Who we are?
We are Julie Baird and Sarah Godfrey and we are both parent carers of two young adults who have disabilities. We met at a parent carers’ meeting that was held to start campaigning for disability transport.
We were also part of a group of parent carers’ who formed a local campaign group to help improve services for disabled people in our area and nationally. We then formed a friendship.
We both shared the same values and a passion for social justice, particularly for parent carers, and we continued to support each other as our children were of a similar age. One day we were having a general discussion about the lack of opportunities for parent carers who want to do something for themselves, such as a hobby, volunteering, or paid work.
We then talked about how we have seen some progress within our culture towards disabilities in general. However, support and opportunities for carers to work, volunteer, or improve their well-being are extremely limited. Our lived experience has made us passionate about improving the lives of unpaid parent carers.
We would put the parent carers at the centre of our work, we will then support them to develop themselves. We want to support them to be able to make positive changes for themselves, to value themselves and their skills. We want to empower them to improve their lives.
Refresh Carers is now a registered charity.
Sarah’s story
My daughter Olivia was born in 2002, at birth they discovered Olivia had a hip displacement and she struggled to feed and interact with other people. At this time, my relationship with Olivia’s father broke down and I became a single parent to Olivia and her older brother. I went back to work after my maternity leave - I was employed by the local council as a Community Support Worker.
Olivia had lots of health issues and was not reaching the usual childhood milestones, there were lots of hospital appointments and appointments with other professionals. In 2006 when Olivia was four, I had to give up work due to Olivia’s caring needs, as I had no family support and working was impossible. Olivia was eventually diagnosed with a rare genetic disorder called SETD 5 syndrome. Olivia was also diagnosed with Autism in 2022.
My caring responsibilities over the years have meant that I was unable to commit to paid work and as the years have gone by my confidence in my working ability has diminished. However, in 2005 myself and a friend, who was also a parent carer, set up a voluntary organisation, a support group for disabled children and their families. It supported families with disability benefits applications, education issues, carer’s assessments, benefit entitlements, respite and social care support and offered support with appointments and court hearings. In 2010 the brilliant work supporting families was recognised by the Council and the organisation was given the ‘Big T Award.
I went back to Leeds City College in 2009 to gain a qualification in counselling and I volunteered to help other students and was awarded Student of the Year. Between 2013 and 2017 I studied and gained a BA Honours in Health and Social Care.
In 2018, myself with Julie and other parent carers started a new campaign group, DEAL – Leeds, (Disability Empowerment Action Links). This group was set up to campaign for better services for disabled people in Leeds and worked alongside Unite Community Leeds Wakefield. One campaign, around school transport cuts for the over-16s with special educational needs and disabilities, was completely successful. As a prominent member of it, I used many skills, for example, research, use of IT, video-making and public speaking.
I continued to work alongside Unite Community by doing some outreach work in the community around the sanctions on universal credit and offered support to members of the community around food banks, welfare support and helped to design a pamphlet on services available to support people.
I am passionate about the rights of disabled people in society! Being a carer for my daughter has been the most challenging, therefore I am enthusiastic about Refresh Carers because carers’ wellbeing is important, and they should have a choice alongside the support needed to enable them to integrate back into the working world when they are ready!
Julie’s story
My daughter Millie was born on 15th November 2001, and myself and Millie's dad were over the moon, as were her two older brothers Christopher and Sean. Everything was OK until about 5 months later when a nurse noticed that Millie’s head circumference was smaller than normal. We were sent for a consultant’s appointment and some tests were undertaken.
At the next consultant’s appointment, the consultant confirmed that Millie had Microcephaly, meaning that her brain was not growing normally. He said that things did not look good. I can still remember Millie’s dad and myself holding Millie and sobbing on the way back to the car.
Millie is now 20 years old and is a wonderful mostly happy young woman; she is non-verbal and uses Makaton to communicate. She is wheelchair-bound and needs 24-hour care. Millie is a very determined person and enjoys socialising.
Being a parent carer of a severely physically disabled daughter with severe learning disabilities has been difficult in many ways. We have had to fight for many services to get the help Millie needs, we have had to buy a bungalow and have adaptions to the property. My partner and I have both had to work part-time around Millie’s care needs.
I have been the main breadwinner for the last 10 years, and working in an interesting role for my local council has really helped me in many ways, for example, financially, with my confidence and making me feel much less isolated. Therefore, I am extremely passionate about the aims of Refresh Carers, about empowering parent carers to make positive changes for themselves, such as obtaining a hobby, volunteering or finding a job. I know the massive impact this can make on the well-being of a parent carer.
I have a degree in History with Women’s Studies and a background in Youth Work, Community Development, Intensive family support and delivering training
Millie & Olivia