Prisons of silence: the dark side of the Australian disability support system

Australia is poised to spend $22 billion a year to support persons with disabilities in their quest to lead productive lives under the new National Disability Insurance Scheme (NDIS). On paper, the program appears to be progressive and generous. However, it already contains the seeds of failure – an existing, ingrained culture of family disability fraud and embezzlement that has been operating openly and arrogantly in Australia for years.

What taxpayers don't know is that a predecessor program – the Individual Support Package (ISP) program administered by the Department of Human Services (DHS) – has already become an easy target for family rorters to divert tens of thousands of dollars into their personal coffers. Non-disabled family members are laughing all the way to the bank, knowing they have figured out how to live off the disability packages – and circumvent anyone who tries to intervene, including the government agencies who provide the funding.

Consider the case of Karen (not her real name), a disabled recipient of $200,000 per year in taxpayer support from state and federal sources. Within two weeks of reporting family embezzlement in 2012, Karen went from the promise of an independent future to an inhumane existence of forced silence that has continued for four years.

Prior to 2011, when DHS allocated Karen's disability funds through a state-registered service provider, life was good. She lived independently, attended university, was dating, and had started a business to help persons with disabilities achieve their dreams in higher education and entrepreneurship. Karen looked forward to the day when she could live on her business profits and no longer require taxpayer funding to pay her staff assistants.

When DHS changed their policy in 2011 and began giving her support money – $14,000 per month – directly to her adoptive mother, neither DHS nor her family were her legal Guardians. In fact, Karen had been removed from her mother's home after allegations of abuse were raised with the Office of the Public Advocate (OPA).

Regardless, the family were given the role of 'private service providers' in charge of her fund. They assumed control over hiring, firing and instructing all of Karen's staff assistants. This meant the family took control of every aspect of her lifestyle and business through controlling the individuals she relied on to live a whole, productive life.

Embezzlement from Karen's $170,000-per-year DHS ISP fund began just weeks after DHS deposited cash payments of $40,000 into the personal bank account of a family member.

Karen reported the fraud to three lawyers, an occupational therapist and her GP. Someone broke confidentiality and told her family about her allegations. The family moved quickly to restrict her freedom to act, using their financial power to punish her. A brother hacked into her email account and changed her password so that she could no longer use it. Her adoptive mother fired her staff manager and took away access to her talking keyboard. Her carers were instructed to not allow her to speak to anyone without the family's permission. This was a direct violation of Karen's rights as an adult without a Guardian.

Today, Karen no longer has control over where she lives or studies. Her professional support team has been replaced by family members who are not qualified to assist her in providing the specialised services the taxpayer funding is earmarked to deliver.

Last month, Karen was blocked from testifying in Federal Circuit Court by her mother's lawyers, who knew she was there to give evidence about the embezzlement. She appeared in Court under subpoena but was not allowed to bring her talking keyboard with her, denying her the right to speak on her own behalf. For an hour, Karen sat in the back of the courtroom and gave the sign that she wanted to talk – a sharp, audible rap on the side of her chair. She was ignored.

Karen's lifelines to report problems were cut off in 2011 when DHS abdicated their responsibility to oversee her services and again in mid-2012 when the Office of the Public Advocate stopped meeting with her about her welfare. The state Ombudsman can no longer intervene because their terms of reference apply only to state employees as fund managers, not private citizens acting as fund managers. The National Disability Abuse and Neglect Hotline cannot investigate family abuse, only service-agency abuse. DHS has no authority to audit bank statements from a private family account, even though they deposit the funds each month. VCAT has the authority to investigate but has passed on their responsibility.

Where does this leave Karen today? She has become a goose that lays golden eggs. A bear held in a cage of silence and milked each month for her disability funds.