Who we are
Drawing on her knowledge and experience of raising six children with a range of additional learning needs Karen is actively involved with a number of peer led groups within the local community. Motivated by the desire to support families facing similar challenges she is a trustee with Swansea Autism Movement as well as an admin for the peer led support group Joining The Dots.
Following on from personal experience of accessing services Karen has become a keen co-producer and has been involved with Swansea Co-production Network since 2017. Within the Swansea context she sits on the Learning Disability Co-production Strategy Group for adult services and the citizen led Swansea Vale Development Group contributing to the design and delivery of services for adults with disabilities. More broadly Karen contributes to the citizen forum and social value forum within the West Glamorgan Regional Partnership Board.
Realising the value of her experience has given Karen the confidence to take on new and exciting opportunities. In addition to becoming a parent governor at her children’s school she has also become involved in shaping Wales’ first Poverty Truth Commission in Swansea. Being passionate about improving the quality of people’s lives that require support Karen was pleased to sit as a juror for Measuring The Mountains first citizen jury and contributing to the recommendations for Welsh Government last year. This led to her accepting a fantastic opportunity to co-chair the national Study Expert Reference Group for the official evaluation of the impact of the Social Services and Well-being Act Wales.
Jodi is a married mum to one child who has ASD. As well as being a parent carer, Jodi has been employed in domiciliary care, working with vulnerable adults aged 18+ for the last 3 years.
Prior to her current employment, Jodi was a serving soldier for 13 years. During her military career she was based in England, Northern Ireland and Germany. When Jodi left the armed forces she decided to move back to Swansea to provide stability for her then 2 year old son, while her husband continues to serve in the army. Settling into civilian life was a struggle, even more so when Jodi was trying to seek support for her then undiagnosed son. This was a big eye opener for her as she realised how disorganised and chaotic systems are to access help and support or even find out basic information.
Having experienced difficulty with ASD pathways, education and mental health services for her child, she is keen to help shape services to work more effectively for disabled children and their parent carers.
Ishbel is a single Parent Carer to her 6 year old son who was born with complex special needs. She has been his advocate since his birth, co-ordinating his health and well-being requirements with health, education and social services. Ishbel firmly believes that no-one will ever know your child as well as you do.
Ishbel would like to be able to share some of her experience and knowledge with parents who find themselves feeling daunted by what they have to deal with to ensure the best for their child. Her background is in business and during her time as a company Director, she regularly dealt with both the public and private sectors and hopes that some of this practical experience can be put to good use for the benefit of Swansea PCF and its members.
Parent to two adopted children, both with additional needs (ASD, ADHD, dyslexia, dyscalculia, speech disorder, life-threatening allergies). Chris spent 30 years in senior management positions in the public sector. He now spends most of his time with his family, sharing the parent carer responsibilities with his wife. Chris is also a Governor at his son’s primary school. He brings great organisation skill, and experience in facilitation, relationship management, health & safety, business continuity, people management, and finance. Chris is particularly interested in Additional Learning Needs, and ensuring children with needs (whatever they may be) are supported appropriately. Chris wants to help the Swansea Parent Carer Forum have a genuine voice and to work co-productively to improve services for young people.
The holder of an MSc in Autism and Related Conditions from Swansea University, Hazel is a race representative of the ABMU Health Stakeholder Reference group. Organiser of the first Festival of Autism Swansea in 2017, she has an Asperger’s husband, Asperger’s son, a daughter with permanent hearing impairment and her youngest son is on the autism assessment pathway.
Hazel is a multilingual autism specialist and an integral part of the senior management team at Chinese In Wales Association, a charitable organisation whose ethos is to deliver services that will make a positive impact on the lives of ethnic Chinese residents in Wales.
Recently, an extremely successful project of Hazel’s has been to produce the first English and Chinese Bilingual Autism booklet in the UK. This publication has provided professionals with an introductory understanding of the many cultural barriers, in order to more effectively assist them support their clients from Chinese ethnic minority. Additionally, it is proving to have a direct positive impact on Chinese families in the UK and many other countries, enabling them to better understand autism.
She has been actively involved in many community projects with roles that have included project manager promoting wellbeing, plus organiser of cultural events. For over 15 years, Hazel has served as an interpreter in the public services, supporting and advocating for families from the Chinese ethnic minority to overcome cultural and language barriers. She is often invited to deliver public talks, and is both a passionate and engaging autism speaker.
A dedicated leader of a range of workshops including advice on education and family matters, parent training, special needs activities and open art workshops, whether in small groups, or one to one, Hazel has a diverse range of skills, abilities and personal experience which give her a profound understanding of people with autistic conditions, and she is committed to working alongside them to make a positive impact.
With 15 years of IT and service delivery experience, a return to work was indefinitely postponed as her second child’s additional needs became apparent. Discovering her autistic son had a life expectancy 15 years less than her daughter for a non life limiting condition was a galvanising moment. She now focuses her energy and experience in pursuing equity for all children with additional needs. She has been an adult advisory board member for the Children’s Commissioner for the last 3 years and previously sat on the Equality and Inclusion Advisory Group for Swansea City Football Club. She is active within the autism community and a trustee for the peer lead Swansea Autism Movement and supports the parent carer Facebook group, Joining the Dots. She firmly believes that working co-productively with service providers is the most likely way that services will better meet the needs of disabled children and their families.
Jo’s background includes hairdressing and postal work (post woman). She is a mum of three teenage children, one of whom has complex additional needs that weren’t diagnosed until he became a teenager. Both of her other children have mental health difficulties due to their brother not having the correct support.
Jo is a qualified independent advocate and regularly participates in local authority and government consultations on legislation related to social services, ALN and anything that relates to Carers. She also helps run the Facebook group Joining the Dots. Jo is very passionate about helping to shape our services; education, CAMHS, social services and health so that everyone has their needs met in a way that helps them reach their full potential.