HOW TO NAVIGATE THE MAZE OF BENEFITS AND SERVICES Families with a child with Down syndrome in many cases face a lifetime of navigating Government departments and agencies to receive the support they need and are entitled to. Editor COEN LAMMERS makes an attempt to point you in the right direction. Dealing with the Ministry of Health (MoH), Ministry of Social Development (MSD), Ministry of Education (MoE), and their off-shoots can be difficult, frustrating, infuriating or even traumatic. Having a child with a disability creates additional pressures on families, but those organisations and officials that are supposed to support your family dealing with unorthodox circumstances often only add to the stress levels. Social media groups are overflowing with endless horrific examples of parents having to fight for what they are entitled to. Many dread the face-to-face encounters with officials at WINZ to talk about benefits, or MoE staff when fighting for teacher aide funding in Individual Education Plan (IEP) meetings. Many simply give up and forfeit what they are entitled to and sometimes desperately need. Trish Grant is an experienced advocate for IHC and has seen every scenario of this state-inflicted trauma first-hand. “Families are dealing with a complex maze of entitlements,” says Grant, whose organisation is working on a new digital tool to help families n av i g a te t h e d i f fe re n t d e p a r t m e n t s a n d entitlements. “At the moment it is impossible for any family to find their way with the information available
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from the Ministry of Health, MSD or any other Government department.” Grant says that the system is even difficult for those who are dealing with it on a daily basis. “One pediatrician once put up a slide at a conference to show the pathways to funding and services, but you’d have to study it for hours to make sense of it. It was the most bizarre slide.” The IHC advocate also recalls a recent court hearing to secure a Family Carers Benefit, in which the attending magistrate described “the Ministry of Health funding policy as impenetrable”. So if you think you are struggling to make sense of it all, you are not alone. “It is still a maze for people to get through, especially for new parents.” Grant says that most parents find out what they can get through word of mouth. “That’s why groups like the NZDSA are so important where parents can share information with other parents to find out about financial support or what is on offer as far as support services,” says Grant. Thankfully, Government agencies are recognising that they need to make accessing supports easier for disabled people and their families, and the primary examples of this is Individualised Funding, Enhanced Individualised Funding and the Enabling Good Lives (EGL) approach. Individualised Funding, Enhanced Individualised Funding and the Enabling Good Lives approach provide disabled people and their whānau with more choice and control in their lives, offer more flexibility and provide more opportunities to make decisions about how to use the funding to suit the needs of the disabled person and their family. EGL started in 2011 as a partnership between the disability sector and agencies aimed at long
