How I see it … A broken system

As a deafblind woman who is articulate and has worked in the healthcare sector, interaction with government agencies is still necessary and can be extremely challenging.

In my experience, our system is flawed. One of the fundamental issues lies in the negative and deficit perception of disability often fostered within our society and institutionally in health and disability services.

In the past, disability has often been viewed through a lens of deficit or as something negative. In today’s society, this perception appears to have transformed into the belief that disability is a problem that needs to be fixed to align with societal norms. This perspective can have significant consequences and impact the trust individuals have in the health and disability system.

In the following blog post, I will describe a personal situation where a service agency has considerably affected my ability to trust our health and disability system. By sharing this experience, I hope to shed light on the challenges faced by individuals with disabilities and the importance of fostering trust, empathy, and understanding within our healthcare system. Together, we can work towards a more inclusive and supportive environment where everyone feels valued and their needs are met with dignity and respect.

In the past, I have received repeated assurances from the organisation involved that my disability is permanent and meets their criteria for blindness. There will be no future need to re-establish this fact as this decision has been to their health team and principal advisor in the past. Even with these reassurances, I still have recurring demands to prove the extent of my disability and threats or actual services stopped at each interaction.

The situation above undermines not only my lived experience of disability but also erodes my trust in the support services designed to assist individuals in similar circumstances. The emphasis on proving the extent of one’s permanent disability can be profoundly demoralising, distressing, and prolonged, further exacerbating the challenges already inherent in navigating life living with access needs.

Drawing a thought-provoking comparison between the justice system and how people with access needs are treated in society can highlight important disparities. In the justice system, the principle of “innocent until proven guilty” ensures fairness and protects individual rights. Once a decision is reached in a trial, it generally remains unless challenged through an appeal process.

However, for individuals with access needs, particularly those with proven permanent disabilities, it can be disheartening that their disability status is continually questioned or subjected to reassessment. This contrasts the justice system’s approach, where the burden of proof lies with the prosecution. In the case of disability, it seems more equitable to adopt a “disabled until proven otherwise” mindset. Requiring individuals to repeatedly prove their disability can foster an environment of distrust, casting doubt on the credibility of the individuals and the healthcare professionals involved in determining their level of impairment.

By recognising the parallel between the justice system’s presumption of innocence and adopting a similar approach for disability, we can promote a more inclusive and empathetic society. Such an approach would prioritise trust, understanding, and respect for individuals with access needs, alleviating the burden of constantly reaffirming their disability status.

The below interaction is one I have around every six months with a particular agency providing support services to those with access needs. This occurred again yesterday (the third time in under two years) and as a result, I am left feeling devalued by agencies that interact on behalf of the society I live in.

After providing my identifying details and engaging in a conversation, I initially believed that everything was in order and no further interaction was required. However, I later received a phone call stating that I no longer meet the agency’s criteria to be classified as blind and they are withdrawing their support services.

This immediately made me believe that for some reason I wasn’t worthy of their support. On further questioning, this was without any new information being requested, presented or obtained beyond what had already been examined and approved as being used to determine I am blind on two separate occasions. This illustrates the power that one person or organisation can have in determining anothers life path or future.

Ever the advocate, I checked their website and publically available manuals, as well as legislation around blindness and none, had changed since last time. Thefore, I asked for specific details on where I no longer met their criteria. Still, instead of receiving a direct response, I encountered avoidance and the need to consult with their manager.

When the manager did reach out, they stated that their health team believed I no longer met their criteria. In response, I provided copies of all of the documentation, which had been examined and deemed sufficient to meet their criteria for permanent blindness previously.

I explained that this contradicted your ophthalmologist’s assessment and the supporting documentation and referred the manager back to the letter containing my assessment that used the same language and criteria published by the agency to prove my blindness once again; I was told that they would need to go back to the health team to clarify.

Later, the manager informed me that the health team would seek advice from a Principal Health Advisor and get back to her … and now I wait … to find out if I am deemed disabled enough to recieve services that I have been assessed as requiring permanently and been recieving for several years now.

This sequence of events highlights the inconsistencies, lack of communication, and delays within the agency’s decision-making process. The fact that multiple layers of consultation and review are required after assurance on several occasions, I am eligible, meet their criteria as blind having gone through managers and health advisors in the past and would not be asked again is not only confusing but distressing.

The threats of service cessation have been conveyed predominantly over the phone, without a written record of the challenge to disability status; therefore the interactions and related power imbalance involved remains invisible. Open communication that is visible is required, along with active engagement between individuals with disabilities, healthcare providers, and service agencies, is crucial in fostering trust, enhancing understanding, and promoting inclusivity.

By involving all relevant parties in the decision-making process and maintaining transparent lines of communication, we can ensure that eligibility decisions are made fairly, with empathy and transparency. This approach helps mitigate the distress caused by sudden and unexplained changes in service provision. Having a documented record of discussions and decisions provides clarity, accountability, and an opportunity for individuals to voice their concerns, thereby fostering a more inclusive and supportive environment for individuals with disabilities.

It is important that service agencies recognize the significance of open communication, actively engage with individuals with disabilities, and collaborate with healthcare providers to ensure that decisions regarding eligibility and service provision are made in a fair and transparent manner.

New Zealand has taken significant strides in tackling these issues through the implementation of the enabling good lives principles. This approach holds great promise in transforming the perception of living with a disability and empowering individuals with access needs. While commendable, it is important to acknowledge that the services aligned with these principles encounter hurdles rooted in their current systems and processes. By addressing these challenges head-on, we can bridge the gap between theory and implementation, thereby ensuring that the true essence of Enabling Good Lives is fully realized. This will allow individuals with disabilities to access the support and assistance they deserve, free from unwarranted scrutiny and uncertainty. With a collective effort, we can foster a society that embraces inclusivity, optimism, and empathy for all its members.

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