There are many compelling articles in the literature on the benefits of Positive Behaviour Support Planning (PBSP) for the one-in-four individuals with intellectual disability who engage in behaviours that challenge. Professionals who craft the PBS plans take satisfaction when they can see patterns emerging from ABC charts or behavioural incident forms that give them a clue as to the function of the ‘target’ behaviour. Better still for them, when functions are analysed and strategies such as environmental accommodations, skills teaching, direct interventions and reactive strategies are implemented. Data collection including, for example, Health of the Nation Scales (HoNos), Outcome Rating Scales (ORS), Challenging Behaviour Checklist (CBC) may indicate that the PBSP is actually working if it yields an evidence base that reflects low HoNos scores and high Periodic Service Review percentages. Better still if the incidence of the target behaviours is low and the Qualify of Life measures are high and improving. As my son would say, ‘Deadly buzz, Ma!’ when something is entertaining or exciting. While scintillating for the professionals, how would a robust PBSP look in the eyes of the individual it is intended to help? have autistic spectrum issues and intellectual disability. There are a lot of things you need to find out about me, so please take the time to get to know me and learn as much as you can. I do much better when I am treated with RESPECT. Please follow my lead when you are with me, and don’t expect me to do what you happen to want to do. It’s my life.
Treat my home and my things with consideration. I do not like it when people come in and move my things around. I would not do that in your home. I do not feel good when people are bossy towards me. I just can’t take it when people try to make me do things. It may be your job, but it’s my life.
I have a person-centred Plan that you can read and write in. It tells you about things I like to do and there is a lot about my past. Don’t forget that my life is still happening and I need you to help me enjoy it. There’s always a reason. Because I do not talk, I cannot tell you what’s wrong. Sometimes, I communicate through my acting out ‘behaviour’. For example, I learned a long time ago that if people came too close to me and I bit them, they wouldn’t do it again! The staff say I have ‘severe challenging behaviour’. How would they like it if they were me? Sometimes I behave in challenging ways, but I do I like it when people communicate well with me, showing warmth and respect. People do this by speaking slowly, in soft pleasant tones, with a smile, and using LÁMH and sometimes pictures. This way I know what’s going on and I don’t feel afraid or anxious.
The following is an attempt to draft a PBSP as it would be articulated if the person could formulate it and speak the words themselves. As with all PBSP, it is a work in progress, ever changing, adapting, and responding in a flexible way. It assumes that, after all, everyone has a right to be in their own community even if they do need extra help to make certain this happens. Naturally, services are about making sure that people are safe and doing the things they like to do. The Mansell Report (Department of Health 2007) states, ‘People whose behaviour challenges have the same needs as anyone else, in addition to special needs for help to overcome the problems their behaviour presents. They do not surrender their needs for personal relationships, for growth and development or for anything else because their behaviour presents a challenge to services. They have the same human and civil rights as anyone else.’
Molly is 31 years of age. She has autism and does not verbalise. Let us consider how Molly’s PBSP sounds, coming from her perspective. Firstly, we must remember we are employed to support Molly’s lifestyle and the manner she chooses to live. Molly tells us: I behave in a more challenging way when I am disappointed, anxious, hassled and stressed. I not have ‘challenging behaviour’. I hit, shout and self-injure but that is when my needs are unmet. To try and figure out why I do these weird things support people need to be like detectives trying to solve a mystery. Good information makes for good understanding and can help solve the question ‘Why is she doing this?’, ‘What is the function of this behaviour?’
The best thing you can do is to help me avoid behaving in a way that challenges. This is more important than trying to figure out what to do when I am challenging. I hardly ever do the behaviour when I’m out in the fresh air. I feel compelled to do it when I’m confined with a bunch of women I do not choose to be with. If I am with one person who likes me, supporting me positively, I am less likely to feel the need to behave in challenging ways. The things that usually trigger my difficult ways are:
— When I feel I have no control.
— When people ‘boss’ me and shout ‘No’, ‘Stop’, ‘You’re not getting that!’
— When I have pain in my head or tummy.
— When I’m bored and ignored.
— When staff come and go and I don’t know what’s happening next.
You know what? Even though people are paid to support me, sometimes they can be a trigger to me ‘acting out’. The next time there is an ‘incident’, please think about how you behaved—no one is perfect; what would you do differently next time? Ask for help if you think that I am more difficult for you than the other support people.
I like it when people communicate well with me showing warmth and respect. People do this by speaking slowly, in soft pleasant tones, with a smile, and using LÁMH and sometimes pictures. This way I know what’s going on and I don’t feel afraid or anxious.
Remember, the more choice and control I have over my life, the less likely I am to behave in difficult or challenging ways. When I am anxious, you can limit the options, but please continue to support me to make as many decisions as possible. If I cannot make a decision because it’s too complex, always go for the least restrictive option for me. Help me plan ahead so I can try and understand what’s happening then I can enjoy it! I’m not so good with changes. so help me manage my anxiety and learn better ways of coping with things I find difficult. You may have done study/course day in CPI (non-Violent Crisis Prevention Intervention) or something similar. When I ‘act out’, remember to:
— Stay calm (This helps me stay calm too).
— I gave early signs, by increasing my pacing, that things are not okay.
— I began losing control and went into overdrive.
— Escalation and damaging myself and property.
— Then I was spent and exhausted, started to calm down.
My behaviours do not occur ‘out of the blue’. They are typical for me. By staying calm I will feel as relaxed as possible and this may prevent things getting worse (or escalating). When I am ‘losing the cool’ I usually show early signs of this by pacing more, screeching, and putting my fingers in my ears. It’s better to help me at this point, because if I get more distressed I lose all control. You may feel worried, but try and acknowledge that all is not well for me. Don’t give out to me. I can’t help it. Check my temperature. I get a lot of ear aches and I may be in pain. Now is the time of benefit from your attention; compassion and ‘1 to 1’.
Give me something nice to drink.
Take the pressure off me and get rid of the audience. If that doesn’t work, I will ‘escalate’ and lose control as the build up of tension is too much for me. My behaviour worsens and I start throwing things. While I do not intend to hurt anyone, if someone’s in my way they might get injured. Support me anyway. Don’t panic. Think about where you are sitting or standing. At this point I need more personal space. Do not block me or stand in a way that looks threatening to me. Don’t ‘paint yourself into a corner’ or turn your back on me. Keep eye contact with me, but don’t make sudden movements. Don’t touch me just now, because I might think you are going to hurt me. When I am acting out your safety (and mine) are the most important.
Keep calm and don’t shout or over react. Stop talking, and get out of the way. I may be angry but it is important for me to ‘give out’ in this way. It’s not aimed at your so I hope that you do not take it personally.
You decide if you feel safe with me.
When I have these outbursts they are usually infrequent and they do not last very long. I start to regain control, but I am tired and emotional. I respond well when you acknowledge that ‘the storm has passed’ and you praise me specifically for calming down. Give me the space I need and try not to ‘judge’ or blame me. It takes me longer to recover than most people think and this is a very sensitive time for me, so ‘take it handy’. When you go through an incident of volatile behaviour expect to feel tired, upset, or confused. This is natural. Take care of yourself- Talk to your fellow support workers and do everything you can to get it out of your system. I know it’s difficult, particularly if I scared you, but try not to let your feelings affect the way you support me. Remember it’s not okay for you to ‘tell me off’ or ‘punish me’ me. Please don’t withdraw your attention from me or leave me out of things we like to do together. Try and learn from an incident and remember, there’s always a reason for my behaviour.
There may be some natural and logical consequences of my behaviour. For example, I may not have got what I wanted, or I may have broken my favourite CD. Now I won’t have it to listen to. Please, do your best to help me restore things back to normal as soon as possible. This will be best for all of us. Review my PBSP and see what we can do to:
— Improve my environment.
— Teach me new skills so I will be less reliant on ‘acting out’ behaviours.
— Make it intrinsically better for me when behaviours do not occur.
— Plan the best approach to me when I do not engage in behaviours that challenge.
Thank you, Molly