Feature Issue on Person-Centered Positive Supports and People with Intellectual and Developmental Disabilities

John lives with a brain injury, physical disabilities, a developmental disability, and a treatment-resistant mood disorder. The mood disorder has worsened with age and includes rapid cycling swings from major depression to mania. In this interview he talks about his life, his conditions, and the support he needs to do well. Joining in the interview are some current staff (Ann and Bill) and one of his guardians (Susan).

John has lived many places. He lived with Susan and her family as part of an in-home foster care program as an adult. He lived with JoAnn’s family as a youth growing up also through foster care. John relies on JoAnn and Susan for advice and support to make life decisions. As John aged, his disorder started to include higher highs. He went to the hospital frequently. His community provider did not know how to support him to stay safe. Twice he ended up in short-term locked residential placements. It was difficult for JoAnn and Susan to help John when he was in crisis due to the way many providers interpreted HIPAA laws. With John’s permission, Susan and JoAnn became limited co-guardians for John’s medical and services to support him better.

When John moved to his current provider his symptoms were not better. However, staff approaches and the environment were different. John has done well in his new home. This interview provides some of the key events in his life and how staff responses to his mental health condition make a difference.

Susan: Before we talk about strategies that have or haven’t worked for you when it comes to your mental health, let’s talk a little bit about you. Tell me about your life. Where were you born?

John: I live in Minnesota, the Twin Cities. I was in the hospital after an accident when my Grandma and Grandpa came and took me home. I stayed with Grandma and Grandpa for a long time.

Susan: So that happened when you were pretty young. You were in a bad car accident. You lost your family and had serious injuries. In fact, when you went to the hospital, they did not think you would walk or talk ever again. Do you remember being told that?

John: Yes.

Susan: So “Grandma” and “Grandpa” were your new foster parents. They were the people you went to live with after the accident.

John: Yes. I lived near Lake Nokomis and they had nine other kids plus me.

Susan: What I remember you telling me about Grandma is that she really expected you to do everything you could for yourself. I think that’s been really helpful for you. And even though Grandma and Grandpa passed away, you have stayed close to the family. They are your family for holidays and when important things come up. Especially JoAnn and Dale.

John: Yes.

Susan: Where else have you lived?

John: I lived in Clara Doerr-Lindley Hall.

Susan: What was it like there?

John: There were lots of people. They gave me food to eat and had a bed for me in my own room. Sometimes I would do things I shouldn’t do. I went to church there, St. Stevens. I took religion class. I had friends there.

Susan: Your religion is really important to you, isn’t it?

John: Yes. I am a greeter. I can meet new friends at church. They have coffee and donuts there.

Ann: John dresses up nice. He sits through the mass and can really belt out the hymns. Two of the priests visited him when he was in the nursing home this year.

Susan: John, when you are feeling down that means your depression is back. What does that look like?

John: Not talking much.

Ann: Not really talking at all for the first day and then by the third day of the cycle maybe three words.

John: Staying in bed. Not wanting to do things.

Susan: What do you do during this time? What works?

Ann: We offer him something to drink regularly through the day. And try to have him to get up by the time everyone gets home in the afternoon. When I go in I remind him of what happens if he doesn’t drink or go to the bathroom, how his body will feel.

Bill: I am more like his buddy. I go in and sing a song or tell a joke. We are all different with John. Sometimes the way I do things works, but not always. Sometimes he needs someone else. I might go ask Ann to check on him if she’s here.

Ann: By afternoon he will get out of bed, but he doesn’t talk. He moves so slowly.

Susan: John, sometimes you get a little too “up.” What does that feel like when you are too up?

John: I talk kind of loud. I like to go out.

Ann: He really runs, runs, runs. We get him out as much as possible. He likes to cook and help around the house. There is not very much full mania right now. If it happens it lasts only a few hours. You can tell because he might be cursing or sweating. We try not to have staff talk very much. Or we swap out the staff to work better with him. 

Susan: Sounds like one strategy you are using is to see which staff has the right energy and approach for John at the time. John, we’ve tried and keep trying a lot of medications to help you with this, but not a lot has changed for you. You still have lots of ups and downs that affect your days. You are really about the same as when you lived in the other place. But you didn’t do as well there. You were arguing with staff and leaving the house a lot. Sometimes it was even dangerous. What’s different now?

John: I don’t have a bus outside. Staff go with me places when I want to go somewhere. Or sometimes I have to wait.

Susan: What helps you when you have to wait?

John: Talking to me or offering quiet time. But sometimes staff talks too much. One is a jabber-jaws. [He puts his hand up to imitate a mouth opening and closing]

Susan: What do you do?

John: I go to my room or say, “Pipe down jabber jaws!”

Susan: Well, hopefully working on trying to talk to staff respectfully and asking them to respect you.

John: Yeah. But sometimes that doesn’t work and I just go to my room.

Bill: I read the paper to him and he likes that. Or we go to church. John will go to church or Fleet Farm almost any day.

Ann: It really helps to have a plan for the day. On up days we have John do “quiet time” until about 11 a.m. He can color or journal or listen to the radio.

Susan: So, John, what I see is that the staff here really pay attention to you and try to help you figure out what is going to help you do your best and feel your best. They really see these shifts as symptoms and not “problem behavior.” So they respond by helping you in ways that work for you. That’s really different than in the past where people expected you to figure that out for yourself. I’ve been really impressed with this staff and how much they have been able to help you. I think this has been a good move. What do you think?

John: Yeah, I think so too.