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

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