South Australian mum Katrina wrote about her experiences accessing the NDIS on behalf of her young son Riley.
I write this not as a deaf consumer but as a mother of a deaf consumer. My two and half year old Riley is deaf and has been a National Disability Insurance Scheme (NDIS) consumer since he was six months old so we have been accessing NDIS since Day One of its launch. We are in Adelaide, South Australia which is one of the trial sites for NDIS for children.
Registering Riley happened very quickly. I filled out a couple of forms and made an appointment with the planner for the following week. A typical planning appointment will involve discussing your relationships and supports which includes your day to day life – where you live and with who and what you like doing. Your aspirations and goals are discussed – what you want to achieve, how you will achieve it and how this can be evaluated. This is where you have to be very clear on what you need to become ‘equal’ with your peers, whether it be resources or interpreting hours. You need to be able to articulate what your goals are and how you can achieve those goals with the funding available.
When I met with the planner, we focused more on the long-term goals because of Riley’s age. The planner we met with was lovely and very accommodating but she had no experience with deaf people prior to meeting us. When we discussed Riley’s goals, I often had to give her background as to why it was important or relevant although one big thing I will credit National Disability Insurance Agency (NDIA) for is always being willing to book an interpreter or provide any other support that’s required.
The long-term goals that we agreed on with the planner was for Riley to have full access to any community or recreational activity of his choosing, to be completely bilingual in Auslan and English and have access to resources to enhance that.
I opted to self-manage our funds, so I did not have to deal with organisations directly. I agreed to request funding advances and purchase the equipment and services myself.
Through NDIS, we have been able to access an in-car video monitoring system for when Riley was in a rear-facing car seat, an iPad (an important note is that when you gain access to an iPad, it technically belongs to NDIA and you are borrowing it for as long as you/your child has a disability) and resources – we got some posters and Auslan DVDs with this funding. After a year, we had a plan review and obviously our situation had changed a bit with Riley getting older.
With our first plan review, we added on funding for interpreters that we used for Riley’s transition into childcare and Kindergym as well as a visual doorbell and receiver. Our second review was similar however we did include transport allowance for when Riley starts attending Kindy at Klemzig, which is 45 minutes away as well as funding for parent training if there is a course that I feel would benefit me in educating Riley better.
There was a Citizens Jury a while ago, where chosen members of the public came together to hear about NDIS, from the agencies involved as well as people with disabilities. They wrote a series of findings and recommendations; there was something that one man said that has stuck with me. He said that those with a strong support system succeeded in navigating NDIS and utilising their plans and those with no strong support network didn’t fare so well.
How can we ensure that ALL deaf people in Australia get the support they need? Not just putting the plan together but ongoing support throughout? How can we ensure that they have full access to the information they need? We definitely do have access to a large number of deaf people but what about those that we do not have access to? How can we ensure that NDIA are better equipped to meet and plan with deaf people? This is something that we as a community as well as peak Deaf organisations need to focus on.
Article courtesy of Paul Heuston, ASLIA.