Some mentally handicapped people are shuttled between one residential institution and another every week because there is not enough money for seven-day staffing, a meeting was told last night.
The meeting, in Dublin, was called to create an alliance among groups made up of parents and friends of mentally handicapped people around the State.
If necessary, the Constitution should be amended to give people with disabilities a statutory right to services, a broadcaster and former Labour Party adviser, Mr Fergus Finlay, said. He was one of four parents who addressed the meeting in St Michael's House school in Ballymun, organised by the Parents' Future Planning Group.
A policy document which the group published at the meeting states that £60 million is urgently needed to provide and improve services.
"Some people who don't have relatives who bother have to leave their five-day residential `home' every Friday and move to respite care [short-term care meant for emergencies and breaks] every weekend," a parent, Ms Mary Egan, told the meeting.
"This is very unfair as this makes them feel `homeless' and it also makes scarce respite beds unavailable to other people who need them."
Parents want their children to be introduced gradually to residential care while they themselves are still alive but "the present situation is that the last surviving parent has to die for a person to go to the top of the waiting list. The only available space is sometimes in a psychiatric hospital or Alzheimer's home. Our children become orphans and homeless in one go. This is inhuman and callous beyond belief."
An alleged failure by service providers and social services to see parents as equal partners was one of the strongest themes of the meeting.
"When choices have to be made, parents are not consulted," Mr Finlay told the meeting.
Parents would have to demand a system of statutory rights for their children, he said. "It may well require a constitutional amendment and Government has so far refused to take that possibility seriously."
The scarcity of services means that when parents get a service for their children, "we see ourselves as the receivers of a favour or of charity and the service provider becomes the giver of the favour," Mr Seamus Greene, chairman of the Parents' Future Planning Group, said. "The service provider receives uncritical gratitude, is made to believe that every service is an act of monumental generosity and runs the risk of eventually believing that what is provided is something of unrivalled perfection."
Many parents "feel that there are no options but to accept what is available to us as we have no choice", said a psychologist and parent, Mr Mark O'Reilly.