HPCI – Herts Parent Carer Involvement is the Parent Carer Forum for Hertfordshire. We began in 2010 following the Aiming High Programme for Disabled Children.
What is a Parent Carer Forum?
Parent Carer Forums exist across England in almost all local authority areas and over 63,000 parent carers belong to Parent Carer Forums.
Parent Carer Forums are made up of parent carers with children and young people who have all types of SEND (Special Educational Needs and Disabilities) from the local area. HPCI covers all of Hertfordshire.
You can read more about these forums, how they work and the national picture for parent carer participation by going to http://www.cafamily.org.uk/what-we-do/parent-carer-participation/what-is-a-parent-carer-forum/
There is also a National Network of Parent Carer Forums (NNPCF) whose membership is made up of all Parent Carer Forums in England. The role of the NNPCF is to ensure strategic parent carer participation at a national level. NNPCF reps, who are all parent carers, work with a broad range of organisations which include: Department of Education, Department of Health, Council for Disabled Children, British Academy of Childhood Disability, IPSEA and Acheivement for All.
To find out more go to www.nnpcf.org.uk
How is HPCI set up?
HPCI is a Community Interest Company, which is a not for profit organisation – you can read our constitution by clicking here
We have a wide network of parent carers, a smaller group of representative parent carers (who work directly with the local authority) and also a steering group (currently 7 parents) who oversee the running of HPCI. Our steering group is called the PCIB (Parent Carer Involvement Board).
HPCI is also a member of the Eastern Region of Parent Carer Forums. The Eastern Region covers 11 forums from Peterborough to Central Bedfordshire, Bedford Borough, Luton, Herts, Cambridge, Suffolk, Norfolk, Southend through Essex to Thurrock. Two representatives from each forum meet 3 times a year and look at local and national developments.
HPCI receives funding from the Department of Education and Herts County Council. We do not have any premises. All board members and parent reps are based from home.
The Board meets 8 to 10 times a year and all Board members are unpaid volunteers.
All Board members have a wide range of views and experiences, across different different special needs, disabilities and age of children.
Board Member Profiles
My name is Leise . I live in Hitchin (North Herts) and have two children, one with Autism, learning difficulties and ADHD, who attends a Herts SLD special school, and one with ADHD, autism and Tourette’s Syndrome who attends a mainstream school. Since it began 13 years ago, I have been involved in running Angels Support Group, a parent-led support group for families in North Herts and Stevenage who have children with ASD or ADHD. Through Angels I have met so many parents who inspire me with the way they tackle the challenges they face so positively, and I am really passionate about getting the parents’ perspective across to service providers. By working together we can ensure the services truly meet the needs of disabled children and their families. I was one of the founding members of Herts Parent Carer Involvement and am currently Chair.
I live in Welwyn Garden City. Our eldest son had autism and learning difficulties and attended Hertfordshire special schools and our younger son has Dyslexia and is mainstream education. Before becoming a parent carer I had a career in teaching and then in Human Resources for a large UK business. Due to the lack of suitable childcare my career had to go and I volunteered for autism support groups in Herts for 10 years. When our autistic son became terminally ill we became familiar with wheelchairs, hoists, medication, tube feeding etc and so I feel I have personal experience of very diverse types of need. Over the years I started to understand that, whatever the disability, the issues faced by families have many similarities. When Parent Carer Forums were set up under the Aiming High programme I felt they could really make a difference and I have been involved with HPCI since it began. I am currently the Coordinator and my main focus is helping to keep HPCI going!
My name is Sylvia and I live in East Herts. I am a full time mum to our two children, both of whom attend Mainstream school. Before I had my children I worked for 15 years, qualifying as a Chartered Management Accountant. I have first-hand knowledge of the challenges and constraints of Government funding, and I am a firm believer in value for money. I am delighted to have the opportunity to work as part of the Herts Parent Carers. By helping to strengthen parent carer involvement across the County, together we can make sure that money is spent effectively and that services provided by the Local Authority and Health best meet the needs of disabled children and their families.
I am a mother of three children all of whom have an undiagnosed genetic condition. My oldest two children are only mildly affected (hypermobility) but for my youngest being a medical mystery brings with it a lot of added extras. He is a wheelchair user with a host of medical issues. He is also very cute and has perfect comic timing. All three children go to mainstream school. My oldest is just about to transfer into secondary school and also has ASD, dyspraxia and ADHD.
In my spare (!) time I work as an independent advisor to various charities, mainly concerning issues around medically complex children, children with multiple disabilities and children with undiagnosed conditions both within mainstream education and the NHS. I am also on the advisory committee for SWAN UK (Syndromes Without a Name) (http://wundiagnosed.org.uk). I recently became an NHS Certified Health and Care Change Agent based on the work I am doing trying to improve services for undiagnosed children. I am also a school governor.
I write for several websites, including being a columnist at Special Needs Jungle (http://www.specialneedsjungle.com) and I also have my own website and blog, Just Bring the Chocolate (http://www.justbringthe chocolate.com), which has been nominated for various awards.
My oldest daughter was diagnosed with Down’s Syndrome at birth. Born with serious heart problems, her family, including two younger siblings, have endured many surgeries and appointments with her. These keep her well but drain ordinary family life at times.. Mainstream schooling was challenging; two appeals and a surprise ASD diagnosis secured necessary school support at age 9. Now at Herts special school, she is making much happier progress.
For information and fun I set up a family support group in 2002 while workwise, I downsized. I managed to hang on to a part time job at Watford Mencap for 10 years, as Training Manager. I became increasingly passionate about improving services for children and young people – by supporting the amazing expert parents behind them to access information and have their say. I became a licenced trainer for NHS and Council for Disabled Children and through Essential Learning & Information I deliver cross-disability workshops for parent carers.
Through these work projects and my new role as Development Associate at Up on Downs I keep in touch with parent experience on the ground. This informs my contribution to Herts Parent Carer Involvement Board. As Vice Chair I have represented parents on SEND Reform Steering Group, Workforce Development and Early Support. I also deliver parent perspective presentations at practitioner training events and HPCI workshops for parent carers and support groups. Currently on the Local Offer Steering Group, I also support knowledge sharing through my Essential Lisa Thomas Facebook page (https://www.facebook.com/Essential.lisathomas) where I write ‘All about me and my EHCP’ – a step by step account of my family’s journey to the new Education, Health and Care Plan.
We live in Welwyn. Our youngest, who is now almost 18, was born at 28 weeks, after a difficult pregnancy; we spent his first two years in and out of hospital. At the age of 4 he was diagnosed with septo-optic dysplasia, a hormonal disorder, autism, learning difficulties, some physical difficulties and visual impairment. He is also charming and very happy! Managing my son’s needs, including many hospital appointments, led me to give up a busy career in sales & marketing to become a full time parent carer. I ran a local SANDS (Stillbirth & Neonatal Death) support group for parents for ten years, and have been a school governor since 2002, at two Hertfordshire schools. We also have a 20 year old daughter (his 3rd parent!) currently at university.
I have lived in St Albans for 18 years. I have two sons, aged 19 & 18. The youngest was born with Down’s Syndrome and is also partially sighted. Both my sons went to the same mainstream Primary & Secondary schools in St Albans. The oldest is now at university and the youngest is about to start a 2 year course at Chickenshed Theatre having completed a 2 year Landmark course at Oaklands College. I am a trained Independent supporter and work for myself in a range of different roles including teaching Orienteering to teachers and training school pupils for their Duke of Edinburgh’s Bronze award expedition. Before I had children I was Deputy Head of Estates at Hackney Community College in east London.