long day no therapy

Today I really really needed therapy to discuss everything going on with my thoughts about wanting to move out, family ETC

But there was no therapy because Jonathan left early.

I wrote assisted living places in FL, MT, MO, and a couple other states. The MA one Jess is gonna call for me because I’m anxious about it.

Tomorrow is care plan. And will hopefully talk to the dietician.

facilities currently existing for those with variety of disabilities under sixty five: Illinois supportive living, and specialized mental health Rehabilitation facilities others in various states

Important links all places so far serving those under sixty five/ disabled

IL

SLFS for under sixty five

www.friedmanplace.org

Mary Bryant Home

http://www.marybryanthome.org/

Edens has locations throughout IL

http://www.edenslf.com/about-us

Gateway Peoria IL

http://www.gardant.com/gatewayrivercity/

 

 

SMHRFS:

Albany Care

www.albanycare.com

will link to others/ others in article.

 

 

Other states

Rockhill Manor

Kansas City MO

http://www.rockhillmanor.com/

The Taft Home

http://www.tafthome.org/

Faren care center springfield MA

http://www.mercycares.com/farren-care-center

Ridgeview Origon

http://www.ridgeviewassistedliving.us/id2.html

 

While those over sixty five seem to have an abundances of choices regarding their daily living arrangements, the same can not be said for those with various disabilities under sixty five. I’m not saying that because it looks like there are a lot of services that this means this is easy for them. I don’t know how accurately services are portrayed on their sites, and from my research many cost a lot even with medicare and as with so many services a lot are  private pay. But just based on the endless research I’ve been doing there seems a lot to choose from.

 

Similarly, when  googling “assisted living adults with disabilities,” a lot of things do come up. And some sites will say “for people with disabilities” but a paragraph down will specify for developmental and intelectual disabilities only. I truly believe all people with disabilities deserve access to this kind of care and I know why a lot of focus is for that populartion. And again, it does seeem like private pay is the norm so people could have just as hard of a time geting into these places as anyone. I’m saying that there should be programs for all disabilities so everyone has equal chance to at least explore whether a safe,  holistic, residential community could meet their needs.

 

What is available for those with disabilities (not including DD/ID) is quite  limited. There are maybe a few group home programs per state. With each group home holding around six to eight residents. It is extremely difficult to get into these places, to even get into the devission of mental health, as an example is incredibly hard.  Some states offer adult  foster care, but some reserve this for  DD/ID population.

Each person is completely individualized. Many even with prounounced physical, sensory, or psychiatric disabilities very much value “independent living.” And are able to use community services, and friends and family to make things work. It bothers me though, that “independent living”  seems to be the one size fits all standard for everyone. When it  really shouldn’t be.

For myself and   almost all my friends,  “independent living” amounts to  an isolated living situation. Many do not have friends or family or if they  do they’re an unreliable or difficult source of support. Difficult as in lacking in emotional support,  bringing their own baggage into an already difficult situation. Or simply unreliable.

Community services in many areas/ states/  towns are incredibly lacking. Even when established that such services are needed, they’re provided sporadically and when things aren’t working out often the person with  the disability is blamed for “not  trying harder” when the people don’t have any idea about the additional  needs this person has, and besides they shouldn’t be  blamed for service providers dropping the ball.

The effects of people living in these conditions from my experience include: Difficult maintaining any kind of consistent good quality of daily life. Unable to get or prepare  healthy food, either lacking the motivation/ skills/ abilities due to general disability or constantly changing pain levels, depression levels ETC. Unable to have a clean house, get to appointments, being in significant physical or emotional distress for days or weeks and no one knowing. Isolation, inability to get meeded medications. This then could lead to frequent  medical and psychiatric hospitalizations, only to be returned to the same unhealthy environment, suicidal thoughts, atempts and even completed suicides.  Homelessness.

 

People say that society  has an obligation to protect children, the elderly, and those with disabilities. Of course we know there are huge gaps in services for all three  populations. I guess I’m pretty naieve. I always thought people with disabilities, particularly physical and sensory ones which would make living on the street even more dangerous, were protected from such a fate. Apparently not. A good friend of mine was homeless in the past and I’ve heard of another person, blind, who has been homeless in the city for three years waiting on housing! This should not happen!

 

I want to go over the two types of facilities that I’ve lived in for the past five years that are open to those under sixty five with disabilities. In my heart all I want is for agencies/ advocates and others in positions to do something about this, to consider replecating these models of care that have been working well for many years.

 

 

The first is supportive living. In most states supportive living actually means a situation where a person is in an apartment (usually a one person apartment) and they have occasional support services coming in. It sounds quite lonely.

This is different. Taken from the website:

Illinois developed the Supportive Living Program as an alternative to nursing home care for low-income older persons and persons with disabilities under Medicaid.

By combining apartment-style housing with personal care and other services, residents can live independently and take part in decision-making. Personal choice, dignity, privacy and individuality are emphasized.

So by some policy magic, they were able to find a way to get Medicaid to pay for services that normally would not be covered. That’s the most amazing part of this. And I’ve heard it takes a long time! Like months and months behind on getting paid. Which is why they have a variety of funding sources I.E medicare, some private pay, ETC.

So a lot of these are for seniors.

The one I moved to is Friedman Place.

www.friedmanplace.org

Another SLF for the blind is the Mary Bryant Home

http://www.marybryanthome.org/

And folks, those are the *only two places for the blind in the United states!

So not surprisingly, people like myself will come from all over the country to live there. I moved in 2012 from Massachusetts all the way to Chicago. Hardly thought about Chicago until finding out about FP. My best friend moved later that same year from FL.

As the definition states this is a community. It’s not a nursing home. It’s for 22 and older. People aren’t just laying around doing nothing. I helped co-lead a women’s group, choir, consulted with the social worker on a lot of stuff like mental health support in the facility, I worked with the activities department on a lot. I was very busy! They have stuff going on all day, different games, groups, music stuff, religious services, shopping every week, animal assisted therapy (cats, a program I helped start).

People also go to school or out for volunteer work, some work, ETC.

The apartments are really nice. I never thought I could ever live in an apartment. I just was overwhelmed by the thought of having to live in and run my own house. I couldn’t imagine who would live with me, budgeting money, cleaning, cooking, ETC. Whether I would have always had that stance, or if a lot is due to my actual mental illness I’m not sure.

But just the freedom I felt to be able to have my own place, have everything the way I wanted it, two computers, all my stuffys, my own couch ETC. I felt secure. I knew that staff was there 24/7. The building was locked at night. I was never alone with everyone around and all the activities.

The food was really good. The staff, I had personal favorites, were very caring. There were things that could have been improved during my stay but it was really an amazing couple of years.

The one thing that bothered me and does others, and why I’m not living there now, is they don’t really know how to address psychiatric disabilities. I’ve struggled with mental illness all my life as you know from reading my blog. I left MA where I was used to an extremely supportive therapist. I was told they had good mental health services here, it turns out not so much. So I kept a lot to myself and stuff wasn’t managed well at all.

So after my first psych hospitalization I knew, from knowing other residents living there, that if I went back to FP I would just stay in crisis and be in and out of the hospital sadly. I did not want to move but I knew I couldn’t be emotionally safe from my illness there.

This is something I really need to understand and address with somebody who manages the SLF program. I don’t understand why they’re unable (and they and other SLFS now say this) to accept residents with psychiatric diagnosis. Or they say you can have a diagnosis but all your services for that need to be outside the facility. How can you treat half a person? Because that’s what it is. Even if they’re coordinating with outside services which didn’t happen at FP at all, you’re still treating half a person.

It’s 2017. We know that so many people have psychiatric disabilities. That means people they’re seeking to come to their facilities, likely will have some kind of life long psychiatric disability. I can totally understand and would want appropriate limits to be set about how severe the issues are that they can work with. But I think that should be determined on a case by case basis instead of just saying no across the board. Because honestly that’s discrimination. And more to the point, as I said it makes no sense That’s the huge problem I have with SLFS. Because then what you have is people downplaying or not even saying they have a mental illness just to get in the door. Because believe it or not they literally have no place else to go!

But moving on to the positive, lucky for me I got hospitalized in IL. No pother state has psychiatric intermediate care facilities, now known as Specialized mental health rehabilitation facilitys SMHRFS

I can’t find a nice exact definition of these facilities like for supportive living. So I’ll just summarize.

Formly called intermediate care facilities, or psychiatric nursing homes, these are long term care facilities where me those with mental illness can receive therapy, medication management, nursing care, and be in a community of others who share their diagnosis and experiences.

I’ll post some links to some of these facilities.

Brynn more Care

Albany Care

www.albanycare.com

Abbott house

http://www.abbotthousenursing.com/

The Clayton

http://www.claytonhome.org/

Erasing a few bits of stigma/ misconceptions about these places.

They aren’t locked institutions. As in unlocked. People can come and go as they please. Some people as part of behavioral management are “on restriction”, but that only means they can’t go out alone. They can go out with staff, and there are planned trips for those on restriction to go out every day. No one is locked in.

These aren’t institutions. You’re not like thrown in this big place and not paid attention to and just left to get worse. In fact they work as quickly as they can to get a care plan going and get things back on track. People come in through being reffered by a hospital. You talk to a screener at the hospital. If you’re dealing with anything like severe depression/ anxiety, schizophrenia, other mood disorders, anything that’s chronic you’ll likely get in very easily.

They ask you for your input on everything. I can’t think of any situation where things are decided about a person behind closed doors without their knowing, or ability to ask questions and get answers.

What I love about these places is everything is under one roof. As much as I hate the selection of doctors it’s a good thing that they come to the facility, medical and psych. You have a right to change your doctor if you’re not happy with them. Nursing is 24 hours a day. They manage and hand out meds, make sure people do take their meds.

Certified nursing assistants are always on the floors. There’s case management/ mental healthcare support 12 hours a day. The case managers work individually with people, about thirty clients they’re personally responsible for plus anyone else. Oh, forgot to say these places can be unnerving in how many people they serve. I think the lowest is like a hundred. Mine is 417 capacity. I personally think that’s way too big as do the policy makers, they’ll hopefully be changing things and sizing the population way down. That said we’re not all at any place all at once.

So we’re pretty spread out over seven floors, five floors being with residents rooms. There’s an activity floor and some really dedicated and kind activity staff. People go to school or work, go to day programs that the facilities are very coordinated with. Hospitalizations are incredibly efficient if you compare it to an individual attempting to go to the ER. Basically all the waiting is done at the facility and stuff is coordinated by staff there and hospital staff.

People do make good friends here. You always see people hanging out and doing things, and even people who have moved out coming back and visiting.

There’s a lot of focus on discharge planning when the people are ready, that’s always being looked into. So it’s not a jail or some ghetto terrible place.

The food could be better. Friedman food is way better than Albany food!

I have improved so much in the three years that I’ve been here. I’ve heard of other long term residential places that sound wonderful but they’re private pay. Was looking at a great one in Boston today and it’s 7 thousand dollars a month! Who has that kinda money.

So the fact that they figured out a way for Medicaid to pay for this is really amazing if you think about the limits of Medicaid.

I got my meds under control and stable. I’ve met some really good friends, two I know will hopefully be friends forever, one is basically a big sister. I have had the second “best therapist” for my whole life. I feel very secure knowing there is 24/7 staff, that for a good part of the day there are mental illness aware people around, and just being in a community where deep down we all share having issues that feel out of control at times, is refreshing.

My mission in life right now is to fight like crazy to get more facilities open, either SLF type, or SMHRF, or I could see the two combined in some ways. Like with SLFS, there’s a hesitation in taking those with additional disabilities to mental illness. They aren’t saying outright no to everyone, but I had to be very convincing to be sure I got in somewhere and a lot rested on the clinical director’s creative and person centered attitude.

I want to end with posting links to everything I’ve found for people under sixty five so it’s all in one place.

IL

SLFS for under sixty five

www.friedmanplace.org

Mary Bryant Home

http://www.marybryanthome.org/

Edens has locations throughout IL

http://www.edenslf.com/about-us

Gateway Peoria IL

http://www.gardant.com/gatewayrivercity/

Other states

Rockhill Manor

Kansas City MO

http://www.rockhillmanor.com/

The Taft Home

http://www.tafthome.org/

Faren care center springfield MA

http://www.mercycares.com/farren-care-center

Ridgeview Origon

http://www.ridgeviewassistedliving.us/id2.html

Seeking stats/ data collection savvy individuals to begin adults with disabilities assisted living project

Hi everyone,

I’m seeking anyone passionate about those with disabilities receiving quality services. Particularly in the area of living arrangement/ situation.

I’ve spoken before about the huge problem of lack of such services for those under 65 with various disabilities. Clearly there is a need, as I and many know on an emotional and personal level. People are being forced to make difficult choices around what services they are, which often don’t begin to meet a person’s daily needs. An assisted living community, as shown to be the case for those over sixty five, is incredibly useful as all services are coordinated and under one roof.

The few communities that are out there, (I know about IL supportive living, as well as IL specialized mental health rehabilitation facilities) are quite successful. This proves a need for such services, as people in need will travel across the country to access these services.

To be taken seriously by any organizations and associations the issues need to be written out in languages that is professional, with realistic possible solutions. First and most important is a description of the problem with data to back things up.

I imagine that if a survey were taken the numbers would show the need for such services as we know on an intuitive level to be the case. I don’t know how to design such a survey and present it to the right sources in order to get the best possible data.

If a group of other consumers would be interested in being part of this project it would give weight to the seriousness of the problem. This is another beginning step finding people who are commited to seeing action taken.

I’d love suggestions on where to try and connect with such people besides of course blog readers.

Most importantly, we need someone to advise and support the creation of a survey and the data collection process.

If people have ideas about where to find such people I would appreciate it.

The most important thing is approaching whoever we find as a group. Me writing someone and asking to help with a survey won’t make as much of an impact as it would with a whole group behind it.

I believe if we do this in a step by step manner we will at least get people’s attention around the seriousness of the problem.

Quick saturday update

Today was ok. Prodductive.

Connected with Massachusetts blind organization bay state counsel of the blind. Really nice people.

Did my volunteer work.

Other than that played with my dolls.

I’m sad to report signing bunny Judi has some permanent injuries. Three broken fingers I’m way too rough with her.

Or the wire isn’t strong enough to handle constant bending I don’t know! She was one of the first bunnies Judi Harrison made.

Will tell her what happened as feedback for the design but am sad too. Only had her about two months. Like the homemade stress balls that broke when I got them I guess I’m just rough on toys.

Not much else to say today.

Quiet day no Mr. J that rhymes!

Hey

So today was pretty quiet.

I really felt good sending my e-mail to Mr. J last night. Outlining everything I’ve been thinking about around moving pros and cons and everything. Was really hoping to dive in and start talking today. Unfortunately court ran late. He goes to court on behalf/ with residents and apparently does a good job. Knows the system judges process etc. I can imagine he’d be a killer advocate for anyone dealing with criminal issues brought on by their illness.

As much as I wanted to meet with him I one hundred percent am ok with him needing to do this stuff. Any therapy we do is a huge privilege that he doesn’t give others, though I’m sure he does other things that he can with everyone here. So I’ve gotten to the point where I’m not upset when this happens. Maybe I’m just doing better too.

It was disappointing.

I talked to my mom a little. She’s ok. There was a big financial issue post office mishap a few days ago that got resolved.

I talked generally about hating the money issues around here the food and no solution for that, and just missing the family. Missing the grandparents that are quite elderly, the pets, which the dog is having a lot of health issues and just knowing I’m missing out on the good parts of my family every year that goes by.

I’m sad about that. And that she doesn’t get my illness. She said she doesn’t understand how I graduated with honors with a mental illness. I said it doesn’t affect your intelligence! Well mine doesn’t anyway. It does affect motivation which she pointed out and I said honestly that I struggled very much with that my last year of college. The disability coordinator pulled me through even saying if she’d just met me she’d question my accidemic abilities and being able to handle school. But she knew the ups and downs I had been having.

Anyway so yeah hard to hear things like that from her.

Anyway other than all that have been just doing e-mail and listening to audio books on the computer. And searching for long term care resources in MA. Not finding much.

Am thinking a possible route to go is to get information from IL advocates on the success/ need for these places to exist and then showing MA advocates. Hoping to try to put the idea of replicating/ expanding services they do have in MA to include an SMHRF type facilities, in addition to group homes and adult foster care. So we’ll see.

That’s it for now. Will be doing some reading tonight of Cathy glass new book even though I’m also reading another book as well.

feeling so stable in your recovery that you want extra things in your life

I just wrote Mr. J a long e-mail around my thoughts about MA. About the reasons I want to leave IL and move there. Some had to do with missing family, people, pets. People/ pets that will likely pass away sooner rather than later. Feeling like not spending time with them will be traumatic for me when they die. Missing the good parts of my family life wanting to live closer than a plane ride away, but not at their house.

Money is a huge thing. Can not stand getting $30 out of my SSI having to constantly ask my mom for money when they’re freaking out about financial stuff anyway. I would think even if I lived in a group home I would have more money than here. Certainly better food. One fix for the money thing would be moving to Gateway SLF here in IL and being able to save money and have better food so wouldn’t have to spend money on that. Then we could save money for visits back to MA and my parents wouldn’t have to pay for plane trips. I guess that could be the middle ground if absolutely nothing comes up for MA.

But the other reasons that I want to go back. They’re not essential. They’re things I want to enrich my life. Volunteering at hotlines, particularly Samaritans and I know I have lots of other choices too. That’s just not available in IL. The peer recovery movement is huge in MA. Like incredible. They transformed a previous state hospital into a “recovery community.” I miss the creative holistic culture of therapy out there. Think lots of Jonathan types around! I want to be in a place where I can be given half a chance around learning to sign and connect with in person help and hopefully friends around this. Have heard from deaf friend that there’s a good chance that could happen.

I realized something when I wrote this e-mail. That I’ve never in my life felt so stable that I’ve been able to think about extra things in my life. Added perks. Things I don’t need but things I want and possibilities. Me coming up with possibilities that don’t involve people trying to ask me about my future and feeling totally stuck and overwhelmed. Or really wanting to do something, learn something ETC but the process being so difficult because I couldn’t process how I process. So in the end though there were good things going on I couldn’t fully enjoy them there was always this conflict and having to keep feelings in.

I don’t feel that right now. I feel calm. If I have to live at Albany for the foreseeable future until I fight the State of MA to build an SMHRF or two, with a whole group behind me of course! Then I will. I have a good life here. If I have to move to Gateway and stay in IL I will.

That said stability is the point. If I were to move to MA and my stability went out the window, the reasons for moving there wouldn’t matter because for awhile I’d be back to a life of taking things one day at a time, possibly fighting for services and rebuilding my sense of self again without Jonathan or the others who have helped me get to this point!

So there has to be an extremely high likelihood that I’d be getting the same supports that are keeping me stable here out there. Or like I said there’s no point.

It’s a great feeling I’ve never had it before and I feel like I’ve been given something extra like I said. An emotional and mental bonus. I’m just enjoying the feeling. If I lose it I know I still have a solid ground of stability for the moment. If I’m able to somehow find a way to get more without risking my stability I’ll be very happy.

exhausted today

Am just very exhausted today!

Had a really hard time sleeping last night. Was very restless going from book to book on my player eventually listened to some of a book I’d recently finished and finally went to sleep. Had long morning nap and slept really well but was still tired in the afternoon. Somehow decided to keep myself up and did stuff like e-mailing different people was on FB ETC.

Was thinking about the same stuff last night as ever how to best save money, going to Peoria versus back to MA, what if I decided to live with my parents and just pay rent from my SSI? Services that were around to help ETC

So yeah my head’s a mess I’m sure Mr. J will put everything into perspective.

Also got bad news about a friend’s situation, a close friend and that was very hard to deal with.

Hopefully tomorrow will be better. A new cathy glass book is coming out so actually it will!

busy day: Going to Jess’s school, long ride home, and other things

So today was a very busy day. First time I’ve been out since I got this cold.

Jess was fine with going on public transportation though it would be a new route for her because she wanted me to rest. But I firmly insisted on taking her. She seems to be ok with the bus ride to therapy but don’t want to push things.

Being at the school was great. During the bed bug crisis Mr. J gave me these super expensive headphones! They like cut down on half the noise in a room which is awesome to begin with. So I got to listen to a book on my player and have half the noise in the crowded room with people doing testing and tutoring and stuff cut down.

The worst part of it was going home. We left at three thirty after sitting outside for some fresh air much needed. We didn’t get home til quarter of five. I guess I haven’t been doing paratransit much as I’m totally not used to the long rides. Jess claimed that we’ve had longer rides but I can’t think of one! I was very antsy and had to really go to the bathroom because I didn’t go before we left.

But first we stopped at Karen’s. She was in a very patient relaxed mood which was nice. I told her about my hard morning itching and anxious over any little mark. And how I thought I saw a bug but it was a piece of toenail LOL!

She said this was a totally normal reaction to this trauma and she went and called one of the really good nursing assistants on our floor who has dealt with this in her own home extensively. Karen promised that we’d continue to keep an eye on our areas and check the beds. I told her Friedman used to do this weekly, or twice a month probably don’t anymore because everything’s cut. But she agreed it would ease everyone’s minds.

Of course she did check and we’re bug free!

So that was that taken care of. While we were there talked to Karen about my stomach issues how bad the food is here, the snacks how weak I get ETC. At one point she said should we be checking your blood sugar? I’m like no that’s ok!

She said that the dietician that does come in once a week would be a better person to talk to. She also thought that nursing should have a bigger role in dietary stuff nutrition and a hand if able in what food we get. But that change will probably take forever!

I’m happy to talk to the dietician but I’m skeptical of how much she can be helpful. I’m also eager to switch doctors so I can have a better conversation with one about this and not be totally annoyed.

Other than that it was an awesome day!

Really wanting to start a group for anyone who lives or has lived in MA around mental health

I’m not sure if I’ve made a specific post about this yet.

As I’m considering looking into what MA has to offer I feel strongly that making connections before even seriously considering things is very important. Sites that advertise services always look so good in theory. It’s vital to talk with people who have been there. Talk about specific issues like how hard getting services is, specific recommended agencies/ people and other things.

All the facebook groups I’m on deal with everyone from all over the world. Which is great but more and more I’m wanting to focus on the state I’m considering moving back to. Especially as when I was there I really didn’t know much about the mental health system as such. Plus it’s been a few years.

To widen the possible membership I’m including others with any disability in the mix. Because I’m interested in the disability community in general there as well. For example would be very interested to link into the deafblind/ deaf communitys.

I am also including those who have moved but have experience with these issues when they were there. A good friend has provided amazing insights and resources and she was getting services there many years ago.

I’m hoping I can find enough people to start an FB group or group on groups.io

Please pass along or comment.