Parity for Disability’s first service opened its doors on October 1, 1991, not a day too soon for Alan and his family.
The future looked bleak for Alan and for most people with multiple disabilities. Services in the UK had not evolved for adults with a combination of physical and learning disabilities, some of whom also had a sensory impairment or epilepsy, and who required support for most aspects of daily living.
A formal study of the area had proved that a huge gap in services existed for people with multiple disabilities. Alan needed a chance to achieve his potential and enjoy a good quality of life.
Alan’s mother was one of a local group of pioneering parents determined to change the outlook for their sons and daughters. The parents spent years researching and planning a specialist centre with personalised care and support for young adults with multiple disabilities. Trained staff would ensure every individual enjoyed opportunities to develop, achieve, and integrate with the community. Each person would access physio, speech and music therapy to maintain their health and wellbeing.
The group opened Parity’s first day service in Frogmore Community Centre, Yateley with just six people, including Alan. Demand grew and the service has since moved to St Martin’s Church, Camberley. All its spaces are filled, providing care and support for 12 people per day.
Alan arrives around 9.30am, and catches up with staff and service users, called students, over a drink. He reviews how he’ll spend his day and if he has any special requests, this is when he’ll bring them up.
Alan has his own Individual Programme Plan, which sets out goals to develop his skills. The plan is agreed with Alan, his family and any other professionals involved in his care.
Alan’s learning goals are built into his activities. On a typical day at Parity, he might do arts and crafts, music sessions, games, participate in a cooking group or make a trip out. There may be an educational visit from an organisation like a mobile zoo or a dance group.
This morning Alan does one of his favourite activities which is to go to Asda in Farnborough. He uses a Parity minibus. The fleet of adapted vehicles gives students the opportunity to go out and about in a flexible way on a regular basis.
Alan enjoys seeing the staff in Asda customer services, who like to chat. Socialising is an important aspect of Alan’s day. His activities are very much focused around people, as Alan loves to be in company.
One goal for Alan is to develop his concentration skills, and on another day he might start with something that will help him do this, like a memory game.
It’s important that Alan and all Parity’s students are able to take part in their activities, rather than just watch. Parity employs keyworkers on a one-to-one basis, and they’re trained to support people with multiple disabilities. Alan´s main keyworker knows and understands Alan well. Other keyworkers also support Alan, ensuring that all the staff get to know him.
There’s an up-to-date file all about Alan. The file has information such as Alan’s positioning in his wheelchair, how he is able to eat and drink, and how he communicates. There are details about Alan’s preferences, like the activities he enjoys, and which food he likes and dislikes. Photos are included along with video or audio files that will help build a picture of who Alan is.
Alan is encouraged to develop his living skills and today he´s decided to cook his own lunch. He decides to make chicken pie. Supported by a keyworker, he does all the work from beginning to end, chopping, weighing, rolling out pastry, greasing the tin, mixing the ingredients and putting the pie in the oven. Then he helps wash the dishes and tidy up.
On a different day, Alan might go down the road to the nearby shops to choose his lunch, or buy the ingredients to make it.
At lunch, Alan volunteers to take everyone’s drinks orders, along with the keyworkers. Lunch is another social opportunity, as students and staff eat together. All the students are encouraged to eat independently, but there is one-to-one support for those who need it.
Alan helps wash up afterwards and puts the tea towels in the washing machine.
Like most of the students, Alan uses a wheelchair. He has regular physio exercises at Parity to relieve the pressure on the body of spending so much time in the same position. A qualified physiotherapist has provided a programme for each student, designed to address or avoid discomfort and health problems. Each keyworker receives training to carry out regular physio motor skills exercises with the students.
For years, pain in his hips meant Alan constantly used a lying position in his chair. The right exercises three times a week have slowly and gradually allowed Alan to sit up comfortably and he now uses an upright wheelchair. Alan can take part in activities, and life in general, much more easily.
Being in a sitting position also means Alan can eat and drink without risk of choking, and helps his digestion.
As a further part of his physio activities, Alan spends time in a standing position in a sling, an activity he loves because it puts him at eye level with others. Two staff are needed to hoist students out of their wheelchairs, and Parity has enough staff to allow
students to regularly and safely relax or exercise.
Most of the students don’t use speech or sign-language to communicate. Alan does speak and his goals at Parity are focused on developing clear speech, on taking turns in a conversation, and on lengthening his concentration span.
Parity’s staff receive specialist training to work with all students to develop basic communication skills using a number of techniques. These include signs and symbols, communication boards and books, touch talkers and other technology, or body language.
Alan is outgoing and confident, talking openly with the new people that he meets, as well as familiar faces. This afternoon, staff from a local law firm have come for a visit. Alan accompanies the visitors as they’re shown round the service. Alan remembers names and faces well, and through his social skills he’s become an effective ambassador for people with multiple disabilities and for Parity.
Alan’s day at Parity finishes at 3.30pm. Alan’s mother is kept aware of any important aspects of each day through a record book that Alan carries with him. She also writes details in the book of any information that she thinks Parity staff might need, letting them know, for example, if Alan has had a bad night.
Alan spends three days a week at Parity. On one other day, he uses a hydrotherapy pool run by a charity in Chertsey.
Although Parity’s day service officially runs from Monday to Friday, the support Alan receives during the week overlaps into the weekend. One of Parity’s keyworkers, will often accompany Alan when he goes out on a Saturday or Sunday. For Alan, it’s a natural choice as they have the training and know Alan well.
Since Parity’s first service opened, the charity has grown to support 54 people from Surrey, Hampshire and Berkshire. A second service opened in Cove, Farnborough in 1998 and a third in Mytchett, Camberley in 2015.
‘Without Parity, there would be nothing for Alan,’ says his mother. Even today there are very few services anywhere in Britain focused on providing practical support for people with multiple disabilities. Because the number of people in this group is considered small, traditional disability services haven’t developed around their needs.
Alan’s mother appreciates the support she receives too.
‘I can go there any time I want to and time will be given to me to find out what I need, and put my mind at rest,’ she says. ‘It sounds corny, but it is like a family.’