Share the care
14 May 2019 | Scotland
Charity makes it possible for adults requiring full time care to live independent lives.
Caring for a disabled child is one thing but what happens when they grow up? One Scottish charity is making it possible for adults requiring full time care to live independent and positive lives.
SHARE Scotland helps by taking over every aspect of their care but also their social lives and are currently supporting more than 50 people across Edinburgh, Glasgow and West Dumbarton.
John and Elaine Mason’s daughter Nicola are just one family benefiting. Born with severe cerebral palsy, the 31-year-old is non-verbal and has highly complex medical needs that require specialist round the clock care.
She is also battling Hodgkin lymphoma, a rare cancer that develops in the lymphatic system.
Despite her many setbacks, Nicola is a fighter and has a passion for life. She has a very determined character and is not shy about making her feelings known. Communicating through sign language and the use of an iPad, she made it very clear to her parents that she wanted a degree of independence once she reached adulthood.
And her parents were determined to give their daughter not only the best care possible, but also open up opportunities she might not have been able to have under their sole care.
They have been able to deliver on both these promises thanks to SHARE Scotland.
John explains: “We always had a plan for Nicola to be as independent as possible. We knew if we kept her home we would be limiting her. When we heard about SHARE it sounded almost too good be good to be true. We are just so lucky they had space.”
Just under a decade ago, when Nicola was 21, SHARE arranged for her to move into a bungalow where a dedicated team have been supporting her ever since.
As well as arranging her housing, they arrange all her care needs from hospital visits to her diagnostic needs or shopping trips.
“Nicola’s mum Elaine dedicated her life to bringing up and caring for Nicola,” said John. “But when she left our home and went into the SHARE house we did not feel we lost a daughter. We actually felt we had claimed her back again. The relationship is completely different now we are not having to do the physically demanding aspect of care.
“Nicola is actually a thrill seeker, she has even been potholing in her wheelchair! Whereas others were nervous, she never stopped laughing. But actually our favourite time is when she comes to us on a Sunday for lunch. We have her favourite dinner of roast chicken - woe betide if we deviate from the menu - and then watch a movie. And if her brother can be there, even better. He is very protective of his little sister.”
John added: “I am in absolute awe of my daughter. But SHARE and their staff are just incredible too. They have not just supported Nicola but they have also given the whole family unending support. They always listen to anything we bring up, and always have Nicola’s best interests at heart. I wish more families were as lucky as us - they are not just helping Nicola, they are helping the whole family out.
“Nothing is too much. If she needs a new recycling chair, or special cushions to support her, they arrange that. It means when we see her we can spend quality time with Nicola.”
The charity was founded 35 years ago by two families who each had daughters with complex disabilities. They were worried about the long-term care options available to their children, who were due to leave school and the idea of their children living in institutions was unacceptable.
So they took matters into their own hands and and SHARE Scotland was born. By 1991, they had opened two specially-adapted houses, each supporting five adults. This was a groundbreaking shift from the traditional, outmoded form of residential care. The houses were just the first step.
Now many of the people SHARE supports have their own tenancies – either on their own or sharing with another person.
Lynne Dignon, the charity’s regional manager, said: “A number of people have been supported by SHARE for over 20 years’, enjoying a quality of life they might not otherwise have benefited from.
“Yes, it is hard work, but everyone deserves to be able to live the best version of their life possible and seeing this makes it all worth it for our dedicated team of staff and volunteers.”