Inquiry into more effective social services
- Some high level changes to commissioning social services may possibly lead to improved outcomes across the health and disability sector and reduce resulting social services costs, but we believe this is not a given. In fact it may be a diversion from the core problems.
- NZORD believes that the underlying philosophy and ideology that drives the existing delivery of these services is the critical aspect of efficiency/inefficiency and effectiveness/ineffectiveness of outcomes.
- Many aspects of health service and disability support services delivery are unlikely to be changed for the better simply by change to who is the lead agency in the delivery of those services, or by changes to whether there is direct provision by government at Ministry or Department level, by its health agencies such as DHBs, or by Non-Government agencies.
- Various Ministries and crown entities such as DHBs have a history of responding mainly to the politically driven Minister’s priorities and in the context of tightly constrained budgets, have shown little motivation to seriously address “non-priority” areas such as the needs of those with rare disorders or their family carers. The relative neglect and lost opportunities remain unaddressed.
- The history of NGO development in New Zealand, and of government contracting with them, is such that there is now considerable myth surrounding perceived ideals of innovation, creativity and efficiency in NGOs. Assumptions about gains possibly made by greater devolution to NGOs should be carefully weighed by the Commission. The myths may be especially real the longer they have existed and the larger they have become. However newer NGOs that are not deeply “embedded“ in the system, may offer the sort of innovation, flexibility and fresh thinking the paper may assume is the hallmark of NGOs.
- Government contracting processes and NGO “mission-creep” has resulted, since about the early 1990s in many instances, in the same underlying philosophy and styles of service applying whether the service is provided by government, crown entity, or NGO. The outcomes may not change at all, because of tight contracts and service specifications determined by an overarching philosophy and ideology that is resistant to innovation and change. This may be particularly so in disability support service provision.
- The philosophy and ideology pursued by the Disability Services Directorate in the Ministry of Health in its Funded Family Care payments policy, is a particularly informative and most recent example. This policy is characterised by a significant lack of trust of families, an intensely rule-bound, suspicious and inflexible approach, and includes impossibly inappropriate provisions where the severely disabled adult child is the employer, usually of their mother. The extreme lengths to avoid any ongoing role or responsibility on the part of the Ministry and the intensely bureaucratic approach, can be contrasted with the scenario of non-funded family care where the Ministry and indeed society as a whole take no direct interest at all in the welfare of the disabled adult child, and trusts the family implicitly and completely in the care they provide. This example is compounded by the ideological capture by the disability theory that the disabled person should be “at the centre” of the policy, yet this simply and conveniently shifts the Ministry’s responsibilities to a person who is almost certain to be unable to exercise them, and insults their family carer at the same time.
- One possible impact of the commissioning/contracting/devolution of funding to NGO providers is the often discussed “underfunding” of the NGO sector generally. It is possible that the past low wage discussion about the sector, is now being overtaken by the “underpayment” scenarios of equal pay breaches and minimum wage breaches for those in paid employment, with similar issues paralleled in human rights breaches for non-payment of family carers, as the most significant outcomes from government moves in this area. Beyond the real and significant gain of shifting disability support out of institutions and into the community, other possibly beneficial outcomes are hard to identify.
- For community advocacy groups, seeking incremental or even significant change within these social services through engaging with those responsible for them, is often a frustrating if not futile exercise because officials are mostly strongly wedded to the status quo. Their focus on political risk management, cautious budget management, extremely cautious approaches to any other risks, and their investment in the system as it is, leads to a lack of willingness or opportunity for creative and flexible approaches. It is clear that external forces, such as Ministerial direction, or recommendations from a body such as the Productivity Commission are needed to effect real change and drive effective outcomes. But note that regular external reports into disability support services, for example, seem to have resulted in no substantive change over a considerable period of time.
- One aim of publicly funded research is to help lessen the incidence and health burden of disease and disability, and thus in turn reduce the overall burden on health, disability and other social services, including welfare benefits. In establishing their priorities for health research, Ministers and funding bodies such as the Health Research Council, in particular, seem blinded by a simple Pareto analysis that suggests the bulk of funds should be invested in those conditions that take up the bulk of expenditure or affect the greatest numbers. This approach is valid in terms of public health outcomes such as reduction in smoking, achieving a healthy diet and exercise, and avoiding harmful exposures to reduce the onset of heart disease, cancer, respiratory disease, etc. The approach is wrong in respect of understanding the underlying biological and genetic drivers of disease. The counter-intuitive but correct analysis shows that much of what we now know about common diseases has been achieved by studying rare diseases. Future advances in the prevention, diagnosis, and treatment of common diseases, and the consequent reduction in demand on social services will come as a consequence of accelerating progress in the field of rare diseases, and research priorities should be adjusted to reflect this reality.
- The collective impact of rare disorders has been recognised in various ways in other jurisdictions, especially the US, EU, Japan and Taiwan. In essence they have recognised that rare disorders are in fact a significant public health problem that requires organised efforts to address them. Public health policies and action plans are the principal approach adopted to address to needs of rare disorders. New Zealand needs a rare disease policy and action plan, as advocated by international rare disease organisations, to address the significant impact on social services that rare disorders represent. This is set out in the table at the end of this submission.
|Areas of action||Details||Driving principles|
Ensure best antenatal care.
Folic acid fortification of food.
Preparing for life initiatives.
Best practice antenatal and newborn screening.
Better information for those at risk.
|Reduce and minimise the incidence and severity of rare disorders.|
|Early and accurate diagnosis||
Boost genetic and paediatric services capacity.
Ensure adequate budgets for testing.
Establish timeframes for diagnosis.
Review access and funding for pre-implantation genetic diagnosis.
Ensure screening from sequencing technology is implemented when clinically validated.
Early intervention saves lives and reduces costs.
Test sooner with a lower threshold for action.
Trust mum when she says “something seems wrong with my baby”.
|Optimal clinical care||
Establish national services where appropriate.
Ensure cross-boundary access to clinical expertise.
Strengthen clinical networks nationally.
Establish an orphan drugs access scheme.
Improve transition planning between child and adult services.
Ensure palliative care provision for children.
Quality of care and access to care should be determined by need, not by where you live.
Equitable care for those at significant disadvantage because of rarity.
DHB silos and professional roles should not impede delivery of optimal care.
|Improve social, community and income support||
Urgently review carer payments policy.
Review respite care system.
Aim to significantly reduce bureaucratic requirements of disability support systems.
Respect and trust those who care for disabled family members.
Give real choice and flexibility in support systems such as carer support.
|Recognise and include patient advocacy groups.||
Support their role as sources of information and peer support for patients and families.
Include advocacy groups in service design, policy and research priority advice.
|Patient/family advocacy group can play a valuable role in assisting patients and informing policy. They should be financially supported to fill these roles.|
|Give an appropriate priority to research into rare disorders.||Analyse and review research funding criteria.||
Rare disease research has much wider societal benefits. The solutions and the benefits are often counter-intuitive. Beneficial results can have exponential benefits beyond the disorder studied.