The foster parents of a 24-year-old woman with spina bifida, who was taken into their Cork home when she seven, have lost the foster-carer's allowance because the Southern Health Board and the Department of Health consider her to be an adult, even though she has the mental age and needs of a child.
The wheelchair-bound woman, whose name they have asked to be withheld, is unable to cope for herself and needs constant attention. She has been in nappies since Ms Lauri O'Driscoll and her husband Haulie took her into their home in Ballincollig, Co Cork, 17 years ago.
Abandoned by her natural parents at birth, she was being cared for in the then Cork Polio and General Aftercare Association's home in Cork, now known as Cope, where Ms O'Driscoll was nursing. The O'Driscolls began to take her for Sunday drives at first and later decided to foster her.
With the exception of a few visits to the O'Driscoll home in the early years of her life as a foster child, the parents, who are still alive, now have no contact with their daughter.
Since January of last year, the O'Driscolls have been trying to persuade the SHB to restore the foster-carer's allowance. They have lobbied politicians, including the Minister for Health, Mr Martin, to no avail, and they decided to go public now in light of the recent judgment in the Jamie Sinnott case.
"That was an appalling judgment and Kathryn Sinnott, in fighting the case for so long while caring for her autistic son, showed amazing stamina. She is a walking saint. We know what providing care for a person with special needs involves and that is why we are speaking out now. Maybe by doing so, other families in a similar situation will take courage," Mr O'Driscoll said.
The letter from the SHB telling the O'Driscolls they no longer qualified for the allowance arrived on January 20th last year. It said their foster daughter was discharged from care as a foster child the previous January but fostering payments had continued because she was seen to be in aftercare.
"Given [name]'s age we can no longer pay the fostering allowance and this will cease at the end of this month," the letter said, adding they would be entitled to submit themselves to a means test to claim the allowance of £76.50 a week paid to carers. At the time, the weekly fostering allowance was more than £80.
The letter also advised them that if they were successful in claiming the carer's allowance, they would also be entitled to free telephone rental, a free travel pass for the carer and £200 annually for respite.
"The attitude seemed to be our foster daughter was now over 18 and the board was washing its hands of her. It was now up to us to prove that we were entitled to anything at all. I'm unemployed, so we passed the means test. What would have happened if I had a good job?" Mr O'Driscoll asked.
Within a month, another letter arrived from the board telling them the foster-care regime was guided by the Childcare Act 1991 which set the cut-off point at 18, with a possible extension until 21 when the child was in full-time education.
Because of the particular difficulties of the case, the board said it was arranging an ex-gratia payment of £500 to facilitate ongoing care while the application for a carer's allowance was being processed.
"We made it clear to the board that this was not about money. We also made it clear that whatever happened, our intention was to care for our foster daughter for as long as she lives. She is a family member and this is her home.
"Her parents had abandoned her, now the board and the State seemed to be doing the same and we wanted them to take responsibility and recognise that the loving care she gets here would not be available in any institution, which would cost a lot more," Mr O'Driscoll said.
Ms O'Driscoll was granted a carer's allowance and immediately her husband's unemployment assistance was cut. The board now argues that materially, the O'Driscolls are not that much less well off and that its hands are tied by the Childcare Act.
This is based on adding the weekly disability allowance of £85.50, to which the O'Driscolls' foster daughter is entitled, and the carer's allowance of £88.50. The difference between that and the new fostering allowance of £220 a week, introduced last week by the Department of Health, is not appreciable.
In fact, at £46 a week, it is appreciable, said the O'Driscolls. Another way is to add the disability allowance, to which anyone in similar circumstances would be entitled, to the new fostering allowance, which gives a weekly payment of £305.50.
The Southern Health Board said a full range of back-up services was available to the O'Driscolls for their fostered daughter and there was no question of the board relinquishing its responsibility in the event the family no longer wished to care for her.
Ms Marie O'Donoghue of the Association for the Severely and Profoundly Mentally Handicapped said the O'Driscoll case highlighted once again the unwillingness of the State or its agencies to make life easier for those caring for the mentally handicapped.
"The sense you get is that obstacles will be put in your path where possible. There is no sense that the State is recognising your value as a carer and moving the obstacles out of the way. Quite the opposite, in fact," she added. Ms O'Donoghue sued the State on behalf of her son, Paul, in 1992 and established the "absolute right" to free primary education for children, regardless of the level of disability.
Mr O'Driscoll said: "This is another example of the State using bureaucracy to decide how a disabled and mentally retarded person should be treated.
"What would happen if we decided not to care for our foster daughter any more. Who would speak for her then or cherish her the way we do? Who would be there for her on a 24-hour basis?
"I had several meetings with Micheal Martin. He congratulated us on doing a great job on behalf of the State and promised to look into the case which he thought was exceptional. Nothing has happened since.
"We went to Mr Batt O'Keeffe, chairman of the Southern Health Board, as well. In highlighting this, we had two options, to go to law or to go to the media. We are now taking legal advice and we have decided to speak out for the first time because of the Sinnott judgment in the Supreme Court."
The O'Driscolls have two adopted sons and are fostering two other children.