10433 – Individual submission

Parents and carers

We are providing this submission as parents and full time carers of our 28 year old son who has severe multiple disabilities. Our son lives with us and requires 24 hour care. We had been waiting for years for the NDIS to arrive. Our son’s first plan commenced in August 2018 and he is now into his second plan which we decided should only be for 6 months, so that any changes that might arise can be instigated it a quicker way, rather than through a review process.

Our experience of trying to understand and work through the NDIA paperwork and hurdles that seem to crop up continually, has not been a good or happy one. The initial planning meeting appeared to go well, but we were not provided with a plan implementation meeting with the LAC and our support coordinator also became uncontactable. We were therefore left uninformed about what the plan budget lines could be used for and what services would be covered in each category.

A main goal of our son’s plan was to ‘investigate and if possible move into supported independent living…’. However this proved difficult to instigate and progress because of the inadequate budget for the necessary accommodation related assessments for SIL/SDA. We ended up paying out of our own pockets, some of the therapy our son required, so that there would be enough funds available to undertake the necessary reports. We are angry and frustrated at the need to provide detailed functional assessments for our son, who is obviously at the very severe end of disability. This money could be better used to provide direct therapy that would assist him. The first housing assessment report written by a Developmental Educator, was not acceptable to the NDIA and therefore $2,500 funds were wasted. At that point we called a meeting with the NDIA that resulted in a better second plan and for the first time we received good advice about what we needed to do. Two months later into the second plan, we are still completing a second round of the functional assessments. All to assess a man whose severe disabilities have been well documented for years.

Trying to find the appropriate health professionals to undertake these assessments has been difficult as the majority are at full capacity and not taking on new clients. Added to this is the lack of knowledge and training amongst support coordinators and health professionals as to what is acceptable to the NDIA.

It is now over a year of frustration, set-backs, new bureaucratic hurdles (eg now needing to find a “Specialist Support Coordinator” for housing), as well as very slow response times from professionals, and we still do not have a completed housing assessment to submit. We need our son to be provided with good supported housing as we are elderly and feeling the personal cost of repeatedly jumping hurdles and spending a lot of time and energy, including emotional energy, on the whole process. Time is running out for us and we want to be there to assist in transitioning our son into supported housing.

The original ideal when the NDIS was first established was to assist the most severely disabled members of our community. We cannot understand why those who do have very severe disabilities need to get tangled up in all this lengthy bureaucratic paperwork. It would be quite obvious to any person involved with disabled people, the severity of our son’s disabilities and many others who are attempting to access assistance. Why can’t they be given a version of a “Gold Card” to indicate that they do not have to continually prove their needs for each plan? We would strongly recommend that the review considers making the whole process of accessing funds are lot simpler for those most in need of assistance.

There is one NDIS policy that seems a bad and freedom limiting mistake for the most severely disabled. Our desire to get out son into accommodation is happening just when small group homes are losing their wheelchair transport vans. Cara, a support service in South Australia that our son accesses, is losing much of its transport fleet, with Scosa/Novita now also struggling. Public transport is not really appropriate for our son and his mates. The wheelchair taxis are expensive but the spontaneity of having the ability to take advantage of access to the community, without pre-booking a taxi, is lost. We request that the provision of wheelchair accessible vehicles for small group homes for the severest percentile of the disabled, be looked at again by the NDIA. Failure to do so means a step backward in the freedom of this group.

Thank you for providing us the opportunity to submit our feedback.