An Idea Whose Time Has Come

Have you ever known someone who was ahead of their time? Someone whose ideas seemed radical, unconventional and even impossible to their colleagues? I knew a man like this.

My father, Dr. H. Ellison Pusser, was a man with radical ideas about people with developmental and intellectual disabilities. At a time when people with these kinds of disabilities were living in developmental centers and large “habilitative communities” my dad believed they should be recognized as valued members of society with individual personalities, potential, desires and dreams. Even though it often put him at odds with administrators my dad talked about a different way to support people. He never called it anything special, to him it was just the truth.

When I was in middle school my siblings and I picked on each other a lot. Dad got especially angry if we used the word “retarded” disparagingly. True to form, he came up with a creative way to teach us a lesson. He made a rule that if we were caught saying “retarded” to make fun of someone we had to volunteer one hour at the large developmental center where he worked as a psychologist.

I was the first one to test him and racked up three hours of mandatory volunteer time in one weekend. When dad took me to the center, I was scared. The grounds were vast. The buildings were big, outdated and intimidating. Inside everything looked stark and sterile. It wasn’t comfortable or colorful and had the lingering odor of urine and antiseptic. Some people roamed the halls and some were confined to padded chairs or hospital beds.

My father checked me in at the front desk as a visitor and told the staff I was there to volunteer with “Mark”. Then he turned and went to his office. I was led to a large room with six hospital beds divided by curtains. A young black man was being helped into a wheelchair and the staff said, “Well this is Mark. You can tie his shoes and take him for a walk.” With that, I was left alone with Mark. I had no idea what to do so I introduced myself, tied his shoes, and asked him where he wanted to go. Mark smiled and pointed outside.

We walked around the campus and paved trails. Mark let me know where he wanted to go by pointing and saying, “There”. A few times we stopped to look at birds, trees, a pond and the mountains. I asked Mark questions and he answered with one or two words. Mark played little tricks on me. He locked his brakes when I wasn’t looking and when I struggled to push him or bent down to see what was wrong, Mark would laugh and laugh. On our walk he directed me to a little house and motioned for me to knock on the door. When a woman answered the door with a surprised look on her face and asked who we were I looked at Mark who was gleefully laughing. The time I spent with Mark went by quickly and soon it was time to go. Mark grabbed my hand and said, “Don’t leave me.” I felt a lump in my throat and promised to come back and visit him.

On the ride home, my dad asked me what I learned about Mark. I told him that Mark liked joking around and playing tricks on me. My dad said he thought a sense of humor was an indicator of real intelligence. He said Mark’s body had limitations caused by Cerebral Palsy but his mind and his spirit weren’t limited. I didn’t totally understand what my dad meant but I never forgot it. He helped me see Mark, not as a person with a disability but as a smart and funny guy who had a lot more going on than most people recognized.

I didn’t realize then that my father was influencing how I would think about my students when I taught school and the people I supported when I became an ISC. It was easy for me to talk to people and learn about them without preconceived ideas about their “capabilities”. I listened and tried to incorporate what was important to them into lesson plans, IEPs and support plans. If my dad were alive today I know he’d be right at home with Person Centered Practices and would be thrilled about the work going on in states and countries around the world. I would tell him that he is one of the reasons Person Centered Thinking makes so much sense to me.

We all know people like this. They laid the groundwork for concepts that are now widely accepted as best practice and are being shared with self advocates, families and supporters everywhere. I am grateful for them and feel privileged to have a small role in sharing Person Centered Practices, an idea whose time has finally come.

What About Bob?

Bob is new to Waiver services. His supporters don’t know him very well but they have to write a plan about him and develop goals he will work on for the next year. This kind of situation doesn’t always turn out so great for people like Bob. The plan might have inaccurate historical information and generic outcomes that are meant to be updated as soon as people get to know them better. Everyone means well but sometimes that information and the generic outcomes, well they stay in the plan… for the whole year and the year after that. Sometimes for several years until the person and their supporters are introduced to person centered tools that focus on what is important to and for the person, what works for them, what doesn’t work and what they wish could be different.

That is how Bob’s plan started out. People with good intentions made some decisions for Bob and wanted to use his outcomes to solve a problem. Bob has very sensitive skin and when he shaves he gets razor bumps. His skin was raw and irritated every day and his supporters suggested that he stop shaving and grow a beard. So Bob grew a beard, but that presented another problem. Bob didn’t really like trimming his beard and he didn’t want anyone else to trim it either. His beard kept growing and his supporters became concerned because Bob was looking a little disheveled with the scraggly beard. It made sense to Bob’s supporters to have an outcome to teach him to trim his beard and keep it looking nice.

Just one problem. No one asked Bob if he wanted to grow a beard in the first place and now he was going to have a year-long goal to learn to take care of it and keep it looking neat.

In August, Bob’s ISC attended a People Planning Together training and was introduced to a tool used to help people write a profile about themselves and identify information they want included in their support plan. Since she only got to meet Bob once before the planning meeting, she used the tool at her first visit to interview Bob and gather as much information from him as she could. During the meeting the ISC started thinking about Bob’s beard outcome. One of the things important to Bob was going to a local barber shop to get a shave and a haircut because he knows the barber and many of the customers. He went regularly, every 6 weeks. Initially the information seemed to be about to Bob’s relationships, but now she wondered if there could be another application. When the supporters shared an idea they had for an outcome about Bob’s finances and spending some of his money to keep it below a certain limit, a light bulb went off in the ISC’s head.

She asked Bob if he would like to go to barber every other week for a haircut and beard trim. He could afford it and he would see the folks at the barber shop more often. Bob’s eyes lit up when the ISC asked the question. His supporters noticed he seemed thrilled about the idea. They agreed to rewrite the outcome to focus on what was important to Bob (seeing his friends) and what really worked for him about keeping his beard neat and trimmed.

Even if you don’t have facial hair try putting yourself in Bob’s place and imagine what it would be like to have other people make this decision for you without your input. If you like to keep your face or legs baby-smooth and can spend the money on laser hair removal, how would you feel if other people decided you should be hairy? What if once they decided you should have all that hair they wanted you to work every day to keep it neatly groomed? I think you’d be really grateful to have someone in your life making sure the things that matter to you are driving your outcomes and goals. Bob certainly is!

When Walmart Isn’t Enough

Phil is a pretty amazing guy. In a time when people with intellectual disabilities have been “put away” he has managed to live on his own in a small studio apartment downtown for the past 45 years. The only support he’s needed over the past several years has been 8 hours a day of personal assistance. However you measure success, Phil’s life meets the standard.

But… of course there is a but. As Phil has gotten older he hasn’t been able to do all of the things he used to do without getting injured. Phil walks from his apartment to the neighborhood Walgreens alone several times a week just as he has for decades. A few months ago, he fell when he was making the trip and needed medical attention. As soon as he felt better, he made the trip and fell again. After that his doctor said he shouldn’t be walking around town alone and it was likely the next time he fell he would break his ankle or his hip.

The solution was obvious to Phil’s support staff. Since they already grocery shopped at Walmart, they encouraged him to buy whatever he needed when they were there and started taking him several times a week. Phil would go to Walmart with his staff, shop with them and when they left for the day he would walk to the Walgreens near his apartment. When he fell a third time and was injured it made everyone think that Phil couldn’t live alone anymore and needed 24 hour supervision to keep him safe. Finding a Supported Living or group home placement seemed like the appropriate next step to everyone, except Phil.

Everyone was worried about Phil’s safety because he was getting hurt when he fell. Phil’s ISC, Renee, didn’t have a better understanding of the situation than anyone else. However, Renee asked Phil and his Circle of Support to work through the Person Centered Tools 4+1 and Important to / Important for to find out if they were missing something. During the process they recognized there were a lot of things “everyone” knew. They also realized they had been trying things and making some assumptions that didn’t work.  For example they all believed Phil would stop walking to Walgreens and decrease his risk of injury from falling if they shopped at Walmart more frequently.

Phil actively participated in the process and was able to tell his staff and ISC that he had a personal reason for wanting to go to Walgreens. Because he wanted to keep it private he always had and would continue to go there to shop alone. Yes, he could buy anything he wanted when they were at Walmart but he didn’t want to. He preferred to wait until he could shop alone in a familiar store that felt comfortable to him. The risk of falling and injury was not important to him although it was important for him. Shopping in privacy was important to him but if no one had figured that out Phil was at risk for more than injury from falls. He was at risk for losing his life long independence and ability to live alone.

Because they were willing to meet and work through some new tools Phil and his staff made a Level One change that made everyone happy. Phil’s staff will drive him to Walgreens whenever he wants to go, but they will stay in the car and let him shop alone. They won’t make a big deal about it or try to get him to make his purchase elsewhere. Phil agreed that the plan they came up with could be documented in his ISP so it won’t be forgotten or lost if someone new supports him.

This is a simple story but the lessons within are complex. I am grateful that Phil and his ISC were willing to share it with a larger audience because now we all have a new opportunity. We can keep an open mind when trying to solve problems and consider using  person centered tools even when we are sure we know everything we need to know. The stakes couldn’t be higher for people like Phil.

Robbie’s Reputation

One of our ISCs, Renee, told me about a recent experience using Person Centered Tools that led to some surprising discoveries. It’s exactly the kind of story that needs to be shared. It has all the standard elements of the traditional problems and solutions we encounter when supporting other people- problematic behavior, angry, tired and frustrated staff, and one very unhappy person with a negative reputation at the center of it all.

Robbie lives in a group home with 7 other men. He likes to help in the kitchen. He likes to cook and enjoys being able to “hang out with his staff” in the process. Robbie has a habit that makes his participation in food preparation a little, well, unsanitary. Robbie’s habit was really getting in the way of something he enjoyed doing and on top of that he was getting a reputation for being “non-compliant, aggressive and destructive”.

When Robbie was in the kitchen and engaged in the habit, staff verbally identified the behavior as inappropriate and asked him to stop or leave the kitchen. Robbie responded by getting upset, yelling, threatening to or actually hitting someone, going to his room and tearing something up (ah yes, property destruction). The whole cycle required a lot of involvement from the staff on duty and this created another problem because there were only 2 people assigned to the early evening shift and the immediate task at hand was to prepare dinner for everyone. Robbie was unhappy, his supporting staff were unhappy, and everyone involved felt like they had tried everything but nothing worked.

Enter the ISC with some flip chart paper, sticky notes, markers and the idea that Person Centered Tools might be able to shed some light on the situation. The provider agency and Robbie’s staff were willing to complete the Working/Not Working and 4 + 1 tools with Renee guiding them through the process. What they found out surprised everyone and showed them why the tools are so valuable. They discovered that one staff person, Tina, never had problems with Robbie when they worked together in the kitchen. The other staff members admitted they always thought the reason Tina never had any problems was that she didn’t address Robbie’s habit, didn’t document his behavior and let him do whatever he wanted. But that wasn’t true at all. It turns out that Tina found a way to address the habit without upsetting Robbie!

Tina observed that when Robbie got called out on his habit, any housemates within earshot would giggle and then tease him about it. This really bothered Robbie… more than anyone realized. Tina guessed that how Robbie felt when his housemates teased him was important to finding a solution that worked for him. So she decided to try something different. Whenever Robbie engaged in the habit, she simply asked him to wash his hands. That’s it! No need for additional staff during the shift, no need for behavior supports, no restrictions to keep Robbie out of the kitchen. At first she had to ask Robbie to wash his hands 6 – 7 times when they were cooking but he never got upset and he was able to rejoin the activity immediately. After the first week Tina said she didn’t have to ask Robbie to wash his hands more than once. Cooking together was fun for both of them!

Any resentment the other staff felt towards Tina when they thought she wasn’t towing the line gave way to excitement. Each person agreed to start doing what was working for Tina and Robbie.  As an added bonus, each had a personal example of how Person Centered Tools can be used to make their jobs easier and Robbie’s life better. Renee is recording what they learned so the information won’t get lost when there are staff changes.

Robbie is the real winner here though. We understand something about what is important to him that really works. Instead of a seeing a bad reputation we can see Robbie; a sensitive guy who loves to cook and is fun to hang out with!

Getting Closer to Great

Missy has a pretty good life. She likes having her own home and likes the ladies she lives with. She is proud of her job at a local restaurant and loves earning a paycheck. She lives close enough to her mother that she can visit almost every weekend and go to their church where she sees other family members and friends. Missy’s life is good but she has a problem.

On Sunday evenings, Missy never wants to go back to her house. It’s been a problem for the past 7 years, ever since she moved out of her mom’s house. Starting after lunch on Sunday, Missy begs her mom to let her spend one more night. She usually cries and sometimes refuses to leave her bedroom. Her mother feels very guilty about making Missy go home but she knows Missy she has be at work early on Monday’s. Once Missy gets home, she argues with her housemates. She doesn’t want to do what her paid staff ask her to do to get ready for work the next day.

The people who support Missy feel like they have tried everything to address the issue. Years ago, when Missy argued with her housemates and didn’t do what staff asked, she wasn’t allowed to spend the night with her mom the following weekend. Later she had a behavior assessment and her staff were trained on guidelines that were meant to correct her undesirable behaviors and encourage her to be more compliant. Missy even started spending just Friday night with her mom to avoid the emotional departure on Sunday evenings. That dealt with part of the problem but it also meant Missy didn’t get to go to her church on Sunday and that made her unhappy. Enough time had passed that most people who support Missy forgot why she only spent Friday night at her mom’s and why they had to plan a busy day on Saturdays ad Sundays to keep Missy occupied.

But Missy didn’t forget. When her ISC was talking to her about things she wanted to do differently in the new ISP year Missy said what she always says, “I want to stay at my mom’s on Sunday night.”

Fortunately Missy’s ISC, Kelly, is a Good to Great Coach. Even though Kelly knew about the history of the Sunday night problem, she was thinking about the issue a little differently. She decided to ask Missy why she wanted to be at her mom’s on Mondays. The answer thrilled her and opened her eyes to the importance of being curious about other people. Missy said she wanted to stay with her mom on Mondays so she could watch her “soaps”. When she lived with her mom they always watched their favorite soap operas together. Because Missy works now and goes to a day program when she isn’t working, she hasn’t had access to daytime TV in almost a decade!

Once Kelly understood what Missy really wanted she was able make some great suggestions. Missy didn’t want to quit working on Mondays and the provider agency didn’t have the staff to let Missy staff home just to watch a TV show. But Missy has plenty of spending money and with Kelly’s help was able to request the purchase of a DVR and get staff to agree to help her set it up to record shows while she is working!

Now, Missy can spend the weekend with her mom and go home Sunday to get ready for work the next day without worrying she will miss her soaps! And her “good life” just got a little closer to great!

After You…

A very bright ISC who is steeping in Person Centered Practices wrote a response to Are You Person Centered? and posed a question. I’d like to discuss her question but I must preface by saying, “I am not an expert, nor do I play one on TV.” Don’t confuse me with someone who has all the right answers. I am not embarrassed to admit that I try many things that don’t work the first time or the second time or the third time. I am determined, however, to keep trying until I find something that works. One thing I do know is that solutions are almost never found without the input of others. So, please read along and give feedback about anything you have seen work in a similar situation.

The situation: A person is supported with Personal Assistance in the home. They are not able to tolerate services provided outside their home. Their 2 “staff” are their parents. The parents are currently employed full-time as the PA staff and receive full-time benefits from their employer. The person has been receiving many, many hours of service but due to some changes they will no longer be approved for the same amount of service. When trying to discuss how the person can be safely supported with fewer hours of service the family is having a hard time thinking about anything except their income and health benefits, which could be jeopardized if they lose full-time status.

The ISC asks, “How do you retrain families to be ‘person centered’.”

My first thought is this family is already VERY person centered. They just happen to be centered on the wrong person.

Ultimately, we can’t force anyone to be person centered. I think that would actually contradict the whole philosophy, but this situation would frustrate anyone! I think this is where we have to begin because our feelings of frustration, no mater how valid, have the potential to derail us before we get started. I think we have to be open to addressing the parents’ primary concerns in order to bring them into discussion about our primary concerns.

We could start by acknowledging we hear what they are saying and that we understand it is an important issue. This could happen in a discussion or by getting together to complete a Person Centered Tool such as Working /Not Working or Important To / Important For that addresses their status as paid caretakers of their child. We know that there are many things about them being the caretakers that also works for their child so while this exercise allows them to problem-solve their issue it is still about the person receiving services.  Introducing them to Person Centered tools by focusing on what they see as most important may also make it much easier to get them involved in using the same tools to look at their child’s issues in the same meeting.

We could also direct their specific concerns back to the appropriate party, their employer. We can assist by making sure the employer knows how important the issue is to the parents. We may even offer to brainstorm about how they can complete other work for the employer if the services they provide for their child no longer requires 2 full-time staff. It isn’t our job to help the parents maintain full-time employment but we aren’t stepping out-of-bounds if we share our creative ideas.

In this case, it may be that allowing the parents to focus on their issues first is the key to engaging them in discussion and problem solving focused on  their child. It’s kind of like holding the door open for someone. You both have the same goal, to go inside, even if you are doing something different once you get in. You both have the same immediate objective, to go through the door. You can’t go through at the same time so you may decide to hold the door open and let the person behind you go through first. You are still using the door to get inside but with an unplanned benefit. Your decision can make you both feel a little better.

The Little Things

Big events grab our attention. Dramatic results make us feel great. When good results are well publicized we feel rewarded for our hard work. Our progress, our success, is usually measured by these kinds of accomplishments.

Little things are important too. After-all it’s the little things, things that happen every day with no fanfare, that really add up to a good life.

About a month ago one of our ISCs got a phone call from a provider asking for an emergency Circle of Support meeting to address a health concern for a woman I will call “Dorothy”. The ISC agreed to meet with them the next morning. When she got to the meeting the provider said they needed to decide how to proceed with recommendations made by Dorothy’s Dentist. Dorothy had some teeth that would need root canals or they would have to be pulled.  With no family or friends supporting Dorothy the provider wanted the ISC to help make the decision and apply for any funding needed.

The ISC did something in the meeting that seems really little. Tiny even! She asked the provider what Dorothy wanted to do. The room was silent. No one had asked Dorothy what she thought about it. The ISC asked if Dorothy could come to the meeting and when she got there, the ISC explained as simply as she could the treatment options recommended by the Dentist.

After listening carefully and thinking a moment Dorothy said, “I want to keep my teeth.”

And there you have it. Person Centered Thinking in its simplest form- one question directed to the person affected most by the outcome. If something so little can make a big difference, in this case to Dorothy’s smile, are you willing to pause during your busy day to give it a try?

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