It's International Down's Syndrome Awareness Day today. Our post isn't actually about this, but it offers some great tips for parents of children with all disabilities. However, I didn't want the day to pass without mention, so I'm giving a shout-out to the blogs of two of our columnists who have children with Down's. Hayley Goleniowska at DownsSideUp and Nancy Gedge at Diary of a Not so Ordinary Boy are both supporting #WDSD. Nancy's post is from her son, Sam, who has DS.
Here on SNJ, today's guest post is from Tess Philbert, a woman passionate about helping parents, carers and young people themselves fully participate in making decisions about their SEN & disability provision. Tess, who also works for IASS, recently got in touch and kindly offered to write about her work making participation person-centred.
Take it away, Tess...
Participation in Decision Making
Hi everyone! I am Tess and this will be my first time as a guest writer in this lovely Jungle! I’m a mum of two very tall young people …lol…a son aged 14 and a daughter aged none! Currently, I work as a SENDIASS (Special Educational Needs and Disability Information Advice and Support Service) officer …YES it’s a mouthful!
Prior to this I worked in a special school for 10 years until I obtained my degree in SEN and inclusive education…I love special education and the more I learn about the processes by which provision is accessed, the more I am intrigued!
What has prompted me to write this particular article is my current role as a SENDIASS officer, working alongside parents/carers to access appropriate and meaningful provision for their children and young people. One of the things that has struck me is how alienated from the decision-making process many parents/carers are. This marginalisation of their invaluable perspective and experience of their child may come from the professionals in the school, LA or both, depending on individual experiences. Not only is it wrong on a human and moral level, BUT not giving parents access to important information and explicit participation is a breach of statutory practice and sometimes in SEN law!
Must, Should and Have Regard to
For those who don’t already know and to remind those that do, The SEND Code of Practice (CoP) 2015 is a statutory document that gets it guidance from The Children and Families Act (C&FA) 2014 and Special Educational Needs Regulations (SEND Regs) 2014/15. I can’t say this enough…please, please, please download these documents and take your time in familiarising yourselves the sections which are relevant to your individual circumstances. Knowledge is powerful!
Three of the most important words you will find in the CoP 2015 are MUST, SHOULD AND HAVE REGARD TO.
MUST: Explains the duties that schools and LAs HAVE to perform in accordance with the C&FA (2014) and SEND Regs (2014).
SHOULD: Highlights the best practice that schools and LAs should be exercising when meeting needs and supporting parents. If they are not exercising best practice, the reasons for this must be evidenced.
REGARD: Finally, Have Regard To, denotes the serious consideration and respect both schools and LAs should afford to parents and children.
Principles of the Children & Families Act
One of the guiding principles for the 2014 reforms to SEND law was to ensure that parents are involved when important decisions are being made about their children’s educational well-being. The reforms mean that parents/carers now have the RIGHT be involved in decisions that affect their children. SECTION 19 PRINCIPLE states ‘local authorities MUST have REGARD to the views, wishes and feelings of the child, his/her parent or the young person’.
Therefore, under SECTION 32 LAs MUST:
‘Provide parents/carers of CYP who have SEND with information and advice on matters relating to SEND. The information SHOULD enable parents/carers and CYP to participate in the decision making process and support them in achieving the best possible outcomes for the CYP at the centre.
The person-centred approach is a philosophy which places your child’s needs at the heart of the decision making process. Therefore, parent/carer/young person participation and active engagement are an integral part of this approach. It is also the ethos upon which Education and Health Care Plans (EHCP) were built.
I understand and appreciate the difficulties that may hinder parents/carers from engaging with schools, LAs or health professionals. Among other issues, some may have language barriers, learning difficulties, or confidence/self-esteem issues that prevent them from understanding what questions to ask or stating what they feel their child needs. However, wherever possible, I would encourage you all to S.E.E;
- Seek confidential, impartial advice from your local SENDIASS (on your LAs Local Offer site).
- Establish some form of positive communication with schools, LA, health professionals and endeavour to work collaboratively.
- Empower yourself with as much knowledge and understanding around your son or daughter needs as possible.
Finally, I couldn’t possibly leave you without mentioning the invaluable support available to you through your local SENDIASS! Many of our parents/carers come to us when they are at breaking point. For many reasons the communication between themselves and school/LA has completely broken down or never existed.
They feel tired, stressed, unheard and powerless. Generally, parents who come to SENDIASS for support, have not been made aware of their rights with regard to participating in making decisions about their child’s welfare…or they have been given the wrong information altogether. Your Local SENDIASS should not be an advocacy service, but one of empowerment! The service should provide confidential (unless there are safeguarding issues) and impartial advice in the following areas:
- Local policy and practice.
- The local Offer
- Personalisation and personal budgets
- Education law on SEND, health and social care (in relation to EHCP), through staff who are independently trained in SEN law.
- Supporting parents/carers/CYP to understand information relating to their individual challenges in respect of SEND provision.
- Provision of advice and support through casework, parent/carer support groups, local SEND youth groups and training events.
Just one last thing before I go …promise. A poem I found …enjoy.
‘Listen to us, WE are the experts...’.
Doctors, therapists, social workers, with their degrees and expertise,
they may make you feel as though your role in any discussion is merely to nod your head and sign off on their suggestions.
But you’re an expert too.
They may know everything about most children or the average child,
but you know everything about the child in question.
You have an advanced degree in raising your child…
a textbook worth of knowledge about his or her specific individual needs, habits, progress and struggles.
Because every child is different and difference determines treatment,
Yours is the most important voice in any discussion.
There’s no specialist more than you’.
Find your local SEND IAS Service here
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