Today is International Day of Persons with Disabilities. Each year there is a different focus to the day, and this year the focus is Disability-Inclusive Sustainable Development Goals.
Many Local Authorities (and companies) use what they call a RAG (Red Amber Green) rating for their projects, so we thought it may be fun to RAG rate some of the common practices and suggest some development goals for practitioners. The goals are sustainable and, of course, disability inclusive.
1. Stop getting hung up on how things are currently done. One of the worst phrases a parent can hear is, "We've always done it this way." To be disability-inclusive, that "way" must work for everyone, not just the practitioner. So instead of thinking outside the box, throw the box away.
2. Stop ticking boxes. So often, we receive information or get asked a question that is of no relevance to us, but ticks a box for a practitioner. A prime example of this is a letter I received the other day from one of my children's schools. It was, amusingly, an attendance RAG rating letter that explained that my child was below the accepted percentage for their attendance this school year. It then explained, in a serious tone, how this could lead to meetings with the school and the possibility of the involvement of the Education Welfare Officer. Then in the final paragraph, it said how the school understood that this absence was due to my child having chicken pox and therefore they would just be monitoring their attendance for now. My friends and I think this wins the award for, "the most pointless letter ever". However, the school obviously had to tick a box and say, "We contacted the parent." Just a small sprinkling of common sense should stop pointless tick box exercises, they waste everyone's time and in no way work towards a better relationship.
3. Stop thinking that our lives begin and end when we walk in/out of your doors. Our child is part of a family, not only do we have to consider their needs and attend their appointments, we also have a house to run, possibly a job, other children and a life! Yes, that's right, we have a life outside of our appointment with you. As important as our child is to us, we do have to think about how we fit everything else in to our day so don't threaten us with, "If you don't do this activity every day we will stop the service" or say, "It only takes half an hour", as if we have all the time in the world to carry out additional activities.
4. Stop offering services which are hard to access. This can be due to location, time, inaccessible information, narrow inclusion criteria or just a service no one even hears about. One of the least accessible services is CAMHS. I am now of the opinion that CAMHS actually stands for Can't Access Mental Health Services because I know personally and from many conversations on social media that it is the one service that no one seems to access with ease or much benefit. One of my children was referred to them in February and here we are in December still waiting for an initial appointment. We did have a letter from them in October asking me to let them know what my child's IQ was before they could progress, (can you guess how many naughty words I said?) but seriously, ten months on, my child is not receiving any of the support they need, their anxiety levels are higher than ever and I am just a mum, I am not qualified in any aspect of mental health and neither should I have to be. Why are LA's, CCGs, PCTs or the NHS offering services which are so difficult to access? Who benefits? It's certainly not our children.
5. Leave Egos at the door. Our child's needs are not about you. Our anger is not always about you. Our frustration is not always about you. We don't really care how many letters you have after your name, we don't really care how long you have been doing this job for and we don't really care if you have worked with other children with the same need or disability. We only care about our child and the help they need and if and how you can provide it. Please leave your Ego at the door. If you need your ego stroking or require flattery to feel confident or proud, then look elsewhere. If we want to have a disability-inclusive, sustainable service then we're sorry but there is no space for egos.
AMBER: Parents want you to GET READY to do this
1. Tell us not to give up. You know as well as we do that the system is not always fit for purpose. You know that the tick boxes, inaccessible services and egos exist. Sometimes we just need a bit of encouragement to say "keep going". Get ready to do that.
2. Offer a single point of contact. Having one place to go for information, advice and support is invaluable. The Local Offer is supposed to help with this but as we said on Monday, that's still a work in progress. However, if we can get it right, it will make life so much easier for everyone - so get ready. As a practitioner, can you imagine how much time would be freed up if the Local Offer actually did what it said on the tin?
3. Know how to teach children with SEN. We all know there are people out there who make that extra effort to understand our children as individuals, but sadly we also know there many who fit solely into the above Red category. The new Children and Families Act says every teacher needs to be a teacher of children with SEN - so get ready. Not only will we feel happier, you will find it easier and our child will flourish. Give it a go if you haven't already. It may help immensely if you get ready for this (number 3) by also actioning number 4.
4. Consider parents as colleagues, professionals and experts in their own right. The majority of parents could talk all day about the negative experiences they've had with practitioners who would rather stick needles in their eyes than admit that parents may actually have a clue. However, there are so many practitioners who appreciate what a parent can bring to the party, so take a leaf out of their book and get ready to work with us. You may be slightly shocked at the results.
5. Remember that labels are for filing, not for children. We've talked about labelling children and parents before on SNJ. Labels don't help. They are based on the medical model of disability and we now work with the social model of disability. Labels tell you nothing, except what a child's diagnosis is. Our children are children and no two are alike.
GREEN: Parents want you to START doing this (all the time, not just occasionally)
1. Start listening to our children and empowering them to contribute. As the saying goes "not being able to speak does not mean they have nothing to say". My children astound me frequently with their contributions, often we presume we know what they want or enjoy. Don't assume if a child scribbles on a piece of paper that they enjoy drawing, it may they are scribbling to tell you that they want the paper moving away. Listen to what they are trying to tell you.
2. Start a proper communication strategy. Don't assume we know, don't assume someone else will have told us and don't assume that we need to know absolutely everything all at once. Ensure that you not only have a communication strategy but that it is actually doing the job it is supposed to do and that everyone knows about it.
3. Start understanding how different sensory issues can affect different children. They are all different, what is bliss for one child may be absolute torture for another. Find out about the child, not their label.
4. Start a commitment to the spirit and principles of the SEN reforms. Changing legislation is a huge challenge but changing hearts and minds is even bigger. If you commit to the principles of the Children and Families Act, if you work in a person centred spirit, you will benefit just as much as our children will.
5. Start explaining properly. What, why, when, who and where? Don't just refer us to another practitioner or department, tell us who you are referring us to, why you are referring us to them, when you will do the referral and how long to expect before we receive contact, where this practitioner or department is based and what your goal is? Whenever you work with a family, think to yourself have I explained this properly? A friend of mine once told me she was a crayons and paper type of girl and needed things explaining in a way that even her 5 year old would understand.
Overwhelmed at the thought? Where do you start?
Start off with focusing on being trustworthy. If you can get this right, then the rest will be much easier to achieve.
- If you say you are going to do something, do it.
- If you can't do it, tell us.
- If it is taking longer than you would have hoped, tell us.
- Don't tell us what you think we want to hear.
- If you don't know the answer, just tell us.
- Don't sit in our home and agree with us, then sit in a meeting and keep quiet.
- Listen to understand, not to reply
- Apologise if you get it wrong
- Use simple language
Practitioners, we want to hear from you
What do you want parents to stop, get ready and start doing? We are human (despite any rumours you may have heard to the contrary) and we get it wrong sometimes so what do we do now that you wish we didn't, what do you want us to start thinking about doing and what do you want us to start doing now.
I had a teacher who explained to me that she had stopped writing in contact books as nothing was being fed back so she wasn't sure if it was being read. She wanted parents to start acknowledging that they had read her notes, even with only a tick.
So come on, this is your chance to let us know what you want from parents. We all understand that for a relationship to work well, it has to work for both parties. Comment below or email firstname.lastname@example.org if you would prefer not to comment publicly. I really would love to hear from you.