I: A to Z of Family Rights and Lives

So we move forward with our A to Z of Family Rights and Lives.  Today, we are looking at the letter I.

Thanks to Sharon Smith, Liz Wilson, Sharon Hulme, Helen Seth, Susan Kellett, Jenny Carter, Kerry Fox, Jacqui Byland and Sarah Clayton for their input and suggestions.

BUT II is for

IEP:  No longer a legal requirement although some schools will continue producing them.  Now officially IEP stands for Individual Education Plan but we prefer the definition one parent gave – I Expect Progress.

Ignorance:  Something we face daily, or so it sometimes feels.

  • that look of disapproval from parents of non-disabled kids in the school yard
  • the “tut, tut” of people in the supermarket as your child has a mega meltdown in the middle of a busy Saturday shop
  • a patronising comment from a passer-by “oh doesn’t she have lovely hair?”
  • negative attitude from teenage kids who no longer want to be friends with your child
  • the “I do understand how you feel” comment from a practitioner with no clue

It winds us up and each and every of us encounters ignorance, prejudice and discrimination in one way or another on a regular basis.  Our role is to bring our kids up to feel proud, to be able to answer back, and to know that it is the attitudes that are the problem not themselves.

Inclusion:  It feels increasingly difficult to give our children the tools to lead purposeful and inclusive lives.   Local Authority cuts, new school funding, and the SEN reforms don’t promise us this.   We know that inclusion is the only way forward for our young people in order to feel they are true citizens and belong in their local communities.  A diverse and equal world is one that strengthens society.

Independence:  Something that we all want for our kids. Independence is the ability to decide and choose what a person wants, where to live and how, what to do, and how to set about doing it.  For many of our young people with complex needs it can feel like a myth we all chase when independence also relies on good support and finite resources.

Indifference – Death by:   People with a learning disability are more likely to have additional health problems than people without a learning disability. This includes higher rates of problems with weight, mental health and respiration.

On top of this, people with a learning disability tend to have poorer health outcomes due to them not receiving equal healthcare, knowing their rights, and not visiting their GP.   It is shocking to know that people with a learning disability often die younger and sometimes die in situations where their death could have been prevented if they had received better quality healthcare.  Death by Indifference was a report published by Mencap in 2007 was about institutionalised discrimination within the NHS and highlighted these issues.

Information:  Our minds are desperate to know more about our own children and how best to support them.  Sometimes it feels like information overload and sometimes we don’t know what bits of information are actually relevant.

Parents are the best source of information.  Parents who have been there before and got the T Shirt are a godsend.  Learning and networking from one another, sharing resources and advice on Facebook, attending workshops or conferences for families  – other parents are a great way to help you find the information but also to make you realise you are not alone.   Googling into the depths of the dark nights can be daunting and frightening – there really are some “worst case scenario” stories out there.  We all need to be aware of them, because they are real and they do happen however, it can be devastating to come across these in the middle of the night when you are alone and exhausted.

You can, of course, now try searching on your new Council’s Local Offer.

Innocence:   Something that goes down the drain as we begin to uncover the grisly truth about the oppression of disabled people.

Innovation:   Parents of disabled children we are constantly finding solutions, setting up forums, groups, charities & social enterprises.  From our experiences, we have new ideas of best practice and ways of working.  We always look for what is happening out there for our kids and if it isn’t there – we tend to set it up!

Inspirational: our young people are the role models of the future. They can inspire their younger peers.  The parents, carers, grandparents and those that care, lead the way together on our journeys by climbing mountains, shouting from roof tops, breaking down barrier after barrier, campaigning for rights and justice, setting up charities and organisations, and juggling very complicated lives!  We can inspire others and remember, together we are better!

Institutionalised:  There are still more than 2,000 people stuck indefinitely in Assessment and Treatment centres, commonly miles away from their family and community, who often receive neither assessment nor treatment while resident.

As long as Institutions exist, ending up in one is a fear that haunts most disabled people throughout their lives. Institutional life denies a person, real citizenship and participation in the community. It also takes away freedom, choice and control. For those disabled people who have already experienced institutional living and have tasted that reality know too well, that it is a large price to pay.

Integrity:  It sounds difficult but it is just having moral principles and being honest – it really shouldn’t be that difficult, should it?   We want each other, organisations, professionals and services to have integrity so we can all feel proud knowing we are doing the right thing.  So often this is lost when people do things for their own self-interest or the wrong reasons.  As the saying goes, “Do it for the Cause, not the Applause.”

Interference:   There are often, far too many people involved in our life, causing us more trouble than benefit.  Practitioner who share an office but have different understandings of policy, Local Authorities with policies that don’t always comply with legislation and, it goes without saying, practitioners who don’t speak to each other.

Irrelevant crap:  You can’t do everything.  Don’t think you can.  You absolutely can’t do everything if you are surrounded by chaos because you just don’t know where to start.  We have paperwork to file, paperwork to look at to see if we need it, appointments to remember, calls to follow up, new challenges to face and new things to learn.  If you are anything like the majority of parents, you will have notes scribbled on envelopes, appointment letters scattered around the home and a pile of old reports and appointment letters sat on your dining table.

Have a fresh start – sort out your headspace, your paperwork, your meetings, and all your stuff – recycle and get rid!

We don’t have the space for things that aren’t important to us.  We don’t have the time or the energy, so take the time to sort that pile of paperwork, transfer appointments into a diary, write a list of those calls to follow up and write a list of those new phrases, terms and acronyms you need to look up.

Sign up to our newsletter as over the next few weeks we will be posting some tips on “how to get organised”.

Isolation:  Being in a place or a situation that is separate from others.  We can feel like this as parents when we are trying to cope and muddle through on our own.  It feels that no-one understands in the world outside disability and how could they really?  What we don’t want is for our own youngsters to feel isolated.  Over the years we have heard so many parents tell us that their child does not get invited to birthday parties, friend’s houses, even family get-togethers.   We try to be strong emotionally and keep our feelings to ourselves.

I want great care:  There is a website that allows parents to review their local health provision and also to read reviews from others.  A really useful site, even more useful if we can all take ten minutes to review a few provisions for other families to read.

We will be looking at the letter J next week, we will also be sharing a new project with you so don’t forget to sign up to our blog posts to be kept updated.  Just add your email to the box at the top right hand side of the page.


BuT Site Admin

Debs is one of the co-founders and Directors of Bringing Us Together. She is mum to three child with a variety of SEND and has a great husband.

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