28 Focus
Navigating ID services Trying to access the ID services in Ireland can be like trying to find your way without a map, writes Jacinta Mulhere
The participants outlined the difficul- ties they encountered when first finding a service for their relative. Several said that if you lived in an area where there was an established disability service then it was easier to seek assistance. When some par- ticipants spoke about their attempts to access necessary services, the language they used evoked images of adversaries, as this participant says, “you were always fighting for a service”. Signposts What frustrated participants most was the lack of signposts to direct them to the services that they required or to the services they would require in the future. Another aspect of the lack of signposts for families was the need to plan ahead while not knowing if their relative would be able to avail of the service the following year. One participant, whose son was 18 years of age and about to leave school, outlined the difficulties she faced as she did not know what type of service her son was going to attend in September (this inter- view took place in May of that year). She said the following: “We don’t know what’s going to happen, there are no guarantees, and we are still in limbo at the moment”. She expressed a deep sense of powerless- ness felt by many of these families. Another participant outlined how they accidentally found out that an additional service they required was on the campus where their relative was attending, but no one had told them about it, stating: “We were never told this service was on site. I don’t know if they were afraid to tell us.” Moving from congregated settings Some of the participants outlined how they were summoned to meetings and told
descriptive approach was implemented using semi-structure interviews, a topic guide and purposive sampling to col- lect the data. Colaizzi’s framework for data analysis was adapted to analyse the data from the transcribed taped inter- views. 7 Eight family members (seven females, one male) were interviewed with the average age of their relative being 40 years of age. The main themes that emerged from this study related to first encounters, signposts, moving to the com- munity and raising issues of concern. First encounters All participants outlined the effects of meeting a professional at the first point of contact. If the first encounter was sup- portive then the families felt more positive about their child’s future. Several of the par- ticipants, however, were given the ‘worst case scenario’ and believed that their child would not lead any sort of normal life. This gave them little or no hope for the future, but in many situations their relative defied the poor prognosis and survived to reach their potential. This participant said: “We were told she would never walk, talk and she would have no hearing as she was pre- mature… [as she grew up] it was great, I had taught her arts and crafts and she was great with colours…” When these participants reflected on their first encounter with the profession- als, they felt that no one really knew what the outcome for their child would be. And many of the participants said that they knew there was something wrong with their child, but getting a delayed diagno- sis adversely affected the input their child received and thus began the search for services.
Historical events have shaped the development of intellectual disability ser- vices in Ireland as we know them today. From 1930s-1950s, people with an intel- lectual disability were being transferred from workhouse institutions into the care of religious orders that were paid a subven- tion for this service. 1 During the 1950s families were actively setting up parents and friends associations to lobby on behalf of their relative with intellectual disability. 2 These events saw the emergence of disability empires grow, supported by funding from the Depart- ment of Health, yet families of people with intellectual disability did not have a say in the choice of service they received. 3 Influenced by the Scandinavian princi- ples of normalisation, the 1970s onwards saw a large number of people with intel- lectual disability participate in community living. 4 However, it was a policy document from the HSE in 2011, Time to move on from congregated settings , 5 that changed the landscape of intellectual disability ser- vice provision in Ireland completely. The focus of this change involved the transition of 4,000 people to community residences from congregated settings. The study we discuss here was carried out at a time when €159.4 million was taken out of the disability budget between 2008 and 2015. 6 Families noticed and felt this reduction in services. The move from residential to community emphasised the changing role from community care to family care. Finch equates the role of family care to the unpaid woman in the home. 7 This study explored how family mem- bers interacted with service providers in intellectual disability. A qualitative
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