there are significant risks for the financial sustainability of the NGO sector. The pricing for core supports does not recognise the level of expertise the support workers require to provide quality support to people with psychosocial disability.
- Current programs will be ceasing and already we are seeing a drift of the workforce as they try to secure new employment. People with a mental illness require a skilled and experienced workforce to provide capacity building, goal focused supports both within the NDIS and in future psychosocial support programs.

Thankyou for the opportunity to participate in the inquiry.

Angela Bruce

Executive Manager, Ageing and Disability Services

UnitingCare Wesley Bowden

29/10/2018