Submitted by: Complex Chronic Illness Support (CCI Support) 4/6/2026
Thank you for the opportunity to submit on the Disability Support Services Bill.
Complex Chronic Illness Support (CCI Support) is a New Zealand charitable organisation providing support, education, advocacy, and wellbeing services for people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia, Dysautonomia and Long COVID. We support nearly 1,000 people throughout Aotearoa New Zealand and work alongside their whānau, carers, and support networks. However, in New Zealand there are as many as 200,000 people affected by these illnesses.
Our members include people who are mildly affected and able to participate in some aspects of community life, through to individuals who are housebound, bedbound, and entirely dependent on others for their daily care and survival.
CCI Support supports the intent of having a clear legislative framework for Disability Support Services. However, we have significant concerns about aspects of the Bill and the process by which it has been developed. We believe the Bill, in its current form, risks creating uncertainty for people with disabilities and their families while shifting greater responsibility onto whānau and unpaid carers without adequate safeguards.
Concerns about the development process
We share the concerns raised across the disability and caring communities regarding the limited consultation undertaken before the Bill was introduced and the extremely short timeframe available for submissions.
People living with ME/CFS, Fibromyalgia, Long COVID, and dysautonomia often experience debilitating fatigue, cognitive impairment, sensory sensitivities, pain, and limited functional capacity. Many require support to access information, understand complex policy documents, and participate in consultation processes.
Meaningful engagement is not simply a procedural step. It is essential to ensuring legislation reflects the realities of the people most affected by it. We are concerned that disabled people, whānau, carers, and representative organisations were not sufficiently involved in the design of this legislation before it was introduced.
We also note concerns raised by disability organisations regarding the absence of explicit reference to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and the Enabling Good Lives principles. These frameworks have played a critical role in shaping disability policy in New Zealand and should remain central to any legislative framework governing disability support.
Family and whānau support must not replace funded support
CCI Support’s greatest concern relates to the emphasis placed on family, whānau, and natural supports within the Bill.
Many of our members already rely heavily on unpaid care provided by partners, parents, adult children, friends, and whānau. For people living with severe and very severe ME/CFS, support needs can be substantial and ongoing. Individuals may require assistance with personal care, meal preparation, communication, transportation, healthcare coordination, household management, and other activities of daily living.
While family members often provide care willingly and with love, this support frequently comes at significant personal cost. Many carers reduce their working hours, leave employment altogether, experience financial hardship, social isolation, and declining health. Some of our members are cared for by ageing parents who are themselves experiencing health challenges.
We are concerned that the Bill may unintentionally create an expectation that families should provide care before government-funded support is available. Such an approach risks increasing pressure on families who are already providing extraordinary levels of unpaid support.
Disabled people should not have their access to support determined by whether they have family members available to care for them, nor should family carers be expected to provide unlimited care without appropriate recognition and support.
It is important to recognise that not all disabled people have access to family or informal support networks. Many of our members live alone and manage complex health conditions without regular assistance from family, friends, or whānau. Any assumption that natural supports are available risks disadvantaging those who are already among the most vulnerable members of our community.
We also support a significant number of individuals whose primary caregivers are elderly parents. Many of these parents have provided care for years, or even decades, often while managing their own health conditions and age-related challenges. As these carers age, families face increasing uncertainty about who will provide care in the future. Disability support policy must acknowledge that family caregiving capacity is not unlimited and cannot be assumed indefinitely.
Invisible and fluctuating disabilities must be recognised
People living with ME/CFS, Fibromyalgia, and Long COVID frequently experience profound disability that is not immediately visible to others.
These conditions are characterised by fluctuating symptoms and varying levels of functional capacity. An individual may appear well during a brief interaction while experiencing significant limitations that affect every aspect of daily life.
Many of our members report difficulties accessing services and support because their disability does not fit traditional assumptions about what disability looks like. We are concerned that without explicit recognition of invisible and fluctuating disabilities, existing inequities may continue.
Disability support systems must recognise functional impairment and participation restrictions, regardless of whether a person’s disability is visible.
The emergence of Long COVID has highlighted the growing number of New Zealanders experiencing long-term disability following illness. Many people with Long COVID experience symptoms and functional limitations that closely mirror those seen in ME/CFS, including post-exertional symptom exacerbation, cognitive impairment, autonomic dysfunction, and severe fatigue.
As the number of people living with Long COVID continues to grow, so too will the demand for disability support services. The disability support system must be prepared to respond to this increasing need and ensure equitable access to support for people living with post-viral and complex chronic conditions.
The Bill creates uncertainty about future support
We are concerned that significant aspects of Disability Support Services may be determined through future regulations and programmes rather than through primary legislation.
Our members require stability and certainty. Many are unable to work due to the severity of their conditions and rely on disability supports to maintain their wellbeing and independence.
The possibility that future eligibility criteria, support arrangements, or funding settings could be altered with limited consultation creates understandable anxiety for disabled people and their families. This concern is heightened by discussion within the disability community about the potential for future income or asset testing.
While the Bill does not currently introduce these measures, we believe stronger safeguards and greater transparency are needed to ensure disabled people can have confidence in the future of the support system.
Our experience supporting people with ME/CFS, Fibromyalgia, Long COVID, and dysautonomia demonstrates that delayed or inadequate support often results in worsening health outcomes. Individuals who do not receive timely assistance may experience greater functional decline, increased social isolation, financial hardship, mental distress, and reduced quality of life.
Early intervention and appropriate support can help people maintain independence, remain connected to their communities, and prevent deterioration that may otherwise require more intensive and costly services.
Family carers deserve recognition and protection
Family carers are an essential part of New Zealand’s disability support system. Their contribution enables many disabled people to remain safely within their homes and communities.
The value of this care is enormous, both socially and economically. However, family carers often provide intensive support with limited recognition and inadequate access to respite, wellbeing services, financial support, or employment protections.
We are concerned that the Bill focuses on clarifying legal responsibilities without providing equivalent assurances regarding the rights, wellbeing, and protection of family carers.
A sustainable disability support system must recognise that supporting disabled people and supporting family carers are interconnected goals.
Investment in appropriate disability support and caregiver assistance should be viewed as a preventative measure rather than a cost. Supporting disabled people and their carers early often reduces the need for crisis intervention, emergency healthcare utilisation, hospital admissions, and replacement care when family caregivers experience burnout.
In our experience, the cost of providing appropriate support at the right time is frequently far lower than the financial and social costs associated with unmanaged illness, caregiver exhaustion, and avoidable health crises.
Recommendations
CCI Support recommends that the Select Committee:
- Amend the Bill to clearly state that family and natural supports complement, rather than replace, funded disability supports.
- Ensure access to Disability Support Services is not reduced because a person has family members who may be available to provide care.
- Include safeguards requiring assessment of caregiver wellbeing, sustainability of care arrangements, and risk of caregiver burnout.
- Explicitly recognise invisible, episodic, and fluctuating disabilities, including ME/CFS, Fibromyalgia, Long COVID, and dysautonomia.
- Ensure eligibility and assessment processes focus on functional impairment and participation restrictions rather than visible impairment alone.
- Require meaningful consultation with disabled people, whānau, carers, and representative organisations before significant changes to eligibility, funding, or support entitlements are made.
- Strengthen legislative safeguards so that key rights and protections cannot be altered solely through future regulations.
- Require future Disability Support Services policies and programmes to align with the principles of the UNCRPD and Enabling Good Lives.
- Strengthen recognition, support, and protection for family carers, including access to respite, wellbeing support, and fair recognition of intensive caregiving responsibilities.
- Ensure Disability Support Services policies and assessment processes recognise post-viral illnesses and complex chronic conditions, including ME/CFS and Long COVID, as legitimate causes of significant disability requiring equitable access to support.
- Establish ongoing mechanisms for meaningful participation by disabled people, carers, whānau, and representative organisations in future disability policy development.
Conclusion
The success of any disability support system should not be measured by how much unpaid care families can absorb. It should be measured by whether disabled people are able to live with dignity, choice, safety, and meaningful participation in their communities. Family carers are a vital part of that picture, but they cannot be expected to carry the responsibility alone.
People living with ME/CFS, Fibromyalgia, Long COVID, and dysautonomia already face significant barriers to healthcare, social participation, employment, financial security, and disability support.
A Disability Support Services framework should strengthen the rights, wellbeing, independence, and dignity of disabled people while recognising the invaluable contribution of whānau and family carers.
CCI Support urges the Select Committee to reconsider aspects of the Bill that risk increasing reliance on unpaid care, reducing certainty for disabled people, and limiting meaningful participation in decisions that affect their lives.
We believe a stronger and more sustainable legislative framework can be achieved through genuine partnership with disabled people, whānau, carers, and the organisations that support them.
Thank you for considering our submission and I am open to speak to the Select Committee on behalf of our members and others in New Zealand with the conditions we support.
Miranda Whitwell
CEO- Complex Chronic Illness Support.