'We had no idea how serious the situation was'

There is a growing campaign by parents and families of loved ones with intellectual disabilities to ensure that safe housing provision is available to those they care for later in life.

The matter was raised at a recent meeting of Mayo County Council's strategic policy committee (SPC) for housing when Juliet Keating, mother of a 24-year-old with Down Syndrome, made a presentation to the committee. Ms Keating explained that the campaign began in Ireland just a year ago when 15 parents with concerns about future housing for their loved ones as they all got older came together for a meeting.

“We knew we’d have to fight as we have had to since the day our children were born but we had no idea how serious the situation was, in the sense there is a complete lack of any functioning housing system for them into the future.” 

She explained that the campaign grew exponentially and within a short time had thousands of members. More than 900 people turned up for a national meeting in Dublin, including 40 from Mayo. Since then, they have been developing regional lobby groups around the country, and the organisation is now quite large.

“What we are looking for is a fundamental right to a safe home for our children before we die - not after we die when it becomes a crisis situation where they are put in a nursing home or a house in another county far away, so that our loved ones are not losing just a parent but everything they know in a short period of time.” 

She outlined a number of demands the 'Before We Die' campaign is lobbying for, including a call for an emergency funded plan; a statutory register of need; a transition plan by age 18; a one stop shop to connect HSE, Housing, and Section 38/39 providers that are currently working independently in catering to the housing needs of adults with intellectual disabilities (ID). Additionally, she called for ringfenced funding, appropriate models of housing for older people with ID, such as clusters of homes with support – similar to age-friendly models for the elderly like the Safe Home Ireland set-up in Mulranny, with local safeguards and supports in place.

Referencing Census 2022 data, she said there are 815 ID adults in Mayo currently living at home but only 60 have a place on the council’s housing list. She also noted that while 96 homes in Mayo were allocated to people with disabilities, only 15 were allocated to those with ID.

Kieran Joyce, also a volunteer with the campaign, spoke about a national survey, which found that 92% of adults with an ID rely on a parent as their primary caregiver; 48% of primary carers are aged 60 or over; 78% have no formal housing plan for their son or daughter; and 40% of those on a housing list have waited more than four years. In Mayo, it was determined that 76 of those with ID are living with an adult carer aged over seventy.

Mr Joyce outlined how there is huge confusion with the application form to get on the council housing list, saying: “It can take up to 18 months just to process it and is very complicated."

He added that the section in the form to fill on behalf of those with ID was even more complex and also presented the conundrum that “if you don’t have a HSE care package you can’t get a house, but if you don’t have a house you can’t get a care package".

He told the forum: “These are citizens of Ireland and there is a barrier of entry for them to get on the housing list. This is an incredibly emotional time for a parent, possibly in their 50s, 60s or 70s, to fill out this form. We are trying to streamline the process. We are a parent and sibling lobby group. We are not paid, but at the end of day there is a barrier of entry for our citizens and people of intellectual disability. We are just families that won’t stop because we don’t have a choice here.” 

The speakers were warmly supported by the SPC forum members, with chairperson Cllr Peter Flynn acknowledging the great voluntary efforts of all involved and noting it would be very difficult to reform the current system.

Cllr Michael Kilcoyne agreed that the housing application form, which is set by the Department of Housing, is cumbersome, comprising at least 20 pages. He expressed surprise that just 7% of housing needs had been met in Mayo, noting that several organisations including Western Care, Mayo Mental Health Association and the Irish Wheelchair Association, all work in conjunction with the council to provide housing.

He said the real problem was insufficient funding from government for housing.

“If we could get funding we would do a whole lot," he added. 

Cllr Brendan Mulroy spoke both from personal experience and as a local representative, highlighting new HIQA regulations around housing that he said have made it more difficult for organisations to house those in need. He also highlighted the huge costs involved, pointing out: “If I go to the council looking for a housing plan for an individual needing 24/7 care it could cost up to €600,000. That is what we are dealing with now.” 

He said hard conversations need to be had and future plans made, as he supported a recommendation by Cllr Peter Flynn for families to look to providing their own housing solutions, taking into account recent relaxation around planning for modular homes.

Director of Services Catherine McConnell said she believed Mayo was ahead of the curve in terms of how it has partnered with a number of bodies to provide social housing. However, she noted that providing wraparound support services was not within the remit of the council and needed to happen “in lockstep with other agencies". She confirmed an applicant must be on the housing list to get a HSE care package and said she would be prepared to liaise with Cork County Council, where a successful pilot housing programme is being rolled out to deal with the issue, adding: “I think we are seeing the start to that very inclusive model of housing and I would be delighted to meet with our colleagues in Cork if there are lessons to be learned.”