Grace O'Leary's 35-year-old daughter, Orla, has a profound learning disability. She can't speak and she can only walk short distances.
Plans Grace and her late husband had for their lives were changed completely once Orla's disability was discovered. She gave up her job as a staff nurse to take care of Orla, the eldest of five children.
Now after all these years of minding her daughter at home, she goes to bed at night with one major worry on her mind. "If I died tomorrow, I don't have an arrangement in place for Orla," she says.
The basic problem is that there is no suitable long-stay facility in the Sligo area. While there are hostels providing accommodation for people with milder learning disabilities, Orla has high-dependency needs.
The nearest such centre is in Bundoran, but if she got a place there, she would lose contact with all her friends in Sligo.
"She would miss all her friends from the day-centre, some friends she's had for 14 years. She couldn't cope with that - it would be enough me going," Grace says. She is now hoping that such a facility will be provided after the needs assessment study carried out by the health board.
Rena Meehan-Pros has the same long-term worries, but has also concerns for her 12-year-old son's welfare in the short-term. Owen has Down's syndrome and Rena says his behaviour could be described as "challenging".
She believes vehemently in integrated education, and would have loved to send Owen to an ordinary school. But whatever may be written in policy documents, in reality that option wasn't available, she says.
"When he was five, there were 39 children in the class [in the local school]. How could I have left him there," she says.
Parents like Grace and Rena tell stories of long battles for basic services.
Back in the 1970s, Grace and a group of other parents protested by threatening to leave their children in the health board offices because they were being refused an allowance for incontinence nappies.
Many years later Rena had a similar battle. She was refused pull-up trainer nappies when she was trying to toilet-train her son. She had to go and get them herself in Enniskillen.
They both accept that services have improved. Grace praises the day-care centre Orla now attends and says she and the six others there have "blossomed". But getting such a centre, where adults were not mixed in with young children, was also a struggle. Many large gaps in services still exist.
Rena says there may have been an economic boom, but she can still get only five hours of home support a week. She has only been able to survive with help from family and friends, she says.
She is also concerned that only "the better-informed people" get home support at all and that many others are not aware of their entitlements.
They both emphasise the need for early assessment and intervention. A condition like Down's syndrome is identified immediately, but they say that in some cases children can be nearly two before being diagnosed.
Then there are problems because of a shortage of speech therapists and psychologists.
Mr Pat Dolan, the assistant CEO of the North Western Health Board, accepted that speech therapy was "a significant problem" at the moment.
He said an assessment should be carried out within a month of a learning disability being diagnosed, but that intervention would then depend on the degree of need.
"It would be fair to say that they are not getting the level of intervention that they could expect and I am conscious of that," he said.
Rena also believes there is a need for a review of the care provided for children in respite centres. She says there is a need to put programmes in place to stimulate and interest children. She would like a long-term plan to provide homes where people like her son could have a "meaningful existence" and where they were truly integrated into communities. Parents of children with learning disabilities have to endure a lot of pain.
Tears still come into Grace's eyes when she remembers "the end of a dream" when they began to realise Orla had a disability. Rena remembers that people simply wouldn't acknowledge the baby in the pram once they saw he had a disability. Since then it's been a struggle for basic rights. "I get upset because I love her so much and I think why hasn't she got all these nice things that other people have. You have to live your life differently, but at the end of the day, the kind of energy and love and generosity she has brought into our lives has been amazing," Grace says.