Ms Sandra Porter:

I work as the financial well-being officer for the Huntington’s Disease Association of Ireland. Huntington’s disease is a rare, inherited, and highly complex neurodegenerative disease that places a huge burden on families affected. My work involves supporting individuals and their families as they navigate the system and seek to secure their family finances in their changing circumstances. I see first-hand how challenging, difficult and stressful this is for families and it is particularly challenging if they have dependent children.

Many families experience a financial burden ranging from extreme financial stress to poverty due to the degenerative nature of the disease. This is directly linked to both a person’s inability to hold down employment and a lack of access to financial supports due to means testing. Means-testing is a very arduous process for a person experiencing cognitive or mental health difficulties. A claim refusal is devastating for a person in need of support. The disability allowance application process is already very stressful, confusing and difficult, and the idea of making an appeal is exhausting and daunting to most. The removal of means-testing would make supports more accessible and remove this burden for people with Huntington’s disease and their caregivers, who often struggle with their altered family circumstances. The current means test system requires a deep level of household income poverty to be eligible for disability allowance, with household income calculated on a gross rather than net basis, with no consideration of mortgage payments, rent or any other financial obligations. Our social protection system needs to understand that people living with a neurodegenerative disease will not be able to sustain paid employment and, therefore, it is imperative that welfare payments are sufficient and accessible to cover the extra costs of disability to protect them from poverty.

The stark reality is that while people with Huntington’s disease struggle to keep up with prior financial commitments, they also have to worry about a bleak financial future. Families with a parent living with Huntington’s disease may fall into poverty during the period when the person is not able to maintain his or her employment. Due to cognitive or mental health changes a person may be unaware of, or in denial about, his or her condition and so refuse to seek disability supports. This leaves the household subject to extreme financial stress or poverty, depending on each family’s situation and whether they have savings or investments, with mortgage and rent obligations being an immediate area of concern. In the majority of cases, people living with Huntington's disease will leave work due to their undiagnosed symptoms and they often fall through the cracks of social welfare payments. A number of years may pass before a diagnosis is confirmed. At this stage, the person and their family may believe they are not eligible for an invalidity pension as they did not make their claim in the prescribed time. People living with Huntington’s and other neurodegenerative conditions may have worked for all their adult life, for decades, up until the point their symptoms manifest.

I would like to offer some recommendations and suggestions around gaps and anomalies in the system that I have seen in my work supporting people with Huntington's disease and their families. We should remove all means-testing of disability payments for people living with lifelong and degenerative, life-limiting conditions or at a minimum, remove means testing for a household income of less than €100,000 per annum. We should provide an increased universal, non-means-tested, non-taxable payment with an automatic entitlement for people with lifelong conditions and degenerative, life-limiting diseases. We should recognise the cost of caring and living in the allowable deductions and in any remaining means assessment, income should be assessed on a net basis. We should consider the cost of disability and the risk of future disability in the case of hereditary diseases and the resulting need for families to save carefully. Consideration should be given to the provision of an enhanced support system for people with disabilities, including an independent, holistic advice service that helps people with their claims, to replace the current system of signposting with direct referrals and warm handovers for applicants with greater support requirements.

On the issue of savings and the impact on means-testing, in the majority of cases when a family has saving set aside, this is for a profoundly important reason, which is to provide care for adult children, grandchildren or siblings living with Huntington's after this person has passed away. There may also be a fund set aside for funeral costs. There needs to be more consideration of how inheritance and disability allowance can coexist. A person-focused approach is required to understand the long-term needs and costs of a person and their family living with a disability. People living with Huntington's disease and many other conditions will need any savings they have accumulated over their working life to pay for the high costs of the multidisciplinary care that is essential to extend and improve their quality of life or the life of a loved one. Specialist multidisciplinary care is not automatically provided by the State and Huntington’s families have to bear this cost. In many cases, they cannot afford to give the level of care their loved one requires and deserves.

The current means test system also forces people living with a disability to be financially reliant on their partners or family. They will have lost so much already and the removal of their financial independence can cause huge stress and distress, depending on their family situation. This increases financial strain on the family household and sadly, in certain extreme situations, a person may become homeless, malnourished, or vulnerable to exploitation.

A member in the previous sitting mentioned possible incremental changes. HDAI can make recommendations on incremental changes and the gaps we have observed. The introduction of a separate cost-of-disability weekly payment of €40 would be welcome. The homemaker credit scheme should be considered as reckonable for invalidity pension. An automatic transfer from disability allowance to the contributory State pension for people with life-long conditions would remove the burden on families of the pension means test process and the tax on invalidity pension and carer's allowance should be removed.

Ireland should move to a person-centred and person-outcome-focused approach to disability supports, particularly for people who have more complex and poorly understood symptoms. A holistic approach to assessment is imperative, as is enshrined in the UNCRPD.