Family and Caregiver Schizophrenia Discussion Forum

Unaffordable residential care


#1

My son is now 35 and had his first psychotic break at age 20. We have been lucky enough to be able to take care of him. But we know that most residential care is private pay and that insurance does not pay. And that leads to people cycling in & out of the hospital with really short stays.

So I got “mad as hell” and started The Living Assistance Fund. Knowing how hard it is to go through a psychotic episode and then have financial worries on top of that is something we are trying to help with. So far we have raised enough $$ to help two families. Not much, I know, but it’s a start. Everyone who has donated to help us is someone we know.

I’m posting here, because maybe you will help me spread the word. You can tell people we’re doing this. Sign up for the newsletter, follow us on Facebook or Twitter (links on our site). Read & repost my blogs (News & Info on the site). And of course,donate if you can. But really, I need other people who know how hard it is to get the care you need if you can’t pay for it to help raise awareness!!! Even enforcement of the Mental Health Parity act of 2008 won’t help this problem because residential care isn’t in it.


#2

I have seen the gamut of what is available to people who have reasonable, but not enormous means. Many places accept SSI, Medicaid or Medicare, and other available Board and Care grants to cover costs. Unfortunately, most of these places house large numbers of people and feel institutional, not offering a homelike setting with needed privacy and solitude for residents, and reasonable freedoms and choices of activities that residents enjoy.

I have considered the possibility of creating a small group home for individuals who need the structure of residential care. I think small is better, unless you can consider one of the high-end places - which I have never been able to do. I feel its pretty daunting tho, and can’t do it alone.


#3

Without question - totally daunting! That’s why our approach has been to help pay for care at places that already provide it. Currently we are working with McLean Hospital in Belmont, MA. The idea is that there’s plenty of demand and supply would start to increase if there were more ways to pay for it. Among other things, we are working on a more affordable program that will include a scholarship bed.

I definitely do not feel qualified to create an actual group home!


#4

in my opinion what mom isnt going to volunteer her time to help her child and the environment their child is in i think there is an army of volunteers ready and willing if only it were allowed ive seen these inpatient facilities and its a physical manifestation of the interest the caregivers have in them - resulting in a sterile institutional taking care of their basic needs of survival and nothing else (actually it was explained to me that the goal was to make the environment as unpleasant as possible for the patient in an effort to discourage some people from pretending to be mentally ill and using the inpatient ward as a little vacation while i understand that some people might try to do this i dont think the solution is to make the place as miserable an experience as possible just to discourage fakes those who are genuinely in there for reasons having to do with mental breakdown thats the last thing they need to deal with people trying to make their time their difficult and psychologically distressful they did nothing wrong . if thats a problem the solution is to have better evaluation to detect those people who are doing that !)

I think ( no i KNOW ) if moms were in charge of these places meaning if we were allowed to come in and volunteer to make them brighter more enjoyable places for the people we care about it would have a positive effect on their health so i genuinely am interested in starting some kind of effort to make these dark depressing places better there needs to be a lot lot of improvement but i know we could do it and its been something thats been on my mind for a long time an inpatient hospital my son was in had no recreation other than coloring books and a stack of magazines no privacy we can imagine ourselves there they dont care enough to and i think it needs to change message me if you agree and want to do something about it :slight_smile:


#5

I totally agree that many facilities are lacking. Not having the skills to tackle the quality of the facilities, I’ve been tackling the problem of access to care and not having appropriate financial means. And part of my thought process is that if we provide more $ for care, the care will also improve. So we raise funds to pay for care…

In fact, we are working on a new-style program that may be able to help more people have way better outcomes but adopting the PACT (Program for Assertive Community Treatment ) model. My understanding is that unlike other outpatient style care where the patient has to make & keep appointments, in PACT the team is responsible for the continued care after a hospitalization and they focus on getting the meds right and building both structure & skills as well as a community of caregivers and other support.

If anyone here has experience (good or bad) with PACT, I’d love to hear about it.


#6

This is what I wish for for my family: https://www.disabilityscoop.com/2016/04/28/family-driven-cohousing-home/22242/


#7

Also, http://www.cohousing.org/node/3154

I would really like to live in a community where we all take care of one another, belong, and can do what we need to do to get by in this world.


#8

I think the biggest obstacle for us is the fear that surrounds mental illness - much more so than many other disabilities.

My current solution is to have purchased a house that was previously a rental in a neighbor that could probably be described as ‘transitional’ - many rentals due to 2 nearby colleges. My son lives there on his own, and I visit almost daily. He pays rent with his SSI funds.

The biggest downside to this arrangement is that he isolates himself. There are no clubhouses or drop-in centers in the area, he doesn’t want to participate in the available day programs that require scheduled participation, and he doesn’t seem to feel comfortable just going to a coffee shop or something like that.


#9

thats the situation im in with my son right now too he recently got his first apartment hes been there just 3 weeks and he wants to spend a lot of time by himself even when there are opportunities to get out and socialize so i think he just wants to be alone maybe he just feels a little stressed out from moving and isolating himself is a way to deal with this major change in his life but every time i see him i encourage him to get outside get some sun and make friends with his new neighbors or at least open his door and curtains to get some sunshine .

I hope he does start making friend he has made 1 neighbor friend and there is a bus that picks him up from a neighboring town 2 times a week to spend the day at a day activity center with other people who he can relate to he used to go to this place every day and has friends there so i guess hes not absolutely isolated and he can always come over if he feels like having company and i dont want to pressure him or nag him to do things he doesnt want to do and hes still adjusting to a lot of major changes right now but still getting a daily dose of sunshine i think can only help his mood even if he does feel like being alone

how long has your son lived in his own apartment ? does he have social anxiety or does he want more of a social life , it could be possible to have a day activity center pick him up but if there is an arrangement to come pick him up a few days a week he would have to be up and ready to go in the morning on those days for our son its tuesdays and thursdays and we remind him monday and wednesday nights that the following morning the van will be picking him up it is good for him to socialize and im glad he can do that a couple days a week but think of some things he could do around town we have a small gym downtown that hes seems interested in joining and it doesnt cost too much exercize releases feel good brain chemicals and he might make some friends too and work toward self improvent so would help self image is there a gym or YMCA nearby ?


#10

My son has been in the house for about 16 months. However, the first year was full of turmoil, as a effective med had not been found yet.

The day programs around here expect daily attendance for a full day. He just doesn’t seem interested in that. Also, he seems to sleep quite a bit at this point. He joined the Y for a while, but then stopped going when he was struggling, and hasn’t wanted to return.

He does pretty well when we go out somewhere, whether to eat or for an appointment, or to the park. Since he currently needs to get blood drawn every week, the women at the lab are getting to know him, and clearly enjoy seeing him every week. Maybe after some more healing, he will start feeling like getting out more.


#11

So, in order to get to the point where your son(s) could live on their own, what kind of treatment did they get? I think there are actually two sets of problems.

  • Hospitalization is for a short amount of time. On discharge, the patient is not necessarily on the right/best medications and probably doesn’t have much structure in their lives. Most people do much better (i.e. avoid future hospitalizations) if they get residential care at this point for about 3 months

  • Once relatively stable, individuals with schizophrenia still need more supportive housing - something like the disability co-housing shared above

My focus so far has been that first one. I’m trying to make sure more people avoid cyclic hospitalizations so they can get to the point where they have the second problem. It’s actually helpful to realize that you folks are mostly dealing with #2 (if I read this right).


#12

Oh, heavens, my son had 6 hospitalizations last year! The first problem is very real! Unfortunately, the residential options in my region are limited in number and not very well suited for young adults, and are not very focused on advancing to independent living.

He has lived in 3 residential settings in this area:
The first was very large. It is considered one of the best options. There was not an option for a private room. Meals were served in a cafeteria. He wasn’t even allowed to make himself a cup of tea. Housekeeping could and would let themselves into rooms whenever they chose. They said they had a program that would work toward independent living, but they would not ever consider him for that unless he had lived in the residence for at least one year. Many of the other residents were elderly.

The second was decided on when the hospital was going to discharge him and I had no place else for him to live. It housed a maximum of 60 residents. No private rooms. Many of the residents were dual-diagnosis with substance abuse, or had that as a primary diagnosis. The staffing was minimal, it was very dirty. While my son was living there I replaced most of the common area furniture by purchasing things at garage sales or thrift stores. The nurse forgot to give him one of his injections, resulting in serious psychosis, which then was followed by him getting beat up, and then all his belongings destroyed.

The third was what is called in our area a ‘Level 2’ facility - basically a nursing home with a locked unit. No private rooms. A lot of elderly people lived there and were never going to live anywhere else. There was supposed to be some kind of therapeutic programming. There wasn’t.

I think my son probably WOULD be better off in a small group home that truly feels like a ‘home’, where he could socialize… But that option isn’t available in my area. But I hope I never have to consider moving him back into what is considered a ‘group home’ around here every again.


#13

Living with other people can be the best experience ever or the most stressful drama filled experience ever depending on who your roomies are and how easy it is to live with them are they friendly or hostile toward you easy to get along with? scary? and for people who are going through so much physically and mentally you really really want to avoid the roomies that bring drama and create stress , there was a group home my son stayed in very briefly and there was so much fighting and drama and yelling he just couldnt take it and almost had a nervous breakdown and begged to be moved so thats one thing to think about how will they all get along toether are their personality clashes

sometimes its very hard just sharing a living space with one other person that your in love with lol so with co habitation having a group of people that really get along and mesh well together is important or it can be stressful for everyone and if that happens it could get really bad really fast … and privacy and having their own space or sharing a bedroom with someone that they really really really enjoy being around . but if you can manage to create and maintain a living environment that works for everyone and have a group of people that get along with eachother group living can be good for a lot of people but also like you said residential can be so expensive and its not a one time bill its ongoing but i think its great what your doing there are some people who would do best in a positive group living environment with a casual family type atmosphere .

keeping these places more affordable is really the solution you can help more people with less amount of money if these places charged less by using as many volunteers to assist instead of paid employees it can keep the costs down for everyone and medicaid might even be willing to cover it then your really in business


#14

Wow, so it sounds like those residential “programs” in your area were really barely nursing home care. Does not sound like there was much treatment like tuning medications and working on stabilization & structure (the first step toward independent living). Did I get that right


#15

We have never experienced long term residential but two times hospital short term in my sons case not changing meds but just adding additional medication to what he was already taking each time in so he ended up on 3 different psych meds and then also a monthy shot on top of those which made him not even able to think clearly and he could even finish a sentence he would just forget what the topic of discussion was but we did get him off the shot at least .

Theres a lot of dysfunction in the mental health system there needs to be more monitoring of these places and more monitoring of everyone in the system so many people are caught up in it and not everyone has someone that cares about them to challenge their treatment . I think its very very common for a lot of residential homes to become basically nursing homes with a lot of people over medicated just to make them compliant and quieter and not as much less violent than just easier to manage a condition that is more convenient which of course is a terrible reason to medicate someone but it happens a lot so a lot of families dont want to put their loved ones in a long term facility because of the lack of quality care , monitoring of care , adjusting meds training and programs trying to help them have the best possible lives with the goal of living independently.

so the inability to pay for residential living is just one of the issues more important is the lack of trust in the quality of care but i think that can easily be fixed by allowing family members to be involved and monitor that builds trust and word of mouth advertising is everything . Trust and quality are probabally greater issues that families care about more than expense we love these people very much


#16

Yes Monica, there is not much available in the way of “programs” in my area:

The first place was an Assisted Living Facility (ALF) I think there were 160 beds. Just given the size, he felt pretty lost. They provided transportation to a day program, bu my son would not go. He might have gone sometimes and gotten to like it if that had been an option, but it wasn’t. He probably would have done well in the program designed to support transitioning to more independent living, but it wasn’t an option until he was in the main facility for at least a year. (They had several apartments sitting empty because of these requirements.) They administered meds, and did assist in monitoring symptoms.

The second place was a Residential Care Facility. (RCF) I think there were 60 beds. They also would provide transportation to a day program, but my son was pretty unstable at that point. Staffing at the residence was minimal - for one period of time he was there, they did not have the minimum required staff. They administered meds, tho didnt want to give him shots, and messed that up when he was supposed to be getting shots.

The third place was a Level II skilled nursing facility (SNF). I don’t know the size, but there were maybe 30 people back on the locked unit where he lived. There was a small amount of programming going on there, but not much, and the staff didn’t seem trained. There was full time staffing of a nurse trained in psych medicine, his meds were administered as prescribed, and they provided feedback to the pdoc.