Access by Various artists

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Disability abuse: it’s not OK

by Hilary Stace

Boy left to eat grass at horror home. This 2013 Sunday Star-Times story by journalist Kirsty Johnston exposed the abuse of vulnerable disabled people who should have been safe in the care of their State-funded provider.

It was one of a series of articles on disability abuse and neglect which won Johnston a 2014 Canon Award for Best Investigation. It was not only the individual cases that shocked, but that systemic failure seemed widespread; there is a general assumption that we have a robust system of checks, safeguards and complaints processes to prevent such travesties.

A Parliamentary select committee undertook a lengthy investigation after earlier incidents and its 2008 report advocated many improvements. Yet disturbing reports continue.

Those uncovered by Johnston and other young journalists led to an independent Ministry of Health investigation led by Consumer advocate David Russell and disability activist Bev Grammer. Their report Putting people first was published in December 2013 and the Ministry of Health has committed to implementing all recommendations, which mainly concern better contracting and auditing processes. Tragically, Bev died before seeing her work implemented.

What do I mean by abuse? Generally this includes:

  • Physical – any behaviour threatening physical safety or body integrity
  • Sexual – anything non consensual, illegal or inappropriate
  • Emotional or psychological ‒ including threats or bullying
  • Neglect ‒ such as lack of access to medical treatment
  • Financial – stealing or withholding money
  • Witnessing abuse
  • Silencing so victims are unable or unwilling to complain

Abuse can be more subtle such as photographs and descriptions of vulnerable people in ways that demean their dignity and privacy. This can happen inadvertently in media reports or promotion for providers.

A valuable report provided evidence of abuse of disabled people living in the community (not in residential care but still dependent on services). Independent researcher Michael Roguski examined disability support in the Gisborne area and talked to disabled people, families and advocates. He found a number of structural issues including:

  • A low level of societal awareness of disability abuse
  • A variety of silencing processes
  • A lack of appropriate monitoring
  • Poor management practices
  • Inadequate reporting
  • Inadequate legislation including no protection or support for the disabled person during an investigation of abuse.

The ‘silencing’ that he named was particularly worrying.

  • For the disabled person it meant pressure not to report abuse (because of negative past experiences of reporting, fear of retribution, and the sad reality that an abusive care worker is better than no care worker)
  • Disabled people feeling they were unworthy of good care, or deserving of abuse
  • Normalisation of poor treatment
  • Difficulties in communication eg disabled person was non verbal
  • Undermining of the disabled person’s testimony
  • Collusion by authorities to protect the perpetrator 

Those of us in the sector have probably all heard reports of collusion including subtle pressure such as employees being told they are ‘too much of an advocate’ for disabled people, or to keep quiet as ‘we can’t afford a court case’.

Compliance requirements often focus on improving training (focus on staff), and auditing (systems) rather than focusing on the disabled person as fully human and deserving of quality care. Any focus on the person is often a negative one concentrating on what is ‘wrong’ with them. Many of the providers in the shocking media stories or in Health and Disability Commissioner investigations passed their official audits.

A 2012 survey of disability abuse in the US showed a similar picture to the Roguski report. California’s Spectrum Institute ran an online survey about disability abuse in 2012. N=7289 people across the US, across ethnicities and the age range took the survey (some with assistance), of which 20% identified themselves as having a disability, and almost half with a disabled family member. N=2560 answered Yes to ‘Have you or your family member with a disability ever experienced abuse?’

Of this Yes cohort, nearly half did not report the abuse, and in only 10% was the perpetrator arrested. More women than men experienced abuse, but men were less likely to report it.

Abuse types as reported by those with disability (and many were multiple occasions):

  • 87.2% verbal emotional
  • 50.6% physical
  • 41.6% sexual
  • 37.3% neglect
  • 31.5% financial

The rates of abuse for various impairment groups:

  • Autism 77%
  • Mental health 74.7%
  • Speech 66.8%
  • I/DD 64.3%
  • Mobility 55%

The authors summarise: ‘The bottom line is that abuse is prevalent and pervasive, it happens in many ways, and it happens repeatedly to victims with all kinds of disabilities’.

I suspect if we had the resources for such a survey in New Zealand the picture would be similar.

Even without obvious abuse, health disparities between people with intellectual or learning disability (who comprise a large proportion of our disabled population) and those without reveal serious health neglect.

A 2011 Ministry of Health report revealed alarming statistics including life expectancy of 20 years less for people with intellectual impairment than for other New Zealanders. A report analysing health screening data from NZ disabled athletes attending Special Olympics NZ National Games in 2005 and 2009 revealed that even for this population, which is actively engaged in team sports, there were widespread problems with vision, hearing, dental and podiatric health, indicating poor access to appropriate public health services. And for all disability statistics, Māori are disproportionally represented.

Elder abuse is a growing concern. Anecdotally, financial abuse and neglect is common and family members are the main perpetrators. Aged care facilities are our new institutions and we need to be vigilant because we know what happened in the old institutions which had large numbers of vulnerable people but often insufficient resources and staff. Once out of sight and dependent, the risk of abuse rises.

Our Disability Rights Commissioner recently met with his Australian counterparts to advocate for a United Nations Convention to protect the rights of older people. Here, Age Concern has been running a series of ads highlighting elder abuse. The large Kimberley Centre, near Levin, has sold after being on the market for several years following its closure in 2006. Rumours are that the buyer is an aged care provider. Will one institution replace another?

There are, of course, many wonderful providers and care workers. And some disabled people have challenging behaviours. But even one abuse case is too many. There are numerous simple and multi-systemic ways to prevent abuse. We could start with the basic ethical principle of treating others as you would like to be treated. And as fully human. What else needs to change?

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