how can you make a difference?

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How can you make a difference? I would like to bring a Parent carers perspective to this TLAP Networking day around personalisation for Children, their families & Young People

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Post on 16-Jul-2015

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How can you make a difference?

I would like to bring a

Parent carer’s

perspective

to this TLAP

Networking day around

personalisation

for Children, their families

& Young People

The Dream….

The Dream continues….!

Ordinary happiness….

Aspirations high…

Autism was like a curtain coming down…

This always brought comfort..

Why is it always groundhog day for us?

This was our reality.

Shaun would return from school, strip off, wrap himself in

newspaper and rock for hours.

The school said “ We don’t get this behaviour here, but the

day is very full/structured, he has to unwind somewhere”

• Too often schools say it is not their job to ensure the skills

learned in school are successfully transferred to a pupil’s

home and community environment. They deliver to Ofsted

standards and the National targets given them.

• Then my question is “What is Education for if it is not

to enable every individual to achieve their greatest

potential?” If for my son that is to achieve a basic

quality of life, then his curriculum should deliver it

Back then..I felt that I had lost everything…

My identity had dramatically changed from that

of a vibrant, spontaneous young woman of 22,

to an empty shell, in a matter of 4yrs..

I felt that I had lost my family

my friends, my work life…

even the intimacy of my marriage.

That world out there..

the one that we had enjoyed in such a

care free manner before with you…

had suddenly become so intolerant!

And we didn’t know enough

or have the confidence

to make any decisions..

Then Services took over…

Assessment followed assessment…

Education, Health, Social Services and DLA..

Only required of us to list

in ‘detail’

every difficulty, Dysfunction and inadequacy our family had..

No one seemed to be interested in the

rare gems of happiness we had

when we achieved.. what would seem to most,

the simplest of tasks successfully!

Our lives were no longer ours!!

Sometimes parent carers appear

aggressive, never satisfied..!

Where has this misunderstanding

come from.. are we that different?

• We, like most of you.. Dreamt of footie on the Rec and picnics in the

park…

• We, like most of you .. Have worked tirelessly to ensure our children

get the best start in life..

• We, like most of you.. Have life long aspirations for our children..

But this alas is where the similarities end….

because for Parent carers..

without the right support from you

we cannot achieve the simplest of dreams

Information.. Information..

Information..!

We thought the answer lay in our ignorance.. so we searched high and

low for answers..

We cast our net as widely as we could.

Asking every professional we had contact with for more info..!

They kindly obliged.. to the point were our brains were numb.. unable to

take it all in..

Finding the nuggets of wisdom we needed amongst all the websites, books

& leaflets when you’re tired and totally with out focus became impossible

It wasn’t until I was introduced to

Person centred planning - PCP

that it all become clear..

At last we had been given a tool that changed our lives

It enabled us to build a wonderful picture of our situation

‘Yes it showed the crippling daily routines that had plagued

us for years, but it also enabled us to hold on to the rare

moments when things were going right and use that positive

approach in other areas of our life.

Crucially, the positive aspirations within the plan at last

helped us to separate the ‘negativity’ that was required of

me whilst filing in assessment forms - from the enduring

belief we had that he could achieve great things

We were able to ask for specific information and

resources from specific professionals to address the

barrier we’d identified to achieving each of our life outcomes

• We still struggled getting the school to recognise they were part of a team

alongside us and our social care support .

• We struggled to get them to acknowledge our PCP outcomes and see their role

in achieving them as an integrated part of the curriculum

• Annual Reviews seemed to us solely educational progress against national

targets and reviewing the statement status. Worlds apart

.. that we believe we changed our special school’s approach to annual reviews in

a positive direction back then – they had at last ‘bought into’ our life outcomes

It was by personally bringing into our

son’s review the person centred

element (by talking about the progress

we had made by using a DP for our

respite) and how we'd taken those

‘abstract curriculum skills' and

were ‘checking their transferability’

into his community setting..

(Giving feeding back to the school on

strengths & weaknesses by video, so

they could adjust IEP)

When considering a service we are looking for:

• A service that allows us to remain in control

• That listens and works towards our outcomes

• Engages with us as partners

• Flexible, Adaptable, Responsive

• Reduces the impact of caring (picks up the baton)

• Works in partnership with the other services in our lives

• Innovative – Assistive technology, resources for home

• Believe in my son’s future and his right to have a good life in

his local community

• Enabling- tapered approach* to reduce dependency

• Community connecting to facilitate relationship and belonging

Information we receive needs to be:

• Timely

• Relevant

• Small focused chunks

• Meaningful

• Practical tools

• Effective

• Empowering

• Accompanied by the resources and

training to use it effectively

What I’d like this network to achieve

• Families & YP need empowering through PCP to enable them to gain and remain in control of their family lives and begin to focus on what it is that they really want from the services around them

With a ‘Plan’ in place.. they are able to:

• Own their lives and take back responsibility for their futures

• Celebrate their strengths

• Identify the barriers and their areas of need

• Can choose the outcomes they want to work towards

Partnership working with the services around them

Because they can be specific about the outcome and therefore the

information and support they want from services:

• They are more focused about the type of support and resources they need and are more motivated to ‘buying into’ their own learning *

• Be clear enough to negotiate/ insist on practical and meaningful services that are addressing their barriers and achieving those outcomes

With tools and resources available to us..

Timely focused information when we

needed it..

With personalised coordinated

support from all the services around

us and organisations like you..

Driven by our EHC plan outcomes..

Services can share in the success!

From unreachable…

To a happy young adult..

From this isolation….

Independent in his own home