Parents Outrage over Health Charges vented at INCLUSION IRELAND Seminar

Parents spoke of their outrage at the lack of Dáil debate over the charging of people with intellectual disabilities for long-stay health care at an Inclusion Ireland Seminar on Decision Making Capacity and Long Stay Health Charges yesterday in Athlone (Saturday November 3rd). Speaking during an open forum session, which was chaired by Deputy Mary O’Rourke, one father said “legislators in this country are totally out of touch”. He said elderly people may go into nursing care for three or four years, while people with an intellectual disability could spend fifty years in nursing care. Kevin Doyle, Inclusion Ireland Board Member and father of four sons with an intellectual disability, said he believes “the charges are way too high”.

During the debate on Decision Making Capacity, international expert Michael Bach said society “isn’t required to deal with people with an intellectual disability” and we must challenge that. Solicitor Máirín McCartney said Ireland’s current position in relation to capacity and people with an intellectual disability dates back to the Lunacy Act of 1871. Ms. McCartney said the Irish system of Wardship “takes full legal capacity away from the individual”. Ms. McCartney said it is up the Department of Justice to ensure that new legislation is brought in to update the 1871 Act. The Mental Capacity and Guardianship Bill 2007 was introduced as a private members Bill in the Seanad in February of this year but with the change of Government the Bill was never finalised. Inclusion Ireland CEO Deirdre Carroll expressed “very real concern” that Ireland may be out of line with the UN Convention on the Rights of Persons with Disabilities, which Ireland is a signatory to, despite having once been progressive champions of the Convention. In an open forum discussion after Mr. Bach and Ms. McCartney spoke, one mother said she had only recently discovered that in the day-to-day decisions she makes for her daughter, she has no legal backing.

Parents also discussed the issue of home care packages being extended to people with an intellectual disability, which Inclusion Ireland raised in its submission for Budget 2008. One parent said the situation for people with profound and severe disability is not improving, and she is constantly reminded of cutbacks during meetings with the HSE.

Mr. Bach said direct funding to the individual is a key step, as the HSE and the service provider currently have a contract with each other but the individual has no such contract. Contractual status, said Mr. Bach, is vital for the decision-making process. Deirdre Carroll said “if money is with the person, the whole issue of charges doesn’t apply”.

Sexual assault of people with an intellectual disability was also raised, and Ms. McCartney said it was “very disheartening” to see the number of cases being brought to the attention of the DPP, which are not brought forward for prosecution because of capacity issues and people with an intellectual disability giving evidence.

ENDS

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