Sir, – Senator Tom Clonan recently proposed a Bill to obtain rights for people with disabilities. The sad reality is that there is an inequality and exclusion associated with disability, and over many decades persons with disability and their families have constantly had to fight for fairness and their rights.
A family member, as a carer of a disabled person, is untrained, unpaid, always available, and provides service and care 24 hours a day, seven days a week, with no statutory entitlement to a break from care and service, through respite care, day services or community care. The family carer’s lack of entitlement places them, as well as their disabled person, as a dependent of the State.
For decades, families have expressed concern about State investment in intellectual disability services.
In 1978 Annie Ryan led a hunger strike when her 14-year-old son was placed in the inappropriate setting of a large psychiatric hospital.
Kathy Sinnott, in 2001, through her disabled son, established a constitutional right to appropriate education, based on need. However, the State successfully appealed the right to education for persons over the age of 18.
In 2003-2004, St Vincent’s parents’ support group, in response to cuts in respite and residential services, engaged in political and public protest for three months, before services were restored.
Under the Poor Laws of 1834, people were expected to care for themselves and if they could not, they were taken to an institution.
It was during this period that large mental asylums, Magdalene laundries and workhouses were created.
The majority of services for intellectually disabled people were provided on a voluntary basis, mostly run by religious orders of nuns and Christian Brothers. Services provided by the State were, inappropriately, in large psychiatric hospitals, alongside patients with mental illness.
Decades of government neglect and underfunding must now direct political decision-making and funding for intellectual disability services.
The Ireland of today reflects political decision-making. With resources reaching out to many new and marginalised groups, it is now time for politicians to extend such generosity, fairness and equity to people with intellectual disability in Ireland. – Yours, etc,
PROF SEAMUS COWMAN,
Professor Emeritus, RCSI, trustee and board member of Inspire wellbeing charity.