Old ways are rarely best. That is why they change. Sometimes, however, resistance is so embedded in social and cultural conditioning that it takes something special to force a re-evaluation. That “something special” occurred when Johanne Powell, who cares for her profoundly disabled daughter in Co Wexford, raged last week against a lack of HSE home, residential and respite services, insufficient government funding and the way in which carers themselves are taken for granted. She wanted to start a public conversation that would create a better understanding of the pressures and stresses involved.
Since then, the frustration and concerns of many parents with profoundly disabled children, who feel they have been neglected by government and patronised by society, have been expressed through interviews with Rosita Boland and in letters to this newspaper.
It may not be enough. Political parties have yet to become engaged And, because of the pay demands being made by public service unions, additional facilities may not be provided in the short term.
Some things can, however, change. A mindset that lauds the “sacrifice” being made by parent carers, while failing to consider the impact this may have on their marriages and on their physical and mental health, represents a “valley of tears” view of life that should be buried with reformatory schools and Magdalene laundries. It nods acceptance at the official and social neglect that has marked the treatment of these families since the foundation of the State.
Legislation that would give a statutory entitlement for home care services to disabled children and adults would bring Ireland into line with other countries. It could be used to establish a benchmark for the provision of various other services, both in the home, in respite and in institutional settings.
One of the challenges that cause many parents distress is the absence of information concerning a whole range of services that may be available through the HSE. Services are frequently fragmented and always difficult to access. “We have to fight and shout for every service,” has become a general complaint.
The great worry of ageing parents is: “what will happen to my child when I die?” Official assurances that residential places will be found offer little comfort, given the past treatment of elderly and physically and mentally unwell citizens. Early transitional arrangements should be put in place, connecting home to residential centres and involving parents, to minimise trauma.
New residential and respite care facilities are required in all regions because of extensive waiting lists. It has been estimated that services provided by 200,000 family carers save the government €4billion a year. Some of that money should be used to expand necessary services for these families and offer committed parents a better quality of life.