Having a say on health5 min read
We often talk about changing disability support services for the better, but how do changes occur? One way CCS Disability Action advocates for change is through formal submissions. CCS Disability Action’s National Policy Analyst, Phoebe Eden-Mann discusses the key points in our submission on the Health and Disability System Review and the key issues that need addressing to create an equitable system for all.
Health is a complicated concept. Firstly what is considered health? The World Health Organisation (WHO) defines health as ‘a state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity”.
Health has also been defined as the ability to adapt and manage physical, mental and social challenges throughout life. Therefore, there are a multitude of factors that play into a person’s health and wellbeing.
From housing to education to disability status to social connections, health is multifaceted. This was one of the core concepts that made up CCS Disability Action’s submission on the Health and Disability System Review.
The Review is focused on the health system and changes needed to improve it. On the whole, New Zealanders are living longer and healthier lives. There are significant differences, however, in the levels of health experienced by certain groups within New Zealand. Specifically, Māori, Pasefika and disabled people all have poorer health and wellbeing outcomes when compared to other groups.
The health system is complex with many pathways, departments and other systems that link in. There is a tendency to treat the health system as being separate from other systems (including disability-related income support, disability support services and allowances).
This is a significant issue, as people don’t tend to exist within only one system. Also many factors outside the health system strongly influence people’s lives and health. It’s not sufficient to view people through the lens of one system. This is why our submission recommended that there must be clearer links between systems and departments. There also needs to be drastically improved communication and cooperation.
Poor health outcomes
Disabled people are often at high-risk of poor health and wellbeing outcomes. They can also be high-users of the health system. The statistical outcome surrounding disabled people and health aren’t great. When asked to rate their general health status, 50.2% of disabled people said their health was ‘fair or poor’, compared to 11.1% of non-disabled people. It is also surprising to learn that the life expectancy for adults with learning disabilities is significantly lower than for non-disabled adults.
Although some learning disabilities can have physical implications which have the potential to reduce life expectancy, the difference cannot be solely explained by this. This suggests that the level and quality of health care that people with learning disabilities receive is poorer. Clearly identifying the reasons for this disparity and making a plan to address the causes raised, is essential to ensure an equitable health system.
The Review asked what the ideal system would look like by 2030. This is a big question as evidently there is a lot that needs to improve. But broadly, by 2030, we would expect that not only the self-rating of general health status would improve across the board, but that life expectancies of disabled people would also increase.
There is significant disparity in support given to those who acquire an impairment due to an accident and those who do not. ACC provides substantially more support which is unavailable to disabled people whose impairment was not the result of an accident. With ACC, supports are put in place to ensure people are (for the most part) financially secure, as well as providing treatment, equipment, and transport costs. With disabled people not under ACC the support available is rarely sufficient. ACC is on the whole a wonderful scheme that provides security for those who need it. We are concerned, however, about the disparity of support. Our recommendation was to reduce the disparities, as there should be no difference in support available, support must be equally and easily accessible to all.
Empowerment and participation
Meaningful participation on an equal basis with others is a right that is guaranteed by the Convention on the Rights of Persons with Disabilities. It is also a vital component when it comes to improving the experiences of disabled people within the health system. People must be supported to be able to contribute and participate in decisions that affect them. Having the opportunity to participate in discussions and decisions that are made by professionals (medical or otherwise) has the potential to reduce feelings of isolation and disempowerment.
Ensuring disabled people are supported to participate in decisions that affect them is a critical step towards improving their experiences within the health and disability system. We recommend that people should be supported to participate in decisions. We recommended that the health system should be founded on the principle that disabled people receive empowering, equitable, and effective healthcare.
Mental health and wellbeing statistics are also cause for concern, with young disabled people being three times more likely to develop a diagnosable psychiatric disorder compared to their non-disabled peers. Disability is not a cause of poor mental wellbeing, but it is a risk factor. Communication barriers caused by profound and multiple learning disabilities for instance, can cause healthcare professionals to miss the signs of poor mental wellbeing.
We are concerned that unless specific attention is paid to disabled people and their mental wellbeing that they may slip through the cracks of any initiative that is implemented. Bearing that in mind, we recommended that any initiative is made accessible to all, with initiatives being designed in conjunction with disabled people.
The Health and Disability System Review is an enormous undertaking and it’s unlikely that it will be a quick or entirely smooth process. However as we outline in our submission, we see plenty of scope to make improvements in the principles, design, implementation and the experience of the health system for all people, but especially for disabled people.