Jessica’s plea for assisted living support

AS A wheelchair user, 29-year old Jessica Keegan has always made the most of the cards that life has dealt her. A native of Manchester, Jessica was born with cerebral palsy, a condition which restricts her movement and affects her balance and coordination. She spent much of her childhood in Feakle and attended Dromindoora and Flagmount national schools and later Scariff Community College. “Feakle is beautiful,” she said, “but it’s not such a great place to be if you happen to use a wheelchair. It’s really hard to access services from there and you can end up being very isolated.”

Jessica, a graduate of Mary Immaculate College, describes herself as “bubbly and sociable”. Her friends and the staff of Enable Ireland Adult Services at Quinn’s Cross in Limerick, are a lifeline for her in what has been a time characterised by isolation and loneliness. But while the pandemic has presented huge challenges, Jessica has faced them with characteristic courage and good humour. The young woman has been battling a more devastating and long-running situation which, she believes, is threatening the measure of hard-won independence she has carved out for herself with the help of friends and support services. Jessica is realistic about her care needs and her goal of assisted living, but for the past number of years has been struggling with the nature of her accommodation in Limerick. She believes her care needs are too high and that the inadequacy of the setting has caused her condition to worsen. Jessica is also deeply distressed by changes to health and safety guidelines for support staff which mean she must use full incontinence wear instead of being assisted in using a toilet.

“I used to be able to be lifted and put on the toilet,” she explained. “Then the rules changed, for health and safety reasons, and I now have to use full incontinence wear. Every time I have to use it, a piece of me dies inside.”

The ongoing struggle to cope with her accommodation, and its impact on her dignity and freedom, has led her to consider – reluctantly – going down the legal route. “My physical needs are too high for what would be described as independent living,” she said. “The accommodation I am in now just isn’t right for me and I really believe that my condition has deteriorated as a result. The HSE (Health Services Executive) tell me they’re working on the situation, but say it’s very hard to find a place in Clare or Limerick. I’m looking for my own house and would need 24-hour care. It’s a kind of assisted living. I’m also very sociable and bubbly and would be open to sharing with others, not just staff. It’s really wrong that there are so few options for people with disabilities. It’s a terrible situation.”

As she waits for alternative accommodation, Jessica’s frustration is compounded by fears for her physical condition. “I’m really afraid of how long the process of finding somewhere else might take,” she said. “When I moved here, I was told the accommodation was temporary and I’ve been in the wrong place now for just over seven years. I need some kind of interim plan because I do feel my condition is deteriorating because of where I’m living.”

The pandemic has slowed down a process that Jessica feels has already been moving at a snail’s pace. “Covid has made things much worse in a lot of ways,” she said. “It’s really put a spanner in the works altogether. It has reduced the contact I have with the support staff where I live. I fully accept that there is a safety need and risks for staff, but the situation has been absolutely terrible and so isolating.”

Restrictions have also slowed down the effort to find new accommodation for Jessica. “At this stage, I do need and want the current toileting situation to be ended,” she said. “There should be more accommodation available with different levels of support. There is only one assisted living centre in the whole of the Midwest region that would suit someone like me. That’s in Ennis and it’s full. If there was something like that in Limerick, that would be ideal. There really has to be more done to provide the right accommodation for people with physical disabilities. The Independent Living Movement in the early ‘90s was about helping people to move out of congregated settings, but that doesn’t work for everyone. Independent living doesn’t work for me. What I need is assisted living. The fact that I now have to look into the possibility of taking legal action against the HSE nationally is shocking. That would be a last resort and I don’t want to have to do that. I shouldn’t have to do that.”

Supporting Jessica socially and with her self-advocacy, Enable Ireland is an anchor at a difficult time. “When the services were closed for so long last year, it was incredibly tough,” said Jessica. “I was totally cut off for a while and my life was literally turned upside down. I was so lonely and every day. My mind went into over-drive with negative thoughts and they really started to spiral. There was a black cloud of loneliness hanging over me. I just couldn’t see any end. Enable Ireland were just fantastic during that time and kept in touch with me over the phone. There’s a real community there and a close bond between everyone. We couldn’t access the centre from March to August of last year, it was a terrible time.”

Under the current lockdown, Jessica has, thankfully, fared much better. “At least now, I am in the high priority group and can to the Enable Ireland centre on weekdays. It is a life line and everyone there is so supportive with my situation. Enable Ireland provide an incredible service and I have made great friends through it. I am so grateful to them. I owe them so much.”