Moral injury in the disability sector

In this post, Lisa McEvoy, a disability advocate, takes the term moral injury, and applies it to the disability sector. In particular, she outlines the various ways in which having to go against one’s moral code in order to access (or supply) disability supports (in the way they are actually needed) can contribute to poor mental health, exacerbate feelings of isolation, and contribute to hardship.

Over to Lisa:

---

What is moral injury?

Moral injury is term that is used to describe the strong cognitive and emotional response that can occur when a person is required to violate their moral or ethical code. Potentially morally injurious events include acts of omission or commission, or betrayal by a trusted person.

Moral injury is different to post-traumatic stress disorder, is not considered a mental illness, and does not necessarily involve threats or a traumatizing event. Rather, morally injurious events threaten one's deeply held beliefs and trust. The experience of an event that requires a person to go against their moral or ethical code is what drives feelings of shame and guilt, alterations in thought and belief systems, and/or maladaptive coping responses. As a result, there is an increased risk of depression and suicidality.

Moral injury and the impact of restricting disability support

The 18 March announcement by Whaikaha - Ministry of Disabled People of changes to EMS (equipment and modification service) and to purchasing rules created confusion and distress amongst disabled people, their families, and service providers. While there have been subsequent updates and changes, assorted announcements, and an increase in Budget from Cabinet, it still remains unclear for many in the sector what is now allowed - and what is not.

This uncertainty has contributed to ongoing feelings of stress and worry for a number of disabled people and their families. It has also created uncertainty for staff working in the disability services sector. Public servants working within Whaikaha have also privately expressed their distress and angst. While there is much anger directed at ministry staff, it is worth noting that it is the democratically elected Minister who decides both the direction and priorities for their portfolio responsibilities (Ministries)¹. It is the Minister who is responsible for determining and promoting policy, defending policy decisions, and answering in the House on both policy and operational matters. It is the role of Ministry staff (public servants) to operationalise and carry out these decisions.

There are a number of perceived betrayals and ethical dilemmas stemming from the 18 March announcement. By restricting what disabled people and their families can purchase with their allocation of funding, disabled people, their families, and service provider staff have been collectively forced into making a series of ethical choices. Taken together, this comprises moral injury.

a calming image of greenery

Below, I (Lisa) outline each of these betrayals and ethical dilemmas, and the ways in which they impact on each group and contribute towards a collective sense of moral injury.

1. Disabled People

   1. Betrayal of trust: Disabled individuals were told to rely on these new systems and many subsequently trusted the government to support their independence. However, the new purchasing rules limit their ability to make choices about their own care. This violation of trust leads to feelings of anger, sadness, and a profound sense of helplessness. Individuals experience a deep sense of betrayal and disillusionment, leading to a loss of self-worth and dignity, and feeling that their needs and rights are not valued.

   2. Violation of Human Rights as enshrined in the UNCRPD: Disabled individuals feel that their rights under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) have been stripped away, leading to a pervasive sense of injustice and anger. Feelings of being dehumanized and marginalized contribute to mental health issues such as depression and anxiety. The sense of being wronged by a trusted system can lead to chronic stress and a feeling of constant vigilance against further injustices.

   3. Increased vulnerability: The new rules have restricted access to services and supports. This exacerbates existing vulnerabilities and leaves disabled individuals exposed to risks they cannot mitigate. This heightened vulnerability can manifest as chronic stress, anxiety, and feelings of insecurity. The struggle to maintain basic quality of life without adequate support has impacts for physical well-being as well as leading to despair and a sense of futility.

2. Families of disabled people

   1. Increased material hardship: Families now face additional financial and emotional hardship. The uncertainty, alongside being unable to take a break from the care work, adds to the exhaustion, burnout, and worry experienced. Family members can feel overwhelmed by the need to fill the gaps left by the restrictions, leading to feelings of guilt and inadequacy. The emotional strain can lead to conflicts within the family, further compounding stress and feelings of guilt.

   2. Conflict with personal values: In order to access the supports they and their loved one need, families are forced to make decisions that may conflict with their personal values (e.g., the desire to provide high-quality care for their loved one; honesty). This internal conflict can lead to feelings of shame and self-recrimination, as they may feel they are failing to uphold their ethical responsibilities. The stress of constantly making such difficult choices is a type of moral injury and can result in chronic anxiety and depression.

   3. Betrayal by the system: The sense of betrayal by a system they trusted to care for their loved ones leads to a profound emotional wound. Families may feel a deep sense of anger and resentment towards the authorities, coupled with a sense of powerlessness to change the situation. This can result in a pervasive sense of hopelessness and disillusionment, undermining their trust in institutions and leading to an unwillingness to seek future help.

3. Disability services staff

   1. Compromised professional integrity: Where staff cannot fulfill their professional duties due to the restrictive rules, they may feel they are failing in their role as advocates and supporters. This sense of professional failure can lead to a loss of job satisfaction, decreased motivation, and feelings of inadequacy. The moral conflict between their professional and ethical obligations and the limitations imposed by the rules can lead to emotional exhaustion and burnout.

   2. Compromised ability to advocate effectively: A perceived inability to advocate effectively for their clients can lead to feelings of frustration, helplessness, and guilt. That is, a moral injury. Staff in such situations can feel like they are letting down the individuals and families they are meant to support, which can lead to a deep sense of professional and personal failure. The ongoing struggle to navigate these ethical dilemmas can result in chronic stress and decreased job performance.

   3. Compromising human rights: Being part of a system that violates the UNCRPD places staff in an ethical bind. They may feel they are complicit in actions that harm disabled individuals, leading to feelings of guilt, shame, and ethical dissonance. This conflict between their professional role and their personal ethical beliefs can result in severe emotional distress and a sense of moral corruption. The constant ethical tension can lead to burnout, decreased mental health, and even a desire to leave the profession.

The changes in purchasing rules have far-reaching ethical implications for disabled people, their families, and service staff. Each group faces moral injury due to the erosion of trust, autonomy, professional integrity, and the potential violation of human rights. These manifestations of moral injury include emotional distress, mental health issues, and a profound sense of betrayal and injustice. Understanding and addressing these moral injuries is crucial in creating a supportive and just system that respects the dignity and rights of all involved.

Disabled people, families, and service staff all do well in a system that encourages and supports autonomy, independence, and having choice and control. Flexibility in funding enables disabled people to participate fully in all aspects of society. Flexibility in funding supports families and carers to get the breaks they need to stay well.

To be clear, the disability funding under discussion is pre-allocated. That is, disabled people and their families have already undertaken a comprehensive and robust needs assessment with suitably qualified professionals. After this gruelling process, a funding allocation is made. It is the rules around how this funding allocation can be spent that changed on 18 March, leading to ongoing uncertainty and confusion.

1. See the Cabinet Manual, the relevant chapter of which can be found here: https://www.dpmc.govt.nz/our-business-units/cabinet-office/supporting-work-cabinet/cabinet-manual/3-ministers-crown-and-public-sector/ministers-and-public-service