Dan in real life

Posted on: 29th August 2014

Dan's life is now very different from a few years ago. He's now living independently and getting involved with lots of different activities, while his mum Sam has been able to return to work after years of being the sole carer for her son.

22-year-old Daniel Harvey acquired a brain injury when he was 2 years old, resulting in very severe cognitive and physical difficulties. Dan, who has learning needs and a history of epileptic seizures, is wheelchair dependant and requires 24/7 support with 2 to 1 support for parts of the day.

At breaking point

When Dan’s case manager Claire Wright started working with him in December 2008, he was 16 years old and living with his mum Sam, younger brother and twin sisters in a rented house. Dan was angry and aggressive due to his brain injury; Sam was struggling to care for him and was becoming more and more concerned for her family.

Claire aimed to resolve the difficult situation at home by providing support to Dan and giving his mum some much needed respite. “Claire’s brilliant, she really is,” says Sam, “she’s so reassuring. Every time there’s been a problem, she’s helped us to resolve it without sugar-coating anything, which is what we needed.”

Claire appointed Katharine, an experienced support worker, whom she knew could handle the challenges Dan presented. Katharine initially helped out with Dan’s morning routine and personal care. “I started working with Dan on Boxing Day,” says Katharine, “I stepped into a house with 3 young children, a disabled teenager, a mum at the end of her tether and all in post-Christmas chaos.

“I tried to gradually put forward ideas for changes that I felt would make a positive difference to their daily routine and general wellbeing,” says Katharine. “I got Dan’s younger brother and sisters involved with doing the laundry, so that Sam didn’t have to do it all. I made it into a game – matching up all the pairs of socks (this was not always as easy as it sounds). I did a similar thing with food shopping and the whole family, even Dan, wanted to help. Getting Dan involved in food shopping and prep led to him taking an interest in different types of food – especially fruit and veg. It also helped to improve his relationship with his siblings – he'd help me to prepare dinner by washing vegetables so I could chop them and he'd show the children what needed to be done. He enjoyed being the big brother.”

Getting back on track

In January 2009 Claire arranged an emergency multi-agency meeting with Dan’s school, social workers and a specialist accessible housing occupational therapist, in order to address issues such as the physical aggression Dan had displayed in school, the support Dan required and the insufficient space that the family home provided.

With Dan's team working together with the family, a more suitable house was identified through accessible housing. The dining room was already converted into a bedroom for Dan; a ceiling track hoist and further adaptations to the bathroom were carried out after Dan and the family moved in.

Dan needed more support at home following an operation shortly after the family moved into their new home. Release of funds during Daniel’s litigation claim was limited because his case was CICB. Claire was able to secure some funding through statutory services; however this was not guaranteed, so agency support workers were utilised as opposed to private recruitment to assist Katharine and Sam. Agency workers were helpful short term but not consistent enough for a package with such complex care needs. In June 2009, Claire secured health & social care funding for Dan's care and recruited a dedicated support team, with Sam still providing assistance over night and with some elements of his personal care.

“While Dan’s verbal communication isn’t very accurate,” says Claire, “by paying attention to other methods of communication, particularly body language, it’s not difficult to tell when he is happy or frustrated. Communication boards (where the person with speech problems will point at words, pictures or letters to indicate what they want to say) did not work for Dan because of his poor hand-eye coordination. However, those that know Dan well are able to understand him. We needed to recruit permanent support workers, who would be able to get to know Dan well over a long period of time.”

The support team’s main focus was enablement. “Dan was used to having mum do everything for him,” says Katharine, “and though he only has the use of one arm, we believed he was capable of doing many things for himself. We started to encourage Dan to feed himself at home and his ability – and his confidence – increased over time. He eats from a lipped plate and I remember one time when some food had moved up to the lip of his plate: Dan used his spoon to stop it from falling off and pushed it back down the plate. Sam was stunned that he was able to do this; it showed her that Dan was capable of doing things that she would automatically do for him.”

“It was difficult accepting help from others to begin with,” says Sam. “I’d cared for Dan for so long, it was hard to allow others to do it. They [the support workers] understood how I felt though and dealt with it really well.”

Finding Dan

By summer 2010, Sam had started to recognise that Dan was becoming a young adult and she acknowledged that Dan no longer wanted her to provide his personal care. More support was provided, so that Sam could step away completely from this area of Dan’s care. Sam went on holiday without Dan, which gave her confidence in leaving Dan with his support workers for an extended period of time. “The support that Dan has received from JSP and his support workers is fantastic,” says Sam, “I couldn’t wish for better.”

Sam and the support workers were noticing improvement in Dan’s speech, from what used to be one-word answers to speaking in full sentences, and Dan was showing signs of wanting more independence. “Dan wanted to do more and more things for himself,” says Katharine, “and one day he asked to do some ironing. I made sure that he understood that the iron would burn him if he touched the plate when it was hot and with the iron on the lowest setting, we began to iron his clothes together.” They didn’t know it at the time but this was a turning point for Dan, as it led to him trying out encaustic art (painting with wax).

“We met with a local artist I know, who funnily enough knew Dan from a previous school,” says Katherine, “and he recommended encaustic art as an outlet for Dan. Since then Dan has really got into it – photography too.” With the help of the Doncaster Disability Service, Katharine arranged an art exhibition at Stainforth Library for Dan to show his artwork and photographs. The exhibition was very successful and a number of Dan’s paintings were sold. “I thought it was fantastic that everyone was so positive about it and that Dan was getting so much interest,” says Katharine.

In August 2010, Dan was confident enough to carry out a week’s placement with the local fire service through Mencap. It was a great experience for Dan and he was featured in a local newspaper. Claire and Sam began to think about what would happen next for Dan, once he left sixth form. They started speaking to Connexions, looking at colleges in the local area and discussing the feasibility of Dan living independently. They felt that best option for everyone would be for Sam and the rest of the family to move into alternative accommodation and for Dan to stay in the current home. At the start of 2011, Claire supported Sam with finding a new home and by the end of April Dan was living on his own with a 24/7 care package in place. This is when Claire noticed a cheeky side to Dan. "The environment was no longer chaotic and over-stimulated, so he was much more relaxed,” says Claire.

It seemed the only time Dan was now unhappy was when he was at school. From March onwards, Dan’s support workers began to go into school with him, to assist at points throughout the day when Dan required personal care. This helped somewhat but Dan continued to become more and more unhappy while he was in school. He was due to leave school in July but it was decided to bring his leaving date forward to the start of June. By September that year, Dan’s seizures had ceased.

Moving on up

On 20th March 2012, Dan’s CICB hearing took place and his case was settled. The final sum was paid out in April, from which point Dan had his own funds to pay for his care, equipment and other much needed resources.

With Claire’s help, Dan purchased his own vehicle in May. Once all the necessary adaptations had been made to the vehicle, Dan collected it in June. Up to that point Dan had been using an old second-hand vehicle, which had been adapted for another wheelchair user and was not ideal for Dan: wheelchair access was via a very heavy ramp and there was not enough space inside for the support workers to easily get Dan into the vehicle and make him secure. The new vehicle had ample space and an electric lift at the rear – much better! Dan now loves cruising around with the music turned up.

Dan started getting out and about more and enjoying different activities, such as going to the hydro swimming pool at Park Rehab Centre. Katharine then discovered the Solar Centre at St Catherine’s Hospital and Dan started to use its sensory rooms, art rooms, rebound therapy and take part in social activities. “The whole team are great,” says Claire, “especially when it comes to stopping Dan becoming ‘stagnant’ and finding local activities for him to get involved in.”

Giving people back their independence is what being a support worker is all about according to Katharine. “The way I see it,” says Katharine, “if I work myself out of a job then I have done a good job.”

In August 2012 a more suitable property for Dan and his carers to live in was found and purchased. Once adaptations work was complete on the ground floor of the new house, the goal was for Dan to be able to use his electric wheelchair and move around independently. There were some concerns about Dan’s visual impairments, so Claire got help from a specialist tutor for visually impaired children at Heatherwood School, who assessed if Dan would be able to use his power chair. Dan was given the green light.

The work on the house took a long time to finish, due to the level of adaption required. Dan finally got the keys to his new home in March 2014 and has since been relearning to use his power wheelchair.

Work and play

When Dan left school, he started to express an interest in going to work. Paid employment wasn’t a feasible option, so Katharine began to look for a volunteer placement that would suit Dan. He liked the idea of working in the Walled Garden Centre at St. Catherine’s House and, in November 2012, Katharine applied for Dan to start an occupational placement there. The staff were hesitant at first; concerned that Dan would effectively be using the garden as a day centre.

Amanda Duffy, occupational therapist at St Catherine’s, helped to work through the issues with Dan and the Walled Garden staff. An agreement was written up, specifying the times that Dan would work at the garden and what work he was able to do, and he started the placement in March 2013. Dan mainly helps the staff with planting seedlings and potting up planters, some of which are now on display at Doncaster Minster. “Dan was so pleased when his plants were taken to the minster,” says Katharine.

“It’s been really useful for the staff too,” says Katharine, “and it’s showed them how they can facilitate disabled workers.” Dan has also got involved with the Workscheme, run by Patrick Sherry of RDaSH, which gives resident patients the opportunity to get involved with occupational projects.

Patrick kick-started a project to build a potting shed in Dan’s back garden at home. “Patrick spent quite a bit of time with Dan to find out exactly what he needed,” says Katharine. “Worktops needed to be built at the right height and everything had to be arranged to work for Dan, with him only having use of one arm.” Dan has been getting involved with building the shed too, as have some of his friends outside the placement. As well as the potting shed, the team have built raised beds, at a height suitable for Dan when he’s in his power chair. “It’s opened the door for residents at St Catherine’s to get involved in more community projects,” says Katharine, “it’s just brilliant.”

“Dan’s loved getting involved with the garden at St Catherine’s and the Workscheme project in his own garden,” says Sam. He’s worked hard and his brother and sisters have really enjoyed spending time with him in his garden and watching everything that’s been going on. It’s great that they all get on so well now. Everything’s perfect – I’ve got my family back as it should be.”

A new outlook

Dan’s diary is very busy these days: H2O Hydrotherapy on Mondays and Wednesdays; Mencap club and DICE social club on Monday evenings; his placement at the Walled Garden on Tuesdays; Boccia at Ponds Forge in Sheffield on Thursdays; and Fridays free for Dan to relax at home. He also recently went on his first ever holiday – a long weekend in Scotland for his aunt’s wedding.

“We’re mum and son now, rather than carer and client,” says Sam, “we can just sit and talk about what’s going on in each other’s lives. I’ve started working, which is something I’ve never been able to do before. If I hadn’t had support from JSP this wouldn’t be a possibility.”

“Dan has a great circle of friends now, who are very accepting of his disability, “says Sam, “he gets to chat to them about boy stuff and do things any 22 year old would want to do.”

Read a press release about the RDaSH Workscheme project in Daniel's garden