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Carer Caroline Kelly shows fighting spirit battling for disabled people

Brave mum keeps battling for the disabled after health trusts withdraw crucial services during nightmare year

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WORTHY WINNER: Caroline Kelly with (from left) Samantha Giles, Jonny McPherson and Gemma-Louise Bond

WORTHY WINNER: Caroline Kelly with (from left) Samantha Giles, Jonny McPherson and Gemma-Louise Bond

Photo by Kelvin Boyes / Press E

WORTHY WINNER: Caroline Kelly with (from left) Samantha Giles, Jonny McPherson and Gemma-Louise Bond

Campaigner Caroline Kelly felt like her years of good work on behalf of adults with disabilities were wiped out overnight when Covid-19 hit last year.

The Co Fermanagh mum has dedicated her life to battling the system to secure services that allow people with special needs to live independently.

Her tireless efforts have transformed countless lives, making her a most worthy past winner of our Caring Spirit Award, sponsored by Power NI.

At times during the past year, the 75-year-old felt that much of her good work was being undone as important services were withdrawn and she and many other parents had to once again become full-time carers.

With Sunday Life seeking nominations for this year's Spirit of Northern Ireland Awards, with Ulster Bank, our Caring Spirit winner explained what the past year had been like for her and other families with special needs children and adults.

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DEVOTED TO OTHERS: Caroline at our awards ceremony in 2019

DEVOTED TO OTHERS: Caroline at our awards ceremony in 2019

DEVOTED TO OTHERS: Caroline at our awards ceremony in 2019

"When Covid happened, all the services were pulled. It was left to us to care for our family members ourselves," Caroline said.

"My son relied on seven care assistants, but they could no longer go into his house because of the pandemic, so he had to move in with us.

"After a year for families like ours who have been caring for a disabled adult at home for 24 hours a day, seven days a week, we just feel that enough is enough.

"While the rest of the world is excited to be getting back to normal again, we are looking at having to push to get services back.

"We've found that the more extensive support is needed, the less willingness there is to put it in place as it costs so much money, so we tend to be at the end of the queue."

Caroline, from Killadeas, founded the South West Carers Forum in 2007 to empower families to access services for their disabled children.

Although trained as a solicitor, the mum of three children - Sarah (46), Joey (44) and 43-year-old David - ran a technology business for many years.

David was born with Prader-Willi syndrome, a rare genetic condition that causes physical and learning difficulties and behavioural problems.

After spending three years battling the system to secure her son's right to live independently when he was 18, Caroline decided to use the experience to support other families facing similar difficulties.

It led to the formation of the forum, which has become a force to be reckoned with in terms of securing funding to put vital support in place.

Caroline had hoped to retire with husband Joey (74), who owned The Vintage Bar in Enniskillen, on a tranquil island in the Fermanagh Lakes.

But such is her passion for helping others that she has continued to devote most of her time to the forum.

She has been a carer representative at local, trust and regional levels and also famously led a campaign to recover missing millions from adult learning disability services in the Western Trust.

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With friends and people she has helped

With friends and people she has helped

Photo by Kelvin Boyes / Press E

With friends and people she has helped

Asked what drives her to work so hard for people with disabilities, Caroline replied: "I wanted David to live independently in the community and it took me between two and three years to set that up.

"He has carers who go in to look after him, and my other son and myself also manage his care.

"I eventually was able to get a payment from the Independent Living Fund, which allowed us to buy the care in ourselves.

"David's condition means that he doesn't know when he is full, so he constantly wants to eat and needs supervision 24/7.

"When he was set up in his apartment, I decided to help a couple of other families do the same thing.

"It was only supposed to be for a year, but the need was so great it kept growing and, eventually, the forum was formed.

"We are not a service organisation. We set out to be a very informal voice for families of adults and children with learning difficulties.

"We have now become an activist group, representing carers in the community at trust level, with the Department of Health and with MLAs."

During her struggles to secure independent living for her son, navigating the system proved so difficult that Caroline was forced to reach out to other parents for help.

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Caroline Kelly

Caroline Kelly

Caroline Kelly

She now provides this same support to other people.

"It is very difficult for any mother to make the decision that their disabled child is no longer going to live with them," Caroline said.

"We formed this circle of support with a group of families who reach out to each other and support each other when dealing with the health trust to ensure that they get the services they need."

This same community spirit helped many families with disabled children or adults get through difficult periods of lockdown.

"We Zoomed regularly with each other to keep in touch and support each other," Caroline said.

"The most positive thing to come out of the past year for us was the way the community and our extended families came together to support us and help out with shopping and other needs.

"After a year, many of us are anxious and exhausted, but we are also resilient."

Caroline was presented with her Caring Spirit Award by Power NI's senior sponsorship and events executive Gemma-Louise Bond and Emmerdale actors Samantha Giles and Jonny McPherson.

She immediately dedicated it to all the families that have worked so hard to improve services for their disabled children.

Power NI's Gemma-Louise Bond said she was looking forward to seeing this year's entries.

"We are delighted to sponsor the Caring Spirit Award for a third year," she added.

"At Power NI, we are passionate about the communities in which we live, work and serve.

"Via our Brighter Communities funding programme, we encounter some of the most considerate and caring people in towns across Northern Ireland who go above and beyond to enhance the world around them.

"Our previous Caring Spirit winners have been so inspiring and we hope to see how people have demonstrated their care and love during the pandemic over the last year.

"We believe we are more powerful together and would encourage readers to submit an entry for a Caring Spirit they know".


n To nominate someone for our Caring Spirit Award, email your suggestion and an explanation of why you have nominated them to spirtofniawards@sundaylife.co.uk or visit sundaylife.co.uk/spiritofni


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