A new and favourable precedent was set on 4 March, 2014, as three parent groups came together to meet with the Midlands HSE Disability Services. Members of the Laois Offaly Families for Autism (LOFFA), the Offaly Association for People with Intellectual Disability (Offaly ID), and Offaly Down Syndrome Association joined forces to forge communication with the General Manager of Disability and Primary Care, Maura Morgan, the General Manager of Disability Services, Donal Fitzsimons, and Disability Managers, Breege Donahue and Margaret Cullerton. A committee from LOFFA met with this group in the week prior to further requests for information on the waitlists in the four counties for speech therapy, occupational therapy, psychology, and an update on the assessment of need process. From this meeting a nine-point agenda was requested by LOFFA. All of the agenda items targeted the desire of parents to be more fully informed of the services available to their child(ren)/adult.
Prior to opening the floor, Edel Shaw of LOFFA laid out the four issues of primary concern: the extensive wait list for services, the lack of speech and language therapy and occupational therapy provision in schools with autistic units, faults in the assessment of needs process and the closure of a local respite facility for the preceding fifteen months. Concerns are predicated upon personal experience, but the February 2014 statistics (published by the Midlands HSE Disability Office, and shown on the following page) give a good indication of the gaps in services:
The air was charged. It was inevitable. Families have been at the pin of their collar to access services for their child(ren)/adult in the Midlands. In the midst of a listening process, parents spoke movingly about their efforts to access services. The love that each family has for their child(ren) /adult was the core of each query. Yet, it was through exhaustion, frustration and desperation that families spoke of interactions or lack of interactions with those in the HSE providing or managing services. There was a strong and apparent cry by families to create a link or an inroads to communication. Thankfully, the week prior the Disability Office had released these informative statistics on wait lists and staffing within the Midlands. This material served as a springboard for parent concern.
In response, members of the Disability Office gave details of each of the above issues. The old cliché responses of budget constraints, decisions made at a national level, especially when it comes to staffing, and inviting families to come to the office ‘individually’ emerged. ‘We are doing the best we can’ became a mantra in the responses. One parent, in reply, reminded them that the onus is on the HSE to explain the best practice, the best provision of service, and that without this there is the perpetuation of confusion among the parents as to what to expect from the HSE. He asked, ‘ Does any parent know how the HSE is configured?’ ‘At least,’ one father said, ‘if there was a pothole in the footpath it would be deemed a risk and it would be repaired out of fear of liability, but when it comes to the risk associated with lack of services/care for our children, there seems to be less concern.’ As a whole, the group responded with concern over the perceived acceptance by the HSE of such dire wait lists and lack of services. ‘How is it,’ another parent asked, ‘that you can say you are doing the best you can when the standard of care has diminished?’
Another point , made very clear, was the 281% rise in assessment of need applications in the last two years. Of these, 176 applications in the Midlands have not been completed by the legal time standard given for the process. As we all know, it is the same therapists who provide services who are also required to complete assessments. Thus, when therapists are taken out of service provision children are not receiving essential services. It is a two-edged sword. The answer, instead of dealing with the core problem, was the promise to ‘put on a blitz’ to complete the assessments. How long can the HSE rob Peter to pay Paul? There has to be a more transparent and open way for parents to access and to understand service provision.
Will the same language ever be spoken between those who provide service management and the families who are trying with all that they have to keep their family in tact? Why is it that parents are pushed to go public, to exert further time and energy away from their homes, to get what is needed for their child(ren)/adult? The time is ripe for the HSE to capitalise on this passion from the parents, to get out from behind desks, and despite money constraints, to configure ways in which children/adults may get the services needed to become fully who they may become. To this end, all were appreciative for the opportunity to meet with the Midlands Disability Managers. We can only hope this conversation and openness may continue.