Carer NDIS information session Kerry Golding Introduction Thank you (insert host organisation) for the invitation and opportunity to present today about the NDIS and how it will impact on family carers and friends supporting participants. Presentation provides general overview of the NDIS, with focus on impacts on families and carers, and was sourced from the NDIA (National Disability Insurance Agency) and other government sources. Questions – aim to have some time at the end, but burning questions can be asked during presentation. I am not employed by the NDIS, so may not be able to respond to some questions, particular those relating to your unique caring situation. These questions are best responded directly by the NDIS – details provided at the end of this information session.

How is Carers Victoria involved ? Carer Counselling Services Carer Advisory Services Online Services CARERS VICTORIA Policy & Research Services Education Services How is Carers Victoria involved?   Carers Victoria is not linked to NDIA directly, nor involved in providing support packages. NDIA alone plans and funds support packages. Carers Victoria is the state-wide, not-for-profit organisation providing carer advice, information and support to assist carers. In relation to NDIS, we provide carer support services, under our core business areas: Our Policy & Research Services works with politicians and policy makers to build awareness of carers’ needs and issues in relation to NDIS. Our Carers Advisory Services provides information, support and referral to carers via our free-call number. Our Carer Counselling Services provides carer-specific counselling. Online Services provides NDIS regular updates to carers and service providers via our website: www.carersvictoria.org.au; Voice: latest carer news and issues; Facebook; Twitter; Everything Carers www.everythingcarers.org.au Our Education services delivers a carer-specific program the explores the current changes in the support systems. The aim of the program is to assist carers with NDIS plan preparation. Copies of the Program Outline and an Expression of Interest sheet are available today to indicate your interest in participating in this program. We have a program running in August starting on 15 August on a Tuesday

Carer's Recognition Act 2012 A carer should- Be respected and recognised as someone with special knowledge of the person in their care • Have their social wellbeing and health recognised in matters relating to the care relationship Respected as an individual with their own needs Be supported as an individual and as a carer, including during changes The Carers Recognition Act 2012 formally acknowledges the important contribution that people in care relationships make to our community and the unique knowledge that carers hold of the person in their care. Organisations have to: • be staffed by people who understand and comply with the Act • inform those in care relationships about what the Act means for them • treat people in care relationships respectfully • reflect the Act principles in their planning and how they support people

The National Disability Insurance Scheme Act 2013 (NDIS Act) • The age and capacity (or ability) of their carer, and whether they can keep caring in the same way. • The amount of care they provide, the type of this support and whether it is reasonable for the carer to do these tasks. • Any risks to the wellbeing of any family members or carers in carrying out their caring role. when the NDIA makes decisions about what supports they will fund for a person with a disability, they must ensure that this support is sustainable. This means they need to consider what is reasonable to expect families and carers to provide and what the NDIA can do to ensure that this support can be provided on an ongoing basis. NDIS rules, which specify how the scheme works, include instructions to NDIA staff that relate to carers. The NDIA planner must consider: Age & capacity (or ability) of the carers, and whether they can keep caring into the future. The amount and type of care they provide and whether it is fair for the carer to do this. Any risks to the long-term wellbeing of any family members or carers in carrying out their caring role, ie. NDIA doesn’t expect a child to care for their parents or siblings or to miss out on going to school because of their caring role.

`Respite – like’ effects Decision making, planning and budgeting What about support for the carer? trraubub Group/family therapy `Respite – like’ effects What about carer supports? Carers are not participants of the NDIS and won’t receive a separate assessment or individual funded support packages. However, the participant’s plan may include supports that assist carers in their caring role, which include: training for carers in how to care for the participant or in how to manage certain difficult behaviours group or family therapy assistance with: decision making, daily planning, budgeting and life transition planning; and ‘respite-like’ effect supports. Supports that create a ‘respite-like’ effect for families and carers from their caring role, includes: Overnight assistance with self-care Assistance in a host family or alternative family situation Short term accommodation and assistance in a centre or a group residence Specialised home based assistance for a participant in order to sustain informal supports. Training Decision making, planning and budgeting

Support available for the participant from the NDIS that will benefit the carer • Assistance with daily life - assistance with developing skills in domestic duties around the house • Help going to appointments and activities - transport - support worker - transport training • Supports that increase the participant’s independence - financial counselling - accommodation The respite effect is the carer benefiting from the participant receiving supports This gives the participant a chance to maybe move out from living with the carer, giving the carer a chance to have space and independence from the caring role- Time out This can be either transport training or with a support person giving the carer a chance to pursue their own needs or aspirations Taking the stress out of the carer having to be involved in organising or supporting the person to attend social events Allowing the carer to have time to spend with family, friends and building the relationship with the person they care for that does not involve managing these responsibilities.

Can carers go to the planning session? YES NDIS participants can choose to bring anyone they want to the planning meeting with the participants consent. The carer can also bring someone along to support the carer If the participant does not want the carer to be present. In some circumstances, carers may be allowed to have a separate discussion with the NDIA about their caring role. This includes carers, family members, friends or a paid support worker The Operational Guidelines which are designed to assist the NDIA in making decisions include recommendations about involving carers in the assessment and planning conversation. In some circumstances, carers may be allowed to have a separate discussion with the NDIA about their caring role. This will depend on individual circumstances such as the age, impairments and support needs and of the participant, whether their permission is required, and if the NDIA thinks it is appropriate for carers, family or others to be involved. Also it may not be appropriate to detail in front of the person with the mental health condition what is involved in caring for the person with the mental health condition

What is the Carer Statement A Carer Statement (in written or verbal form) may cover the following information: Who else is involved in the caring Your goals which impact on how much caring you are able to give What does the NDIA need to know about the person Impact on your own health and wellbeing Whether you are willing and able to keep going in your caring role Who else is involved in the caring (e.g. other family members or friends who also provide support). There may be young carers in the home or other people who are impacted by the mental health condition Your goals which impact on how much caring you are able to give As a carer you have your own goals and aspirations and may be wanting to do something for yourself given the participant maybe accessing more supports what does the NDIA need to know about the person Are there behavioural issues that the NDIA may need to know, that the doctor would not know and pass on. You are the carer that is there when the front door closes. any impact on your own health and wellbeing Is there any ongoing physical health or mental health that has been impacted by the caring role or can impacted on how much care you are able to provide whether you are willing and able to keep going in your caring role What you are able to do now may not be possible in the future or what you are doing now is affecting your health and well being how your caring role changes when the care recipient is relatively ‘well’ versus when they are unwell The carer statement will be included in the final plan, so the participant will know that a carer statement was provided. My advice is to have a conversation with the participant about what you are going to raise e.g the impact of the caring role on your health. If there is anything that you do not want the participant to know about maybe you could check if they have a key worker if these issues will be covered in the information they are going to supply.

Preparing for the NDIS Mental Health Carer Checklist Help you think about what you will need to tell the NDIA Guide for Mental Health Carers Available at: Carers Australia (www.carersaustralia.com.au) and Mental Health Australia ( www.mhaustralia.org ) NDIS first plan conversation Tips for Mental Health Carers, families and friends Tandem (www.tandemcarers.org.au)

Suggestions for mental health carers Arrange support for the planning meeting Ask for support Talk with the person you care for about why your involvement is important • Talk to the person you care for about what will happen when they are unwell. Attend NDIS information sessions or programs- Carers Victoria run NDIS programs and information sessions Pre-planning is the key Most importantly don't let the NDIS cause you too much stress

Kerry Golding | Carer Community Educator