As we come to the end of the course, let’s reflect back on the components that you have learned over the last few weeks. You have reviewed the differences in health conditions, and the existence of health disparity among people with an intellectual disability, gained an appreciation of the communication challenges that can exist, engaged in practical techniques on how to overcome those challenges, developed techniques on how to create easy read material to support your engagement in health assessment with the person with an intellectual disability, explored the importance of embracing these elements to ensure reasonable adjustment to your clinical practise. So today, we are going to pull all these techniques together and see how they apply in practice.
I would now like to bring you through the process I used of engaging the person with an intellectual disability in health assessment. My own experience stretches over 25 years of working with people with an intellectual disability. And more recently, having engaged over 600 people of all levels of intellectual disability in a comprehensive health assessment suite for a large, longitudinal research study. I called the whole process a health fair. I wanted to get away from the negative connotations of someone being tested. So I did not refer to any of these assessments as tests. The first most important step is making the connection to begin building the relationship with the person with an intellectual disability.
Making that personal link before the day of the assessment builds confidence and trust. I first liaised directly with those who were taking part in the health assessment. Phoning them, thanking them for their agreement, and setting up the appointment. All the while emphasising their rights. That way I could offer them choice of time and date, to suit them as best as possible. In clinical practice it is good to ensure sufficient time is allocated, and at a time when the clinic is not overly busy, such as first appointment in the morning. Having clear information and a clear purpose for the visit– ensuring people understand why they are attending the appointment– supports their choice to engage and take part.
Therefore, having easy read material prepared about the appointment was essential. When the person confirmed they would take part, an appointment card was posted to them. Included in their pack was the easy read information booklet, and importantly, my contact details and photo on the appointment card. This provided the person with a link so they could follow up with more questions if needed. Having my picture on the appointment card also ensured people knew who they were visiting. On the day of the appointment preparedness is vital. In clinical practise, you will have your usual equipment ready for use if required. I had the equipment for the suite of health assessments laid out in a particular order.
This ensured smooth transition from one assessment to another– plus they were ready to demonstrate if required. Because I travelled to the sites where people were going to do the health assessment– which would have been a day service or a community group home– I ensured I was at the designated site with plenty of time to set up and be ready. Signage was important to let people know where to go. I prepared easy read direction signs and had them displayed at advantageous spots– on entry to the building, where a turn on a corridor had to be made, and just outside the room.
When the person arrived I would greet them warmly, thank them for coming, and invite them to come in and get settled. Engaging people in brief conversation was always useful in getting them settled in to relax, such as where they had travelled from, the weather, it was great that they were able to come, and so forth. I would get to the point of the visit, and begin explaining what was going to happen at the appointment, using the information booklet they would have had received. One of the most important pieces of equipment that I had with me was my small, portable stool.
This ensured that I could sit close enough to the person to be at their eye level, but not in their personal space. It also ensured that I was not towering over them when conducting the assessment or conversation. The first part of the process was to gain consent. I would ask them for their permission to take part, go through the consent form, and ask them to sign the form, again, an easy read consent form. This process also served as a rudimentary assessment to identify their dominant side, which was necessary to record for the grip strength assessment and the quantitative field ultrasound. On a number of occasions, supporting staff noted that the person did not write.
I would explain that this didn’t matter. I was offering them the choice. On a number of occasions the staff were proven wrong. The person would sign their name much to the surprise of the supporting staff. One lesson learned here is never assume. On completion of this formality, I would then move to the assessment. Using the easy read explanatory material for each of the assessments, I would explain the procedure to the person– showing them each of the steps on the explanatory card. So for example, for blood pressure I would ensure they were comfortable, work through each step until they were ready to start the monitor.
I would warn the person that the machine would get a bit tight– but it only lasted a few seconds, and if they watched the numbers get bigger, they would know when this was going to happen. As they watched the numbers I would use a distraction technique and ask them to take a deep breath. This usually distracted them enough from the feeling of tightness to get the assessment complete. Each health assessment had its own individual explanatory card– such as the blood pressure, the height, the weight measurement. It is important to remember that after each of the assessments, the person was reassured and encouraged.
It is also important to remember to use a system of process consent, so that you are verifying with the person at each stage that it is OK to continue. Some of the more challenging assessments included taking weight and height. Showing them the equipment you are going to use– and letting them feel it if they wished– helped allay some of the fears. Also, demonstrating what you will be doing provided the person with an idea of what was going to happen. People presented with fear of falling and anxiety with stepping onto the equipment. I use particular techniques for this. For measuring height, I set up the standometer at the wall with plenty of space around it.
I got the person to stand beside it with their back to the wall. I had a line drawing of two feet on the base of the standometer. Some pieces of equipment come with these in place. I then would ask the person to put their hands on mine, straight out in front of them. My hands would give them balance and support, but also prevent the person from grabbing at the equipment– which they were initially doing before I set up this technique. I would then ask them to step sideways onto the feet. They would mimic my actions. Finally, it is very important that everyone got the results. I developed an easy read results card– again with my contact details.
And if there were any of the results outside the normal parameters, I would advise them to see their doctor. There are challenges with getting people with an intellectual disability to engage in some health assessments. However, it is possible– with alternative and creative thinking, using the easy read material, encouragement, good communication techniques, and an inclusive approach– ensuring the person knows they are pivotal in the whole experience– contributes to success.