“Being a parent of a disabled child changes your outlook on life”

This Trustees’ Week, we spoke to Bethan Skyrme, a governor of Scope school, Craig Y Parc, and Celia Atherton, a Scope trustee. They talk about how and why they’re using their skills and time to support Scope.

Bethan

My son, Jac, is disabled and has been attending Craig Y Parc School in Cardiff since he was 17 weeks old. He’s now nearly 15, so it’s been a big part of our lives for a long time. Craig Y Parc helps disabled children to develop skills and realise their potential in a safe and supportive environment.

Bethan and her son Jac smile for the camera
Bethan and her son Jac

Jac originally started at Craig Y Parc for half an hour a week, and became full time when he was three years old. He also now attends a local secondary school one day a week. It really has given him the best start in life, and he wouldn’t be the person he is today without it. Being involved with Craig Y Parc has helped to make me stronger and more confident too.

I’m well known at the school and three years ago was approached to volunteer as a school governor. I was surprised and honoured to be asked and definitely wanted to get involved and to give something back. I’ve just finished my first three year term as a governor and have been asked to stay on for another three, which I am very much looking forward to.

In my day job, I work for Estyn, the body responsible for inspecting schools in Wales. I’ve been able to use the skills and knowledge gained in my professional role to support Craig Y Parc as a governor. This came in particularly handy when we went through our inspection, and ensured we had all the relevant documents in order.

I have a busy life, but I’m organised and make sure we have a set routine at home. This helps to make sure I can fit everything in. As well as being a school governor, I also volunteer with a charity that supports homeless people in Cardiff. I help them move in to permanent accommodation and support them during the transition. Being a parent of a disabled child really does change your outlook on life. It makes you see the world differently and I’m glad that I’m able to give something back to the community and to Craig Y Parc.

Celia

Celia and Scope supporter Nicolas McCarthy
Celia and Scope supporter Nicolas McCarthy

I originally heard about Scope through my work in social justice with disabled children and their families. Three years ago I heard there was a vacancy for a new trustee, and this seemed like a great way to get involved with Scope’s work.

I was really interested in the role as I knew that being a trustee would allow me to work to plan the future of the organisation. I hadn’t been a trustee before, but decided to apply and was thrilled to be offered the role.

Becoming a trustee has really opened my eyes to what we can achieve. All Scope trustees are volunteers. All volunteers at Scope are equal, whether they are based in a shop, a service, at head office, or volunteer remotely. We are all working to push our society to be one where disabled people have the same opportunities as everyone else.

Being a volunteer, I ensure that I’m an ambassador for Scope. I have visited Scope services and shops to see the varied work we do, and talk about Scope’s ambitions and work wherever I go. I have taken part in Ride London twice to raise funds and awareness for the work Scope does.

I love meeting disabled people and their families who have benefited from Scope’s work. They are a great testament to what we are doing to make the country a better place for disabled people. It’s great that Scope works to support all disabled people, and that we have such a wide reach across all areas of disability.

Since taking on this role, I have now become a trustee for two other charities as well. I really enjoy the way being a trustee allows me to give something back. I like to be busy and am able to juggle volunteering with my other commitments. If you are interested in helping to create the strategy that directs an organisation, or if want to develop your skills, being a trustee is definitely for you. Whatever your age or background, volunteering as a trustee is a great way to make a difference.

If you’re feeling inspired by Bethan and Celia, take a look at our volunteering opportunities.

Find out more about Scope school, Craig Y Parc.

Read more about Trustees’ Week and how you can get involved.

 

 

 

 

 

 

Independent living – “I could be sat in my room for nearly 24 hours at a time”

Ricky is currently studying for a Masters degree in the Theory and Practice of Human Rights. In this blog he describes his experience of living independently while at university.

Before going to university, I knew very little about the operation of the social care system. I had attended residential schools for blind and visually impaired people since the age of 8, where specially trained staff were always on hand to assist if and when required. The prospect of not having someone upon whom I could always call was initially very daunting, but my desire to attend university outweighed such anxieties.

When I was planning to go to university, I opted to use a care agency for my support, as I felt this was a safer option than direct payments. After all, I was moving to a new town and didn’t know anyone in the area.

The idea of going to university for the first time without anyone to turn to for advice, let alone taking on the additional hassle of recruiting reliable support workers was very daunting.  Agency staff, in theory at least, would be vetted and experienced and it would be the agency’s responsibility to ensure that I always had the support I needed.

Theory and reality can be very different

Sadly, as is so often the case in life, theory and reality can be very different.  On several occasions, new staff would turn up at my door without me being given prior warning, something which is especially confusing for someone who can’t see.

The agency would often send staff at the incorrect time, inform them that my shifts were shorter than was actually the case, and would even tell me regularly that they weren’t sure if they had any staff members who could visit me on a given day, which made me feel more anxious than words can describe, given that my family lived in Ipswich, 125 miles away.

On one occasion, I was told the agency had no staff who could come and visit me that day.  When I asked the agency what they expected me to do for food, I was simply told that I would have to make the best of things and that I would be fed the following day!

Half-way through my second year at university, I decided to take the plunge and switch to direct payments. The direct payments system is not plain sailing by any means. It is a constant juggling act trying to ensure that all staff have sufficient hours to keep them happy in the job and there is no guarantee that suitable applicants will respond to adverts.

Direct payments

Nevertheless, direct payments have given me much more flexibility and I have been able to recruit many staff with whom I have a lot in common, so these people are not only my carers but also great friends. A direct payment support service supports me with logistical issues, such as ensuring correct taxation, National Insurance contributions, and pay slips for my staff.

Until recently, I had no more than 22 hours of support while at university and around half this while living at home. This support met my basic needs, but meant that on days when I had no classes at university I could be sat in my room for nearly 24 hours at a time. I therefore had very little social interaction during term-time. This, combined with the problems I had with my previous support arrangements, took its toll upon my mental health.

However, I have recently secured an increase in my hours to 41.5 per week.  As a result of this, I am confident that the forthcoming academic year will allow me to be even more independent and have an even more fulfilling university experience.

Find out more about young disabled people’s experiences of living independently. Read our new research report, Leading my life my way.