Experience of Disability: Ireland

Prevalence of Disability

Over the past 20 years, there have been repeated criticisms about the lack of reliable data on disability in Ireland. Since the late 1990s, the Irish Health Research Board (HRB) has undertaken the measurement of the numbers of people with intellectual disability and those with physical and sensory disability in Ireland. In 1995, the HRB began compiling the National Database of individuals with intellectual disability in the country. The HRB is also currently compiling the Physical and Sensory Disability Database, which will be used for planning developments and prioritizing service needs. A recent report shows that there were 26,668 people registered on the National Intellectual Disability Database in 2001, representing a prevalence rate of 7.35 per 1,000 of the population. The report noted that the total number with more severe levels of intellectual disability has grown by 31 percent since 1974 when the first census of this population was conducted. This increase is attributed to the general population increase over the period, improved standards of care, and an increase in the lifespan of people with intellectual disability.

The report also shows an increase in longevity in those with intellectual disability with those ages 55 years and older, who now represent 11.3 percent of all those with intellectual disability in Ireland. However, a most significant change is the large increase in those with disability currently in the ages 34–54 group. This cohort has now grown from 19 percent of the overall population of those with intellectual disability in 1974 to 32 percent of the overall population in 2000. The impact of this aging population of people with intellectual disability has major implications for service planning and provision. It is likely that data compiled on numbers of people with physical disabilities will show similar patterns of increased life expectancy.

Nongovernmental Organizations in Service Provision

A unique aspect of the provision of services to disabled people and their families in Ireland is the major role played by voluntary (nongovernmental) organizations in the development of services for those with disability and their families. The growth of such organizations is often derived from the work of individuals, concerned groups, and religious orders trying to address gaps in state service provision. Other disability services have evolved from other medical services founded to respond to specific medical situations such as the tuberculosis epidemic of the 1940s and a serious outbreak of poliomyelitis in the late 1950s. Some voluntary organizations address the specific needs and issues of a single condition such as cystic fibrosis, muscular dystrophy, or multiple sclerosis. Fewer, larger organizations encompass a wider range of disabilities in their brief such as the Irish Wheelchair Organization for adults with a variety of physical conditions that impact on their mobility. Services for those with intellectual disability are also largely provided by voluntary organizations and are provided primarily on a geographic basis to individuals and their families.

Traditionally, Irish voluntary organizations have played both a pioneering and a reactionary role in the development of services for people with disabilities. They have also played a key role as pressure groups, trying to keep the issues of a particular condition or the situation of people with a range of disabilities on the political agenda. In the absence of state provision, they have played a major part in creating and providing a wide range of health and personal social services such [Page 670]as physiotherapy, occupational therapy, speech therapy, social work, family support, and respite care. Voluntary organizations rely on a combination of state funding and resources raised from fund-raising. Over time, state funding has become an increasingly significant factor in service provision, and the laissez-faire arrangements for such funding have been replaced by contractual agreements between the statutory payers and the voluntary providers in which the respective obligations of accountability and transparency are defined.

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