From a parent’s perspective when it comes to describing your children or child we all want to talk up the abilities of our ‘normal’ children.  We have this concept that we want them to come across as being very successful, as being capable, and we tend to look on the sunny side of everything.

This also tends to be the natural way we talk about our special children, our children with additional needs.  We tend to say,

“she has special needs but she can do this and I think she will be able to do such and such in the future.”

When you are talking about your child in the context of care, this is totally the wrong thing to say.

The Reality

The reality is that anybody can look after anybody on his or her good days. For people who have complex needs there are less good days and when you have bad days they are more extreme in terms of the outcomes of what happens and so the sensitivity of the situation is much much greater.

It’s absolutely beholden that you should always describe your child on a really bad day because there needs to be the capability and capacity to support them on these types of days.

What Happens if you Don’t

If a provider cannot support someone on a bad day, that person starts to learn behaviours.  These will then become more apparent as they have increasing leverage to actually be able to make a point to determine whatever it is the provider is doing that they are unhappy about.  The person gains and retains control of the situation.  As time goes on, the ability to meet that person’s needs deteriorates, their behaviours become more extreme and so on in a downward spiral until, more than likely, the placement breaks down.

From a funding point of view it is a false economy to say, “let’s put less rather than more support in.”  Not enough support will result in the person developing more complex behaviours so the threshold is raised and much more support than originally would have been necessary is now needed.

It is a particular false economy for people with more complex needs. For example, a provider may be supporting someone on a 1:1 package at say £2,300 a week which sounds like a lot of money but it’s not in the context that if you don’t support that person successfully at that level that the next thing is they could end up in a semi-secure environment which might be £3,500 a week.   It’s really what the default situation can actually be if you don’t get it right.  Not least because of the money, for the individual involved it is absolutely appalling.

Right at this moment in time there is more risk of this happening because a lot of Local Authorities are reverting to costing tools and accountants to make funding decisions, often against the better instincts of care managers.  I certainly had this experience the other day with one Local Authority where I was dealing with an accountant and those with knowledge of care and the individual that we were in conversation about, were sitting around the table, with no power over that meeting to dish the ridiculous conclusions that were being put forward by someone with no concept of learning disabilities.  It was just ludicrous the sorts of numbers they were talking about – there was just no way we or anyone else could provide a level of support that equated to the individual’s needs.

The irony of it is that in this particular instance somebody who we were supporting incredibly well at a relatively modest price in terms of their complexity as they have been with us for a long period of time, is now under threat of removal. Should this act of sheer stupidity and ignorance be successful, it will end up costing the Local Authority far more than they are spending with us today.  Complex behaviours resulting from a medical condition, will again surface, and this happy person will become just another victim of a policy that flies in the face of government policy.

So you have to describe your child on their worst day.  Unless you do, you are in danger of them being under-funded which will mean that their wellbeing will deteriorate,  if they are complex, their behaviours may become more extreme as they seek to express themselves in the only way that they know how.  In these circumstances, their placement is more likely to break down and before you know it, you are in a nightmare. So face it now rather than having to face ten times worse in the future.

Frankly it’s clearly in the interests of the Local Authority too, in the long term, but by this time you may have been branded the parent from hell.  You will need to be able to stand the heat, as there is unfortunately, no easy way out if you want to do the best for your son or daughter.