Profoundly disabled uniquely vulnerable to Individual Support Package funding rort

When Australian state governments decided to close institutions that housed the profoundly disabled, their new policy required the creation of viable, fiscally responsible alternatives to provide basic care and lifestyle options for a highly vulnerable group of Australians. One solution implemented in 2011 was to place adult children in independent state housing flats, while providing six-figure cash payments ($200,000 a year) directly to a family member willing to hire disability carers and arrange for services.

The authors of this policy could not have envisioned they would open the door to inhumane and unabated financial and physical abuse on the vulnerable population they intended to help.

These Department of Human Services (DHS) Individual Support Package (ISP) programs exist today as precursors to the National Disability Insurance Scheme (NDIS) funding platforms. The main differences between the two are that the ISP allocations are larger (up to $400,000 a year) and the DHS program has been making cash payouts directly into private family bank accounts since 2011. Families sign a strictly itemized deed of agreement to provide services and promise, 'We will not use the funding for anything that is not within the goals of the funding plan.'

The DHS ISP program is relevant to current NDIS policy discussions. National Disability Insurance Agency (NDIA) intentions are to eventually absorb these six-figure ISP payouts into the $22 billion annual NDIS budget.

I wrote previously in this forum about Karen (not her real name) – a recipient of $200,000 per year in cash DHS ISP funding placed under the control of her adoptive mother. Four years ago, Karen reported family fraud and embezzlement from her fund to legal authorities. Nearly $70,000 was missing from her accounts in an eight-month period. Her family – who were not her legal guardians – promptly took away her talking keyboard and changed the password on her email account, which were her only lifelines to the world. Today, Karen remains without free access to both. No one in her local community has had a conversation with her in public for more than four years.

Since 2012, Karen has been held in a carefully managed prison of silence, while her family uses her disability cash to fund their mortgage payments, household expenses and home renovations. Without a legal advocate, Karen is left to wait until someone comes looking for her. No one with the authority and will to intervene has moved to reinstate her human rights, including the right to conversation, the right to pursue lifestyle goals, and the right of self-advocacy.

Taxpayers are the most unsuspecting victims of this organised rort. On paper, the program appears both fiscally responsible and humanitarian. If the annual cost to care for an adult child in an institution is $500,000, then $200,000 per year spent to provide support in a community environment close to family and friends has advantages for taxpayers and society at large. The sad truth is that savvy rorters were waiting in the wings to take advantage of loopholes in the program, even before it began handing out cash like a personal family ATM. Karen's adoptive family uprooted her from a trusted circle of paid carers provided by a registered service provider to move into a region where cash stipends were available. They were confident of unrestricted access to her funds because Karen's level of disability would preclude her from stopping them. All that was needed was to control access to her keyboard and email account. Why didn't anyone come looking for Karen? For example, her DHS case worker?

The family had a strategy in place to disempower the agency. Karen's adoptive mother prides herself as a serial pest who 'always gets her way.' She boasts that she deliberately tied up the DHS case manager's time, calling repeatedly to complain about the state-registered service provider originally contracted to hire Karen's staff assistants. She persisted until they gave her the keys to the $200,000 cash fund – making her both an unofficial service provider and Karen's ISP case manager.

As a private citizen with the money secured in a personal bank account, Karen's adoptive mother became immune to scrutiny by DHS, the state Ombudsman, state Trustees, and the National Disability Abuse and Neglect Hotline, which can only investigate registered service providers, not families operating as service providers. State regulators say the only organisation that can intervene is the police, and only with substantial evidence of embezzlement. DHS refused to voluntarily allow police to examine their records, citing privacy restrictions.

Today, Karen waits in the most inhumane of circumstances for a policy-maker or an agency with authority to rescue her from life as a goose that lays golden eggs. Her story remains one of the most egregious human rights histories I have ever researched.

State records indicate that Karen's adoptive mother was part of a special needs and international adoption 'scene' in the 1980s. As a single, unemployed woman, she circumvented international guidelines to adopt two Haitian children who left parents and other family behind for the promise of a better life in Australia. Two years later, she requested a profoundly disabled child as her third adoptee.

The single mother eventually added a fourth adopted child, then attempted to adopt two Ethiopian siblings, bringing her total to six. At the time, she received assistance from 30 different support agencies. The adoption board turned her down as not meeting the required standards, citing her duplicitous personality and a belief that she was using the Haitians to take care of Karen (and would likely do the same with the Ethiopians). She sued the state and was unsuccessful. Ethiopian adoptions were discontinued shortly after due to lack of control over exploitation once the children arrived in Australia. If this post were simply about $70,000-a-year embezzled from a funding package as payment to a serial pest to 'go away and leave us alone,' DHS may have a case to make. Clients with profound, multiple disabilities are difficult to manage. Service providers have trouble finding suitable carers for their specialized needs; and no one needs to come to work dreading a daily phone call from one family complaining about the same issues over and over while they have other cases to manage.

A $70,000-a-year rort of taxpayer money is troubling, but a state agency may internally decide to forego a complex and expensive fraud investigation for expediency and effectiveness in serving more clients.

A more significant concern is that Karen never received the essential services the package identified in her funding contract. Every dollar diverted to pay her adoptive mother's house payments, nights out, household expenses and home renovations meant Karen was not receiving her disability services.

As I previously reported, Karen had a placement to study science at the university level and was denied professional services that allowed her to attend; she was never able to take up the offer. Her dream to become a productive, taxpaying member of society was obstructed because her family treated her disability income as her contribution to the family coffers. A key policy oversight is that it is the profoundly disabled who are eligible for the largest packages; and they are also the most vulnerable targets of this mode of family financial abuse. They suffer because they lack the independent ability to speak out against embezzlement and fraud. In the case of Karen, her revelations to legal authorities led to punishment restrictions so severe as to constitute false imprisonment.

Taxpayers suffer in the long term as well. Four years ago, Karen envisioned a day when she could pay for her own staff carers. She had started a viable business and projected an ability to begin that process within five years. Contrast Karen's self-reliant goal with a lifetime taxpayer bill of nearly $5 million (over 20 years) for disability care, with an estimated $1.5 million shortfall through embezzlement.

Policy changes to stop the rorting are simple. Provide the money to families but ensure control over its use. No cash withdrawals; and retention by state authorities to audit the account at will – reviewing invoices for authenticity and bank account transfers to ensure they match. Why should state police resources be called in to investigate something DHS should have prevented using their own policy-making authority?

Since birth, Karen's life has been in the care of the state – first as an adoptee, and then as the recipient of a disability package. But since 2012, her life has become an inhumane prison of silence. Very little progress has been made to rescue Karen from exploitation. When a state employee was presented with evidence of family embezzlement, he remarked that they simply don't have anyone else to take responsibility for Karen's needs. So, they take no action, and Karen continues to suffer in silence.

Karen's case may be one among many. Lessons could be learned from an independent audit of every Individual Support Package cash award since inception. This would not only determine the size and scope of the current problem, but would inform the National Disability Insurance Agency on what risks need to be managed in their own program if cash is given to families without proper financial review protocols firmly in place.

It is an inconvenient truth for government agencies that a serial pest has coercive power to garner a $200,000 cash disability package on behalf of a profoundly disabled family member and then prevent the intended recipient from speaking out. If Karen had not had the intelligence to reach out to legal authorities (repeatedly over a month until she was silenced), no one would have been the wiser. But, she did, and she has suffered irreparable harm as a whistle-blower.

Could anyone reading Karen's story exist for one week without being allowed to speak? Imagine four years in silence. It is, in fact, unimaginable. Every profoundly disabled Australian who is the recipient of an ISP package has the potential to be a target for similar abuse.

Public servants have a difficult job to do. With NDIS about to launch nationwide, the 95% of families who would use the money for its intended purpose should not be tarred with the same brush as the 5% who may abuse the public trust and spend the money on their own personal lifestyles. These rorters need to be identified and stopped. If anything is to be learned from the state Individual Support Package (ISP) program, it's how to close the loopholes that allow embezzlement and abuse to continue unabated.

Given that the ISP program tries to help the profoundly disabled – and the profoundly disabled are the easiest of targets – they need a champion. Karen needs a champion. She needs someone who will say, 'This is not too hard. You are a human being and you deserve a fair go at life, just like every other Australian citizen.'

Anyone with a heart would step up – but it takes both heart and authority – and that's easier said than done.