So how do you fix the NDIS? We asked Association for Children with a Disability CEO, Karen Dimmock, to make some suggestions. With the help of ACD families, this is her list.
Every time I’m at the children’s hospital I think of the families who worked so hard to make it better for children like mine.
ACD began as the Action Group for Disabled Children back in 1980. Parents of children with disability came together because they knew the system, and they knew how to make it better.One of their first actions was to improve the children’s hospital. They wrote letters, met with hospital staff and spoke to relevant Ministers and MPs. Slowly the changes they suggested were implemented. Parents were allowed to stay with their children overnight, spaces where families could make a cup of tea were created, hoists were put in toilets. What I take for granted now, is because these families spoke up.
Just like those who knew how to make hospital stays better, families with children who are NDIS participants know how to make the NDIS better.
As families we spend a HUGE amount of time ringing around finding service providers, setting up service agreements, researching and buying assistive technology, approving payments, managing the budget and getting reports. Often we are not sure if we are doing it right, and the workload can be overwhelming.
So we asked families what would make the NDIS work better for them. The answers were insightful. The suggestions were both practical and big picture. We have shared these with the NDIA and the new Minister for the NDIS. We think this makes a pretty good list of things for them to get started on. This is what would make the NDIS better for children:
Get rid of primary disability. My child is autistic, has low vision and is hard of hearing. Just focusing on his autism does not look at him as a whole person and all his support needs.
Provide more core support. There is too much focus on capacity building and not enough on supporting the rights of children to inclusion. Give our children an ordinary childhood, the chance to have fun, dance, play footy and go to scouts. Don’t just focus on disability-specific groups but provide Support Workers to help them join mainstream activities. Support workers are gold and we need more. They give our children the support to plan and have fun and build independence, they help implement therapy goals and they enable families to continue to care. We are desperate for more core support. The lack of respite is devastating.
Clarify parental responsibility. I need more support but they say this is parental responsibility. The subjective use of parental responsibility is shocking.
Make the Plan Review process easier. The time it takes to get reports is crazy. If you miss something and don’t get the right evidence, your child’s plan can be cut. The NDIS should teach therapists how to write reports. Don’t expect families to do this. Use what evidence you already have about my child!
ACD is the leading advocacy service for children with disability in Victoria and has been speaking up for children with disability and their families for more than 40 years. For more ideas from families, read the report Our Hopes for our Children and the NDIS acd.org.au
In addition to being the CEO of ACD, Karen Dimmock is the mother of an NDIS participant.