What will happen to my daughter after I am gone?

Virginia mum on board with ‘Before We Die’ campaign

Caroline McKenna requested that a happy mother and daughter photo sit alongside this article in the paper.

While the family have many happy memories, on this particular day Caroline had a difficult story to tell.

As the primary care giver to her daughter Ciara, she recently joined the Before We Die campaign because, like many members of the campaign group, she fears what will happen to her only daughter when she dies.

When Caroline first heard campaign founders and parents Tony Murray (70) and Susan Corrigan (69) speak, she related to “everything” they said. Something that resonated strongly was when Tony shared how he hoped his daughter passed away before he and his wife because he dreaded what would happen to her when they could no longer look after her.

The comments “hit home” with Caroline as she and her husband Jim had the same conversation.

“We felt terrible for saying it, but that’s how desperate you feel. At least if they go before us, we’ll know there’s none of those concerns about when we’re gone.”

When asked what the ideal living situation for her daughter would be, Caroline listed a “safe assisted living facility” like a “village with shops” where she would be able to “live as independently as possible”.

“They’re human beings at the end of the day,” she says.

Twenty-four-year-old Ciara has global developmental delay, central processing disorder, cortical visual impairment, a speech disorder and anxiety. Her 65 year old mum is her primary care giver, however she also has a support worker since Caroline experienced health issues associated with her diagnosis of Hashimoto’s thyroiditis.

Caroline is in the process of filling out a housing application form for Ciara with the council, while she is also completing a medical form for her daughter to receive supported living. However, she’s not optimistic: “The reality is, she’ll go on the waiting list but she probably won’t get supported living because it just isn’t there.”

The mum of one is going through this process now so that HSE’s disability services will look for a residential placement for Ciara, and she will be here to “have a say as to whether it is appropriate” and if it is close to her current support network, friends and family.

“You could be talking years down the line,” Caroline predicts.

Ciara attends adult service Prosper in Navan from Monday to Friday, where she learns independent living skills. She takes the Local Link bus independently and she is currently learning how to buy groceries and manage her money. Ciara loves Nathan Carter and Taylor Swift, and also enjoys hip hop. As she is a real “girly girl”, her mum takes her to get her hair and nails done every so often, which she “loves” along with walking. Virginia lake is one of her favourite places to visit.

She attends Navan Arch Club, which is a social club for adults with disabilities. However with the “long” drive Ciara’s anxiety often builds up meaning they sometimes have to return home upon arrival.

“She has her moments, she has some challenging behaviours,” Caroline describes, however if she is able to “catch it before it goes too far”, she has tools to “nip it in the bud” and “de-escalate”.

Caroline’s biggest fear is that when she dies, her only daughter will be sent to a place where she doesn’t know anybody, or where she doesn’t have an appropriate support system in place.

Figures provided to Senator Pauline Tully in March this year show there were twenty service users who wish to reside in Cavan but are in residential placements outside of the county.

The statement reads: “These placements are reviewed on an annual basis and, where it is expressed that they wish to move to the Cavan area, their will and preference is acknowledged and plans are put in place to accommodate their request where possible.”

Meanwhile, Cavan Monaghan Disability Services has 13 service users under the age of 65 placed in a nursing home.

Ciara has a “great support system in place” in Virginia, and her mum says: “I don’t want that disrupted.”

“I have friends here who will continue to support Ciara and be there for her when I’m no longer here.”

She fears that if she doesn’t plan for Ciara’s future now, emergency services will “come in because I’m too ill or I die” and “whoever is the lowest bidder gets Ciara”.

“She’ll get shipped off to I don’t know where,” Caroline fears.

“I need some of that control there for her own safety.”

“My biggest fear is somebody may abuse her in some way and she’s not using her voice.”

Caroline joined the Before We Die campaign to have “more transparent communication with the HSE” and called for “more foresight” for the future of people with disabilities.

“So that we have more of a say,” she adds.

The mum is hoping her input will spread awareness on the campaign, and that people who are going through similar will also get involved.

The campaign was raised recently in the Seanad by Senators Pauline Tully (SF) and Sarah O’Reilly (Aon). Senator Tully said she spoke to many parents whose son or daughter is on the county council housing list, and she said the local authority said it has houses “ready” to allocate to people.

“They do not need to be adapted if the person in question does not have a physical disability but many such people will need some sort of a care plan,” she said, which could be a support worker or a full-time carer.

“In order to allocate a house, whether from the authority’s own stock or through an approved housing body, the authority needs the HSE to engage with it and to put that support plan in place, but that is not happening,” Senator Tully stated.

The HSE and local authority were contacted in relation to some of the issues raised but had not yet responded at the time of going to print.