Transformed disability system kicks off

By Jacqui White

Every person with a disability in the Midcentral Region, (the area around Palmerston North) on October 1 became part of the newly transformed system 'Mana Whaikaha' based on the Enabling Good Lives (EGL) approach. The principles of EGL say that disabled people and their whānau can choose to increase the choice and control they have over their lives and supports. It’s been something that disabled people and their families have wanted for many years and the process to see this new change come about has been led by disabled people and their families. Over recent months in Canterbury, a Regional Leadership Group for Enabling Good Lives has been elected. It is made up of six disabled people, three family representatives and three provider representatives, as well as representation from Mana Whenua and Pasifika peoples. Our role is to prepare disabled people and families in Canterbury for the system transformation that we hope will be coming to our region in the next few years. Currently in Canterbury, it is just school leavers who can have the benefits of more choice and control over their support services. But once the new system begins in our region, every person with a disability and their family will be able to increase their choice and control over their lives, supports and services if they would like to. We all have different experiences in finding out about and using the supports that are needed for you and your family to live a good life. Maybe you have found that the capability built into you by the disability support system is mainly to just tell and retell your worst day over and over again in the hope you might get some funding to use – only within the particular rules of how that funding can be used. Maybe it has been hard to find out what is available. Maybe you have had the opportunity to develop your secretarial and form filling skills as you have sought to tick all the boxes with the relevant government agencies. There will be some changes within the new system that will provide a different experience for families. Firstly, at the point of diagnosis, families will be welcomed into a supportive community where their hopes and aspirations can be developed in their family life through the types of supports that they choose. By having a ‘Connector’ of their own choice to walk alongside the disabled person and the family, they will have easy access to information when they need it and in a way that makes sense to them. The connector helps the person and their family to find out all that is available as well as help in thinking of ways that the family’s own strengths can be best used to raise this child. This connector will liaise with the funding team made up of those representing the various government ministries and those making the funding decisions.

The disabled person and their family can decide the ways that the support is going to be most helpful as well as who is going to provide it. There are a huge range of choices, including to manage all of this yourself, or have the support of an agency to manage employing people and paying for supports. Mana Whaikaha is the name of the newly transformed system in the Midcentral Region. You might like to have a look at their new website, www.manawhaikaha.co.nz or Facebook page facebook.com/ManaWhaikaha. The system transformation is being established as they go, using a try – learn – adjust model. The Whānau Representatives on the Regional Leadership Group plan to keep on meeting people and building our database, so that we can begin to communicate with you and give you the opportunity to let us know your ideas so we can feed them to the Regional Enabling Good Lives Leadership Group and onto the National Group. Please contact us on our email: canterbury.family. rep@gmail.com. We have a monthly email update to keep you up to date on what is happening in Canterbury. Jacqui White is one of the whānau reprentatives on the Regional Leadership Group in Canterbury. “Disabled people and their whanau can choose to increase the choice and control they have over their lives and supports."