Supporting a person with challenging behaviors in the community can be a difficult task. What do you do? How do you do it? If the person has significant challenging behaviors, the task of supporting the person becomes more "challenging" than the behavior.
The individual that I supported as part of the Clinical Institute on Challenging Behaviors had very significant challenging behaviors. They had existed for many years, since he was a child. Juan (not his real name) is a 26-year-old Hispanic man. He was not able to be successfully supported in his own home and at age eight was placed in a private licensed facility until he was 21 years old (ironically, the day the school district stopped paying for his placement).
Juan moved into a community home along with three other men. He immediately started to display challenging behaviors. The behaviors consisted of biting, hitting, self-injurious behavior, kicking, throwing items, physical aggression, medication refusal, and refusal to attend a day program. What a challenge! Our solution was to write a very involved behavior modification plan consisting of natural consequences, no restrictive procedures, and of course, the obligatory medication prescribed by his psychiatrist.
His previous psychiatrist was difficult for staff to work with. He did not see the physical aggression, agitation, and mood swings demonstrated by Juan as being anything but behavioral in nature, part of having mental retardation. His treatment plan was: displays aggression - increase medications. The diagnosis made by the psychiatrist was intermittent explosive disorder. (If you have mental retardation and challenging behaviors, then you must have intermittent explosive disorder! This, of course, is not an accurate or appropriate type of diagnosis.) I don't want you to think that we relied on the medications, but they were a part of the "treatment plan." We revised the support plan from time to time and, in fact, it did make a difference in the way that Juan reacted to challenging situations. He made much progress and we were all happy.
The following is a brief summary of Juan's psychotropic medication history. (Please note that he was always prescribed Dilantin and phenobarbital for a seizure disorder).
From July 1994 to October 1995 Juan received chlorpromazine, 50 mg BID. He was diagnosed with separation anxiety disorder and intermittent explosive disorder. He was sedated but still continued to display aggressive behaviors. In October 1994, he was prescribed Depakote, 250 mg BID. His level was 40.1. (The therapeutic range is 50-100.) There was no change in his behavior -quite natural given such a low blood level, so in September 1995, it was reduced to 250 mg HS and discontinued in December 1995. His level was 28.1. There was no change in his behavior.
In January 1996, Juan was prescribed Risperdal, 3 mg BID, and Cogentin, 1 mg BID. His mood stayed the same; however, his verbal and physical aggression actually increased. In July, his aggressive behaviors increased dramatically. In August 1996, his diagnosis was changed to organic personality disorder and adjustment disorder. His Risperdal was increased to 4 mg BID. His behavior was the same. We noted severe mood swings. This led the psychiatrist to add lithium, 300 mg TID, and Navane, 5 mg TID, to his medication regime. He was less aggressive but significantly sedated. He had therapeutic levels of lithium. His level was 0.9. He did, however, start to have incontinence, an adverse effect of the lithium. The lithium was subsequently discontinued.
In the summer of 1996, Juan began to demonstrate new challenging behaviors. The behaviors consisted of very rapid mood changes. He would be exceptionally happy one moment and then irate the next moment. He started to express anger to everyone about everything that happened during the day. He was in a miserable mood most of the time. His personal hygiene deteriorated. He would not eat with his housemates or staff. He would not bathe. He refused to go to work. He fought with his housemates. In a one-hour period of time, we could see physical aggression, excited and happy expressions and then again extreme moodiness or anger. We were going through changes at the house (staff changes) and his one roommate was moving into Family Living. Another gentleman was going to move into the house. These challenging behaviors were new, more intense, and were not affected by the supports we had in place. At this point, I asked him to be the person that I supported for the Clinical Institute.
The first step of the process to support Juan started with a functional analysis interview. The program supervisor, staff person, and I all completed these interviews. It was extremely interesting to note that the staff had a completely different view of the behaviors and their consequences than did the supervisor and I. The staff viewed the behaviors as manipulative, vindictive, and purposeful. The supervisor and I saw the behavior as communication, an effort to exert control over his life, and responsive to staff's attempt to "tell him what to do." We had a meeting and Juan was included. We discussed a change in the way staff interact with him. It appeared that one staff person would have great difficulty with this, so particular attention was paid to supporting the staff person to change his behavior. I want to note that it took nine months to finally get this staff person on the right track.
I also met privately with Juan. We talked for a long time about what he would like for himself - an ideal life. He wanted to live with his father; this was explored, but it proved not possible. He wanted family living but did not want to move. I do not think he understood some of our discussion because he had never truly had control or say in his life. Over time, he had been placed at a private licensed facility, moved to a community home, and placed in respite care at the request of his family. No one ever asked him what he wanted. We talked about work. He likes work but sees it purely as a social situation. He is working in an adult training center. He did work competitively but was fired due to his aggressive behaviors. He does not want to try this again at this time.
Our biggest obstacle was psychiatric consultations. The county has a new psychiatrist, and he is very easy to work with. He did not, however, make changes as frequently as we would have liked. We still, to this date, do not have a mood disorder diagnosis. The psychiatrist is conservative and wants stabilization for 3-6 months before changes are made. We finally appear to have appropriate medication therapy but arriving took quite a long time. We did, however, come to an agreement on a plan for medication changes. The treatment plan was to stabilize his behavior by adding Depakote. He would then have the Navane and Cogentin reduced and subsequently discontinued. We were to consult the neurologist about reducing and discontinuing the phenobarbital and Dilantin.
I made sure that all staff involved in Juan's support attended his psychiatric consultations. We have a team of myself, the program supervisor, program staff, and day program staff. The case manager also attended sometimes.
Another obstacle we encountered was carrying over to the day program our new vision for Juan. We need to continue to work in this area.
We noted that Juan wanted more control over his life, so we gave him total control of his daily activities. He decides what he wants to do and when. We have no more medication refusals, no more personal care refusals. Initially, there were several episodes of these behaviors, but when we did not pressure him he eventually complied. He now is working on self-medication. Our longrange goal is semi-independent living!
The key support needed for the staff was flexibility. We needed to give up control. We needed to be flexible. We needed to look at what we were doing and how we were doing it.
The story of this transformation is related in the form of a series of journal entries made over the course of the 10-month "institute":
Journal Entry - October 10, 1996
Juan is a 25-year-old man who has resided in his current community home since June 27, 1994. Juan is the youngest child of three children. He has two older sisters. His family life was extremely turbulent. His mother was unemployed and his father is an alcoholic. His family was severely dysfunctional. His father abused his mother and basically taught Juan that women are not as important as men. (He said at a recent meeting that a comment did not matter because a woman said it!) He also physically abused Juan. His father was very inappropriate to all women including his sisters. Juan lived at home with Mom after his parents finally split up. He received no services from the Berks County Mental Health/Mental Retardation Office. Juan began to have difficulty in school and began to be truant. He did not want to attend school, so he became abusive to his mother when it was time to leave. This abuse escalated and his mother eventually called the county office for support. At the same time the local school district sent out a constable to forcibly take him to school. This increased his level of fear of others as well as his anger at his parents. He was uncontrollable in school. His parents finally placed him in a dual-diagnosis emergency respite care bed for 120 days. He then was placed at D. Center. His placement there was essentially unremarkable. His father visited often, but Juan always wanted to go home with him. When Dad wanted to leave, he asked Juan to go to the snack machines, and left. He would also sneak away when Juan was in the bathroom. Juan became extremely distrustful of everyone. Juan would call Dad and ask him to visit. Dad would make arrangements to visit but would not end up coming down. Juan would stand outside all day and wait for him.
I visited Juan on June 1, 1994. He was referred to Prospectus Associates, Inc., Berco Industries for placement by June 27, 1996, his 21st birthday. He had to be out of D. by that date. His immediate placement did not go very well. I fully expected problems with the separation from his friends at D. He had great difficulty with his initial placement. He would refuse to go to work because Dad was coming over. (He really was not coming over). He refused his medication. He would not stay at his work station. A support plan was developed to provide him with consistent staff support as well as guidelines to provide him with more control. This plan was effective, and he slowly started to trust people. He did not display aggression toward others any more-physically or verbally. He was medicated during this time.
Juan currently lives with two other adults. One individual is nonverbal but has many skills. The other individual is a 31-year-old man. Juan and this individual are "best friends" one minute and fist fighting the next. He attends an adult training center and works through the center at a local restaurant 20 hours per week. He has many "girlfriends" that he associates with. These women basically use Juan. He gives them things-money, his lunch, his personal items. Juan is receiving sexuality training [discussed in a later entry].
Juan goes home every weekend. This is good because Juan loves his family and enjoys his visit. This is bad because his parents are poor role models and Juan is allowed to drink beer, stay up all night, go to strip bars, etc. This is inappropriate as he does not receive counseling by his father and he takes medications that are not to be taken with alcohol.
There have been many changes at his home in the past few months which have caused an increase in aggression and agitation. The supervisor has resigned to have a baby. Juan was very close to her. Two of the roommates (it was a four-person site) have moved or are moving to Family Living. A new supervisor was hired. Juan does not accept change well and this has taken a toll on him.
Juan is extremely social. He talks to his roommates and to others on the phone; he can occupy his time. When he is agitated, he requires constant redirection. If he is bored, he will become aggressive. (This is not directed at staff but rather toward his one housemate, who is not able to defend himself.)
Juan has many people he calls friends. He gets calls at home from them. His father calls him daily. His mother has remarried recently and calls him infrequently. She has only been at the house five times. Juan does visit her often.
Juan makes his desires and wishes known. He verbalizes likes and dislikes. He is never asked to do something he does not like - except to shower more frequently. (This was a control issue between Juan and the staff and has been resolved. Juan decides every day when he will shower. Staff now give him control over this issue.)
Juan is treated just like anyone else at the house, staff included. His cultural issues are included in the program. Staff prepare ethnic foods and celebrate holidays with him. He goes to the Hispanic Fair. He has staff that are bilingual although he speaks more English than Spanish.
Juan is a great guy and it is my desire to help him reach his potential.
Journal Entry - November 15, 1996
Juan's medications have been changed. He had a dramatic increase in agitation and assaultive behaviors. He was very angry and moody every day. He lost his part-time competitive job. He was being assaultive to his housemates. He was very moody. One minute he would be happy and the next he would be screaming. This necessitated a visit to the psychiatrist. The psychiatrist changed his medications:
Since this change in medication, Juan has become less obsessed with fighting with his housemates. His mood has stabilized. He is friendly again and has not been experiencing all of the dramatic mood swings.
I want to revisit some issues that were discussed in my first journal entry.
I've been giving a lot of thought to what it is that Juan really wants out of his life. When I asked him about this, he discussed living with his dad, a job, girlfriends, and a scanner. (The scanner is a police scanner, which monitors their radio transmissions.) Well . . . we were able to get him the scanner. That was the easy part. He wants his old job back. I talked with his day program and they are going to reconsider this for Juan. Regarding his father, Juan goes home with Dad every weekend, and that is basically all his father feels he can do.
I thought a little more about his program. Two of his roommates have moved into Family Living. His new roommate is a young man who has autism. He is very intelligent. The program is now more of a semi-independent program (or, more correctly, it is designed so one can become semi-independent). I feel that Juan may benefit from a less structured more independent type of program. He would be able to be more in control of his life, which is something I feel he really wants. (Everyone deserves this!)
I have had many conversations with his support staff regarding the way that the staff work with him. Inadvertently they have become very controlling, and this is a big "no-no" when working with Juan. For instance, on one occasion I was over for a visit at the house. Juan wanted to go shopping. He knew that since I was there the staff would want to sit and talk with me and not take him out right away. He basically pushed me out of the house so we could leave promptly. I think this was great because he took control. I did talk with him: I told him that if he wants something, staff will take him to get it. He doesn't have to worry that just because I am there he can't do things. I also discussed with staff the importance of follow-through and of attending, whenever possible, to his wishes. If he wants to go, that is why they are there.
I have also noted that staff tend to dismiss his feelings. Juan becomes angry and staff tell him that he should not say he hates certain people, that he should say that workshop is good, etc. I do the opposite. He says, "I hate so-and-so." I say, "Okay, Juan, I'll talk to them." He stops yelling about the subject he is on.
Since the medication change Juan is much more content, less moody, and much more social with everyone. I don't know if I like the Risperdal being started again but it really helped him.
Journal Entry - December 12, 1996
Juan has been doing very well since my last journal entry. His mood has been stable. He does not appear to be sedated in any way. He has been sleeping and has not been having trouble getting up in the morning. He has gotten back his part-time job. He has been visiting his family regularly.
There was one week of agitation, but I relate that to a weekend when he could not go home with his father due to his father's schedule. He was not very easily redirected. He was "crabby" (moody, yelling, making threats). I feel that he has problems directing his anger appropriately. This is a program planning area for support staff and Juan to focus on after the holidays.
A psychiatric evaluation was completed on November 21, 1996. His lithium level was 0.9.
I am going to his next appointment, in January 1997 (end of the month). I am going to make the following suggestions:
I think we need to get the Depakote started immediately, reduce and discontinue the Navane, and slowly decrease the Risperdal as the Depakote level increases.
I do not agree with the diagnosis of intermittent explosive disorder. If you read the case notes from the psychiatrist, he also makes no mention of a mood disorder. This was discussed at his last appointment.
Juan is doing very well at his workshop. He is working and is easily redirected. The staff are happy because he is compliant but I feel we have lost some of his personality. I think the Risperdal is to blame. I do not agree with medicating someone if they lose themselves. I think this has happened. I also wonder if he has some sort of seasonal disorder, because he seems to have more difficulty in the fall.
Juan says that he wants to live with Dad. Dad says that it is not possible. I am going to talk to his father again and see if this is his dad's final decision. He may be able to benefit from Home-Based Waiver services at home with Juan. With this support he may be able to support him. I know that Dad uses drugs, is an alcoholic, has been abusive to his ex-wife, and has chronic hepatitis. I am uncomfortable with the situation, but I can't let my discomfort hurt Juan. If he had adequate support and "supervision" of support staff, we could monitor him and be sure everything is okay.
Regarding the scanner, I asked Juan why he wanted it. He simply said, "Because." I think he likes it because the supervisor had one. Juan also loves to talk on the telephone, and he especially likes it when the supervisor calls him up over the CB on the scanner. Juan loves to socialize, so we provide him with many opportunities.
Juan is in a group sexuality program through our agency. The many women he considers "girlfriends" take advantage of him. He is very giving: He gives them stuff and then they blow him off. The current supervisor is a man, and he talks to Juan about this issue. Juan is getting better about the women taking advantage of him.
The staff has been very open to the new ideas I have presented. They are very willing to do whatever they need to to support Juan. One staff member is slightly resistive as he uses humor and "antagonizing" methods to "control" Juan. (He gets him wound up and antagonizes him by joking - "I like your girlfriend," etc.) I talked with the staff and explained abuse policies, our role as support staff, and more appropriate methods of interaction. I explained that these jokes can be abusive as they upset Juan. They are no longer occurring. Juan tells the supervisor what the other staff does. I actually talked to Juan about transferring the staff person but Juan was adamant that he wanted him to stay. Juan said that the staff member was his "friend" - his "buddy."
Journal Entry - January 16, 1997
This past month has been very good for Juan. He thoroughly enjoyed the holidays! Juan spent 11 days at home with his family during Christmas and the New Year's holidays. He was happy to return to the program and actually asked to return "home."
His next psychiatric appointment is in late January and I plan to attend. (I discussed our plans in the last journal entry.)
We have started a new procedure with Juan which he really enjoys. Juan used to come home from work every day very angry and agitated. He now comes home and has a nonalcoholic beer after work. It is a very big deal for him. He comes home and puts away his things and says he "needs a drink!" He then gets the beer from the refrigerator and relaxes and drinks it. He makes certain that everyone sees him drinking and makes sure that they properly reinforce his actions! This has totally eliminated the after-work agitations. He gets an opportunity to "chill out" and really enjoys this time.
I am not happy with his medications (thiothixene, Risperdal, lithium, Cogentin) for behavior but until we see the psychiatrist I cannot do too much. I do check him for tardive signs frequently. I worry about young people getting meds like this because of the effects of long-term usage on the body. I also do not truly believe that they are necessary for him. I will strongly suggest introduction of Depakote and subsequent reduction of the thiothixene and Risperdal.
As far as family living goes, we did discuss this just six months ago. A Hispanic family was interested in becoming a provider. I did talk to Juan about this, but he firmly stated that he did not want to move. This was during the time when his behaviors were particularly challenging. I believe that Family Living is the way to go for him. I think he would be best served in this type of arrangement. He, however, has no real idea about what Family Living is about. He has also never been given a choice about where to live. I think that in the next few months I will start to present him with more information about Family Living while we look for a provider. (Our agency is also a provider for Family Living.) I have found that Family Living is best presented to an individual by letting the family visit the person and get to know them a little bit. Then the idea of moving is presented. This allows a measure of informed choice. If one has no concept of Family Living, simply being asked if you want to move is frightening. Also, it works very well if a current staff decides to become a Family Living provider. This way the individual knows the provider and it is a less stressful situation.
I think that we will be okay with his psychiatrist. The psychiatrist is on our Behavior Approaches Review Committee and I am also a member. He seems to listen to what people say and give new ideas at least a thought. I think that we will be able to discuss adding Depakote and reducing the Risperdal and Navane until they are discontinued. I had dinner tonight with Juan. He was very pleasant. The supervisor does individualized activities with Juan. Juan voluntarily stated that he wanted to take a shower before they went out tonight for a movie. (We usually need to encourage him to bathe.) He is also looking forward to learning to ski with the supervisor (not through Special Olympics but individualized).
Juan has a terrific personality and is a lot of fun. I look forward to supporting him to get his medication stabilized.
Journal Entry - January 26, 1997
I accompanied Juan to see his psychiatrist today. The entire Interdisciplinary Team was present (program supervisor, resident advisor, day program, supervisor, and myself). We met with the psychiatrist for half an hour. The psychiatrist talked with Juan for awhile and then asked how he was doing at work and at home. Generally he is doing well, with just minimal moodiness at times. (I wonder if his moodiness is simply a normal response to something that is bothering him and if he is reacting just like anyone else would?) Following guidelines that Kit Gordon (Medical Director, Office of Mental Retardation & Office of Medical Assistance Programs, PA Dept. of Public Welfare) had discussed, I brought up the possibility of a medication reduction/change. The psychiatrist told me that he is very much in favor of a medication reduction. He feels, however, that Juan needs to be stable on his current meds for at least six months before trying a reduction. In his experience with people with brain damage and organic disorders, it seems better to stabilize first and then reduce/change meds, he said. I discussed adding Depakote. The psychiatrist said he prefers Depakote to lithium. I told him that Juan was on Depakote before but the blood level never reached a therapeutic range. The psychiatrist said his notes from the previous psychiatrist only said that Depakote was tried with no response; he said he wished he had known that before. We discussed Juan's urinary incontinence. The psychiatrist lowered the HS dose of the lithium. If Juan experiences additional side effects, the psychiatrist will change the medication to Depakote. Since the lithium and Risperdal were both increased at the same time, he does not know if Juan is responding to the lithium or to the Risperdal. The psychiatrist will discontinue the Navane first and then the Risperdal. This will occur in five more months. The psychiatrist stated that he was very glad the team was so prepared for the session and that it was obvious that some research was done. Kit Gordon said that we should listen to the psychiatrist and that sometimes they have their own plan. The psychiatrist has a plan and we agreed to listen to it and follow it. Juan has no tardive signs. Next visit is in six weeks. We are to get lithium levels for the next appointment.
Journal Entry - March 20, 1997
Juan continues to experience changes in his behaviors and has had several changes since the last journal entry.
Earlier, I noted that after Juan had started taking lithium (and the dose was increased), he experienced episodes of urinary incontinence. He seemed to not be tolerating the lithium very well. The psychiatrist reduced the p.m. dosage of the medication in an effort to reduce these side effects. He began to experience urinary incontinence during the day. This is a new behavior. We discussed the situation with the psychiatrist and he ended up discontinuing the lithium. The medication plan at this time is for Juan to continue on all the other medications until his next appointment on March 27. At that time, the psychiatrist will start to reduce the Navane and start Depakote. The psychiatrist did attend the two-day meeting with a consulting psychiatrist on March 19 and 20 in Berks County. (I attended also.) I hope he will come to agree with me that intermittent explosive disorder is not the correct diagnosis.
Juan was examined by his psychiatrist on February 20, 1997. Juan experienced an increase in verbal aggression after this time. The psychiatrist was consulted for an emergency appointment. At this appointment the psychiatrist decided that unless there is physical aggression, no changes will be made in his medication therapy. The psychiatrist stated that he may not introduce Depakote. (Hopefully, after the Berks County-wide training by Steve Weisblatt on psychiatric issues, he will see that Depakote is appropriate.) The staff are going to ask the doctor to rule out a mood disorder (or accept it and treat it!).
We met as a team on March 19, 1997, for a Plan of Care for Juan. At this meeting we discussed several issues with him. He does not want to live in Family Living. He does want to live with Dad. Dad said that it would be impossible under any circumstances for Juan to live with him even with support. I want the direction of the program to move toward semi-independent living. Juan liked this idea. We will meet as a team in two weeks (with Juan and his housemates) to discuss exactly what needs to be accomplished for this transition to occur over the next year. Juan is very responsible if given responsibility. It appears to us that given the situation, he may blossom with more control over his life and the program. We will start program meetings that include the gentlemen that live there also to discuss any issue of importance.
I feel that Juan needs to be taken off Navane, Risperdal, and Cogentin. If he is treated for a mood disorder with adequate dosages of Depakote I think he will stabilize. I also feel that one staff member in particular sees the behaviors as more than they actually are. He overreacts and plays into the behavior instead of redirecting and discussing the issue. I think Juan needs his feelings validated. Juan has a lot of untapped potential. I would like for us to help him untap it!
Journal Entry - April 13, 1997
Since my last journal entry, a lot of positive things have occurred.
Juan is finally on Depakote. This was started on March 27, 1997. Initially Juan was very sedated and lethargic (about four or five days). After this, we noted that Juan's mood swings, while still present, began occurring less frequently, although the intensity is somewhat exaggerated. He had been on Depakote for about a week, and then he started to experience episodes of vomiting. This occurred daily for five or six days. It would occur approximately two hours after his 4:30 or 9:00 p.m. Depakote administration. Since stomach upset is an adverse effect of the medication, we were not exceptionally concerned but did request the April 10, 1997, medication review to be sure. The psychiatrist said that he was not overly concerned and that Juan's system was probably having trouble adjusting to the medication. He said we could give him over-the-counter Zantac and just keep an eye on this issue. If it persists, we will need to look at it more closely and try to determine what is actually happening. Juan did not have these difficulties the first time he was on Depakote. At this appointment, the psychiatrist started to taper the Navane. He will be off Navane in three weeks. The plan is then to discontinue the Cogentin. Since the Dilantin level is so low and the Depakote is also an anticonvulsant, the next medication reduction will be removal of the Dilantin. Next will be the reduction in Risperdal and possibly the phenobarbital. This would be in conjunction with a neurological consultation. The psychiatrist was very open to these medication reductions and was very pleased with the progress and the interest we have in stabilizing Juan and not just "sedating" him, as was past practice. I attended both appointments and I feel we are working very well with the psychiatrist.
Two very significant incidents have occurred at the day program since the Depakote was added. Juan actually threatened staff with a knife and fork. The other incident consisted of severe verbal aggression. I was not there so I cannot say what actually happened, whether staff dealt with the aggression appropriately or what really instigated the incidents. I feel that while the agitation probably would have occurred under any circumstance, I do not know how the staff at the day program handled the situations. I am going to work to improve the interaction between staff and Juan.
Juan's parents have expressed concern about his medications and the reactions to the medications (lethargy initially, vomiting). We have been able to explain that we are now treating the underlying cause of his behavioral issues. We are not just treating the symptoms. The same concerns were expressed by staff, but they understand now. I used the analogy of treating a person with cancer by giving them morphine. The pain will be gone but the cancer is not being treated. Medications to kill the cancer will stop the pain that you were just treating with morphine.
The plan is now:
To ensure that staff are listening to him, I have requested that every issue that Juan brings up be discussed (and validated). He needs to feel he has a say in his life. He needs to continue to be provided as much staff time and support as necessary to accomplish this. We will be meeting as a team to discuss our move in the direction of semi-independent living. One issue that will be discussed will be Juan's needs, wants, and desires. Listening to him is one of the most important things staff can do.
The psychiatrist still has not officially diagnosed a mood disorder but is leaning in that direction. When asked at his last appointment, he said that he feels Juan has intermittent explosive disorder but may also have a mood disorder. He is waiting to see the effects of the medications before changing his diagnosis. (He is really treating the mood disorder, though, and not necessarily an intermittent explosive disorder, since all medications are scheduled to be discontinued except for the Depakote.)
I must say that I feel the progress made these last eight months has been exceptional. Juan is very different, the staff have made changes in their approaches, and the psychiatrist is changing his medication regimen. Juan is finally on a mood stabilizer, and Juan is more in control of his life and destiny. Finally, he is moving to the semi-independent living stage that he really wants. We have listened and heard what Juan has been trying to tell us all along. What a change he must feel as he achieves control over his own destiny. He is no longer sedated. He is slowly coming off of the antipsychotics, and he is not as tranquilized.
I have also been fortunate to be able to use the information I learned at the Institute in working with other individuals. There have been many changes overall and I feel that this training has helped me to become a better advocate, program specialist, program plan/behavior support plan author, and professional in the field.
Final Journal Entry - May 10, 1997
This is my final journal entry for the Clinical Institute.
Juan is doing fabulously! I was over at his house at his request for dinner on Tuesday evening. He assisted in preparing dinner. He was happy. He was jovial. He joked with his housemates and staff. He assisted his housemate in a task. He was not sedated. He was not agitated. He was a joy to be around.
Juan has been doing quite well since his April 24, 1997, psychiatric consultation. Before that he had been displaying agitation and aggression and was just plain "in a lousy mood!" He was not happy at all. The psychiatrist increased the Risperdal to 6 mg BID and requested blood levels for the Depakote. He was going to restart the Navane but the staff want Juan to be as medication free as possible. The Risperdal was increased as a temporary measure until the Depakote started to work. He is again sleeping normal hours. He is not sedated. He is not vomiting anymore. He is doing well. (The Depakote level was 80.)
Juan was home on Wednesday and we were having a meeting for one of his housemates. Juan requested a meeting and we let him talk. He wants to be more independent and he wants a new house key. (He has lost about 20 since he moved into the house.) We will assist him in purchasing a chain. It will go around his neck to hold his key. We discussed what we will need to do to enable him to become more independent. This includes ideas for new goals, and we even set target dates for some of the things to be done. Juan was quite happy with this.
Overall, I feel the Institute has given me the knowledge and resources to improve the level of service and support to Juan. He is doing well. I asked the staff if they felt my input and direction were valuable. They all felt that it was.
The changes in Juan over the past year have been phenomenal. The changes in staff are also incredible. We all worked very hard, including Juan, to support everyone in making the necessary changes to better support him. Our agency is extremely supportive and "person-centered" and will do whatever needs to be done to meet the needs of the people we support. This made our work much easier. There has not been any "challenging behavior" for the past six months. Juan is pursuing semi-independent living in his current living arrangement. He has developed warm, supportive, and caring relationships with his housemates and staff.
His current diagnosis is still intermittent explosive disorder but the psychiatrist is considering changing this to a mood disorder.
He currently receives the following prescribed medications:
His August 26, 1997, Depakote level was 98.8. The Risperdal will start to be tapered in December 1997. (The Navane, Dilantin, and phenobarbital were discontinued.)
This past year has been challenging but the changes we all were able to make made everything worthwhile.
I asked Juan how he feels about his life now. He responded, "I happy." I truly think we are on the right track. Our efforts do not end here. We need to continue to support Juan and meet his wants, needs, wishes, and desires. As his wants, needs, wishes, and desires change, our support will need to change, too.
I drew several conclusions in the course of the 10-month training. These include:
1. The process of supporting someone with challenging behaviors is a process. To actually support someone, you must constantly look at where you are, where you were, and where you want to be. You see, you don't actually support the individual to change-you change. You learn that you must really listen and hear what the individual is trying to tell you. Those things that we feel are so very important may not really be important to the person.
2. We offer many choices to the people we support. Unfortunately, sometimes we need to remember that the person may not really know what all those choices mean. Choices need to be offered with explanations, demonstrations, very concrete examples. We change our minds, so we must understand when someone else does the same.
3. In the process of supporting people, we sometimes teach them to become dependent on us as opposed to being independent. We are always there to "support" them. They learn that, in many instances, there really and truly are not any natural consequences for their actions.
4. You must change staff's vision to be that of a true support person and not that of a caretaker, maid, and/or taxi-driver. They need to put the interests of the individual first and foremost. All people need opportunities to try new things and to fail. The best learning occurs when we are presented with obstacles that we must overcome.
5. Be an advocate. Find the appropriate medical and psychiatric treatment. Learn about medications and psychiatric disorders. Learn that most treatments for "behavior problems" that include medications are not appropriate. In many cases, the drugs tend to exaggerate the behavior. Would you like to be doped up on drugs that make you feel lousy?
6. If the individual truly has a psychiatric disorder, treat it appropriately. You must find a good psychiatrist and be willing to talk with him/her about the situation. Describe the symptoms completely, not just the "challenging behaviors" at the appointment. Does the individual sleep through the night? Is there a cyclical pattern to behaviors? Is the person extremely happy for extended periods and then despondent for another extended period of time?
7. Are the behaviors truly "challenging" or perhaps just exaggerated natural reactions to situations? What tools have you given the person to learn to better deal with those difficult situations?
8. The most important thing to remember is that you can ask for assistance and advice. There are many people in the field who are available and willing to help you come up with "new solutions to old problems." Do not be afraid to ask for help. Sometimes having another point of view is the answer. They may see something that you don't!
The Pennsylvania Journal on Positive Approaches is published by the Pennsylvania Office of Mental Retardation (OMR) Statewide Training Initiative through Temple University, Institute on Disabilities, University Affiliated Program and Contract Consultants, Inc., 105 Old York Road, New Cumberland, PA 17070. For subscription information, please contact Contract Consultants, Inc. at  774 - 5455. Copyright © 1998 OMR/CCI. All rights reserved.
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