Source: Health and Disability Commissioner
The Deputy Commissioner Disability, Rose Wall, is calling for a consistent quality framework to be developed and implemented across the disability support sector, including proactive monitoring and reporting of the experiences of disabled people.
“Such a framework would enable better monitoring of the support delivered to tāngata whaikaha|disabled people. It would also set clear expectations, which would help people to communicate their concerns when these expectations are not met.”
Ms Wall has today released a report on five years of complaints made to HDC about residential disability support services. The report makes recommendations on how to improve the quality of support provided to disabled people living in these settings. It draws together insights from the collective experiences of disabled people, alongside findings from HDC’s assessment and investigation of these complaints.
“I acknowledge that the disability sector is under pressure and most people working in the sector are committed to supporting disabled people to live good lives. However, it is critical that robust safeguards are in place to uphold disabled people’s rights, and that there are responsive pathways for people to raise concerns and make complaints. This thematic report has given me an opportunity to make recommendations that will further strengthen the quality of supports provided to disabled people.”
Ms Wall further commented, “HDC’s report is being released ahead of the forthcoming final report of the Royal Commission of Inquiry into Abuse in Care, which will shine a light on the abuse of disabled people in residential settings. Their findings will no doubt have lasting reverberations for the provision of support for all disabled people – and HDC will be looking to support their recommendations, as well as examining the learnings that HDC can apply to our own work.”
HDC acknowledges the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) Committee’s concerns that New Zealand does not have a comprehensive strategy to deinstitutionalise the disability sector. HDC supports the Committee’s recommendations and guidelines toward continued deinstitutionalisation, and makes some recommendations and comment in the report to encourage the continued development of community-based alternatives to residential support.
Ms Wall supports the recommendations made in a 2023 Whaikaha-commissioned report for managing complaints about a large residential disability service provider. She also encourages Whaikaha to support the development of tāngata whaikaha Māori-led disability support services; to communicate better with the disability community about progress to roll out EGL systems transformation nationally; and to consider making its Choice in Community Living programme available nationwide.
Ms Wall acknowledged the government’s current independent review of disability support services administered by Whaikaha, and she has urged the review panel to ensure that the voices of tāngata whaikaha|disabled people are central, particularly in the development of its recommendations.
“While I am disappointed there are no tāngata whaikaha Māori or disability community leaders on the panel, I encourage the panel to make sure it takes into consideration the articles of te Tiriti o Waitangi and the UNCRPD, as well as the principles of Enabling Good Lives, in its recommendations.”
Ms Wall also asks the independent review panel on Whaikaha services to have a strong focus on guaranteeing the sector-wide quality of disability supports and sustainable work-force planning, including career pathways, job upskilling, and training opportunities for residential disability support staff. She notes that the Aged Care Funding and Services Model Review could provide a possible road map and further justification for the development of a similar review of disability sector funding.
“I will be monitoring the disability sector’s response to the recommendations I have made in our report and will continue to work collaboratively with the sector where appropriate to promote the rights of disabled people, highlight the experiences of disabled people in the health and disability system, and address areas of shared concern.”
Background
We have undertaken an analysis of five years of complaints to the Health and Disability Commissioner (HDC) about residential disability support services and have identified several themes that highlight areas of concern, as well as how pressures on the sector affect the experience of disabled people|tāngata whaikaha and their family and whānau. These themes include the following:
– Failure to adhere to support plans.
– Inadequate standards of care, including:
o household safety issues,
o poor medication management,
o poor identification and management of long- and short-term health conditions – including deteriorating health, and
o poor oversight and supervision of staff.
– Use of restraint and force.
– Concerns about one-size-fits-all approaches to individual disabled people’s needs.
– Lack of culturally safe and appropriate support services.
– Poor coordination with other services, including health services.
– Poor communication with disabled people, family and whānau, including:
o a lack of respectful and culturally appropriate communication,
o when there are diverging views between the will and preferences of disabled people and their family,
o ensuring clarity about what level of support has been funded, and
o changes and termination of support.
– Shortages of skilled staff to support specific needs of individuals.
– Poor responses to feedback and complaints, including fear of retaliatory behaviour from staff and management.
– The role family and whānau, support networks, and staff play in raising concerns on behalf of disabled people|tāngata whaikaha.
The following broader systemic issues contribute to these themes:
– Workforce shortages,
– Slow progress in respect of transforming the system in line with Enabling Good Lives (EGL) and geographical inequities in access to services across Aotearoa New Zealand,
– Lack of safeguards and poor-quality frameworks, and
– Sustainable and appropriate funding of services and individual alternatives.
Informed by these themes and the broader systemic issues facing the disability sector, this report makes several recommendations.
Recommendations
– The continued work of Whaikaha and service providers in better facilitating and resolving complaints about disability services.
– That Whaikaha make available to disabled people and their whānau information on what they can expect from disability service providers.
– Acknowledging current resource constraints, the potential for increasing the role of the Nationwide Health and Disability Advocacy Service in supporting people who live in residential disability services.
While Whaikaha retains overall responsibility for ensuring that the recommendations of the Schmidt-McCleave report are met, HDC is maintaining a watching brief over progress being made.
In addition, HDC makes the following recommendations based on the findings of our analysis of the complaints we receive about residential disability service providers (RDSPs) over the past five years.
HDC recommends that Whaikaha, in its role as steward of the broader disability sector, and in consultation with disabled people|tāngata whaikaha, whānau, and disability service providers and funders, develop and implement a consistent quality framework across all funded disability service provision. Such a framework would set out expectations of disability support and allow the quality of supports to be consistently measured and monitored across all funding agencies. Clear expectations also empower disabled people and their families to communicate their concerns when these expectations are not met. The following points could be considered in developing a quality framework:
– The proactive monitoring and reporting of the experience of disabled people and their family and whānau in services, including sector-wide opportunities for contractual levers to support this monitoring and reporting.
– Progression of Whaikaha’s work on a consistent framework and guidance for complaints management.
In addition:
– HDC notes Whaikaha’s publication of the Disability Support Workforce Community Engagement report and supports a workforce planning programme remaining a priority.
– HDC notes and supports work underway as part of the My Home My Choice programme and the Choice in Community Living programme available in some parts of the country. HDC encourages Whaikaha to consider making Choice in Community Living available nationwide.
– HDC encourages Whaikaha in its stewardship role to support development of Māori led disability services, both residential and community based.
– HDC encourages Whaikaha to communicate with the disability community about progress to roll out EGL systems transformation nationally.
– Use the articles and principles of Te Tiriti o Waitangi, the UNCRPD, and EGL to create a framework for recommendations that will ensure a sustainable, high quality, and inclusive disability support system.
– Ensure that the review has a strong focus on guaranteeing the quality of disability supports, including any lessons learned from previous reviews and inquiries.
– Include a strong focus on disability workforce planning and the long-term sustainability of the workforce, including career pathways and supported on-the-job upskilling and training opportunities for RDSP staff.
– Consider the Aged Care Funding and Services Models Review as a possible road map and further justification for the development of a similar review of disability sector funding. Such a review should address current inequities in funding of disability support based on diagnosis and origin of impairment.
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Names have been removed from the report to protect privacy of the individuals involved in this case.