Information for families – Preparing for the ‘New System’
The following points have been compiled by carers and whānau about preparing for the ‘new system’.
Understand the EGL approach
1. Understand the EGL approach and principles – and how to apply this in practice.
2. Don’t assume providers and/or the workforce are aware of the EGL principles.
3. Disabled persons and whānau can use the EGL principles as a lens to look at the different supports and services they connect with, (ie. self-determination – are disabled people in control of their lives and how does the provider support this to happen?).
4. Disabled persons and whānau can use the EGL principles as a way to evaluate supports and services.
Knowing what I want
1. The disabled person and whānau need to be clear about what they want. It is no longer about ‘units’ but about the life people want.
2. Disabled persons and whānau need to be aware of what the funding can pay for – what’s in/out of scope or funded by another Ministry? For example, paying for living expenses is out of scope. Everything else is possible – if it is not illegal it’s up for discussion!
3. Start thinking about what might work best for you and your family member? Get clear on what you want/don’t want. Think outside the box. What do you want life to look like?
4. Spend some time thinking about how you can describe yourself and your situation to others. Get your son or daughter to think about what strengths they have, what they like to do and what is important to them? Think about what a “good life” might look like. Try to identify the things you would like to see happen and how it may happen? Dream big!
5. Think about if you want to work in with others (ie. building a purpose-built service/home for one or more people).
6. Consider the types of things a service/organisation could do to make your life easier.
Understanding my options
1. Know you can employ someone to do everything for you – or choose to do it yourself (ie. total self-management – refer to purchasing options above).
2. Understand you can choose what supports will look like (what would best suit my son/daughter and family)? You can create something unique for your family member (based on what they want) or stick with what you have. This may involve one or more providers.
3. Understand you can employ your support people, or get someone else to do that for you.
4.Understand that if you are unsure about how to do this or need additional advice you can choose a Kaituhono/Connector to walk beside you to help you develop a plan and figure things out.
5. If you need additional training/skills you can seek funding from Mana Whaikaha’s Capability Fund (if living in MidCentral) or through Te Pou (refer above).
6. Look at your options carefully, understand the upsides and downsides, ie. using multiple providers might increase the amount of administration (multiple invoices).
7. If you have an agreement with a provider you can make decisions about what accountability you want from them.
Staying informed and being heard
1. Stay informed and have your say – know how to provide feedback and where to get up-to-date information (ie. EGL, Mana Whaikaha, Ministry of Health and Office for Disability Issues websites).
2. Think about what you need to know and the ways that information is best made available to carers/family/whānau in your region.
3. Connect with other carers/family/whānau to make sure your collective (or individual views) are heard and understood.
4. Be pro-active and ask questions.
5. It will be important to be able to communicate what you want effectively, there are some good resources on the Care Matters website about this or think about attending a Care Matters workshop in your area, and ask for one of the topics to be on ‘effective communication’.
Taking on leadership roles
1. It will be important to inform and equip local families to be local leaders, particularly as System Transformation is rolled out throughout the country (ie. look at what skills you have or need to develop – look for training (ie. SAMS provided family/whānau with facilitation skills training in MidCentral).
2. Be aware of how you can influence, advise and safeguard the new approach.
3. Be aware of the leadership roles within your local region, what your involvement might be and how you might contribute.
4. One way to ‘safeguard’ the new approach is by having disabled persons and whānau in key leadership positions, ensuring the transformed system upholds the EGL approach, principles and values.
5. It is important we all become partners and work together to build good lives and great communities (ie. the disabled person, whānau, providers and government officials).