Dear Sir/Madam

I write with grievance as a Carer of an 11 year old girl with CHARGE Syndrome and also as a casual paid carer of adults with Downs Syndrome.

I have voiced my opinion on Radio National last year and announced that for us NDIS is the most disappointing ,soul destroying experience myself and husband have encountered. We are beef cattle farmers in a drought and that’s saying something. Perhaps even more depressingly personal than the days our daughter struggled to breathe and swallow at birth, had heart surgery and all the never ending appointments and life threatening illnesses she has suffered. The actions or should I say inaction of the NDIA are more personal, because unlike our daughters genetic condition which is based on natures cruel honesty the promises of the government to use our taxes to benefit the disabled gave us misguided hope.

Some of my serious concerns are as follows;

• Little or no provision for carer respite. This leaves carers and the disabled at risk of harm. The flow on burden to FACS will be huge in the short and long term. I myself now have many days in the year where I fear that if something happens to my husband I will not be able to cope. It is a struggle day to day now and made worse by no provision now for overnight respite in my daughters plan.

• There are unacceptable delays in processing urgent plan reviews. In our case it took 10 months to review her plan and letters from Doctors, Specialists and finally the option of the AAT. Our original review was supposedly lost despite numerous email receipts acknowledging receipt. During this time our daughter was put on an increased medication burden. The modifications and extra care and training she needed could not be accessed leaving her at risk of harm.

• Lack of feedback from NDIA. There needs to be a monitored and accountable call back system.

• Lack of accountability within the NDIA.

• Lack of transparency that Plan Managed and Self-Managed plans create. Carers and the disabled are putting themselves at risk of harm from individuals that are not governed properly.

• Poor training of NDIS call centre staff on issues of disability or carer mental health.

• Unsuitable staff being employed by private agencies to care for people with significant disability. We have experienced first year Uni students being sent to do a shift with our daughter without any knowledge of her condition. We have had to report smoking issues to one organisation and had comments such as “perhaps if they made children wear dunces caps in fron of the classroom they might learn”. Our daughter has significant learning issues. Agencies need to be more accountable for the training and vetting of employees.

• The emergence of “Hire up” is causing reputable agencies to struggle to find staff.

• The rapid emergence of people with social work qualifications starting small businesses with no other qualifications is causing people to waste a lot of money in their plans on courses that have little or no advantage. We have wasted money on such programs which had no goals or structure. More governance is needed for these ABN holders.

• The increase in the cost to write a report by therapists has meant that many therapists promise great outcomes but use the increased cost of report writing as their mainstay of income and are then unavailable to actually help implement the recommendations. This is a waste of tax payers’ money and provides no benefit to the client or carer. We have had several reports from different OT’s that are available for the initial report writing consults then cannot fit you in for actual therapy. I recommend that there is a monitoring of report writing to therapy session ratios for therapists.

• There is a serious lack of services west of the Great Dividing Range in NSW. Notably in the Blue Mountains to Bathurst area. We have had money in our plans and great aspirations for our daughter but nowhere to use the funds. We are at the mercy of private enterprise which is not moving at the pace or with the professionality it needs to.

• Of political importance is our issue with Travel Allowance. A lot of our core support hour funding goes to paying agencies or therapists travel expenses so they can take our daughter out or coach her in self-care. NDIA does not deem us rural. However according to legislation we are rural. This is based on nearest town population and other factors. When myself and Disability Advocacy Australia challenged this so we could get a rural/remote loading they said although the legislation says we are rural that they use an overlay map used by the emergency services/flying doctors and that we are within that circled area. So in other words the law means nothing because they have chosen a map that negates the law. This is one issue I would like a ruling on. I am prepared to take the issue to the AAT. Another cost to the government.