EOPD.ie Budget Submission 2024

EARLY ONSET PARKINSON’S DISEASE IRELAND
PRE-BUDGET SUBMISSION 2024

INTRODUCTION

Early Onset Parkinson’s Disease (EOPD.ie) is a registered charity, providing peer Parkinson’s support
and information, all over Ireland. We are a small but committed team with big plans for the future of
the charity. As a new dynamic charity, we formed on the 7th December 2020.
Our aim is to assist people with Parkinson’s, their families and carers, health professionals and other
interested people by offering support, a listening ear and information on any aspect of living with Early
Onset Parkinson’s. Over 18,000 people in Ireland have Parkinson’s Disease with 1,800 being
diagnosed before 55. Our plans highlight the fantastic work that is done on a voluntary basis across
the country. This work is done by volunteers, many of whom have Parkinson’s or have a family
member or a loved one with Parkinson’s. Often family members are also working in caring roles.

 

The following EOPD.ie requests outlined in our Pre-Budget Submission 2024 are:

  1. Standardisation of HSE Technical Aids Grant
    Ask: Standardise HSE Technical Aids Grant Funding Assessment Model for all Community
    Health Organisations (CHOs) across the country and extend eligibility for the Technical Aids
    Grant to everybody living with Parkinson’s. People with Parkinson’s have the right to live an
    independent life and utilise a variety of aids and appliances to support them to do so. The
    Technical Aids Grant is an essential avenue to support people (aged under 65years) who are
    diagnosed with Parkinson’s to purchase equipment that can enhance independence and
    boost self-esteem. However, the Technical Aids Grant administered by the HSE has no
    standardised eligibility criteria, assessment processes, or funding allocations for aids and
    appliances across the country. Consequently, many people with Parkinson’s are unable to afford the cost of these aids and appliances and are either forced to wait for prolonged
    periods of time or must do without if they are over the age of 65, which undermines their
    right to living independently. As a result of inconsistent practices across Community Health
    Organisations (CHOs), there is extraordinarily little information available to guide people
    who need to apply for the Technical Aids Grant as to what the process entail.
  2. Reasonable Accommodation fund
    Ask: Review of reasonable accommodation fund for people with a disability who could
    remain at work for longer with support. Many people working in State-funded particularly
    Section 39 organisations can’t apply for support, if the organisation is funded over 60% by
    the State.
  3. Investment in dedicated Mental Health Services
    Ask: Early Onset Parkinson’s is seeking dedicated HSE funding of €234,000 per year to
    guarantee to establish an essential nationwide service. Receiving a diagnosis of Parkinson’s
    at any age is life changing as it affects a person’s sense of self and their independence.
  4. Accessing Social Housing
    Ask: Ringfence funding to the Disabled Persons Grant Scheme & Improvement Works which
    are administered by the Local Authorities to meet the bespoke requirements of an applicant
    who has a disability. According to research published by the Irish Human Rights and
    Equality Commission and Economic and Social Research Institute (ESRI), people with
    disabilities are more than twice as likely to report discrimination relating to housing and
    over 1.6 times more likely to live in poor conditions, such as living in damp housing, lacking
    central heating or living in an area with neighbourhood problems.
  5. Review of Housing Adaptation Grant and Mobility Aids Grant.
    Ask: Review and update the Housing Adaptation Grant and Mobility Aids Grant to recognise
    the increased cost of building and recognise the additional cost of disability when
    determining grant payments.
    The Housing Adaptation Grant for Older People and People with a Disability is available
    through local authorities when changes are needed to a home to make it more suitable for a
    person with a disability.
    The Mobility Aids Grant which is also managed by the local authorities is designed to
    provide grants to address mobility problems in the home. This Grant does not cover more
    extensive works required but can cover works such as the installation of a level access
    shower.
    It would be more cost effective to assist people in future-proofing their homes. Falls and
    issues with mobility will cost the State more in the long term rather than supporting people
    being proactive.
    Each Grant scheme is covered under the Housing (Adaptation Grants for Older People and
    People with a Disability) Regulations 2007 Act and regulations in 2014. The maximum grant
    amount available was established in the 2007 regulations and was last updated in the 2014
    amendments.           Since 2014, the cost of building has risen sharply which means the cost of completing
    adaptation projects has continued to rise yet the financial supports available to people
    through these Schemes has remained stagnant. Therefore, the additional cost is left to the
    individual to cover, which is a barrier for many. Assistive technology in the home can
    greatly enhance the lives of people living with Parkinson’s. Yet the Housing Adaptation
    Grant gives it no priority.
    In 2021, the Cost of Disability Report indicated that the highest individual extra living cost
    that a person who is living with Parkinson’s faces but cannot afford is in the area of
    adequate housing at €755 per annum. In general, this report states that the additional cost
    of disability for someone who is living with Parkinson’s is between €9,805 – 10,565 per
    annum. This extra cost should be recognised as an additional burden when determining
    grant payments.
  6. Expansion of Criteria for Disabled Drivers and Disabled Passenger Scheme
    Ask: Replace Disabled Drivers and Disabled Passengers (Tax Concessions) Regulations, 1994,
    with a needs-based grant aided vehicular adaptations scheme. VRT and VAT relief is
    available under the Disabled Drivers and Disabled Passengers Scheme for people who are
    either a disabled driver or passenger. This entire scheme has recently undergone a much needed review in the context of a broader review of mobility supports. In February 2023,
    the National Disability Inclusion Strategy Transport Working Group published its report
    proposing replacing the scheme entirely with a need based, grant aided vehicular
    adaptation. EOPD.ie welcomes this move and urges the roll out of this approach promptly
    and for people who are living with Parkinson’s or vision impaired to be eligible for inclusion
    in any new scheme.
  7. Cost of Disability
    Ask: Increase the disability allowance (€291.50) so people are not living in poverty.
  8. Cost of Living Increase
    Ask: The cost of living has risen drastically as result of inflation. However, for people living
    with a disability the impact has been greater. Energy prices have a huge impact on people
    living with a neurological condition as many are unable to regulate their temperature. Also,
    they may not qualify for Fuel Allowance, which is means-tested so many cannot afford to
    keep heat on. Their energy bills may be higher due to being at home for longer periods or
    need energy to power aids and appliances.
  9. Delivery in the community services
    Ask: Fund the rental of halls, gyms, Parish centres, and club facilities for the delivery of
    exercise classes and social events for people with neurological conditions.
    Many people with EOPD have significant costs attached to their rehabilitation and are
    funding this personally, one of the outcomes of this self-directive approach is a lesser
    impact on the allied health professionals in the acute and primary care teams. A tax
    allowance for exercise classes, Occupational Therapy and psychological counselling would
    be beneficial.

EOPD.ie 2024 BUDGET PROPOSAL
Our nine budget proposals are based on the principle that we need the right care, at the right time,
in the right place, and from the right person. EOPD.ie is asking the State to provide a
complementary suite of supports in each main hospital to support neurologists as part of an
Integrated Pathway in Parkinson’s care in line with best practice.
Early Onset Parkinson’s Disease Green book/Medical card issue
The call from us at EOPD.ie is to introduce a medical card to replace the green book. This
would simplify and reduce the anxiety and stress that is caused when People living with
Parkinsons are prescribed drugs that are not covered under the green book. Our
community is then required to pay the additional cost. We are not calling for a free medical
card but we would recommend that annual cap of €140 be placed on the new medical card.

CONCLUSION
We would welcome an opportunity to discuss any questions on this pre budget submission.
We call on the government to delivery a person-centred model, and the role out of Slainte
care plan.

Kieran Fallon
Chairperson
Early onset Parkinson’s Disease CLG

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