I am the proud mum of 6 wonderful children.
We live in a hectic house full of dogs, washing piled high in the TV room waiting to be ironed, and lots of people and kids coming and going. We live at the bottom of a cul-de sac and ours is the car that is regularly reversing up and down the street taking kids to the station or dropping them off at their various activities. The children are aged between 15 and 23 – we have 7 birthdays end of March/April so that is an expensive time for the Clarke family.
We have had our life enriched by the experience of meeting many amazing people involved in the world of disability. This includes other parents of disabled children, disabled adults who have inspired us, organisations that have supported us, practitioners who made a difference, plus a trail of many women who we have employed through Direct Payments over the years.
Ever since our daughter Nadia came out of special care I knew that I was going to need extra support on this marathon of a journey with the never ending finishing line. Our first “extra pair of hands” was when Nadia was going through her breathing difficulties. I was struggling to cope with our 1 year old son and at the same time giving the medical attention our 3 month old daughter needed.
That was the beginning of our life with Personal Assistants. Since then we have had some interesting times, as well as some ups and downs around employing staff. However, having Direct Payments has changed not only Nadia’s life but each one of us in the family. It has meant the Nadia has had a life, and so have we. My kids have been able to do things they chose to do, and I have been able to work and even manage meals out with friends.
This blog is about our family life – the trials, the tribulations and the joys of having Direct Payments, how we try to make sense of the word “personalisation” and what that really means to us, and our amazing disabled, young adult daughter.
A bit about my work
I have worked in the field of disability, participation and families for 19 years. During that time I co-founded 1Voice-Communicating Together which bring families with young people together who use electronic communication aids. www.1voice.info
I am the founder of one of the first parent forums in Calderdale- Parent and Carers- and developed the organisation over many years to be a leading example of parent participation. I left in 2012 and went freelance to support the work of other parent led forums around the country through training and facilitating groups.
I have recently set up Visits Unlimited, a social enterprise working in the tourism industry to ensure that our families have enjoyable and memorable days out. https://www.facebook.com/VisitsUnlimited?ref=hl
I am now delighted to be the co-founder with Deb Aspland of a new and exciting organisation called Bringing Us Together, which aims to support the movement of families who believe in their child’s rights to independence, control and citizenship. www.bringingustogether.org.uk
I would like to thank my husband Andy for being so tolerant and patient with me and my wacky ways and ideas.
I am so glad that Rosie has introduced us and I can tell instantly we are going to get along – although our numbers are reversed – one child, 4 dogs, 1 cat, 6 hens and 1 wheelchair! I look forward to reading your blog x
good morning Emma! hope all is well and you have had a great summer! How has it been?
Katie, can we use an extract from your havoc in halifax blog for a report we’re writing about support for PB users? It captures things so well. We are Community Glue in Oxfordshire (g**gle us for email).
that would be great. do send me the report when you finish it! I love your name lol!
Hi Katie, here’s a link to our report http://www.communityglue.org.uk/downloads/personal_budgets_co-production_web_version.pdf we’ve quoted you on page 17. Thanks again for your help. Jon