‘I am my daughter’s only voice and hope’

MAEVE YORE has sent letters to every politician she can think of. She emails Miriam O’Callaghan, Mark Little and Gerry Ryan on a regular basis. She has even contacted Bob Geldof.

She is begging for something to be done for what she calls the plight of the forgotten children with special needs.

Maeve recently wrote to Minister for Children Barry Andrews. He told her to contact his colleague Minister John Moloney, who is responsible for people with disabilities.

The letter she got back from Mr Moloney, she says, was the exact same letter she received from the same department six years previously — the only thing that was different was the date and the signature. That is what parents like Maeve are up against.

Maeve’s seven-year-old daughter Rachel has Down Syndrome and according to the Co Louth mother, who set up the parents’ support network, Special Needs Active Parents (SNAP), has received very little care from the state since she was born.

Rachel is on a permanent waiting list for vital therapies such as speech and language and occupational therapy.

Since she was born she has had just four hours of occupational therapy. She had physiotherapy once a month for her first year of life, but not even six sessions since.

Maeve and her parents’ support network lobby and fight constantly, but get nowhere.

Disability legislation means that children under five now have a statutory entitlement to be assessed for their needs.

Some parents in the group have had the assessments done. They have been told exactly what their child needs to reach their full potential, only to be faced with the realisation that they will be lucky to even get half if it.

Maeve feels lucky, however, as her daughter is bright and can walk and talk independently. Other parents in SNAP are not so lucky.

The HSE recently told the mother of a nine-year-old Down Syndrome boy to forget about teaching him to speak. He had missed his window of opportunity due to the lack of early intervention services.

“My two older sons see me writing the emails and the letters every night and ask how the Government can do these things to children with special needs. ‘Do they not know it’s morally wrong?’ they ask me. ‘They mustn’t think it’s wrong’, I say.”

“I am my daughter’s only voice and hope. I won’t stop fighting.”