Meet Ellie
Ellie is an active young autistic person, with a good sense of humour, who loves animals and being outdoors. She has a diagnosis of learning disability, is non-speaking but can understand conversations. She also has epilepsy, which is managed with medication.
Ellie has a supportive and loving family and grew up with her parents, sister and two brothers in the family home until the age of 13 when she moved into a Residential Children’s Home. It was reported that she was very settled in this setting for several years, enjoying going for walks, often long distances, being outdoors and spending time with her family. At the age of 16, she experienced a significant decline in her physical health, due to dehydration caused by induced vomiting behaviour. She spent several weeks in hospital, including time in an Intensive Care Unit (ICU). While no single cause was identified for the deterioration in her physical health, there were several contributing factors noted at the time. These included a lack of consistency within her support team, limited access to meaningful and suitable activities, and recent changes to her epilepsy medication.
Following her discharge from hospital, Ellie appeared noticeably withdrawn and less willing to participate in the activities she had previously enjoyed. Attempts by her care team to support and re-engage her were often met by ‘behaviours of concern’. It was considered that Ellie was suffering from trauma due to her hospital admission and that this change in ‘behaviours’ were symptomatic of her experience and interpretation.
On reaching the age of 17, preparations began for Ellie’s move to adult services. Given her experiences and the importance of continuity and trust, we were asked to propose a package of support for Ellie that focused on her individual needs and preferences. We were asked to include protected time for Ellie to spend time in her family home. It was agreed that we would provide a 2:1 24/7 package of support with each weekend spent at her family home.
This is the package of care we designed for Ellie …
Accommodation
Our Property Team identified a suitable first-floor two-bedroom flat located just a 10-minute drive from Ellie’s family home. Maintaining proximity to her family was seen as an important factor in supporting continuity and emotional security during this period of change.
Because Ellie enjoys spending time outdoors, it was essential that the property included a garden and easy access to areas to walk. Given Ellie’s sensory needs, and in recognition that certain noises can be distressing, we prioritised finding a home in a quiet semi-rural location whilst still close enough to local amenities for accessibility and community connection.
Adjustments were made to ensure the environment was as safe and as comfortable as possible. These included fitting radiator covers and ensuring that light switches were flush with the walls to reduce sensory impact and physical risk.
Staff Team
As part of Ellie’s assessment, it was identified that she responds positively to female support staff. We therefore intentionally recruited an all-female team with relevant experience in supporting autistic individuals and in working with individuals who do not use spoken language to communicate.
Given Ellie’s need for structure, predictability and a calm environment, we looked to recruit candidates who demonstrated a calm, confident approach and the ability to think creatively when supporting someone like Ellie.
To reduce the impact of staff changes, which can be unsettling, we over-recruited a team of regular bank staff who could step in when needed.
Training
Ellie’s new team attended our induction week and received training designed to meet Ellie’s individual needs. This included training in learning disability, self-harm, PROACT-SKIPr-UK®, non-verbal communication, epilepsy, medication management and first aid.
As Ellie can present differently depending on her environment and the people around her, our assessment was carried out in both her current setting and her family home.
Shared Interests
As Ellie loves animals and enjoys being outdoors and walking, we actively looked for some candidates that shared these interests. To encourage Ellie to also try new activities, we also recruited team members with other interests.
Clinical Input
Ellie’s package of support has been carefully designed with a focus on proactive, person-centred strategies to reduce the need for reactive interventions. Access to regular activities and a full sensory diet support her sensory needs in a safe and meaningful way. Given Ellie’s risk of malnutrition, nursing support was included in her package of support. This also ensures close monitoring of her epilepsy. Occupational Therapy was included to help Ellie participate in daily routines and encourage engagement in activities. Speech and Language Therapy was incorporated to help Ellie find ways to express her preferences and needs.
How is Ellie today?
We began supporting Ellie in November 2021. Our Quality-of-Life Tool, introduced in 2023 uses a simple scoring system to help the people we support rate their level of satisfaction with key areas that impact on their quality of life. A score of ‘five’ is very happy, a score of ‘one’ is very unhappy. From the chart, we can see where Ellie feels her quality of life has improved.
Our Gray Healthcare screening tool shows improvement in the following functional skills: clinical, self-care, domestic, community, leisure, cognitive, communication and social skills.
Consistency has been instrumental in helping Ellie communicate with her team and family. With support from her Speech and Language Therapist and by everyone in her team using the same approach (Makaton signing, using objects of reference and verbal cues), Ellie now happily signs back to her team and family. She is now able to fully express her wishes and needs.
Along with visits to see her family, Ellie also likes going to the park, for long walks and to her local Snoezelen therapy centre. She loves a home movie night and has enjoyed various recent day trips, for example, to Bristol Zoo Project, the Malvern Hills and a day out at the Forest of Dean. She has just been on her first camping holiday and now has a pet of her own, a cat called Kit-Kat!
‘Ellie has such a playful sense of humour, hence her calling her cat ‘Kit-Kat’! She is so curious about the world around her and it’s been wonderful to see her confidence blossom as her ability to communicate has improved.’
(Support Worker, Ellie’s Team)