So those in the mental health community who need/ wish there was a place they could live where they could have independence yet daily support in order to remain stable join in my fantasy! Especially those who like me have severe mental illness as well as a disability. In my case I’m totally blind. Other blind/deaf/ physically disabiled/ chronically ill friends are encouraged to join in.
So I’ve been thinking about this ever since I moved to Friedman Place. And figured out quickly that there were no psychologists who accepted Medicaid that came to the facility, and that the staff in general didn’t have a clue about Depression, anxiety, PTSD or self injury. As I’d been lead to believe otherwise. I thought about it a bunch more when I was extremely suicidal and just maybe considering living and I was faced with what felt like the biggest obstacle ever: getting into an intermediate care facility that I was perfectly qualified for, however I was blind and that almost stopped me from ever setting foot here.
I’ve lived here for almost two years. In two years I’ve made a ton of improvements I certainly wouldn’t have made at Friedman Place. However I’ve lost out on a bunch of stuff I had at Friedman Place. First of all more money. Because this is technically called a nursing home (though I absolutely hate anyone saying I live in a nursing home) we only get $30 per month. At friedman because it’s under a different license you get $90. I also really miss living with my best friend. Well my other best friend, Robbie. I also hate that there are a lot of things about this place that are unwelcoming for visitors. Robbie says he’s never been claustrophobic until visiting me. The somewhat verbally aggressive residents, hospital uniformed staff, and small hallways and rooms, even colors on the walls (for those sighted people that care) seem to drive people away.
So I’ve had enough tim to think about the different aspects of living here that are good/ could be improved and things that have to just go out the window and things that would need to be added to make this kind of set up attractive to both those living there and visitors.
First and foremost it would be a program for those with a diagnosed mental illness, and in order to be Medicaid and state funded would be subjected to the huge and complex amount of restrictions and policies that agencies under the state funding are made to follow. Since I don’t know anything at all about that, and having taken a social policy course still don’t understand anything about that, some or all of my ideas might not work at all within that framework.
However I’m going for it anyway.
The building would be a physically a attractive, clean comfortableassisted living type building. It would be like an apartment complex but with rooms for everyone’s use like activity room, sensory room, a dining room offices ETC.
This building would also be ADA accessible with elavators and accessible apartments which would allow anyone with a physical disability to live there easily.
There’s a place in MA that’s of course privately funded called Eichos. Which I’ll post about later as I love the place so much though I’ve never visited. In their model their treatment program is right on site. I like this idea very much and am going on the thought this would be a part of the project.
Anyway each apartment could be either a [ place for two residents to live or if someone wants a single apartment that’s good too. I’d say no more than two and I feel roomates would have to be matched somewhat carefully. Not putting someone really aggressive and unpredictable with someone with a lot of anxiety for example. As with here I feel roommate changes should be an option but not done as on demand as here. I think people should be encouraged to work things out, talk with staff in group ETC about issues rather than avoiding them but if a change is needed it should be able to be made or considered.
I think after talking with all my blind friends that have mental illness about what they would want/ look for in a supportive housing program that daily living skills should be included. Not as a training center, but as a part of learning independent living skills as someone with mental illness. From my research this is something stated by almost all the supportive housing mental illness programs that they encourage/ teach/ supervise skills such as cooking, shopping cleaning ETC. I would imagine though I haven’t yet personally talked to anyone about this that such a program would be very stumped/ reluctant ETC to have that same approach of teaching this to someone with both mental illness and another disability like blindness. I believe we’d need staff that felt extremely comfortable and confident teaching those with all kinds of disabilities these life skills as well as being knowledgable in the mental illness aspects of doing so.
For example, teaching someone how to cook would not only involve knowing how to instruct someone who is blind on how to best use different techniques to cook but also knowing a lot about things like anxiety, depression ETC that would go along with the learning as well as are just simply a part of the illness independent of learning these skills. It basically breaks down the seemingly frozen solid and frustrating barrier of disability services profesionals understanding how to teach these skills in the frame work of the particular disability but not having any clue and in my experience completely dismissing mental illness. Mental health professionals, the staff at supportive housing programs understanding the emotional aspects of learning and maintaining these skills with particular illnesses but not understanding, and being afraid to factor in how to teach to target both the mental illness and other disability.
So I propose that as I said staff should be able to teach such things as cooking simple meals, cleaning/ housekeeping, accessing transportation/ going outside ETC to a variety of people with a range of disabilities. I only know the experiences of being blind and how I have been taught, or attempted to be taught such skills. I think I’d have a better chance of success if someone figured in the whole picture of how I learn based on everything going on internally a big component of course is the anxiety and depression.
There needs to be enough staff to where participants especially at first are pretty closely supervised especially with cooking. No sense in the place burning down LOL! I wouldn’t be allowed to come up with something like this ever again!
But seriously as time went down people would either need less supervision or could have other housemates help/ supervise in a peer sort of way. Thisis a huge component too that people are socializing in such a way that they form a bond with their roommate and also constantly with the larger community, given a lot of flexibility with time for privacy and socializing based on whether you’re an extrovert or introvert and all that. But that the heart of the program is not staff acting like their above the people living there but that everyone is kind of on the same level and participants helping each other out to the degree that it’s safe and reasonable is very important.
I think there should be staff on site at all times but it doesn’t need to be the level of staff at an intermediate care facility like here. I think there should be a nurse/ doctor on call and that during the day there could be a nurse there to help people get used to taking their meds, checking in with people who have other health issues and just generally there to do nurse things. The nurse and caseworkers should I think be sure that the people in the program have a physician and psychiatrist and check in with them about their health and generally be available. The nurse could lead groups on health and willness or just generally be there.
Each person would have a case manager who would work with them on goals, progress and general case manager type things. I have no idea about the dynamics of an agency but I’d want something in place like good possibilities for promotion and staff trainings to keep people interested in staying, with as good of a pay as possible. So hopefully we wouldn’t have such a problem with staff coming and going at a ridiculous rate.
The therapy part of the program I feel should be somewhat mandatory but at a level that’s individualized. I think people who would live there should want to be there for treatment not just the housing part. I think that it would be helpful to have a variety of therapists that either come in or work close by that clients can see so if one therapist doesn’t work out the client isn’t stuck with them. Like I’ve heard of programs where there is one therapist and that’s it. But I think the sessions should be as in depth as the client is ready for. If someone just wants to work on some basic emotion management skills or wants more in depth process oriented therapy there should be that flexibility.
Like I said before having an offering of groups/ classes during the day to keep people occupied should they choose to be I feel is important but not mandatory. I think a huge part of the program should be about choice. If a person wants to ursue school, hobbies, volunteering, part time work ETC they should be encouraged to do so. And shouldn’t be locked in to being demanded to attend a certain amount of groups. Though I do think being told you have to attend say a once a week community meeting isn’t asking too much and is important for the sense of community.
I think the groups should be diverse. Because I like DBT from what I’ve experienced of it and heard from others about it, and know it can be applied to almost any emotional issue I strongly recommend it be taught. I think having some more open process groups is important to have people have a space for feedback and understanding how they relate to others and how to work out relationships. I think there should be groups specific to substance abuse, eating disorders, self injury and any other pronounced potentially destructive behavior. I minored in expressive arts groups. And I’d place our imaginary program near a university like Lesley or some other one that has a concentration in creative arts therapy. As such we would have art, drama, music and dance therapy groups. We could also have more informal “arts as thera’y” activities that use these same modalities just not run by therapists and more for a hobby/ expression. So dance classes, one on one or group music times, art classes ETC. I think the important aspect of this part of it again is the peer part. That participants would bring their talents to the more informal but yet still just as important recreational activities. So if someone knows how to play the piano and even maybe used to teach it but doesn’t anymore because they had a breakdown maybe they could start teaching people. I know for me slowly reconnecting with what I’m passionate about is so important and this would be an amazing way to do that.
Lastly I believe a sensory room would be important. A place to calm down and reflect furnished with things chosen by the community that envoke a relaxing state. People could then use this space when feeling overwhelmed or upset. Groups on relaxation or other coping skills could also be held here.
I have mixed emotions about the dining room. I mentioned it before but now I’m thinking if there was a dining room everyone (read Sam) would just go down there and never learn to cook. However I wouldn’t be so hung up on people needing to be able to cook to the point they don’t get food unless they cook/ buy it themselves. So there would need to be a balance between support and independence and support with that, and cleaning as well.
I feel all staff should be trained in nonviolent crisis intervention and any other regulations for such a position. There should be routine staff meetings to discuss the p person’s progress and the progress or issues in the community as a whole. I also think there should truly be quality things for the staff like supervision where they can really be honest about how things are going working there. Basically anything to try and prevent burn out.
In spite of wanting to be the most inclusive as possible there are always exceptions. I don’t believe that many of the people I live with would be good candidates for this program. I’m not sure it’s the right place for people so flooded by psychosis/ severe depression that there’s little to no way they could benefit from the oppurtunities of learning living skills, and participating in a community committed to being stable. I would not accept someone with a history of physical violence. And of course there are limits in terms of disabilities that I probably don’t even know about. It’s not a medical or skilled care facility so probably someone needing a ton of medical care wouldn’t be right. I know there are many places for people with both developmental disabilities and mental illness. I don’t know anything about the spectrum of those disabilities except that there is one, and so don’t know to what extent people dealing with this would be right or not. I think everyone should be evaluated case by case. That staff on the one hand shouldn’t be so afraid to think out of the box that they don’t see something they’ve never worked with as anything but a person in need with challenges they can possibly learn about as they go. On the other hand I wouldn’t want staff to blindly say they’ll except just anyone or to not know the limits of what the program can provide.
Ok now that I’ve gone on for like six pages! I figure if you’re not interested in this you wouldn’t have read past the first few sentences anyway. Anyone else have anything to add? I want to emphasize that in talking about additional disabilities I obviously used blindness as an example because well I’m blind. And my close friends are also blind and deal with mental illness as I do. However I really want to know about others with different disabilities and what they’d like to see in the program. For example I do want to say that for the deaf residents there would be an abundance of either staff that know ASL, interrpriters or both. And a sign language group for those participants interested. I feel there could also be some kind of disability support group either individual disability or collectively simply to discuss theeffects of various disabilities on their mental illness/ stability/ life. I hope those interested have enjoyed this fantasy. If you don’t like fantasy or want to talk about how unrealistic it is I’ll tell you sorry you don’t like fantasy. It keeps me sane especially when reality sucks. And yeah I know it’s possible not one piece of this is realistic. I still wanted to write it all out and share with the world.