Hello, my name is Debra Werrett and my husband Neil and I care for our son, Billy who has a severe intellectual disability. Billy is now 19 years old and was born with a brain disorder. He has uncontrollable epilepsy, vision impairment and limited mobility so relies on a wheelchair to get around. Billy hasn’t any form of communication and severe cognitive impairment.
We have cared for Billy all his life and negotiated through the maze of services available from early intervention , special schools and now adult day disability services. It seems that as your child gets older, services diminish and you have to fight harder to access the funding required for your young adult to participate in the community. We as parents are getting older as well and worry about what will happen to Billy if we become ill  and  further down the track, when we die.
One of our main concerns is that of respite and supported accommodation. We live in Gisborne, 50 kms from Melbourne in the Macedon Ranges. Respite and supported accommodation options are both limited and we would hope with the introduction of  the National Disability Insurance Scheme (NDIS)  that these two areas would attract  an appropriate increase in funds
I’d like to cite one example of our dealings with the current DHS system regarding our son’s transition into the Futures For Young Adults system. Even though Billy was assessed as having extremely high special needs and being at the high end of the scale, his funding was not enough for him to secure one on one funding for his program at the daycare facility we had chosen for Billy to attend 4 days per week. We were devastated at this news and had to then expend extra energy and resources canvassing our local member, getting extra documentation from our GP and writing more letters to our regional DHS office.  We were informed that Billy was on a    waiting list and  no one knew how much state government funding would be allocated or when this would occur.  So I think the new idea of NDIS funding coming from the Federal government budget therefore ensuring  more permanent funding would make it a lot easier for us and other families in similar situations to be able to plan ahead.
I have read the Draft Report for the NDIS and I;ve found it to be very comprehensive and think it is a positive step forward  and will radically change the Disability sector for the better.
I think the final report should be accepted  without delay so the pilot program can begin out in the community and subsequently any problems identified and fine tuned as needed. It is now time for action. Our time is fast running out and the NDIS is our best option in a very long time to improve our lives and ensure a better future for our son, Billy when we can no longer care for him.

Yours truly,  
                        Debra Werrett.