MAURA JOYCE,
Sir, - Our son Brian is 19 years old and suffers from autism. Because of the denial of vital services to him throughout his early years, he is now facing a lifetime of institutional care. Failure by successive governments to acknowledge his existence and that of hundreds like him, who have been denied the right to an appropriate education, has led to parents like ourselves being shuttled between the Departments of Health and Education, with neither taking responsibility.
In June 1998 we established his right to an education in the High Court. However, since the State won the Supreme Court bid to overturn the Sinnott case ruling in 2001, no one over the age of 18 has the right to primary education.
In December 2001 our son was seen by an inspector from the Department of Education. She verbally recommended that his present educational programme cease at the end of this school year. This effectively means that Brian has experienced just four years of a programme funded by the Department of Education, which came after our High Court Action of 1998.
Prior to this, we spent years of total frustration, when we failed to get a proper formal diagnosis and went for years without direction, facilities or appropriate care and education for Brian. Since December 2001 I have tried, through numerous telephone calls and more recently by letter to the Department of Education, to clarify Brian's position from next June. Neither the inspector nor any of the personnel from the Department have ever responded to my long-standing requests on his behalf. It seems that our family, like many others, are being excluded from decisions on our son's future educational needs.
The only way to end this cycle of neglect is to provide appropriate resources and services for people as a basic human right. The Task Force on Autism strongly recommended early intervention and appropriate care and education for handicapped people.
The failure to hold a referendum to give rights to an ongoing education to people over the age of 18 is a chilling reminder of our State's neglect of our most vulnerable people. Not that long ago, the Taoiseach apologised on behalf of the State to people who were mistreated in residential institutions in the past. Surely an apology is also due to my son and people like him who are trapped and doomed to spend their lives in institutional care.
Before Christmas a group of parents published a Bill that could have entitled disabled persons and their families to have access to an independent advocate. Fine Gael, Labour, the Greens and Sinn Féin accepted it. The Government rejected it, assuring us it could provide better. However, in February, the Disability Bill had to be withdrawn as a result of intense political and public pressure.
Now we who are closely connected with the world of disability and mental handicap must mobilise ourselves. Experts now tell us that conditions such as autism can be tackled if there is intervention early enough.
We must demand legal reform and a constitutional amendment providing for education without regard to age.
The only real progress in this area is resulting from parents like Kathryn Sinnott and James and Nicole McNabb struggling through the courts to vindicate basic rights.
We cannot ignore the fate which awaits our son from September next. As matters stand, he is doomed to spend all day every day sitting in a residential unit; that would undoubtedly necessitate an increase in medication - a further infringement of his basic human rights. - Yours, etc.,
MAURA JOYCE,
Sylvan Avenue,
Fairlands Park,
Newcastle,
Galway.