Anonymous – 07/10/2021

My son has been a participant for the past 4 years. We have found NDIS difficult to understand and navigate. Unless you have good support coordination and understanding of services and clear goals, the system can be very biased and unfair with the distribution of services. There needs to be a better way forward so it is inclusive and not discriminatory. It has only been our recent change in support coordination services that we feel we are now with a provider who understands my sons needs and recognises issues with the goals. The person who did my sons plan 2 years ago refused to rewrite my sons goals, so we did not have services provided and we had to fight for them. We were also not guided towards obtaining a functional capacity report for my sons disability, instead being told by the planner that his brain isn’t developing at 22 years of age so he wouldn’t benefit from an OT. If we were given better management from the beginning, trying to get the services and equipment he needs wouldn’t be such a battle. There should be clearer guidelines as we find the services and provisions are difficult to navigate. We are told by some we can have it and by others, we can’t have.. we are told by some we can do it and by another, we can’t do it. There seems to be too many variables and laws for some and not others. Respite is a hugely grey area.. we are only just beginning to navigate the service and what we can and cannot have. Respite is not a one size fits all. Inclusion does not just mean respite in an institution or respite house. Respite should also include trips away from home, that provide new experiences. People with Autism like my son tend to be reclusive and social respite and travelling is what he needs as he has no other outlets to explore this, so please do not change travel as a part of respite and please continue to enable people with disabilities to go interstate for respite trips with support workers so they can obtain confidence and new experiences in life. Support workers also provide a means for disabled people to become more active participants in their community.