Huntington’s Disease Association of Ireland (HDAI) on means testing and disability

Huntington’s Disease Association of Ireland (HDAI) were invited to join us to address the Joint Oireachtas Committee on Social Protection, Community and Rural Development, and the Islands with regard to the impact of means testing on Disability Allowance, Disablement Pension and other social welfare schemes on 29 May 2024.

Fleachta Phelan, Policy Advocacy Manager with Disability Federation of Ireland gave an opening address and was joined by Sandra Porter, Financial Wellbeing Officer, Huntington’s Disease Association of Ireland and Padraig Hannafin, Rehab Public Affairs Research Administrator and Vice Chairperson Cork Centre for HDAI is a member of the Disability Federation of Ireland and welcomed the opportunity to join this address. Sandra highlighted the increased cost of disability for people living with neurodegenerative illness and the burden associated with an hereditary disease. 

You can read Sandra's input here: 

Means testing and disability: address to Joint Oireachtas Committee on Social Protection, Community and Rural Development, and the Islands

Sandra Porter, Financial Wellbeing Officer, Huntington's Disease Association of Ireland

Huntington’s Disease Association of Ireland (HDAI) is a voluntary organisation providing information and support to families impacted by Huntington’s disease. Huntington’s disease is a rare, inherited, and highly complex neurodegenerative disease with no currently approved disease-modifying treatments. The progressive, neuro-psychiatric and hereditary nature of the disease brings a huge burden to families affected. I work as the Financial Wellbeing Officer and this involves working with individuals and their families as they navigate the system and seek to secure their families finances in their changing circumstances. I see first-hand how difficult and stressful this is for families, at a time which is already challenging for them. It is particularly challenging if they have children.

All Huntington’s 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 ability to hold down employment and their 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, to the extent that they may not have the mental and physical stamina for an appeals process.

The removal of means testing would make supports more accessible and remove this burden both for people with Huntington’s Disease and their caregivers, who often struggle with their altered family circumstances.

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.

Our social protection system needs to understand that people living with a neurodegenerative disease will not be able to sustain paid employment, 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 - due to the unfair treatment of people with disabilities due to variables in means testing, basic rates, access to additional supports, tax relief and the lack of access to a transport access scheme since 2013 - is that while people with Huntington’s Disease struggle to keep up with prior financial commitments, they also 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 their employment, but is also not aware of or in denial about their condition due to the progression of the disease (anosognosia) , and so refuses to seek social welfare support. They can have an adverse reaction to the financial supports currently available due to the language used to describe the scheme e.g., Invalidity Pension/Disability Allowance. This leaves the household subject to extreme financial stress or poverty, depending on each family’s situation e.g., whether they have savings or investments; with mortgage and rent obligations being an immediate area of concern.

A person living with HD in most cases will leave work due to their undiagnosed symptoms and often fall through the cracks of social welfare payments, especially if their spouse or partner is in full time employment and thus they are not entitled to Disability Allowance due to the means test. In most Huntington’s disease cases a number of years pass before a diagnosis is confirmed. At this stage, the person and their family believe they are not eligible for Invalidity Pension as they did not make their claim in the “prescribed time”. A person 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’d like to offer some recommendations and suggestions around gaps and anomalies in the system that I have seen during my work to support people with Huntington’s:

• Remove all means testing for people in receipt of a social welfare support payment living with life-long and degenerative life limiting conditions or at a minimum, remove means testing for a household income of less than €100,000.
• Provide an increased universal non-means tested, non-taxable payment with an automatic entitlement for people with life-long conditions / degenerative life limiting diseases based on a medical professional’s report or diagnosis. This should be provided regardless of social insurance contributions or means, in line with the current cost of living, following the examples of the pilot Basic Income for the Arts Scheme of €325 per week and the Pandemic Unemployment Payment of €350 per week.
• Provide a separate Invalidity Pension Late Claim with Good Cause application form and make this known to the wider community.
• The Homemaker Credit Scheme should be considered as reckonable for invalidity pension.
• An automatic transfer from the non-means tested non-taxable support payment to the non-contributory state pension – removing the burden on families of the pension means test process.

Enacting these recommendations would help to ensure that no one is stuck in poverty, and individuals and families have sufficient income to alleviate some of the financial burden they face due to the increased cost of care (and the lack of provision of adequate and sufficient services by the state). This payment should have the option to continue upon reaching 66 years for life limiting diseases, to remove the need to change over to a state pension payment.

Savings and Impact of Means Testing

In the majority of HD cases, when a person has savings set aside, this is for a profoundly important reason; to provide care for adult children, grandchildren or siblings living with HD after this person has passed away.

There needs to be more consideration of how inheritance, savings 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.

A person living with HD, like so many other conditions, will need any savings they have accumulated over their working life to pay for the high costs of the multi-disciplinary care that is essential to extend and improve their quality of life or the life of a loved one. Specialist multi-disciplinary care is not automatically provided by the state to Huntington’s families; they have to bear the financial cost, or in many cases cannot afford to pay privately to give the level of care their loved one requires and deserves.

The current means test system requires a deep level of household income poverty to be eligible for Disability Allowance, with household income calculated at gross instead of net - with no consideration of mortgage, rent or any other financial obligations.

Means testing 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 as a whole and sadly in certain extreme situations a person may become homeless, malnourished, or vulnerable to exploitation.

Further HDAI Recommendations are: 

• Recognise the cost of caring/living in the allowable deductions in any remaining means assessment, allowance to include medical expenses, mortgage, rent, family car loan, dependent children and have income assessed on net value.
• Consideration needs to be given to the Cost of Disability for individuals and their families, and the risk of future disability in the case of hereditary diseases – and the resultant need for families to save carefully.
• An enhanced support system should be provided for people with disabilities - an independent holistic advice service that helps people with their claim, to replace the current system of “signposting”, providing direct referrals and warm handovers for applicants with greater support requirements. Applicants should be able to refer themselves for this support service, as well as getting referrals from health services and third-party services.
• The supports should be adequate to cover both the cost of living and the Cost of Disability – consideration should be given to the extremely high costs of certain disabilities and the need to provide whole of life supports.

Notes:

The Cost of Disability in Ireland Report 2021 estimates the annual costs of disability in Ireland range from €9,482 per annum to €11,734 per annum. It estimated a cost of €16,284  for people with severely limiting disabilities such as HD.

From the Statistical Information on Social Welfare Services Annual Report 2022 and Appeals Office Annual Report 2022, approximately 56% of disability allowance applications were refused on first application. Approximately 58% of disability allowance applications were granted in whole, in part or revised on appeal.

Ireland adopted the Intersectoral global action plan on epilepsy and other neurological disorders 2022-2031, making a commitment to improve access to treatment and quality of life of people with neurological disorders. In line with this commitment HDAI request that the any changes implemented  offers scope to improve support and access to financial welfare benefits by families living with a neurological disorder.

Ireland has ratified the International Covenant on Economic, Social and Cultural Rights, which recognises the right of everyone to an adequate standard of living, including people with a disability and their families.