Blueprint 11 Submission
According to Deaf Aotearoa there are about 9000 culturally Deaf (the capital D denotes belonging to Deaf culture) people in New Zealand who call New Zealand Sign Language (NZSL) their first language. This number includes people who are Deaf and blind (about 3% of the Deaf population), but excludes many thousands who use oral language, and have become deaf (lower case d denotes belonging to a hearing culture)
Deaf people experience poor life outcomes across the eight drivers of inequality specified as target areas for Mental Health and Addiction (MH&A) services. These include bonding difficulties, language deprivation, childhood abuse, low levels of literacy, unemployment, isolation, higher rates of criminal offending in adulthood and poor general health.
Shaping mental health services of the future for Deaf people
- Reducing lifetime impact. Language barriers make it impossible for Deaf people to integrate with the mainstream. To be effective for Deaf people, mental health services must be founded upon fluency in NZSL and Deaf cultural processes as opposed to trying to fit Deaf needs into a framework designed for hearing (p1)2. Fifty percent of the staff of Deaf MH&A services should be Deaf.We need excellent counselling services for parents of Deaf children; improved collaboration between special education, child mental health, and voluntary agencies such as Deaf Aotearoa to create a NZSL competent support system for Deaf children and their families; improved access to interpreters, NZSL fluent staff within child mental health services; and the use of telehealth (e.g. Skype) to support Deaf children and their families outside the main centres.
- Minimising use of high risk pathways. Language and other cultural barriers mean that Deaf people are poorly served by hearing services. Lack of access creates and compounds risk for Deaf people. They need joined-up services, not only to make service access much more straight-forward, but create the possibility of a genuine Deaf cultural service. Internationally, there are several models of successful Deaf accessible cross-sectoral partnerships including community, residential, drug and alcohol, child and acute mental health services and general health, education and welfare service.Tiny isolated pockets of culturally focussed services cannot succeed. We need to connect a range of Deaf services to form a cultural hub so that a critical mass of signing fluent professionals with broad expertise can be achieved. We propose the development of 3 nationally coordinated hubs in the main centres of Deaf population; Auckland, Wellington and Christchurch, with interpreting, assessment, and counselling services nationally available through telehealth, supporting those distant from the hub.
- Reducing loss of health, functioning and independence. Good prevention means that Deaf people will have local access to their regular GP to identify and address mental health and addictions and make appropriate referrals. PHOs need to have one or two GPs and practice nurses in with experience in Deaf culture and language. The proposed Deaf MH&A hubs would have a close relationship with PHO services and a key role in training around general health management of Deaf people with ongoing mental health conditions.One pathway to greater independence for some Deaf clients of MH&A services is to make it possible for Deaf to live together or close by in residential facilities creating a therapeutic signing community and preventing isolation.
- Recovery for those most severely affected. To create the conditions for resilience and recovery for Deaf people we must provide consistent and enduring Deaf cultural services. We believe that the necessary communication depends upon national coordination of Deaf services to ensure access and consistency for Deaf people across the country. Services must be led by national Deaf strategy, share training, supervision and some resources, including telehealth, with staff meeting directly and through telehealth links on a regular basis.
- Improving effectiveness and productivity of the health system. MH&A services are not working well for Deaf people. A re-allocation of the MH&A resources currently used to support Deaf people to the Deaf MH&A hubs would provide a far better service with, in the long term, no increase of personnel, and a cheaper service. Staffing models for Deaf MH&A services based on the most conservative estimate of the Deaf population and international staffing exemplars have been developed and need to be considered for implementation.
Changes required in the system.
- Self care and resiliency. Self awareness is a key to better self care and resiliency and depends on having a secure cultural identity and quality communication. Services need a deeper understanding of Deaf culture and how services work best for Deaf people. Deaf awareness training for general health, education and welfare services is essential to address this systemic issue, to reduce stigma, and increase meaningful communication between hearing and Deaf people. Clear protocols need to be established on how general services can work alongside Deaf services, including the consumer feedback processes needed to improve service delivery.
- Develop a responsive “no wait” system. Poor communication with Deaf clients and a lack of access to interpreters creates damaging delays in treatment which a Deaf MH&A service could address4 through development of telehealth technology and collaboration across the hubs to ensure that no one with broadband access is far away from either a Deaf MH&A professional or an interpreter.
- Closer to home responses in less intensive settings. Face to face communication is a vital part of therapy and Deaf services will need to travel. Resource allocation must reflect an understanding of the dispersed Deaf demographic and the distances that have to be covered in support of isolated Deaf clients.
- Integrated responses. We envisage a two way process where at times Deaf clients are primarily with the Deaf service but where Deaf staff are supported and trained by MH&A professionals with specialist skills. On the other side Deaf professionals would be supporting hearing professionals in contexts where the Deaf service did not have the resources to manage a particular client.
- Flows along pathways to resilience and recovery. Positioned at the core of the Deaf Community, Deaf MH&A services will support Deaf to claim their autonomy as culturally rich, self-determining beings4, tackling social isolation, and discrimination and supporting links with the Deaf community.
Creating a change in performance of services for Deaf people.
- One system multi-funded – aligning resources & integrating responses. Aligning Deaf MH&A services with other Deaf services such as Deaf Aotearoa, and resource teachers for the Deaf will optimise limited resources. Other important collaborators will be interpreting services, social organisations like Deaf Club, education providers with dedicated funding for disability support, ACC and WINZ. Consulting the Deaf community on how these organisations might together address Deaf priorities could result in major improvements to Deaf wellbeing and less cost to our health, education, and welfare services.
- Reducing variation in clinical practice, safety and quality. This requires a nationally coordinated approach to Deaf MH&A. Current practice varies immensely and must be addressed. Cultural services will, however, need to do certain things differently. More time, for example, may need to be given to assessment processes because translation slows things down.
- Increasing clinical time to care through reducing waste. Inappropriate services waste time and damage lives. Deaf MH&A services can stop the waste and damage.
- Organising roles and teams. We emphasise the importance of national coordination of services to ensure collaboration, advocacy, accountability and a strong focus on recovery. In our team the national coordinator has a key role in getting the best for and from Deaf MH&A services. We envisage Deaf service hubs to consist of Deaf and hearing workers fluent in NZSL, and interpreters, backed by MH&A specialists where the local hub needs a stronger skill base.
- Organising care into integrated layers. The model of Deaf mental health service that we are proposing has three clear strata: national coordinator, three regional service hubs, and general MH&A services supported by visiting staff from the specialist service and through telehealth. At each level we have argued for close collaboration and a holistic approach to treatment.
A more evidence informed approach to system level change.
- Identify innovative system of care developments. 1) resourcing a model MH&A services for Deaf clients that is sustainable and capable of evaluation, 2) setting up a national data base for MH&A services that clearly identifies Deaf participation (inputs, outputs, outcomes).
- Identify system antecedents, readiness and adoption/assimilation capabilities needed. The system antecedents are 1) fragmented research confirming that Deaf are poorly served by MH&A services, unable to work within the cultural and communication spaces needed to promote Deaf wellbeing; and 2) the absence of MH&A data to determine Deaf service use and outcomes.
- Change support infrastructure required that will align the formal policy, monitoring and resourcing frameworks with change networks. Deaf cultural services make good economic sense when aggregated nationally as opposed to being negotiated at DHB level. Addressing this issue through policy and resourcing frameworks, collecting the data on Deaf engagement with MH&A services, and providing national coordination are essential to ensure a robust cost-effective service.
Proposed areas to develop sector leadership.
- MH&A networks. We need a strong commitment a hubs/networks model for Deaf MH&A services. The risk is that Deaf MH&A services will be so small they will be easily ignored, their complexities misunderstood, and starved of resources and attention (as has been the experience to date).
- Ministerial targets for MH&A. Deafness denoted by a small “d”, identifying the very much larger hearing impaired community, is named in Te Kōkiri, but Deaf culture is not. There needs to be specific ministerial targets in relation to Deaf mental health, to ensure that data captures Deaf needs, and supports culturally appropriate services.
- Continued advocacy and championship. Current Deaf MH&A services have not developed through lack of an effective and appropriately positioned advocate. We must have a National Coordinator at Ministry level, a signing fluent person, a skilful negotiator and supervisor with a good understanding of how mental health funding and services operate. This person will ensure consistent service delivery agreements are made; that hubs work effectively together; there is monitoring delivery of service and management support systems; and reporting back to the Deaf community.
- Aligned accountability, sector informed outcomes and performance development processes. We see the National Health Board as having direct interest in how Deaf MH&A services work at a regional and national level. HR processes need to be developed to support smoother transitions and staff retention through leadership training, and shifting staff resources temporarily to vulnerable areas, etc. This level of flexibility demands nationally coordinated strategy.
- Aligned central agency support. Housing, education, justice and welfare will be key partners.
Supporting sector led performance improvement.
- An evaluation of existing Key performance indicators (KPIs). Poor communication, misdiagnosis, over medication and incarceration lead to unnecessary suffering for Deaf people whilst valuable resources are wasted. Good KPIs would ensure this is not the case.
- Providing an integrated, benchmarked, outcomes oriented approach to performance. We strongly support a whole of system development approach oriented towards a re-alignment of resources into Deaf cultural services to support equity of outcomes for Deaf people.
- Introduce nationally consistent resource allocation guidelines. There has been no consistent national application of existing resource Deaf MH&A guidelines. We strongly support this proposition.
- Annual process of review. Annual reviews that actually lead to service improvements for Deaf clients and the establishment of a national data base that could monitor their progress and Deaf MH&A services would create the possibility of ongoing quality improvement.
Reviewing how MH&A funding frameworks operate.
- A modified ring-fence funding. The resources supporting Deaf clients need to be clearly identified, transferred into culturally appropriate services and protected in this area to enable evaluation of their effectiveness.
- Increase the accuracy and reliability of future PBFF funding. The Deaf population has higher needs than the general population and is very unevenly distributed across New Zealand. Given that this can be addressed, increasing the accuracy and reliability of PBFF funding would be helpful as it would increase available data on the needs of the Deaf community.
- Improve the balance between inputs, outputs and outcomes in monitoring. A breakdown of inputs, outputs and outcomes for Deaf clients of MH&A services would help to show that Deaf clients are poorly served by general services, with Deaf services resource starved and set up to fail.
The top three issues the MHC needs to take into account to ensure better outcomes for vulnerable groups.
- Address how cross sector conversations and decision making to create a whole of life approach will proceed.
- Develop a framework that allows for deep consideration and face-to-face consultation on the direction of MH&A services for Deaf people.
- Recognise that the most vulnerable groups within MH&A face major barriers around access, assessment and effective treatment that are communication and culture dependent, as are the processes that lead to recovery and mental well being.