Today, 3rd December, is International Day of Persons with Disabilities. Census figures suggests that 13.5 per cent of the population, or 643,121 people, experience disability. This represented an increase of 47,796 persons (+8 per cent) on the 2011 figures. Disability policy was set out in the National Disability Strategy from 2004 (and its 2013 Implementation Plan) and, more recently, in the National Disability Inclusion Strategy, 2017-2021. The HSE has committed to a national programme, Transforming Lives, intended to build better services for people with disabilities. There are many areas within the disability sector in need of further development and core funding, and an ambitious implementation process needs to be pursued.
People with disabilities were cumulatively affected by a range of decisions introduced as part of successive austerity Budgets. These included cuts to social welfare payments, changes in medical card eligibility, increased prescription charges, and cuts to supports such as respite, home support hours and housing adaptation grants. People with disabilities experience many challenges. The Central Statistics Office reports that 43 per cent report some form of depression, well above the average (of 14 per cent) (Central Statistics Office, 2020). Disability is also strongly associated with poverty in Ireland. Among people who are unable to work due to illness or disability more than one in three (35.4 per cent) live on an income below the poverty line (Social Justice Ireland, 2020). Among those who are able to work many people with a disability are unemployed; a classification where more than four in ten are in poverty. Social Justice Ireland (2020) welcomed the additional €100m for disability health services in Budget 2021 in line with Transforming Lives Programme and the UN Convention on the Rights of Persons with Disabilities. On the other hand, we expressed regret that there was no increase in the Disability Allowance and in respect of failure to introduce a cost of disability payment despite a previous commitment to commissioning work on this issue. If people with a disability are to be equal participants in society, the extra costs generated by their disability should not be borne by them alone. Progress on this issue is long overdue.
Medical Needs and Supports
In December 2018, it was announced that the medical card earnings disregard for persons in receipt of Disability Allowance would be increased, intended to provide that more people will retain access to a Medical card while they work. Another development concerns carers who (since 2018) became entitled to free GP care if they are in receipt of full or half-rate Carer’s Allowance or Carer’s Benefit. These are welcome measures that help ease the financial strain on people with disabilities or on families caring for a person with disabilities. However, research highlights ongoing problems for disabled people, especially in respect of community and home supports. Examples are already given above relative to delays in delivery of assessments of need for children with disabilities and in respect of community mental health services for children and young people. One study suggested that almost 1,500 younger people with disabilities are residing in nursing homes in Ireland, in part because community supports are not sufficient (Pierse, Kilcullen and Duffy, 2018). And, as highlighted already, research from the ESRI suggests that that 34 per cent of disabled adults have unmet needs for home care (Privalko et al, 2019). That report also found that in comparison with other countries, in Ireland, adults with a disability receive relatively little formal home care. The Central Statistics Office (2020a) found that approximately a quarter of persons with disabilities report having unmet health care needs due to waiting times, compared to a State average of 14 per cent.
Disability and Health Policy
A range of policy documents over recent years have proposed major changes in the way that disability services are delivered. Amongst them, The Value for Money (VFM) & Policy Review of Disability Services in Ireland 2012 recommended radical transformation. Recent HSE Service plans suggest that there has been some progress setting up the structures and processes necessary to implement the type of change-programme envisaged. However, Social Justice Ireland is concerned that the pace of change is too slow and that additional targeted resources will need to be provided to ensure that a comprehensive and lasting system-wide change initiative is delivered to the benefit of service users and local communities. Social Justice Ireland called for a dedicated reform fund to support the transition to a new model of service, given the scale of infrastructural development required to move away from communal settings towards a community based, person-centred model of service.
A Taskforce on Personalised Budgets recommended that the Department of Health and the HSE should establish demonstration projects with a view to identifying the best approach to the wider roll-out of these payment models. As mentioned, work is also ongoing relative to establishing a statutory homecare scheme, which was welcomed by Social Justice Ireland. People who responded to the consultation process involved felt that there should be a comprehensive policy framework, integrating care with health, disability, older people, carers, housing and transport policies, all of which were considered vital for wraparound support for people living at home for longer (The Institute of Public Health, 2018). We are still waiting to see whether the scheme that emerges from this process is capable of doing so and are concerned that the implementation of the new scheme appears to be delayed until 2022.
Disability and Housing
According to Census 2016 (Central Statistics Office, 2017), 19.3 per cent (112,904 people) of persons with a disability were living alone, accounting for 28 per cent of all persons living alone on Census night. Both the number of persons with a disability, and the rate of living alone among those persons has increased since 2011. A further 44,531 persons with a disability lived in communal establishments, a reduction of 421 (0.9 per cent) on 2011. A total of 49,426 persons in the State aged 65 and over were living in communal establishments, with 31,033 being persons with a disability. Of these people aged 65 and above, 20,702 were living in nursing homes, 6,866 were in hospital and 3,465 were reported as living with religious institutions, shelters and refuges on Census night 2016 (Central Statistics Office, 2017).
In the breakdown of Accommodation Requirements in the Summary of Social Housing Needs Assessments, 4,000 households reported, within the specific breakdown of housing requirements, a household member as having an enduring physical, sensory, mental health or intellectual disability, a decrease of 3 per cent on the previous year (Housing Agency, 2020). A breakdown of the Main Need for Social Housing Support shows that 5,800 households reported some form of disability, a decrease from 6,173 the previous year.
The National Housing Strategy for People with a Disability 2011-2016 was established to ‘facilitate access, for people with disabilities, to the appropriate range of housing and related support services, delivered in an integrated and sustainable manner, which promotes equality of opportunity, individual choice and independent living’ (Department of the Environment, Community and Local Government, 2011, p. 7) through the achievement of nine strategic aims. This Strategy was affirmed and extended to 2020 under the Government’s ‘Rebuilding Ireland’ programme.
In 2019, funding was allocated or increased to a number of schemes to support housing for older people and people living with a disability. In March 2019, the Minister of State for Housing and Urban Development announced a €71.25 million fund for Housing Adaptation Grants for Older People and People with a Disability, an increase of 8 per cent on the previous year. In June 2019, the Minister for Housing, Planning and Local Government and the Minister of State for Disability Issues announced €15.075 million in funding for the Disabled Persons Grant (DPG), which supports adaptations and extensions to existing Local Authority housing stock, and the Improvement Works in Lieu of Local Authority Housing Scheme (IWILS) which supports improvements or extensions to private housing stock where the tenant has been approved for social housing, “meeting their social housing need” and reducing the waiting list for social housing. These schemes are important and necessary, and the increases are to be welcomed, however they are still catching up from previous years of underfunding.
In 2014, extensions to 89 local authority houses were commenced under the Extensions to Local Authority Housing Scheme (as it is referred to in the Housing Statistics section of the Department of Housing, Planning and Local Government’s website), with a further 51 approved but not yet commenced. In 2017, works on just 28 Local Authority houses had commenced, with approvals for a further 9. By the end of 2019, 110 extensions had been commenced, with a further 32 approved.
The scheme to improve private properties (IWILS) has not been so successful, notwithstanding the increase in funding. In 2014, works had completed on 105 properties and was in progress on 1 more. By the end of 2019, works in respect of just 2 houses had been completed, with 4 more in progress. While the majority (almost 69 per cent) of people living with a disability own their own home with or without a mortgage (Central Statistics Office, 2017b), 12.4 per cent are living in the private rented sector (an increase of almost 13 per cent in real numbers of persons living with a disability in the private rented sector compared to Census 2011). The IWILS scheme is only available to people who are deemed eligible for social housing, which would exclude most of the 69 per cent who are owner occupiers. There is little incentive for private landlords to modify their properties to meet the needs of tenants living with a disability or older tenants when they could attract equal or higher rents with new tenants.
Housing Adaptation Grants is the collective term given to the three grants: Housing Aid for Older People, Housing Aid for People with a Disability and Mobility Aid Grant. These grants are provided to eligible people to modify their own homes, allowing them to live at home, within their communities, for longer. Given the large proportion of people living with a disability who own their own homes, the Housing Adaptation Grants are especially important. In 2010, a total of €77.3 million was paid in respect of 13,588 grants. These grants were subject to cuts during the austerity years, and in 2013 reached their lowest point in the decade, with €37.7 million paid in respect of 7,011 grants, less than half 2010 levels. Building on moderate increases since 2015, the total amount paid in respect of these grants in 2018 was €51.2 million in respect of 9,413 grants. An improvement on 2013, but still just two-thirds of 2010 levels.
Social Justice Ireland welcomed the increase to Housing Adaption Grants in Budget 2021, however the scale of the issue shows there is much more to be done.
In addition, delays in accessing the necessary Occupational Therapists to certify a need for home modifications means that people living with disabilities may be at risk in their homes due to lack of necessary works.
Disability and Education
The number of children with special needs at primary level in Ireland increased by 63 per cent between 2014 and 2018 (Department of Education and Skills, 2019). These children require particular supports and the announcement of the School Inclusion Model pilot by the Department of Education in 2019, and its continuation into 2020/21, was welcome. Of particular concern, however, in light of the increased intake of children with special needs, is research that found one in four children with an intellectual disability or developmental disability has been put on a short school day (Brennand & Browne, 2019). The report outlined the detrimental impact that this is having on children with additional needs, their education and on their families. Covid-19 and extended school closures has had a devastating, and likely lasting, impact on these children and their families. Notwithstanding the increases in investment in Special Needs Education in recent Budgets, clearly much more remains to be done in order to meet demand, mitigate the impact of extended school closures, and to support schools to ensure that they have the required number of staff with appropriate qualifications, and the necessary programmes, supports and resources to meet the needs of this cohort of pupils. In terms of planning and resourcing, it is vital that all departmental projections take into account the needs of this cohort as they move from primary level to post primary and beyond.
Disabled people need to be supported, not only by the health service, but by the Department of the Environment through Local Authorities with regard to housing need, through the Department of Social Protection in terms of income supports, as well as by the Department of Education through education and training.
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