Kelly’s Success Story
Pioneered by the National Autistic Society (NAS), World Autism Acceptance Week every March/early April aims to draw attention to the 700,000 people living with autism in the UK both to educate those unaware of the condition, and to help make the world friendlier to those who are affected by it.
The fundamental aim for everyone at Consensus is supporting opportunity, choice and success for individuals with learning disabilities, autism and complex needs, including the rare genetic condition Prader-Willi Syndrome (PWS) which is characterised by an insatiable appetite and cognitive, social and emotional challenges.
There couldn’t be a better example of someone who’s benefitted from new opportunities, learned to make choices, and found success in something they love to do than 28-year-old Kelly.
Kelly came to our residential service Parvale House in Kettering in 2018 with a dual diagnosis of autism and PWS. Rhiannon Price, Deputy Manager, recalls: “Kelly had been very unhappy in her previous placement. When she arrived here, she was very intense and had very repetitive behaviours as well as frequent outbursts, times when she was hurting herself or damaging property, or leaving the service and going off on her own.
“I was in a right old mess,” agrees Kelly. “The support wasn’t there for me in the place I lived before because they couldn’t control me. When I came to Parvale House, it was meant to be for a short time. But I settled in, then I got a job – so now I may as well stay!”
Overcoming early challenges
Back in 2018, the staff team at Parvale House were finding Kelly’s behaviours so difficult that they involved the specialists from the Positive Behaviour Intervention Team at Consensus. Behaviour Practitioner Angela Bliss explains: “Parvale provides specialist support for adults with PWS and so the staff there were experienced in supporting them, but not in caring for someone with a dual diagnosis that included autism. First of all, my colleague Laura supported Kelly and then I became involved with helping her in 2019. We did lots of interventions and work with Kelly to understand her autism and provide her with ways to cope with it.
“These are just a few examples of the ways she has made amazing, positive progress in that time:
- “5 point scale: Kelly and I created this together, to show the staff and other supported individuals what she felt like at times (Happy/Calm; Worried/ Anxious; Unhappy/Frustrated; Annoyed/Agitated; Angry/Aggressive), how this looks for her and how best for those around her to support her. This also helped Kelly when she was experiencing high anxiety or stress and was not always able to communicate verbally, so she used her 5-point scale to point out her feelings.
- “Kelly’s presentation: Kelly and I produced this with PowerPoint and she independently presented it to her friends at Parvale (with staff supporting where she needed) last summer. Since then, they have been extremely supportive and have a greater understanding of how Kelly feels and what support would be best for her during times of heightened anxiety.
- “KB menu planning: An example of the menu planning we did together is for the meal Kelly and I cooked for her friends, to say thank you for their support and understanding around her needs relating to her autism. For each course, there was a detailed recipe listing all the ingredients and their calorie counts, price of each ingredient, steps in preparation, cooking and serving.
- “KB unstructured timetable: Kelly found it difficult to have ‘free time’ so, to support her with structure and predictability, we created an ‘unstructured’ timetable of preferences for each day of the week to give her clear options of what activities were accessible to her. Those included exercise, like swimming or walking or dancing, interests including DVDs, drama, crafts, music and magazines, or times allotted for working, home learning, healthy meal planning, or just ‘chilling out’.
- “Diary instructions: Kelly found it difficult to talk about her anxieties, so we purchased a diary and Kelly would write them down. Then when she was ready, she could talk about and resolve them with me or her support team.
- “Sharing exercise: At mealtimes, all the individuals supported at Parvale, including Kelly, were recommended to share a positive story or to place a positive note in a jar to share. This built positive rapport and friendships.”
Angela also delivered special training and proactive practice workshops for the staff team at Parvale House, so they could give Kelly the extra support she needed and manage behaviour that may be considered challenging. “I would like to give praise and thanks to all the team; they have been supportive, consistent and have worked hard to help Kelly build her self-esteem and quality of life.
“She is now extremely settled, motivated, and has a whole new routine that includes work as a Consensus Quality Checker. She’s communicating with the staff effectively; other supported individuals in the house understand her and her autism; she’s looking forward to going away on holiday soon. I’m delighted that Kelly doesn’t need my specialist support any more – but she’s made me promise to come to see her and have a coffee every three months or so…”
“It took me a while to be able to trust the staff here and to be able to explain how I was feeling”, says Kelly. “Now I have strategies in place that Laura and Angela helped me with, like my “Lion Card”. When I’m in a heightened state, and ‘roaring like a lion’, staff can show that to me and I’ll go to my room to calm down. I’ve got people I can talk to when I’m not in the right frame of mind.
“Last summer I gave a presentation with my PowerPoint slides to everyone in the house. I wanted to kind of apologise for my behaviours before and help people to understand how to help me, and how best to support me when I am feeling upset or anxious, as this is mainly due to my diagnosis of autism which can cause additional anxieties alongside PWS. Then in the evening I arranged to cook a meal for all of my friends at Parvale House to say thank you for their support.
A new role
“I wasn’t able to have a paid job before, although I really wanted one, and had helped out in Barnardo’s. When I heard about the vacancy with the Quality Checkers Team in Consensus, I applied for it because I really wanted to help people less able than me with things like keeping safe and being able to achieve some of the things that I have. Fifteen others applied but I got the job!
Kelly started her new role as a Quality Checker in April 2019. She is one of a team of highly valued colleagues within Consensus. They all live within one of the services, so are experts in the issues faced by people with learning disabilities as they have a disability themselves. With their lived experience, they regularly visit all Consensus services – almost 100 of them – across the UK, Wales and Scotland. Working alongside their own PA, each Quality Checker undertakes an audit process to ensure the individuals supported by the services have a voice, share their views, and talk to someone about how they are feeling about the support provided.
“Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World” is the theme given by the UN to World Autism Awareness Day 2022, which is celebrated on the Saturday during World Autism Acceptance Week. For those with autism, like Kelly, this includes a more understanding work environment and inclusive employment programmes.
Helping people to have their say
“Being a Quality Checker is very important to me,” says Kelly. “We gather people’s views on the services and what changes may need to be made to ensure every individual we support has the best quality of life. We carry out audits of the service and support plans in place, we talk to staff and managers and give them feedback. We also ask the individuals what their goals and aspirations are, to ensure that we are meeting these and everyone has the opportunity to succeed in their life.
“I go round to visit all the services in the North and Midlands areas. I feel proud being able to help people who aren’t as able as I am, to make their lives easier. I feel I have the skills to help individuals living within the Consensus services have their say. I really do enjoy making sure that everything is being like put in place.
“My work has given me the opportunity of making people feel better. I helped one person to find a job, I helped another move into more suitable accommodation. If I speak to people and they’re not happy, I can find out why and I can do something about it. Without my job, I’d be in a different place – with it, I’m really happy. I love it so much and there’s no way I’d want to lose it – so it’s a good thing that I haven’t got the sack yet!”
Kelly is also creating positive changes closer to home, by moving from her downstairs bedroom to an upstairs room that is currently occupied by a supported individual with mobility and health issues.
“As a Quality Checker, my role is to help people so it’s no problem to move my room if it will help someone out and help the staff here,” Kelly explains.
“The deal is that the moving will be done when I go on holiday to Portugal soon, with my family. The upstairs bedroom and bathroom are going to be decorated just the same as the room I’m in now, there will be a laminate floor and, because the new room is a bit bigger, space for a desk and a printer. That’s going to be really good for my Quality Checker work.
Living with PWS and autism
“My biggest achievement as a Quality Checker is overcoming certain challenges that are involved with living with PWS as well as autism. This includes walking into kitchens, being around food in certain situations, and being able to control my PWS as well as doing my job at the same time. Not that I let those defeat me! I have my challenges but now I know how to work through and around them.”
Rhiannon remembers that, because of PWS as well as autism, food was a real problem when the team first met Kelly: “She couldn’t be offered any kind of choices, whether it was for a meal or just an ice cream, cake or yogurt. Now we have daily choices of menus for lunch and dinner, as well as a ‘tuck list’ for treats, and she has become able to cope with that so well. Kelly even worked out a rota with the other supported individuals living here to make sure everybody gets a fair turn at choosing their favourites from the ‘tuck list’ first, making sure that nobody has to have the same snack or drink every time if they don’t want to – but also that they can pick a favourite.”
Kelly says, “We go into the kitchen here and do our own breakfast with the help of the staff. That’s except on Sundays when we have a cooked breakfast. The staff do the cooking and then we come into the kitchen and choose what we want – it’s yummy.
“For other meals, we now have a menu with a choice of two different things for each course, so you can pick the one you want, and have different things on different days.
“Before I came here, I struggled with variety and choice. I didn’t even like people having different flavours on offer. Now, as a Quality Checker, I would say: ‘Why haven’t you got choices available?’ It wouldn’t look good for Parvale House if the staff here had to say: ‘There’s no choice because Kelly doesn’t like that.”
“We’re all proud of Kelly. It’s inspiring to see how well she has coped since coming to us,” Rhiannon adds. “Her job is one important aspect of that journey, but outside of work she’s busy with all her other interests too – going out walking, or swimming, or to the cinema, doing jigsaw puzzles, playing on her Nintendo DS or Wii, getting into the kitchen to cook and loading the dishwasher afterwards.
“She also became a founder member of the Consensus Voices Forum for supported individuals when it began in the spring of last year, and by the time of the Forum meeting just before Christmas she had even taken up the challenge of being the Chair of the day’s event. She said was nervous at first when invited to do that, but then thought ‘Why not?’ It’s just one example of how Kelly has improved in leaps and bounds since she’s been here, and really come a long way.