The Failings of Day Programs for Mentally Ill

Here is another of my Recollections posts, where I am trying to catch-up the story of my son’s diagnosis of schizoaffective disorder in 2007. 

Fom my son’s first hospitalization, the social workers’ I spoke with reminded me that an outpatient program would be available for my son, if transportation could be arranged.
 
The program they were talking about was called “OCS” or sometimes even the “Hope Program” and it is another offering of the Wellstar Health System. It is located off Windy Hill Road in Marietta, Georgia. The address is 2000 South Park Place, Atlanta, Georgia. I only know a little of what happened in the few days my son went there.
 
While my son was attending OCS, he told me the chairs and floors were coated in drugs and one of the other patients threw his drugs at him. Since this falls right in line with the delusions my son had been having all summer long, it can be assumed that he was still very ill. (I did have a social worker that told me she could believe the latter about drugs being thrown at him, because she had heard of just about everything in her line of work. To me, that stretches credulity just a bit too far.) My son DS also mentioned that he had seen Dr. K., while at OCS. I thought this was a good thing… you know, doctor supervision.
 
Whether because of the delusions or something else, in just a few days after his third hospitalization, DS got to the point where he vehemently refused to go. I telephoned the program to speak with someone about DS’s situation and to ask whether there was something they or I could do to help him to want to return to the program. I received a very flat refusal to discuss anything about my son because of patient privacy laws or in other words, “Mighty HIPAA.” (Let us all now kowtow.) That was the end of my son’s attendance at OCS.

Months later, I found a folder about the OCS program in my son’s room that he let me have since he wanted nothing to do with the program. Here are some quotes from the Orientation Handbook.

Quote from page 3:

The objective of OCS is to help our clients reduce or elimate symptoms and make positive lifestyle changes while focusing on a holistic approach. At OCS, we work with individuals who are experiencing marked distress due to depression, generalized anxiety disorder, panic disorder, obsessive compulsive disorder, bipolar disorder, schizophrenia, addiction etc. Through a multidisciplinary approach, our staff assesses symptom severity, determines the appropriate level of care for each individual, and assists him/her with the development and attainment of appropriate treatment objectives. When appropriate we use release of information to help us create a holistic treatment involving clients’ supportive social network (e.g. family) and multi-disciplinary doctors in order to provide an effective continuity of care.

In our case, obviously, the lack of “release of information” may have contributed to my son’s lack of “continuity of care.”

Quote from page 12:

Family members and/or close friends of clients are encouraged to attend each week. Mental health disorders and substance abuse/dependency are disorders that typically affect the family unit as a whole, Educating and treating the client, and the family, on Disorders increase the likelihood of the client maintaining a long-term lifestyle of recovery…. Family members and significant others are encouraged to utilize this opportunity to get support for themselves while continuing to support the client.

It is too bad no one told me I could attend with my son. After DS came from a mental hospital setting where visiting hours and information were extremely restricted, I do not know why anyone would think I could make that leap of thought.

From reading the OCS Orientation Handbook, I have come to the conclusion that the program’s strength lies in treating substance abuse. There seems to be an emphasis on that, including requiring patients to attend two 12-step meetings per week, obtaining the AA book and an AA meditation book. I seriously doubt this program has any benefits for a person like my son, coming off a serious psychotic episode, and probably needing rest and a low stress environment more than anything, as I have since learned.

After my son DS refused to attend OCS last August, a state inspector of some type visited the personal care home (PCH), and according to the manager, MG, my son was required to attend a day program or the PCH would lose its license. I took that to mean that DS had to attend a day program or be homeless, because I did not think the PCH would allow itself to lose its license.

house between rocks“between a rock and hard place” photo by judepics 

I tried to find out why DS was singled out for this requirement when there were other people in the home with a mental diagnosis not attending day programs. Was it his relatively young age of 27? The unofficial word I got from another staff member at the PCH was that is was the severity of DS’s symptoms that made him stand out, particularly the pacing and spending time alone in his room.

I assumed they were right… he must need a day program because his symptoms were severe, and he would get treatment or therapy or something there. (Wrong, I figured out later.)

I started calling around trying to find day programs. First, I tried the Cobb County Community Service Board. From what I have read on the Georgia government website these county community service boards are supposed to be very helpful for the mentally ill. I tried to make an intake appointment on my son’s behalf. The first question I was asked was, “why is your son not making his own appointment?” Thinking his mental illness alone might not be a good enough answer (because of previous problems I have had making psychiatrists’ appointments on my son’s behalf), I said he had autism (Asperger’s) and that makes it difficult for him. I received a firm reply, “we don’t provide services to the autistic.” When I tried to explain he had schizoaffective disorder too, the person did not listen at all, but she continued to deny us an appointment. I decided to call back the next day without mentioning the autism. As it turns out the day program that the service board administers was not accepting new patients anyway, but they did refer me to a program at “Walton Nursing” in Austell, Georgia.

This post is already too long. I will tell the sad story of what happened with Walton Nursing later. For right now, let me leave a couple of words of advice to anyone dealing with a similar situation for their loved one:

  1.  Always visit a day program with a family member. Visit for a whole day or session, if that is what your family member will be doing in the program.
  2. Speak with the state inspector of the personal care home, when they are making difficult demands on your loved one. Perhaps the PCH exaggerated the seriousness of the situation? (i.e. losing their license versus eviction of my son?)
  3. Day programs are not for the severely ill.
Explore posts in the same categories: Day Programs, Mental Illness, Places to Live, Recollections

17 Comments on “The Failings of Day Programs for Mentally Ill”

  1. Karen Halls Says:

    I found your site on google blog search and read a few of your other posts. Keep up the good work. Just added your RSS feed to my feed reader. Look forward to reading more from you.

    Karen Halls

  2. Hero Says:

    Thank you kindly, Karen. And I will get to the next part of son’s story soon.

  3. Denise Fitzpatrick Says:

    Dear Hero:
    I am a Hero as well. I also have a 27 year old son who has a history of undiferrientiated schizophrenia and mild mental retardation. I am a parent that is 200% suportive as I see you are. Everything that you have mentioned here, I can relate to because I have been there and still is there, and have been through the same and more. My son Julian has a dual diagnosis and I have been told everwhere that I look for a day program that they do not take both diagnosis only one, either people with schizophrenia OR those with mild mental retardation. My son paces a lot. The last day program that he was in did nothing. The demand that are put on your son/my son that hey cannot carry out is disguting! We have been there as well. The sad part about it is that the so called professionals are supposed to understand these disorders.

    I guess that is their disorder that they cannot understand the one with the other disorders. My son does need more things to do during his day and I am now tapping into the National Association of the mentally ill to see if they can help(I have known about them for a while now) NAMI. Please continue to share your story as I will and please share what you find to help your son if you will. God bless you and your loved one.

  4. Hero Says:

    Thanks, Denise. For some reason, I am suffering some kind of emotional and motivational block. I just cannot seem to get to the rest of my son’s story on this blog. I know it is more than mere procrastination. For right now, let me say he is still in the same PCH he has been in since the end of 2007 and refuses to have anything to do with any day program. We have worked out a compromise with the PCH owner that he comes home on weekends… that gives her a little break. We are coping with new bizarre behaviors cropping up and his moods. I absolutely loved NAMI, especially when I went to their Family-to-Family class. I hope they can help you. Amen to the part you said about “so-called professionals.” The closest thing I found to real mental illness experts are at NAMI.

  5. Denise Fitzpatrick Says:

    My son is enrolled in the Assertive Community Treatment(“Act”) through the Georgia Rehabilation Outreach Program which provides housing to those with mental illness and are on medication. I have not been connected through this program for a day program as of yet. I did check back into the Dekalb Community Service Board(We once lived in Dekalb County) which does have a day program for dual diagnosis but it is up in the air as to whether he will be able to attend because his medicaid is funding the “Act” program and so far I am told that it will not fund any other type of program. I agree that day programs can be a mess, but my son Julian really needs more to do in the day. We must be really strong people well…I say it is not me but God’s strength.

  6. Hero Says:

    Thank you, Denise. I never heard of ACT. There is one similarity between ACT and SOURCE (that my son uses) and that is that SOURCE will not fund a day program either when it is already helping to pay for housing. I understand that the reason my son qualifies for SOURCE is because SSI is his sole income and he is on Medicaid. I was recently contacted by the Social Security Administration and they said he should have been on Social Security disability since 2002 and Medicare, because of some income he has made in the past. I have yet to see now how this will affect his housing choices. It will be two to four months before I know what this change in Social Security is going to do to us.

  7. Denise Fitzpatrick Says:

    Since my son Julian needs more things to do in the daytime while I search for work and schooling, he recently began going to the Christ the King Day program which has a great majority of clients with severe mental illness and severe physical handicap. My son is not physically handicapped at all and is very aware of what is going on in his surroundings. Over the week-end, he told me that a male worker at the day program by the name of “Darius” yanks and pulls on some of the clients that are severely physically handicapped as well as mentally. Ones that probaly cannot speak for themselves about what is happening to them. Julian also alleges that the man Darius also uses profanity and shouts such things as “I will knock the shit out of you” Julian said this Darius has said this to him. God forbid if he puts his hands on my son, I’m talking serious court case. I told Julian that him being there can help someone else who cannot speak for themself, as I have now reported to Julian’s caseworker through Source about this. I have also reported these reports by son to other agencies including the advocacy for the mentally ill as well as to the Adult Protective agency. Now, we are somewhat between a rock and a hard spot because I do need a day program for son until he starts a vocational training program through the Bobby Dodd Institute or such, and it is helping someone else at the day program by him being there and reporting what is going on but at the same time, I hate son being there while these investigations take place, he also does not want to go to the program. Send feedback, God help us.

  8. Denise Fitzpatrick Says:

    I am somewhat embarrased, but I did not know, just being a parent. When my son was dropped home today from the Christ the King Day program, I spoke with his bus driver who is a very wonderful God fearing woman. I mentioned to her what this Darius guy is doing as told by Julian. I called him the staff worker “Darius”. The driver who has transported for Christ the King Day program for a long time told me that Darius IS NOT a staff person but that he is a client himself. The other client was in the van at the time and told me that Darius plays in a rough way. He made my son Julian think that he was on staff! Julian had fear in him due to his size and how he yanks around with the other clients and curses. I felt really embarrased to learn that Darius is not on the staff. The driver informed me that she will call the female staff when she got in to inform them of my misunderstanding according to what Julian thought. I must now notify the agencies that I had reported this too and tell that my son thought this person was a staff member. I was just being a parent.

  9. Hero Says:

    Thanks for commenting again, Denise. What a tough situation for you and your son to deal with, but you are right to speak up about it.

  10. Elizabeth B. Says:

    I am so glad to have found your blog. My 20 year old son has been in residential treatment for severe major depression/ PTSD for 2 years. I am heartsick that we cannot afford to keep him in treatment any longer and am desperately seeking a good group home in the Marietta area as well as a therapist and a psychiatrist. These clinicians have been provided by the residential facility but neither is in private practice and he has outgrown the child/adolescent ones from pre-residential days.
    My DS is still a high school senior but has been on hospitalization status for 2 years. I have recently been appointed his legal guardian and we are in the process of obtaining SSI/Medicaid. He self-harms and is chronically suicidal (many features of BPD) but no “official” diagnosis. He averages at least one 1013 hospitalization every two months. Even if we could afford to continue residential treatment, he is being discharged from the residential facility for failure to make adequate progress and for not keeping his safety contract.
    I also have completed the NAMI Family to Family course and found it to be invaluable. The course I attended was in Atlanta though and I am lost trying to find something for my DS in Marietta. Please help!

  11. Hero Says:

    Hi, Elizabeth B. I have replied to your concerns in my post here: http://mentalhero.com/?p=52 .

  12. Denise Fitzpatrick Says:

    My mentally ill son and I lived in an apartment through the Georgia Rehabilitation Program for nearly two years. I would not ny any means recommend this program to anyone. Please e-mail me for details. My e-mail address is denisenf@yahoo.com

  13. Denise Fitzpatrick Says:

    I am looking for a really good place for my son to reside. He is 28 and I never wanted to place him anywhere but always wanted to keep him with me, but it is now getting too much for me at times. I work during the day and he is not in a day program presently. He sleeps while I am at work and then when I need to go to bed to get up early the next day for work, he is geared up and ready to stay awake all night. He paces, goes in and out of the door(Never leaves though) He plays the t.v. loud. I use ear plugs and it does not really help. The meds that he is on, works sometimes and not others. If I ask him to cut t.v. down and stop going in and out of the doors, He curses me out and such. Sometimes when I go to work, I am so exhausted from a lack of sleep. I know stress kills and I know that in order to continue to be here for him, I would need to place him somewhere for at least 3-4 nights a week. I went to places to live on the site here and went to the website recommended there, but it only took me back to the mental hero website. If anyone has any resources for good housing, please by all means, contact me. Please.

    Exhausted and stressed
    Denise Fitzpatrick

  14. Hero Says:

    Hello Denise,

    Thanks to your comment I just realized the socialworkerstream.com website appears to be gone. I will need to find another internet resource for finding personal care homes — these (internet resources) seem to be rare — these agencies seem to function through their own networks. If your son is on SSI you should be able to apply for “SOURCE” to help pay for the PCH, and maybe while you are in the midst of the process of getting approved for SOURCE you could get one of those lists of PCHs from them? Then that is just the beginning of your work as you call them by the dozens to find one with an opening for a young mentally ill male. It’s not impossible, but I am just warning you to brace yourself for the workload. I need to dig into my papers — I remember there was a government database somewhere for mental health services that I think included PCHs. When I find it I will make a post about it.

    Anyway, I am not sure a personal care home is going to help you much if your son refuses to go to a day program, because my experience has been that most will require a day program for their young mentally ill residents. It might still be worthwhile to get him moved into a PCH even if it is for a short time (before they realize he will refuse to go to his day program) just to give you a break and a few nights rest so that you can think again.

    I have a couple thoughts for you. If the reason for your son sleeping all day is because the house is quiet with no one else there, maybe you could get an adult day sitter to be in the house and play the TV loud, et cetera, to keep him awake so he will then sleep at night. I know there are “granny sitters” — the type that people hire for watching elderly people at home during the day while the adult children are at work — and they would be much cheaper than a PCH if you are paying out of pocket.

    Another thought is to get into some kind of family counseling with your son to try to get him to understand that his disruption of your sleep is a serious matter, and he needs to make some concessions. If plain, reasonable and open discussion is making him cranky, maybe there needs to be an adjustment of his medication because of his mood. I know counseling and medication won’t fix all the problems in his thinking, that’s why these people are mentally ill after all, but maybe you can get enough help that you can live with the rest of his behaviors.

    I just had a brainstorm that is a little strange, but who knows if it could work. Try posting a “help wanted” or what they call a “gig” at Craigslist, asking for someone to watch your son in their home overnight. Who knows? There might be someone who is unemployed or mildly physically disabled who would be willing to make some extra money this way.

    I hope some of the above helps. I will try to find the link to the database to post here soon.

  15. Hero Says:

    I talk about the database for finding PCH’s in Georgia at this post here: http://mentalhero.com/?p=56

  16. A.Silva Says:

    I have read all the little stories about your plight, Hero, and the responses by other people on here. I am very shocked that your story is so close to how mine is/has been recently. My 34 yr, old son has been hospitalized 5 times now since May 2nd 2011. He is currently in the Ga. Regional-has been since May 28th. He first went to MCG psychiatric unit, then was in Flagler Hospital in St. Augustime, Fl; then to Ga. Regional in Savannah, then they brought him home here to Ga. Regional in Augusta.Released him after a few weeks, then in just 3 days he was acting the same as when he was admitted the first time to Ga. Regional-Augusta.I had to call police and get ambulance to take him back again. He has been there agin now for a few weeks. They are recommending a PCH now. He has had his meds changed 4 times now, and they want to change them again on Monday. He is diagnosed with Aspergers Syndrome, Paranoid Schizophrenia, and Psychosis. He is delusional also. But he remains calm now and is not ranting on and on. But sometimes starts talking again about his delusions. At least he will change the subject now when asked to. No telling what will happen next week when they change his meds again. It scares me and saddens me to think he will have to go through all this med change again…and how it affects him each time. Whether or not a PCH is best for him I don’t know. I only know I cannot take any more! He is intelligent and its sad how his life is being wasted away because of this evil illness. Sometimes I think maybe its an oppression by the devil. I don’t know.

  17. Hero Says:

    Thanks for your story, A. Silva. I am so sorry to hear about the tough time you are having, and I certainly understand the “can’t take it any more” feelings. Schizophrenia is certainly an ugly disease that takes the brains of our loved ones and turns them into something they should not be. My son had his really rough year of multiple hospitalizations in 2007 and he is much calmer now and living at home. Something I learned in the NAMI “Family-to-Family” course is that the first year of schizophrenia is typically tumultuous, or anytime they quit taking their medicine, of course. Unfortunately some people have problems finding the right medicines. Even with the best fit of medication this disease still takes something from its victims. I am not sure that a PCH was ever beneficial for my son, but it gave our family a much needed respite from the everyday strain, and now that he is home he still expresses appreciation for being at home. My son’s grandparents still take him with them on most weekends to give him a change of scene. While I worry about my son’s long-term prospects, I count ourselves very blessed in the short-term.

Comment: