First of all, thank you for visiting our website. The fact that you are here probably means that you also care for a child or young person with some type of disability or special educational needs and, like most of the parents and carers I come into contact with, you will probably have had one or two battles to contend with over the years!
I expect there are also times when you feel frustrated and perish the thought of yet another crisis (there's always another one around the corner) and having to make that dreaded phone call (or 10, let alone 2!) to find the right person to speak to about getting some kind of support in place so your family can lead as 'normal' a life as possible.....and, 6 months down the line, when all the assessments are done and if you're lucky, you might get 4 hours sitting service per month (even if it doesn't really meet your child's needs or yours for that matter). But you'll take it because a) you're exhausted b) that's all you were offered and c) it's better than nothing!
This may sound all too familiar but I'm here to tell you that the tide of change is upon us; there is some light at the end of the tunnel. Parents and carers now work alongside professionals within the local authority to make sure that kind of experience becomes a thing of the past.
You may be asking when and and how did this all come about? In November 2008, Wiltshire Council invited parents and carers to a coffee morning at the Corn Exchange in Devizes to find out more about a new programme that had been recently launched, called Aiming High for Disabled Children. I was one of about 50 other parents and carers who turned up that day - quite an encouraging turn out I thought.
We were told that the Aiming High for Disabled Children (AHDC) Programme was developed by Government following a national review of services it undertook, the results of which highlighted that in many areas, disabled children and young people were not being provided with services that met their needs or those of their families. So AHDC set out firm intentions to bring about a transformation in services.
To support AHDC, Government agreed to provide extra money to each local authority to help them develop better services but the news got even better! In order to achieve a successful transformation, Government set expectations on local authorities to work in partnership with parents and carers, to ensure the needs of disabled children and young people remained at the heart of future planning. This element of the AHDC programme is called 'parent participation' and a separate grant fund was available to enable parents and carers to set up their own group that was willing to work alongside the council and other agencies responsible for providing services.
That was almost 3 years ago! There were just 2 of us back then who applied for the grant. Now we have a wider membership of over 400 members, a strong committee of 8 and an enthusiastic team of 16 parent representatives. Parent Representatives meet with professionals on a regular basis, working at a very high level and are included in the decision making process.
The 'voice' of parents and carers has already significantly influenced the way some services are being delivered in Wiltshire; increased short breaks, improving the transition experience, better information, to name just a few. Indeed we feel very proud that the model of participation we use here in Wiltshire is highly regarded nationally and was chosen by the Department for Education as a case study for the recently published Green Paper consultation on Disabilities and Special Educational needs (March 2011).
Whilst there is a lot of work still to be done, we feel very confident and optimistic about the future. Wiltshire Council is very committed to working with parents and carers and continues to fund our organisation despite these challenging financial times. Furthermore, we are absolutely thrilled that the progress made through the AHDC programme (which ended on the 31st March 2011) has ensured that disabled children and their families continue to remain very high on the local and national agenda.
We hope you feel encouraged by the positive changes that are happening to the way in which services and support are provided to our children and families. This change may not be happening quick enough for some of us; there are some 'quick wins' but it takes time to achieve a complete transformation of all services as this means convincing people to change the way they work and interact together - a shift in culture. This can be slow, painfully slow at times but like anything that's worth having, it's worth waiting for and working hard for it.
Please take the time to browse through the information on our website. I hope you'll find this helpful and easy to access. If there's anything we can do to make this experience better for you, please let us know. If you want to get up to speed relatively quickly and easily on what we've been working on and achieved to date, I highly recommend leafing through our newsletters.
If you would like to register with us as a parent carer member (it's free!) please either call us on 01672 569300 or email us with your contact information. By registering with us, you will automatically receive future newsletters and updates and invitations to events and information days we hold across Wiltshire.
We look forward to hearing from you soon.
Maurizia Quarta