An outsider's view of the powerful impact of parent carer participation
Wednesday December 5, 2018
Janet joined us at the 2018 National Event for
parent carer forums. This
year's event marks 10 years of parent carer participation. In this
blog, Janet shares what the 10 years mean to her - as someone who
isn't a parent of a disabled child.
The 2018 National Conference of Parent Carer Forums
shared the date with America's Thanksgiving Day. So it got me
thinking about what was I thankful for.
As I thought about this while driving to the
conference, my first reaction was to give thanks for my own health,
and that of my children, who are fortunate not to have any
disabilities. But as I drove home after an inspirational day -
having gained an outsider's view of the world of SEND - I realised
I was wrong.
Had I asked the conference-goers what they were
grateful for, I think most parents and carers would have said a big
thank you for their children with special educational needs and
disabilities, who have brightened the lives of their families.
Their love, devotion and pride in them certainly shone bright.
Overcoming challenges
Having spent a day hearing about the challenges
facing these families, it made me realise that what I should
actually be thankful for is that my life has been
comparatively easy. I haven't had to fight for a fair education for
my kids, or for the best healthcare treatments for their needs. I
haven't had to attend multiple appointments with multiple agencies;
sacrifice my career or worry too much about what happens to
my children when they leave education. Nor have I had to fret over
what becomes of them when I'm old or no longer here.
These were just some of the real and pressing
issues shared by Forum members. It made me wonder how on
earth do you begin to cope with caring for a child or young person
with a life limiting disability? How do you manage in the
school holidays? What happens if your youngster has been forced
out, or excluded from school? Where do you find the patience and
tolerance to deal with people who don't understand, or the
emotional resilience required to be a parent or carer? Finally, how
do you manage the complexities of what it means to raise a child or
young person with SEND and navigate between the various services
they require?
Concerns of parents and carers
The scale of the 'mountain' parents and carers must
conquer was revealed during question time. Professionals from
across health and education bravely answered a stream of questions
from the audience. Common concerns were SEND funding; the
accountability of schools, particularly around exclusions;
tribunals; regional inconsistencies in joint working and a
multiplicity of Clinical Commissioning Groups; culture change;
delays in diagnosing ASD; short-breaks provision, and Local
Authority inspections.
Ten years of transformation
It's ten years since the National Network of Parent
Carer Forums (NNPCF) gained funding and started its explosive
growth, supported all the way by Contact, which co-hosted the
conference.
In an opening address by sponsor Seashell
Trust, CEO Jolanta McCall looked back at the incredible ten
year journey of the Forums and the future challenges of "putting
good legislation into practice".
93,412 members and growing
Today, the NNPCF has an active and dynamic
membership that's fast approaching 100,000 national members. The
2014 Children and Families Act is transforming SEND provision and
has embedded parent carer forums in legislation. Ten years of
government funding for the NNPCF has made a huge difference.
Thankfully, the Department for Education has confirmed its
continued financial support.
Partnership with government
The respect across government for the NNPCF
and Contact is evidenced by the fact that both the Department for
Education and NHS England were conference partners.
Recognising the importance of this strategic
partnership, two ministers spoke at the conference. Nadhim Zahawi
MP, Parliamentary Under Secretary of State for Children and
Families delivered the keynote speech, in which he promised that
the government will "continue to listen". Caroline Dineage
MP, Minister of State for Care addressed the audience via video
link. She was full of praise for the Forums and acknowledged how
vital "expert user engagement" is in commissioning services.
There are many examples of joint working with
government departments and professionals across health, education
and social care. This includes the recent role of Forums in the
joint Ofsted and CQC SEND inspections. Much more needs to be done,
however, to build these alliances on a national, regional and local
level. In particular, progress on co-production is slow in some
regions, with a few Forums reporting difficulties in engaging with
Clinical Commissioning Groups.
WOW! What a difference
The fantastic impact of the individual forums in
improving the lives children and young people with SEND was
celebrated by sharing some WOW moments of outstanding best
practice. The conference WOW board, where these initiatives
were captured on post it notes, provided a visual demonstration
of the amazing results achieved by forum members. These WOW
initiatives are being collated by the Forum and Contact, who will
share them with government and publish them on their websites.
Amanda Batten, CEO of Contact, summed up the
amazing impact of participation by quoting a parent carer from
Sutton Parents' Forum, who said: "Something quite magical happens
when people sit down together, talk, listen and work things out.
Barriers come down, fear and ignorance flies out the window, and
respect, understanding and goodwill takes its place.
That magic was certainly alive and kicking in the
conference hall.
Reasons to be truly thankful
So just how did families cope before they had this
valuable and well informed support network? It must have been a
confusing and lonely experience for parents and carers, who had
pockets of support from the early parent carer forum pioneers, but
not on the scale available today.
Although the job of raising a child with SEND still
remains exceptionally difficult, the task has been made much easier
through the shared fellowship and expertise within the NNPCCF and
the support of its partners. That is definitely something to be
hugely grateful for - not just on Thanksgiving Day, but every
day!
I'd like to add a note of personal thanks for being
allowed a privileged peek into the lives of parents and carers of
children and young people with SEND. You have my deep respect for
fighting the good fight with such good humour, resilience and
professionalism.
Janet Kilpatrick
Written by Contact
at 16:42