One tool that I had never heard of or ever used until I started my current job is a preference profile, also known as a One Page Profile. They are a great tool to have in your arsenal for anyone, but especially for someone with a disability. They can be used in many places such as at home, school, therapy, doctor offices, summer camps, and even hospitals!
Having a one-page profile ready to whip out has become a thing for me, regardless of where we are. It can explain why my son isn’t answering direct questions, or that sudden, loud noises can put him in a seizure. It lets people know he needs extra time to process information.
The screaming phlebotomist
I spent all of March and some of April 2021 in the hospital with my son. He had had 2 emergency surgeries and sleep for everyone was in short supply. It was bad enough that every morning at 4 am, the lab techs would come around to do his daily blood draws. Most of the techs were pretty quiet, especially when they saw me sleeping in the corner. One tech though, I will never forget. I think he did blood draws 2-3 times. The first thing he did upon entering the room every time was flip on all the lights. UGH!
Then the yelling started; I mean that literally.
“C-BEAR! C-BEAR! I AM HERE TO DRAW YOUR BLOOD! C-BEAR, CAN YOU HEAR ME? I AM HERE TO DRAW YOUR BLOOD. C-BEAR, I NEED YOU TO WAKE UP!”
After listening to this continue for 2-3 minutes, I was really tempted to roll over and yell back at him, “He’s disabled, not deaf!!” I knew C-Bear heard him, who couldn’t?? But I knew he was playing possum and hoping that the tech would just go away. And really, why can’t you sleep through a blood draw if you so choose?!
Every couple of days, the head nurse would stop by and see how things were going and make sure the nurses were taking care of us. I mentioned the yelling tech to her and she was very apologetic. She said, if I wanted, she would post a sign above C-Bear’s bed that said, “Disabled, not deaf” for me.
I laughed and said that it wasn’t necessary but she was serious with her offer. It got me thinking about creating a One Page Profile for C-Bear for the next time that we ended up in the hospital.
What is a One Page Profile?
It is a living document that gives a bite-sized glimpse into the most important things to know about someone. This makes it a great tool to have to use when training a new caregiver, when your loved one starts school, and even to take to the doctor’s office, therapy or hospital. I have added it to my support worker handbook and update it every 3-6 months.
With a One Page Profile, someone who does not know my son can tell at a glance how to best interact with and support him. What things are important to him and what his likes and dislikes are.
What do you put into a One Page Profile?
I usually start with my son’s strengths, and what people like and admire about him. We want this document to be as person-centered as possible. Only positive, strength-based statements should be in here.
You can put in:
What people like and admire about me
So many times, when we are talking with doctors or therapists, we are only talking about deficits, what’s ‘wrong’ with our loved one. Why not flip the conversation and start with strengths? Doctors especially need this reminder.
I am usually traveling with a caregiver when taking my son to doctor appointments. One of the reasons I love doing this is because when we get to the ‘deficit’ part of the conversation, I can ask the caregiver to take my son and go back out to the waiting room. I know my son understands a lot more than he lets on and does he always need to be exposed to people highlighting the things he can’t do or what is ‘wrong’ with him? That will mess with anyone’s head!
What is important to me
This can be so many things, depending upon the individual. Family is usually always on this list, favorite toys or activities, favorite games or TV shows, whatever is important to your family member.
What is important for me
This sounds the same as above but for some people, it can be totally different. I am a diabetic. Having dessert is important to me but exercising portion control is important for me. Taking my medications on time every day is important for me.
If your loved one elopes, having all doors that lead to an outside area locked at all times could be pretty important for them too.
How to best support me
This is where you get to spell out all the ways someone could best support your loved one. Do they understand better when information is broken down into small pieces? Should yes/no questions be used? Do you need to be within arms reach of your loved one at all times? Do they need to be not yelled at during their 4 am blood draw?
What’s good for me
This area can be handled in a couple of different ways. It could be used to describe what the perfect day would look like. It could be an addition to the How to best support me section. What’s good for me is being around people that respect my boundaries. What’s good for me is being supported by happy people, who take me out in my community, and help me with my exercises. What works for me is you remaining calm and supportive in all situations.
What’s not good for me
I know for some people, being around loud voices and noises can be very disturbing. My son can go into a seizure if he is not warned about a sudden loud noise. Spell out all those things that can trigger meltdowns, PTSD, panic, and anxiety attacks.
“Never give up on what you really want to do. The person with big dreams is more powerful than one with all the facts.” ~ H. Jackson Brown, Jr.
What my hopes, dreams and goals are
Once again, we need to celebrate our loved ones and their dreams for their world. Their hopes, dreams, and goals could revolve around their family if they are young or the family they want to have if they are an adult.
Maybe they want to go to college and study graphic design or chemical engineering. Maybe they just want to learn how to doggy-paddle in the pool this summer, maybe they want to grow up and be Captain America. Whatever they dream of, or whatever your dreams for them are, write them down. It’s something to work towards and totally awesome when they can cross something off their list. It’s also a fun way to see how their dreams change as they get older!
How to find a One Page Profile
You can simply Google ‘printable one-page profile templates free’ or ‘one-page profile templates’.
Special Needs Jungle has a free template that you can use.
When creating these documents, be sure to personalize them with what is important to you or your loved one. Use their favorite color, a picture of their favorite Disney character, whatever it is. Heck, let them help you decorate it up!
Medical One Page Profile
While you can use your regular preference profile to take to doctor visits, sometimes it might be beneficial to have it tailored towards a medical setting. A doctor may not need to know what your child’s hopes, dreams, and goals are, but they would probably like to know if and how your child expresses pain if they can point to what hurts, or if they have limited communication abilities.
Some people like their doctors and therapists to use short sentences, ask only yes/no questions or have all questions directed to their parent/guardian. Maybe they do better if they have their service animal or favorite stuffed animal with them. Sometimes, getting stickers for bravery goes a long way. Whatever a medical professional would need to know to make the visit go better would be a great thing to put in a medical profile.
The Oregon Health Sciences University has some great templates that you can customize.
Mental Health One Page Profile
Just as someone with a physical or intellectual disability can benefit from having a one-page profile for their personal and for their medical home, so can someone with a mental health diagnosis.
In my line of work, I not only work with people with intellectual/developmental disabilities, but I also work with people with addictions and mental health diagnoses. So many times, it would have been beneficial if I had seen someone’s mental health one-page profile at or before, our first meeting.
I have triggered someone’s PTSD, unknowingly, because I didn’t know upfront what their triggers were. Think about how much better my meeting would have gone if I had known how to not trigger them! After such an event, it’s hard to establish trust so you can give them the support they came to you for.
Here are a couple of links to some mental health one page profile templates:
I hope that after reading this post, you will at least look into one-page profiles a little more and possibly try them out. Honestly, I felt a little silly the first couple of times I handed a doctor or nurse my son’s preference profile but if nothing else, at least it made them realize, for a brief second, that this is just not ‘that kid with CFC syndrome’ or ‘the non-verbal kid in room 12’. When they glance at that profile, they can get a glimpse of the whole person they are serving.
Our loved ones are more than their diagnosis, more than their deficits and disabilities. They have a life outside therapy rooms, clinics, and hospitals. Their achievements and abilities need to be celebrated and valued even as we try to help them find ways to be the best they can be.
I am off my soapbox now. I believe I am going to pull up my son’s one-page profiles and update them while I am thinking about it as I have a new caregiver starting next week. If you have any questions, comments, or are having trouble creating any kind of one-page profile, drop me a comment below and I would be happy to help!