Angee & Shelie
I believe I had been working for insights for about a year when I was approached by a CM asking me to consider taking on “a challenge case”. I really did not put much thought into the decision and just said yes. I began visiting Angee at her home routinely and I am embarrassed to say that for several years, I did not advocate for much change. The home was rather intimidating, including Ang. She had been a resident of a state developmental center from the age of 18 to about 28. She was one of the last individuals who was transitioned out of this specific center and into a supported living home. She was well-known, notorious- the topic of many stories involving violent episodes of aggression that would last for hours. Staff would have to trade off in shifts to intervene.
When I joined her team, she lived alone in a 2 bedroom home with 2 staff on day shift, 2 staff on evening shift and maybe even 2 staff on night shift. Many of the staff had worked with Ang for years. There were specific techniques in place. Ang spent most of her time in her bedroom, alone. When her bedroom door opened, both staff would stand up and prepare for a possible outburst of physical aggression. It always reminded me of when a judge enters a court room, and everyone just knows to stand. When I was there visiting, I would do the same just because that is what everyone else was doing. Sometimes she would come out of her bedroom and hit staff, sometimes she came out simply to just get something to drink. However, she would have an episode of aggression at least once a day, every day. Sometimes her episodes of aggression were several times a day, sometimes mild, sometimes intense, but she would absolutely, always have an episode of aggression every day.
She had a lot of rules in place per her mother. For example, if she left the house, she could only participate in one activity that day. So, if she had a doctor’s appointment, that was her one and only activity. A large van had to stay parked at her house and only the two staff on duty could ride with her. Ang sat in the very back as far away from staff as she could. Any place that was load or crowded, usually was not an option. As far as behavior management goes, the behavior plan in place when I started was the plan that I continued with. I just added more proactive techniques that now looking back seem like more rules. Her mother served as her Heath Care Rep (acted more like a guardian) and felt that all these techniques were necessary, so I complied, everyone did. It is embarrassing to admit that. The control continued until there was a sentinel incident involving her mother and a dispute regarding medication management, specifically the use of Lithium. Ang had been on this medication for years and was suffering from Kidney damage. She had routine labs and during one psychiatric review, her psychiatrist was concerned with the results of her lab work and wanted to decrease her Lithium. Ang’s mother refused. I remember lots of discussion regarding quantity vs. quality of life. The psychiatrist decided to put in her notice to terminate services, with the explanation that this medication would continue to damage her kidneys and she could become toxic at any point. Ang had been working with another psychiatric provider when I first started working for her. Shortly after, this psychiatrist also gave notice for similar reasons. There were also conflicts going on with other medical concerns and physicians. There was a significant pattern of concern. Angee’s team decided to contact Adult Protective Services for advice. We were all asked to write statements and then later asked to attend court. It all seemed to happen quickly. I remember waiting in the lobby at court with other team members. Adult Protective Services stated that all our statements had been reviewed and mine would be sufficient for a protective order to be granted. Angee’s mother was present for this court hearing. Sitting on the opposite side of this mother and presenting my statement was one of the worse feelings in the world. I understood her mother’s fear and her rationale for some of her choices, but I just did not agree. I wanted to respect her mother, but I had to remind myself that I was providing services for Angee.
The protective order was granted. At that point I remember thinking that the hard part was over. However, the situation got much worse before it got better. A very lengthy, painful process of medication changes followed. Thankfully, her previous psychiatrist agreed to return. During this time, there were multiple incident reports, head injuries, broken limbs, trips to the emergency room, visits from the police, etc. It was so unbelievably challenging. I was trying to scramble to make changes to her behavior plan, while working closely with the nurse and psychiatrist on multiple medication changes. The struggle just kept continuing and continuing. Several staff started to quit, team members changed, administrative staff and APS began the process of a referral for an ESN placement, etc. Staff that I thought would not give up on her started to doubt we had done the right thing. I just continued to feel more and more helpless and alone. I could not ever forget the feeling of sitting across from her mom reading my statement that was pretty much stating – we can do a better job than you. I did not take that day in court lightly and I did not want to give up on Ang. I could see the potential in her. I felt like screaming because I could not understand how everyone else could not see it. I also could not get past the fact that Ang had no say in all the years of suffering through medication management and the toll it took on her body, her hair, her bones, her teeth, etc. Fortunately, I had developed a positive relationship with APS. I was not giving up on Ang. I repeatedly asked that they reconsider their decision to pursue a referral to an ESN home, sharing with them information about the newer, safer medications the psychiatrist was trying, requesting that another local residential provider be considered rather than sending Ang far away from the town she had known for many years, etc. Finally, during a lengthy heart felt conversation, they agreed to stop the referral and let her current psychiatrist and team continue. A medication combination finally gave Ang some relief.
Ang was still having behaviors at least once a day, but they were manageable. I felt like we were in a place where we could try to figure out a better plan to decrease the frequency of her episodes and begin to remove the limitations. Several staff absolutely insisted that she would never go a day without a behavior. My response to that was Ang is going to prove you wrong, just wait. We started with a small, motivating reward. One day, it finally worked. Everyone was shocked, but excited. Then quickly back to the same routine of behaviors. Later, another behavior free day, then another. So, over the years we have added to her reward system, tried to scale back the frequency (mostly due to finances), increased the frequency again, changed it up some, etc. She has had a reward system for some time now that includes routine trips to the gas station, punch cards, sticker charts, personalized scratch off tickets, etc. She has several opportunities to earn frequent rewards. As she continued to show improvement, we decided to try a monthly reward. We agreed on a Pizza and Pink Champagne Party for 30+ days of positive behavior. After some time, she did it!! She went an entire month behavior free so staff, Ang, and I celebrated with a bottle of pink sparkling grape juice and pizza. We toasted to Angee’s success. We decided to add a small pink goody box that is covered in positive affirmations. We filled it with a few small items that she enjoys: key chains, hair ties, etc. Nothing fancy, just a few sweet little surprises from all of us. The party was short, but she enjoyed it. We have continued with this additional monthly reward system. The longest she has gone has been 8 months. We have had 8 parties in a row!!! That is a big improvement from struggling just to make it one day without having a behavior. Sometimes Ang changes it up and request fast food, but we always have the pink sparkling grape juice, and we always toast to her success. She calls it her Pink Beer. The newer, younger staff love these moments and find them rewarding as well. It is a positive experience for both Ang and for her staff. Ang still has her moments. She always will and that is fine. It is part of who she is. She is currently working on her second reward party in a row for the month of July. Her last party was special. We always try to invite all her team members, but with busy schedules, it is a challenge. Her last reward date fell around the time of her quarterly meeting, so we combined it with her meeting. The toast was extra exciting, and it was nice for her entire team members to celebrate Ang. Again, the party was short because that is what works for her, but the look on her face during the toast will be burnt into my memory forever. She has the sweetest toothless smile.
Ang now serves as her own guardian. She currently has 3 housemates, and she has a positive relationship with all of them. She rides in a van with her housemates and staff with no struggles, she shares staffing, she goes to places in the community, she goes to doctor’s appointments and she will sometimes request to stop to eat at a restaurant after with no issues, she participates in provider events that are crowded or loud. She still spends time alone in her room to relax, but she comes out much more often to visit and socialize. Her staff do not stand up when she opens her bedroom door. They remain on guard, but it is just not made so obvious. Ang has moved past a lot of the limitations that were put in place out of fear or concern, but they were not necessary. Her mother and father both still visit her every month. Mom visits one weekend, Ang has a break, then dad visits the next, followed by a break. It is a system that works well for Angee and both her parents. Everyone is always flexible if her parents need to change their visits, but they rarely miss a visit. It says a lot about them. I have shared with them often that Ang is the only individual I serve who is visited by both of her parents routinely. It is noted and appreciated. I talk to her mom routinely and despite everything, we have a positive relationship. I would never discourage her continued involvement in Ang’s life. They love seeing each other. Mom can come and visit and just be mom.
When I started writing this, I was thinking about all the team members and staff that have come and gone since I met Ang. I have never thought to try to remember the numbers of house leads, etc. With the help of a few people, I worked on a list: Providers-2, Homes-3, Psychiatrists- 6, House leads-13, Area Supervisors- 9, Nurses- 8, CMs-3, Direct Care Staff- 50+, 75+ (it is hard to say) and BC-1. It really is most impressive the lessons that she has taught me: speak up, keep going, don’t give up, build a strong relationship with staff (including night shift), change can happen, don’t be intimidated, don’t burn bridges, train staff and train staff again, share history, answer the phone when staff call even if it your son’s birthday or Christmas day, laugh, be kind to new team members, ask staff their opinion often, don’t judge young staff, don’t judge old staff, don’t give up on people, tell staff thank you for working one of the most challenging jobs, small successes are important, behavior trainings can and should be fun, visit the individuals you serve often, the Angee’s of the world should be out in the community often, see the potential….I could keep going and going. Angee is an amazing soul, and I am lucky to have her in my life.