Martin Daly: Parents Fear Who Will Care for Disabled Adults
Martin Daly addresses the growing anxiety among parents of adult children with disabilities about future care, housing and supports. He highlights meetings with the Before You Die group and calls for coordinated action from the Minister for Housing, the Minister for Disability and the HSE.
Martin Daly summarises parents' main concern: what will happen to vulnerable adult children when parents are no longer able to provide care due to incapacity or death, or are forced to shoulder debt. He explains that many families fear the expectation that siblings will automatically assume care without negotiation or respite.
Daly reports that the Minister for Housing has instructed local authorities to include a quota for people with disabilities in housing schemes. He stresses that building accommodation must not wait on the promise of wraparound services; proactive construction and planning for supported local authority housing is needed now.
The speaker argues the state must press the HSE and local authorities to coordinate supports so people can live on a continuum of care-from independent community living with supports to supervised or residential care. Daly warns that resources focused only on de-congregation risk leaving no capacity for new provision.
Martin Daly makes a candid appeal for practical, joined-up solutions. He tells colleagues that the current situation is unsustainable and urges sustained, pragmatic engagement across departments and with families to find a way through the crisis.
Parents' urgent anxiety
Martin Daly summarises parents' main concern: what will happen to vulnerable adult children when parents are no longer able to provide care due to incapacity or death, or are forced to shoulder debt. He explains that many families fear the expectation that siblings will automatically assume care without negotiation or respite.
Housing and quotas
Daly reports that the Minister for Housing has instructed local authorities to include a quota for people with disabilities in housing schemes. He stresses that building accommodation must not wait on the promise of wraparound services; proactive construction and planning for supported local authority housing is needed now.
Coordination with health services
The speaker argues the state must press the HSE and local authorities to coordinate supports so people can live on a continuum of care-from independent community living with supports to supervised or residential care. Daly warns that resources focused only on de-congregation risk leaving no capacity for new provision.
A call for honesty and action
Martin Daly makes a candid appeal for practical, joined-up solutions. He tells colleagues that the current situation is unsustainable and urges sustained, pragmatic engagement across departments and with families to find a way through the crisis.
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Transcript
Taoiseach, I know your commitment to the matter of disability and the establishment of the unit in your department and Minister Norma Foley's commitment also to improving the lot of people who live with disability in Ireland. We've met groups of parents whose main concern and apprehension going forward is the care of their vulnerable offspring when they're not around anymore either through incapacity or through debt which happens to us all eventually and the expectation that their siblings will take on that care without negotiation and without any hope or respite in terms of planning for their accommodation as they get older whether it's in full residential care, supervised care or in the community and local authority housing suitably supported. In respect to the question from Deputy Martin Daly I think I have met that group also, the Before You Die group in relation to vulnerable adult children and their fear and their anxiety in terms of providing for them if they were to pass from this world of the parents. Now the Minister for Housing has met with the Minister for Disability, the Minister for Housing is instructing local authorities to build and to have a quota within every scheme for people with disabilities in the first instance and not be doing it on the basis of well if we get the wraparound services we would build a house or to actually just go and build and we will have to put pressure on the HSE side on the health care side to make sure that supports and the local authority would have to work proactively with the families and with the health service to make sure that the right sort of appropriate balance of care is provided because a lot of people are in a position with disabilities to actually manage so there's a continuum of care is required here and so we the last meeting actually the disability group discussed this in some considerable detail because having met Before You Die group it was clear that they were being asking us to jump hurdles that really wasn't appropriate in my view that we should be more proactive as a state in terms of helping them along this journey to try and provide for their children particularly on the accommodation side and I met one parent who said her two sons could actually manage quite well and with a bit of support nothing too extraordinary and so others would need far more intensive care in the residential environment and we also have to get the balance right between de-congregation and a new provision because if all the resources just go into de-congregation there's no resources for new provision either and we have to try and work with all concerned I'm just being honest and open here in terms of trying to find a way through this because what the current situation is not sustainable and I'm very clear about that.