Deaf and disabled survivors and their communities have particular needs when it comes to redress. We held a hui on redress with Deaf and disabled people, whānau members, advocates and sector workers. We also held two wānanga with survivors, experts and community members to test our recommendations.
Deaf and disabled survivors face significant barriers to accessing redress or, in some cases, even being informed and aware that redress is available. They often face a lack of support to communicate, mistrust of State and faith-based organisations, and challenges associated with navigating processes that are bureaucratic and adversarial in nature.
Many are in long-term care and are not provided with basic information about redress processes or help to navigate those processes.
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Deaf and disabled survivors told us they wanted equitable access to redress, sufficient for them to “live a good life”; and that they also wanted to be involved in designing and delivering processes for healing, restoration and ongoing support.
“Nothing about us without us” has been a longstanding challenge levelled by disabled communities when demanding meaningful participation in decisions and reforms impacting their lives. We heard of the need for Deaf and disabled people and organisations to be involved in the co-design, governance and management of any new scheme for redress, which should include paid advisory roles. One survivor emphasised that disability communities should lead change: “we’re capable of building something better”.
Other survivors and community members spoke about the need for any redress scheme to comply with the United Nations Convention on the Rights of Persons with Disabilities. Many spoke of the importance of redress that is person-centred, holistic, and flexible enough to meet the specific needs of each survivor and their family and whānau. Survivors and stakeholders described this as “self-determination”, as “mana enhancing”, and as enabling people to have a good life, as they view it.
In this context, survivors emphasised the diverse identities and needs of Deaf and disabled people, with their many experiences and impairment types. Similarly, survivors emphasised the diverse identities of disabled people in terms of culture, gender, and sexuality. To reflect this diversity, tailored responses are necessary.
We also heard that adequate resourcing is needed to properly inform survivors and ensure they can exercise genuine choice about the types of redress and support they access. Any redress scheme should meet people where they are, actively reach out and provide information and support to all survivors.
Deaf and disabled survivors must be in control of key decisions and some might need a supported decision-making framework to enable this. Others might need communication support, independent advocacy, legal advice, psychological support, peer or whānau support, or other forms of support. We heard that supports must be free, culturally appropriate and tailored to survivor needs.
Ensuring a redress scheme meets accessibility standards in relation to physical spaces, information provision and support provided was seen as a minimum to ensure Deaf and disabled people can access redress. Any scheme should also respond to service gaps, such as shortages of New Zealand Sign Language interpreters, mental health professionals for disabled people (particularly people with learning disability), specialised disability legal services and specialist pathways for people with complex needs.
Survivors also told us that any new redress scheme should be responsive, trustworthy, and independent of the agencies that had allowed abuse to occur.
Deaf and disabled survivors and communities overwhelmingly sought a broad approach to the types of abuse that are included in a redress scheme. This includes forms of abuse that are not always obvious or recognised – such as neglect, loss of family and ongoing relationships, restraint and seclusion, failure to provide adequate education, emotional abuse due to ableist treatment and language, lack of privacy, loss of culture and cultural abuse, and financial abuse.
We also heard about the importance of recognising the harm of multiple instances of abuse that may seem small, but ultimately undermine a person’s sense of worth, self, and being.
Māori survivors who are Deaf and disabled spoke of the importance of connection or reconnection with their whānau and te ao Māori as part of any redress scheme, and of restoration of mana and rangatiratanga consistent with te Tiriti o Waitangi. They also noted that their abuse and neglect was compounded by being both Māori and disabled. They suffered both racism and ableism.
We also heard that understanding is needed about the specific context of Deaf and disabled people who came to Aotearoa New Zealand from Pacific nations and who were placed in institutions in isolation from their home, culture, languages and communities. We were told that deinstitutionalisation has specific impacts on Pacific disabled people, including a lack of culturally appropriate supports, and that experiences of cultural abuse and neglect should be acknowledged in a redress scheme.
Unlike many other groups of survivors of abuse in care, many disabled people continue to be in long-term care arrangements, including residential/community-based care and receiving home-based support services.
Disabled survivors and communities emphasised that because of this, redress should be available for current and future experiences of abuse, not just historic claims.
We heard concerns that disabled survivors who received monetary payments could be subjected to financial abuse, and that there is a need to ensure that redress payments are not considered income or assets that might affect eligibility for income support payments or be used to repay debts or fund disability and aged care services. Rather, safeguards such as supported decision making should be in place to ensure disabled people can exercise choice and control over their entitlements.
We heard that redress should include financial support to meet the additional costs of living and support that disabled survivors face. We were told that in the absence of such support, many disabled survivors would continue to live in poverty.
Survivors told us that redress should be available to individuals who experienced abuse, and to their families and whānau who had also been affected. They said that redress should be provided to Deaf and disabled communities as a whole, acknowledging their shared experiences – for example, community memorials or education programmes could be provided to acknowledge the institutionalisation and abuse of Deaf and disabled people.
Disabled people, family and advocates said, “leave no one behind”. We heard that elderly and terminally ill survivors must be prioritised in any new scheme and that those with psycho-social disability or learning disability live 20-25 years less than others. Some disabled survivors said they should not have to prove they are victims of abuse and neglect – being in the system should be proof enough.
Deaf and disabled survivors and communities also told us that the focus of redress must not only be on individual perpetrators or organisations, but also on the broader context and systems that allow abuse and neglect to occur. Preventing further abuse and neglect would require systemic change, which guaranteed the rights and freedoms of disabled people. The scale of change needed was greatly emphasised, reflected in survivor Matthew Whiting’s words: “It is essential that we learn from history. The current abuse and neglect endured by people is a result of systemic issues.”
Protection of people from current and future abuse was a priority for many participants. We heard very clearly that stronger safeguards are needed across the care system to ensure that Deaf and disabled people are protected from abuse. Deaf and disabled survivors and communities told us this means putting safeguarding needs at the forefront of State policy and practice, including by building safeguards for disabled children and adults into legislation and strengthening regulation of the disability support workforce. We also heard of the need for a regulated reporting framework for disabled people, requiring staff and others to report any instances of abuse and neglect they saw.
Deaf and disabled survivors and communities also emphasised that redress needs to be coordinated and integrated across all of government to avoid creating “a new silo”. Deaf and disabled survivors and communities felt that there had been little acknowledgment, accountability or justice related to the abuse and neglect of Deaf and disabled people. We heard that abuse and neglect was hidden, and complaints downplayed, Deaf and disabled people not believed, and changes were not made to prevent further abuse when it was disclosed. Although disabled people have told their stories many times, “nothing has changed”. Critically, many people felt that even when it comes to addressing abuse, “disabled people are always ‘tagged on’ due to ableism and othering.”
We heard that there is a need to give visibility to the experiences of disabled people in Aotearoa New Zealand, including experiences of care. Dr Hilary Stace and Martin Sullivan told us that acknowledgement of these experiences, potentially through an archive or repository, was needed as a way to prevent Aotearoa New Zealand from ‘repeating history’. Survivors suggested a range of ways in which accountability could be provided, including national apologies and commemorations, including public apologies from organisations where Deaf and disabled people were abused. Sir Robert Martin has frequently called for a “citizen ceremony” for disabled people who were in institutions and had been denied the opportunity to be part of Aotearoa New Zealand society. Matthew Whiting called for an ongoing “Truth Organisation” that would provide “a forum for people to be heard and believed with respect to their experience. It would have the power to make organisations and the Government take responsibility”.
Next: 2.1 Introduction