Rachel and Paul’s daughter, Ella, contracted meningitis when she was one and was left profoundly deaf and with severe learning difficulties and epilepsy. She also has a diagnosis of autism spectrum disorder and ADHD.
These complex needs mean that Ella, now 20, needs a high level of support and struggles to take part in many social activities.
“Ella’s situation may be complex,” says Rachel, “but her needs are actually simple – a safe space where she can do the things she wants to do.”
For the last 15 years, Ella’s safe space has been within the disability services offered by YMCA East Surrey. She started attending the Yippee club as a five-year-old, before moving up to Yip4Youth at 12.
“It takes quite a leap of faith when you first leave a child who has complex needs with someone else,” says Rachel, “but that respite care is vital for the whole family.”
“Life before Yippee and Yip4Youth was organised on a ‘divide and conquer’ basis – either Paul or I would occupy Ella and the other would look after her two brothers.”
“The specialist setting of the YMCA disability services gave us the opportunity to do simple things together which were impossible to achieve when Ella was with us. We could go out for a meal, do some shopping or see a film at the cinema.”
Transitioning to a new setting is especially hard for Ella. After leaving secondary school in July 2021, unfortunately her college place fell through and she was left at home without a suitable social care placement.
“Finding the YMCA Lifeworks scheme has been a real lifeline,” says Rachel.
“Having Ella at home requires constant vigilance and we can’t take our eyes off her. At Lifeworks, she is safely occupied in small groups which are tailored to her needs. Accessing the social sessions three times per week means that Ella can socialise with others when she was at great risk of becoming isolated.”
“I count myself as very lucky to have been able to continue working, as many parents who have a child or young adult with disabilities are forced to stay at home when there is no one who can support them with one-to-one childcare.”
Lifeworks sessions offer activities such as gardening, sensory play, art and physical activities like trampolining, which the young people can access, dependent on their own interests and abilities. This programme provides ongoing appropriate activities for young adults with disabilities when many other areas of provision come to an end at 18 years of age.
Staff have seen remarkable progress from Ella in the time that she has been attending Lifeworks. Although non-verbal, she has recently begun to use illustrated boards and signing to communicate with staff.
“Ella is so limited in what she can do and where she can go. Like anyone else, she gets bored and likes going somewhere new or being around other people,” says Rachel.
“The delight with which Ella responds when we sign ‘Play’ and ‘YMCA’ to her in the morning is all the proof we need that she is happy at Lifeworks and we can’t thank YMCA East Surrey enough for continuing to cater for the most complex young people with such enthusiasm and passion.”
“We feel lucky to live so close to such a fantastic provision that has made a very challenging time such a positive one for Ella.”