Mary Ann O'Brien (Independent) | Oireachtas source

I welcome the Minister of State to the House. I welcome the motion tabled by the Labour Senators. I welcome Mr. Gary Lee from the Centre for Independent Living, Mr. John Dolan from the Disability Federation of Ireland and all of our guests this evening. I strongly support the statements of my fellow Senators as well as the necessary legislative and administrative requirements to ratify the UN Convention on the Rights of Persons with Disabilities.

I wish to focus on the right to a medical card of disabled people with a long-term illness. Our responsibility, apart from Article 19 of the UN Convention on the Rights of Persons with Disabilities is, as recommended by the United Nations report on children, that the State's demand to involve the finances of parents or guardians should cease forthwith. I fully agree with having universal health care in the future for all our citizens. We should surely get our house in order and take care of our most vulnerable before we declare that every child aged under six can have free GP care when people I know, who are disabled and very ill, do not have access to free GP care.

I refer to a lady in south Dublin, whom I believe the Minister of State knows. She has a lovely little boy who is disabled. This afternoon I spoke to his mother who feels that we have completely abandoned him and that he is being treated as a non-person and not a citizen in our country. I feel he is an ambassador for other gravely disabled people who have had that dreaded phone call - I am sure the Minister of State has friends who have had such phone calls - to say that the medical card will be withdrawn. The person then has to fill many forms and get them completed by the GP. This leads to much more stress and agony.

That is what has happened with this child. Two weeks ago the medical card was taken away. Before his medical card was taken and after his family had begged, reapplied and phoned, the HSE advised the entire family, comprising two healthy children, two healthy parents and a gravely disabled sick child, to apply for medical cards. They all had to go to the GP to go back over two years' records and fill out several forms. Two weeks ago they were rejected.

This little boy is tube fed and incontinent. He will never walk, talk or kick a football. This little boy will never be employed or educated. However, he has a wonderful smile and is the light of his family's life. He appeared on "The Saturday Night Show" the other night. Every month he needs approximately €1,200 worth of syringes, tube feeding bags and other horrible bits and pieces such as nappies just to keep him going. His parents do not want complete help from the State. They are well able to work, even though they never get any sleep. They are determined to make good lives for themselves and their other children. They are not looking for charity but they are not millionaires. As the Minister of State knows, nobody can keep up with the needs of a disabled person.

When this mother, a very articulate lady, got the phone call the other day, she burst out crying. She is distraught and is a broken person. She feels like giving up. Her family is saving us a fortune given that they look after this child full-time.

A friend of theirs has a child with Prader-Willi syndrome. Last year she got a similar letter. That mother is broken. The child had two spinal injury surgeries in Our Lady's Children's Hospital in Crumlin last year and is now at home with no medical card. There are people who are disabled who cannot complain because they do not have the strength. I feel bad standing up here because I do not know how hard it is. The people in the Gallery are the ones who should be standing up here.

I apologise to the Senators because I know I have digressed from the motion. I feel this is a really topical issue at the moment. I encourage the Minister of State to tell her friend, the Minister, Deputy Reilly, that we had a great debate here this evening and we need to ratify the UN Convention on the Rights of Persons with Disabilities, but we also need to ratify the medical needs of people with disabilities.

While I know I should not speak about individual cases, let this child be an ambassador for other people with disabilities because these are desperate people. These people are much more vulnerable. While I do not want to single out people who need medical cards, these are people who cannot swallow or stand or go to the toilet on their own.