Bill to give people with disabilities access to vital treatments passes crucial vote

Senator Tom Clonan, who proposed the bill, said it was 'a moral victory' that it passed to second stage, moving one step closer to becoming law and better protecting some of Ireland’s most vulnerable citizens. Picture: Colin Keegan/Collins

A new law to secure rights of people with disabilities to vital treatments passed a crucial vote in the Seanad, despite Government attempts to “kill” the bill.

Independent Senator Tom Clonan who proposed the bill, said it was “a moral victory” that it passed to second stage, moving one step closer to becoming law and better protecting some of Ireland’s most vulnerable citizens.

The Government had proposed an amendment calling for the Bill to be delayed by one year, which would severely restrict its chances of passing all stages to become law.

But Mr Clonan appealed to the Seanad to reject the amendment and in “an act of generosity” Government senators did not appoint a teller to propose it.

With no teller to propose the amendment, the bill could pass on to second stage unopposed without Government senators actually voting against the whip.

Mr Clonan said he believes government senators were too embarrassed to kill the bill when they saw Mr Clonan’s family, including his son Eoghan, who suffers from neuromuscular disease, in the chamber.

“Eoghan Clonan has not had any meaningful physiotherapy, occupational, or speech therapy for over a decade," Mr Clonan said.

As a parent, when we do get the occasional physiotherapy appointment, they measure his deterioration. Can you imagine how it feels as a parent and a carer to see your child deteriorate?

“Eoghan has been on a waiting list for years. Tens of thousands of children and young adults have been on waiting lists.

“Children are allowed to deteriorate to the extent that they have life-limiting and suboptimal outcomes – citizens like my son who had to wait until he was 17 to get the surgery that should have been carried out when he was 12 or 13.

“That resulted in years of pain and restricted breathing, which has compromised him for life. It was completely unnecessary."

He said Eoghan deteriorated to such a point that he became an anaesthetic risk for the operation on his scoliosis, which was serious spinal surgery that lasted for 12 hours, with litres of blood and blood products replaced during that time.

“Because of the scoliotic curve, his lungs were compressed. His heart was even in a part of the chest cavity where it should not have been. The anaesthetist stayed in the operating theatre and manually extubated him because she felt that if he had gone to intensive care intubated, he would not have survived.

He suffered that, and we suffered as a family and as parents, and it was completely and utterly unnecessary. Ireland is one of the richest countries in the world, but it has a cultural attitude of contempt for people who are different by way of disability.

 Mr Clonan said that he entered politics to campaign for better treatment of people with disabilities after seeing the dire lack of services for his son, who is now 21, is working as his campaign manager, and is studying in Dublin Business School.

Mr Clonan said that he is determined to see the bill pass into law and he is also working on more legislation to compel the State to provide adequate care packages to people with disabilities.