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.