1. Tandem – Peak Body for Mental Health Carers in Victoria
NDIS Panel Healthy Minds Expo 18 October 2016
Gisborne
Emma McGoldrick NDIS Project Officer
P E
Begin by acknowledging the traditional owners of the land the Wurundjeri people of the Kulin nations on which we meet and pay my respects to elders past, present and future who might be here today.
I also want to acknowledge the amazing contribution of carers as part of Carers Week
The economic contribution of informal carer to family and friends in Australia during 2015 was estimated to be $60.3 billion. This is what it would cost if services provided by family and friends were to be purchased from formal service providers.

2. Who are Tandem? The peak body for Victorian Mental Health Carers.
Who is a mental health carer
A carer is someone who provides unpaid care and support to a family member or friend living with mental health issues.
We advocate for
Involvement in planning and care
Participation in system change
Support for families and carers.
We are part of
The DHHS NDIS Transition support team in Victoria
Tandem promotes and advocates for family/carer involvement in treatment and recovery of people experiencing mental health difficulties, family/carer participation in planning, delivery and evaluation of mental health services and appropriate support for families/carers.
You can become a member of Tandem at no cost f you are a carer or have been a carer in the past, are a carer network or support group, an organisation with a significant mental health carer focus or a worker from a program that supports mental health carers.

3. What is the NDIS transition support team?
Tandem is part of a transition partnership with the Victorian Government and has received funding to support people with psychosocial disability, their families/carers, and service providers to transition to the NDIS in the early stages of the roll out.
Tandem is partnering with mental health carers, people living with psychosocial disability, and services in the earliest roll out sites – North East Melbourne Area (NEMA) and Central Highlands – to ensure mental health carers have access to the information and resources needed to prepare for the transition to the NDIS in order to achieve the best outcomes for the person they care for, themselves and their family.

4. The caring role has significant impacts on mental health carers
While we acknowledge the positive effects of caring on carers, mental health carers face particular challenges:
They have poorer physical health and wellbeing and are at risk for anxiety and depression.
They can be more socially isolated because of stigma, the pressure of the caring role and the strain on family and other relationships, and they can be reluctant to access support because of stigma.
They can be impacted financially. Lower labour force participation rates and lower incomes (ABS 2012).
Mental health carers need support and information to sustain their caring role and maintain their health and wellbeing.
In a 2012 survey of mental health carers conducted by Wesley Mission 71% reported a deterioration of their health in the previous 12 months as a direct result of caring for someone with a mental illness and a further 78% reported that their physical and mental health deterioration more substantially when the person they cared for had been unwell in the past 12 months.
It is well documented that families seek out information about mental illness and look for support to develop coping strategies, problem solving skills and to overcome the sense of being overwhelmed, frustrated, and alienated from friends and family members who would normally provide support (Dixon et al, 2004). In addition, families need interventions that overcome their higher rates of depression and anxiety than the rest of the population (Stephens et al. 2011)

5. How does the NDIS support families and carers?
While the focus of the NDIS is the person with psychosocial disability and what they want to achieve, and carers cannot get an assessment of their own needs or an NDIS plan, the NDIS understands that supporting carers and sustaining informal support is an important part of meeting participants needs.
The NDIA will provide carers with information, referral and linkage to ensure they are able to access supports in community, which includes courses and peers support groups to assist in their role.
The NDIA will provide reasonable and necessary funded supports in a consumer’s plan which may have direct or indirect benefits for families and carers.

6. Eg.
Support worker to take the person to a peer support group which also gives the carer a break
Support worker to support the person to be more independent in the home e.g. preparing a meal or helping the person to go out in the community on their own or getting a job so they are less reliant on the carer
Occasional care for the person which has a respite effect for families and carers by providing a break from the caring role such as overnight assistance with self-care, assistance in a host family or alternative family situation, short stay in a group home. The amount of carer that can be provided generally ranges from 7 days up to 28 days level 1 to 3 depending on need. Can access higher level of support depending on circumstances
Training for family members in how to care for a person with a psychosocial disability or in how to manage certain difficult behaviours.
Family counselling
Carers might also benefit from the person getting assistance with transport to access the community and with support coordination to help put NDIS plan into action.
Note: The supports in the NDIS are not called respite but some of the supports that can be funded may have a respite effect for carers.

7. In deciding funded supports for a participant, the NDIA planner needs to consider what is reasonable to expect families, carers, informal networks or the community to provide.
 See the Operational Guideline – Planning; Sustaining informal supports and the NDIS supports for Participants Rules for further information about the issues the NDIA considers in determining what is reasonable to expect a carer to provide.

8. Carers can access supports outside the NDIS
The Local Area Coordinator can provide information and referral for people who are not eligible for the NDIS, their families and carers.
It is expected that support for carers and families may be available under Information, Linkages and Capacity Building (ILC).
Continuity of support arrangements. No one will be disadvantaged in the transition. The Government are still determining what these arrangements will be.
Programs like National Carer Counselling Program (Carers Vic) and Better Access to Mental Health Care Program (via GP Mental Health Care Plan).
The ILC commissioning framework is due for release and is expected to provide further clarity around supports that may be available for carers and families.

9. Mutual Support and Self Help Program
Mutual Support and Self Help Program. Funding for this will continue until a decision is made about where this fits in the NDIS.
National Carer Gateway.
Young Carer Program. Indirect respite, educational support, information and referral is not transitioning into the NDIS.

10. Some of the key issues for mental health carers (feedback from trial sites )
The experience of carers in the trial sites has varied significantly. (Laragy et al literature review 2015; Mental Health Australia and Carers Australia Issues paper 2016; anecdotal information from carers in Barwon; Psychiatric Disability Services of Victoria 2015.)
Positive experiences
Positive flow-on effects for carers through improved support to the person they cared for. They noted improvement in the quality, value, and flexibility of support they received. This benefitted carers themselves, including the ability to return to work, and reduced stress and financial pressure.
Some carers also reported positive experiences working with planners. They built good relationships that supported an understanding of the person and carers needs.
Positive flow on effects: After seeing their middle aged son receive an NDIS plan two elderly parents have been relieved of the emotional pressure of actively seeking supports for their son. He is now attending group activities again after a two-year break because he was initially deemed ineligible for a package. His social network is widening again and his parents are starting to pursue some of their own interests after being preoccupied with his needs for such a long time.

11. Identified concerns
The level of involvement of carers in planning, and consideration of the caring role has varied across trial sites.
Many report not being aware that they could provide a carer statement or request a separate conversation with the planner.
Carers have reported difficulty obtaining clear information about supports for carers that can be included in participant plans, especially respite.
Carers are concerned that respite and peer support programs they rely on to ensure the sustainability of their caring role will exist in the future. (Mental health Respite: Carer Support Program and Young Carers Program Direct Respite are confirmed to be transitioning to NDIS).
Also concerns about where support can be accessed if the person is not eligible for NDIS or declines to engage.
Negative 1. Carers often need the option of having a separate conversation as they report difficulty speaking about the person’s support needs and the support they provide when they are at their worst in front of the person they care for about and the impact this can have on their wellbeing and mental health. Experiences of planning process varied depending on planner they encountered.
In some cases, issues with consumer consenting to their involvement because of the impacts of the psychosocial disability on their understanding of their condition and the support they need and receive from their carers.
Negative 2. Additionally, there is no assessment of carers needs in the NDIS and the carers needs are viewed from the perspective of the participants needs and goals and this can be a barrier to accessing support. While some carers report they have access to more respite, others state they have less. During the trial in Barwon Families and carers consistently commented on the absence of services available for them in the NDIS and on the lack of sensitivity to their role in supporting the participant.
3. Whether they will be able to access respite through the NDIS plan or what they will access if they need additional supports to what is provided through the participants plan ad what respite will be available for carers of people who are not able to access the NDIS. Also concern if carers will be able to access respite in the way they do currently. Mental Helath respite: Carer support program provides flexible respite supports to assist carers and families to maintain their caring roles and their own wellbeing including carer support with access to brokerage to support the carer to have a break while connecting with peers engaging in an activity that will improve their wellbeing and address social isolation such as walking group with peers. This supports carers with a range of their needs, not just the need for a break. Concerns supports through NDIS likely to be limited and focussed on participant.

12. How can carers get the best outcome for the person they care for, themselves and their family
Carers can support the person they care for in accessing the NDIS
The guide for mental health carers is a great resource to help carers prepare for the NDIS, what to think about and do as carer.
Carers can communicate their own/families needs to the planner
Carers can provide a carers statement. This can be written or verbal. It is not compulsory and there is no template available for a carers statement.
Carers can request to have a separate conversation with the planner if they are not comfortable talking in front of person they care for.
Carers Australia has developed a checklist for mental health carers which may be useful in working out what you want to tell the planner in the carer statement.
checklist: It can be hard for carers to identify and describe what they do to help the person, particularly because of the episodic nature of mental illness which can result in unpredictable, varying needs for supports. Carers may wish to include information about what they do to help the person on their worst days, the impact on the carer and family, what the carer wants to happen in the future and any other responsibilities and goals or life plans the carer may have as well as other friends and family who provide support.
Carers Australia also have a program called the Carers Australia Peer Conversation Project and can connect carers with other carers who have helped the person they care for to access the NDIS and have a range of resources available including videos with carers sharing their tips for accessing and navigating the NDIS.

13. How can services support carers and families in accessing and navigating the NDIS
International research into the implications for family carers of individualised funding and early experiences in the trail sites highlights that the inclusion of carers in the planning and delivery of supports for the person they care for contributes to better outcomes for the person with mental health issues and their carers and family.
How can Tandem best assist
Tandem is keen to work in partnership with services to provide information and resources to help carers prepare for the NDIS, particularly what they can expect, and provide recovery-focussed, specific pre-planning support to think about their caring role and build confidence to communicate their role, and their needs to the NDIA.
Tandem will continue to be involved in system advocacy and awareness raising about the needs of mental health carers in the transition to the NDIS to ensure they are not disadvantaged.
It’s important that carers are identified and included in the assessment and planning process and services can play a role in this. Carers also need to be equipped with the confidence and the skills so that they can have a proactive role in the NDIS.
Tandem is developing tip sheets for mental health carers and exploring the use of an online platform to answer questions.
Tandem will advocate that mental health carers are involved in the NDIS as planning partners and have access to the supports they need to sustain their caring role and improve their own wellbeing as well as and support needed to effectively navigate the NDIS to get the best outcome for the person they care for and themselves

14. Contact details for Tandem NDIS Team
The Tandem NDIS Team is keen to hear from mental health carers about your experience with the NDIS – either positive or negative – or just have a general question. This will help to ensure information about the NDIS is tailored to the needs of mental health carers.
Contact details
Please contact the NDIS Team with any questions or concerns.
Emma McGoldrick
(03)
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