Are there residential group homes in the U.S.? And your exp. when needing more care.

[Kati]

Thank you for your responses, they mean a lot.

@barbc56 - unfortunately, because I'm technically still married and fall under my husband's income as his dependent, I don't qualify for most social services. (I keep calling different services and get the same answer.) Same with trying to get legal help for a separation agreement/divorce - I don't qualify for legal aid, but I can't access my husband's income to pay for legal help.

@Misfit Toy - I live about 45 minutes NW outside Philly. If you've had anything/anyone who was helpful (docs, services, etc), please feel free to pass it on. And I second the absolutely useless home health services. Right now, I've got 3 people a week coming in, but no one who can help me to appointments, shower, pick up meds... Instead I've got a p/t who tells me to "keep walking" (duh), and a psych nurse who takes my vitals and asks if I have any self harm/suicidal thoughts. Every.Week. I feel like they're stealing the energy I have, but that if I don't go along with it, I'm being a non-compliant patient.

I am considering a voluntary admittance to a mental hospital, but I'm afraid my physical state will decline and I'll be treated badly/with suspicion for psychosomatic illness. I just want to sleep for a few weeks without being woken up by a screaming child, an asthma attack, or endless questions. A mental hospital seems to just be trading one bad situation for another. I don't know. :-\

OMG @GypsyGirl your situation is horrible. What kills me is that people sent out to help are not providing an ounce of help. I mean, you got vital signs, you can stand (probably barely) you're fine, right?

While I don't really have any sound advice for you, I am offering a shoulder to lean on and an ear to listen.

Governments sending support staff to 'help' have no clue what to do. Here locally we have a ME/FM clinic. Their services include 'self-management support groups'. If you are unable to join the groups, or if you are unwilling to go and come back home weekly with a crash from that exertion you are deemed non-compliant or combative. For a brain-fogged highly noise sensitive population, definitely this clinic caters to the mildly affected and leaves the high majority of patient who is already self-managing, has done so for decades, behind.

We need real treatments. We need patient-centered care. We need science. We need sensitive agencies who will send real help.

My very best wishes.


P.S. Every area of the world needs a Dr Peterson clone.

 

[Misfit Toy]

@taniaaust1 -You are not serious, right? i know that this illness brings people to desperate measures. I am there and have been there. Jail in my mind...is the worst place to go. I always watch shows on jails...for some reason I am fascinated by jail documentaries on netflix. They are loud, noisy and you would be in with some truly crazy people. And they rarely take people seriously with illness either. I see this all of the time on these documentaries.

Ugh..what this illness does to us makes me sick. It makes me sick.

I want millions of dollars so I can open a home for those with CFS. I am not going to give it to help the disease (as in, try and get more research) it would be pissed away. We need help NOW. Now for the millions who have no where to go, nowhere to be, who are on deaths door or are just so sick.

The other night I was thinking of this pipe dream and how I would have the whole place sound proofed. It would never be completely ideal, but it would give shelter from the storm and everyone would have their own room, ear plugs, food and help. HELP. Care, a nurse to get them what they need...a shower, and others to relate to.

I can dream......

 

[Daffodil]

@Misfit Toy ..thats interesting..i am also obsessed with jail documentaries like locked-up "raw" and all the rest. in reno, investigation discovery is all i had on tv and i watched that stuff too much and noticed myself having strange dreams and getting depressed lol

i also love love love true crime shows.

sorry to hijack thread

 

[GypsyGirl]

Guys, thank you so much for the heartfelt support you've been posting. I would say "you have no idea how much it means", except you probably know exactly how much it means.

I've been very disheartened by the way things are playing out, and just hearing from folks on this forum gives me some strength to keep going.

Can you get a social worker or another who may be able to pull some strings or know of other options you may never otherwise find out? I think we get paid less attention too if we are advocating for ourself.. people don't believe how ill we are.

That sounds truly terrible and something you don't need, that excess stimuli would make me very sick. Can u ask for another p/t on the grounds your current obviously don't know a thing about ME/CFS or send some good info to her heads on ME/CFS pointing out this is unsuitable?

I've spoken to a few different social workers, and they've also been checking their own resources and giving me referrals. They've tried, but have explained that I fall through the cracks for available services. Some of them have tried very hard, and I can tell it upsets them to not be able to help.

I can request another P/T, and will if I feel this one is causing harm. I'm giving him a "trial", though he doesn't know it. (Ha!) I try to give people a chance and educate them on my abilities and lack thereof.

@taniaaust1
I want millions of dollars so I can open a home for those with CFS. I am not going to give it to help the disease (as in, try and get more research) it would be pissed away. We need help NOW. Now for the millions who have no where to go, nowhere to be, who are on deaths door or are just so sick.

The other night I was thinking of this pipe dream and how I would have the whole place sound proofed. It would never be completely ideal, but it would give shelter from the storm and everyone would have their own room, ear plugs, food and help. HELP. Care, a nurse to get them what they need...a shower, and others to relate to.

I can dream......

I love that dream. A home for CFS-ers could basically work like a quiet college dorm - everyone has a space, but there's ability to socialize with people (who are going through the same thing). I would move in asap!

If I recover in any way, I'll be channeling my frustration & anger at The System by raising a huge fuss about the pandemic of invisible illness. Invisible illness, my ass. It's very visible; only the right people aren't looking. I intend to make them.

 

[jimells]

Someone here told me there wasn't government paid support services for the severely disabled in America (and of cause severely disabled cant work) and I've been trying to work out how these people then survive if their support services aren't some how paid for..

So am I. Two years ago, while I was still fighting for disability benefits, I qualified for "Medicaid", which is government insurance for extremely poor people. I needed help with getting to the grocery and doctors appointments and dealing with doctors. I was able to get help from a "case manager" who worked for a private agency. Medicaid paid the case manager fees. It was a huge help to have a case manager, plus she was a nice person to talk to. Even then I only qualified for her help because I had a mental health diagnosis and I was able to prove to the state authorities that I was disabled.

Sorry. I know this doesn't make any sense, but it's true. I qualified for Medicaid only because I was able to prove to one state agency that I was disabled (after a huge struggle), while at the same time I was denied disability insurance benefits by a different state agency.

In the US, first a person applies for disability benefits with the federal Social Security Administration. SSA forwards the application to a state agency, the "Disability Determination Service". The state DDS hires various medical consultants to reject almost all applications. The application then goes back to the federal SSA and takes years to make its way through various appeals and reviews and other excuses not to help people.

So anyway, after six (I can't quite recall anymore) or so years I finally won federal Social Security benefits which include federal Medicare. So in effect the state agency that originally rejected federal disability benefits approved them after all. Meanwhile the *other* state agency that approved Medicaid also reversed itself and kicked me off Medicaid, because with disability benefits my income (which is only from disability) is now too high for Medicaid.

Which means I no longer qualify for a case manager, because only Medicaid will pay for that kind of help, and I obviously can't afford the agency fee of $75 an hour.

Now if I lived in a different state I might sill have Medicaid, because every state has its own rules, even though 90% of Medicaid funding is from the feds.

There's a separate program called LIHEAP that sends money on my behalf to my local heating oil delivery company. Like every other program, they have a separate application process requiring proof of poverty and another slew of agencies that get a piece of the pie for processing part of the application. This year I called the ACAP agency (a local NGO run by morons) and told them I needed someone to come to my house to take the application (It's too simple obvious to do it over the phone, Doh!). The ACAP agency hired the Aroostook Area Agency on Aging to send someone here, so the AAAA got a cut as well.

The AAAA person came to my house to do the application. When it was done I asked about getting other help from her agency, especially since I'm getting old. She politely informed me they only help people on Medicaid, and immediately left before I could badger her about just how the hell am I going to get groceries when I can no longer leave the house at all, which may happen pretty soon.

Like @GypsyGirl I have absolutely no idea how I am going to get support services. I have some neighbors that help me some, but they are not reliable. And everybody else around here that I used to know has effectively abandoned me, even "friends" I've known for 30 freaking years!

 

[jimells]

Can you get a social worker or another who may be able to pull some strings or know of other options you may never otherwise find out?

In my experience, the US doesn't really have that kind of social worker anymore. The people at the state welfare office are just over-educated intake workers that fill in forms on the computer, which makes all the basic decisions. They don't know anything at all about programs not administered by their office, even other state programs.

When I asked the social worker some years ago how I was going to live on no income besides food stamps, she told me to call the Salvation Army. That was it. No help at all. Totally useless.

 

[jimells]

It was like I got more sympathy there with the prisoners then I often get in real life! The whole thing was ironic that criminals treated me better).

Yes, there was a good reason Jesus preferred to hang out with all the social outcasts from his society...

 

[aangelonduty]

http://lightersideofrealestate.com/...d Row Of Tiny Houses In The Middle Of Nowhere.

@taniaaust1 -You are not serious, right? i know that this illness brings people to desperate measures. I am there and have been there. Jail in my mind...is the worst place to go. I always watch shows on jails...for some reason I am fascinated by jail documentaries on netflix. They are loud, noisy and you would be in with some truly crazy people. And they rarely take people seriously with illness either. I see this all of the time on these documentaries.

Ugh..what this illness does to us makes me sick. It makes me sick.

I want millions of dollars so I can open a home for those with CFS. I am not going to give it to help the disease (as in, try and get more research) it would be pissed away. We need help NOW. Now for the millions who have no where to go, nowhere to be, who are on deaths door or are just so sick.

"The other night I was thinking of this pipe dream and how I would have the whole place sound proofed. It would never be completely ideal, but it would give shelter from the storm and everyone would have their own room, ear plugs, food and help. HELP. Care, a nurse to get them what they need...a shower, and others to relate to."........YES !!!

I can dream......

 

[jimells]

I live in beautiful Western NC and would love a thread on this subject also (because I want to do this ) ....me- sick for over 35 yrs...new here (member yrs ago).....& just bought an RV, because I am way too sick to make a 'reg' move......love the RV...only prob.....I am sooo issolated and I would LOVE to have ' family ' around me, who understand. !!!! I got the caregiving thing 'down' now as I have 40 hrs @ wk for a caregiver (medicaid) .....any one out there want to start a small community ?? ( a peaceful, loving,supportive, no drama, love tree's,kindness,truth,old hippies would be great-like earth mom types Spiritual, etc......w/ xxx)

I have 50 acres you can park your RV on. It would be pretty simple to hook up to my water, electric and septic. Being an anti-capitalist and all that, I certainly wouldn't charge rent.

And it's very, very quiet here, except for the peepers in the spring and the crickets in late summer...

 

[aangelonduty]

I have 50 acres you can park your RV on. It would be pretty simple to hook up to my water, electric and septic

OMG.....are u an Angel who just dropped in ??? where are u ? xxx

 

[jimells]

OMG.....are u an Angel who just dropped in ??? where are u ? xxx

Get on I-95 North, drive to the end, and turn left. My farm is ten miles from the interstate. I can see Mars Hill and New Brunswick from my living room windows.

 

[AndyPandy]

Bless you @jimells.

The posts on this thread about lack of care and services are heartbreaking.

Wishing for better times for all of you.

Best wishes, Andy

 

[taniaaust1]

I have called nursing homes when i was becoming unable to care for myself, and they said they did have some younger MS patients.

Nods yes, MS patients can end up in nursing homes but even that option isn't open to many of us. My states disability service even controls who can go into group homes or supported accomendation homes etc but doesn't view ME/CFS as a serious illness at all. Seeing I cant get ANY home support at all from them, they certainly wont approve for me to go into a supported accomendation home for the disabled.

MS patients have more support then we get. (I've heard that MS patients also in some places can get service dogs, I have never heard about a ME/CFS person getting one of those to help eg to go and retrieve the newspaper for them or get letters out of letter box or do other things). When we get service dogs for ME/CFS.. we can will probably be able to say we are finally being treated like we have a serious illness/disability

 

[taniaaust1]

Get on I-95 North, drive to the end, and turn left. My farm is ten miles from the interstate. I can see Mars Hill and New Brunswick from my living room windows.

That offer brought tears to my eyes, thank you so much for offering it to the other.

bless you

 

[taniaaust1]

Governments sending support staff to 'help' have no clue what to do. Here locally we have a ME/FM clinic. Their services include 'self-management support groups'. If you are unable to join the groups, or if you are unwilling to go and come back home weekly with a crash from that exertion you are deemed non-compliant or combative. For a brain-fogged highly noise sensitive population, definitely this clinic caters to the mildly affected and leaves the high majority of patient who is already self-managing, has done so for decades, behind.

We need real treatments. We need patient-centered care. We need science. We need sensitive agencies who will send real help..

It's a human rights abuse. We need one of the big human rights groups to come to understand that a whole group of severely sick people are being discriminated against worldwide and not given the help they need with the level of our disability too often ignored (which in many cases does lead to suicide). I wish one of the heads of one of those international groups saw threads like these.

What other disability out there has only support for those who have it minor but offer near no help or support services for the severe? I honestly cant think of any other illness in that situation.

(I wonder if any of those groups helped in the fight for AIDS recognition?).

 

[taniaaust1]

@taniaaust1 -You are not serious, right? i know that this illness brings people to desperate measures

Yes I are being serious, I choose to go there once before on the grounds of not being able to look after myself when I could of just easily accepted a bail. Im in a desperate situation cant help myself much more then I am. (there is two people.. disability minister and ombudsman, I still need to contact but Im overwhelmed by it all and very limited how much I do in a day).

We have limited choices and for some it may be the better choice out of the limited ones we have.

Jail in my mind...is the worst place to go.

It depends on just how bad the life stuff is if it is the worst place to go or not. Mental hospital worst!.

Hospital isolation wards often in jail are very quiet. Most of the time the ward was more then half empty.. well at least for my own states women prison.

Crazy people true but I only felt compassion for the two real crazy ones I got to know a bit...they truly shouldn't have been there!.

One was someone with schizophrenia (she was there for actually biting her carer, she had been diagnosed as having the mental age of an 8-9 year old, they brought her in having schizophrenic hallunications in hysterics cause she was seeing mosquitos the size of dogs. She was truly like a child.

(Badly she later was asking for her medication for her schizophrenia as it was very late.. I think it wasn't till that night they actually gave it to her. It was like when I suddenly started getting hives in jail and asked to see the nurse, the guards ignored me and didn't even enter my cell to look at that I was getting spots over my legs). Thing is right now is that I hardly are getting medical care right now any way due to lack of being able to get to doctors.

The other very crazy one had bipolar, personality disorder (BPD) and may of had Aspergers like myself (other prisioners treated her with respect as they knew she could go crazy and hurt someone but she was very gullible). She was a long termer (she'd commited a very serious crime, I cant remember now, it may of been murder, she was in the jail isolation after smashing a mirror and cutting her throat. She also set fire to her cell (bed, sheets etc) while I was there next to it.. that was quite scary till they evacuated me outside while the fire was being put out).

She was a very nice person except when her mental health stuff was really going bad. She was also having grand mal epileptic seizures up to about 6-9 times a day so was ending up smashing around her cell (she would of been getting quite bruised up). I was really worried for her health, called the guards on multiple occassions when she was having a seizure. I look upon those in jail differently after my experience, holding more understanding of the things which brought them there.

Then there was a very quiet aboriginal lady. In the states woman's prison for of not wearing a seat belt while a passenger in a car. She was from the outback, she couldn't talk one world of English or write English. I doubt she would of even know the law. No doubt some anti-black judge heard her case, she must of not had an lawyer. When there was an opportunity, I used to smile at her and she'd smile back. Some of the guards treated her different as they too thought it was very wrong she was there.

The jail had many people who shouldn't be there and even the ones who I should be there, the ones I met were nice eg a lady who commited a bank robbery. The people I met were like fairly ordinary people. No doubt TV tries to make these people look less then ordinary. I cant say how my experience would of been had I been in the normal womans area rather then locked in isolation for a near month due to being suicidal. (yeah right as if that is going to help someones mental health!)

It wasn't nice (no privacy at all and the isolation of being in a cell nearly every day all day and the boredom, they rarely let me go to the exercise yard, were the worst things other then being assulted once by a guard) but life at home is worst... trying to survive here worst. Far more stressful then being in jail.

It's an option. There was that guy with ME who starved to death in England cause he couldnt look after himself not too long ago, jail would of been the better option for him, maybe his only survival option. It would of saved his life. Its the answer for those who have no better options who cannot care for themselves eg no family to go and live with etc with no other suitable options..

Ive been thinking about what crimes I possibly can do. Im limited in that area seeing I only get to go out with support workers and use a wheelchair when out. If I steal something, I'd hate for what my workers would think. Im currently thinking some form of public nuisance to go to jail for would be better..

eg start making a mess in the supermarket.. emptying lollies, potato chips all over the floor or something and do it till police and called and you are arrested. Im not sure how much jail time that will give me if needed.

That though could get me thrown into a mental health place as that probably would be seen as nuts rather then a jail where stealing would be sure to send me. I really don't know what is the best way about going about the ending up in jail thing.

I really hope that something in my case soon sorts out, if it doesn't, I see only two options to get out of the hell Im put in currently, suicide or jail.

I want millions of dollars so I can open a home for those with CFS. I am not going to give it to help the disease (as in, try and get more research) it would be pissed away. We need help NOW.

If I was a millionaire, I think I'd build a home for those who have ME/CFS, MS and MCS too (Ive heard that young MS people currently can end up sometimes in old folks homes), though I also do give money for research.

 

[Valentijn]

Get on I-95 North, drive to the end, and turn left. My farm is ten miles from the interstate. I can see Mars Hill and New Brunswick from my living room windows.

Party at jimells' place! Who's bringing the booze?

 

[jimells]

The jail had many people who shouldn't be there and even the ones who I should be there, the ones I met were nice eg a lady who commited a bank robbery. The people I met were like fairly ordinary people. No doubt TV tries to make these people look less then ordinary. I cant say how my experience would of been had I been in the normal womans area rather then locked in isolation for a near month due to being suicidal. (yeah right as if that is going to help someones mental health!)

Your experience in jail sounds very similar to stories I have heard in the U.S. I suspect the women's prisons are quite different from the men's prisons where the prisoners seem to spend most of their effort in proving who is the biggest dickhead.

I used to have a girlfriend who was sent to the slammer for a couple of weeks. She was a real criminal for sure. Her crime was an inability to properly manage a checking account. This all happened while I was living in Arkansas. In that third world state poor people are sent to jail for writing rubber checks - no fraud required. When a merchant gets a bounced check, they just turn it over to the city attorneys office, which then acts as a free collection agency. Unlike regular collection agencies, one can not ignore their phone calls.

A sensible person might wonder, why didn't the bank just close the account? Why indeed. It turns out that bad checks are hugely profitable for banks. It costs them nothing to return the check, while both the check writer and the check depositor are charged $40, or whatever the fee is these days.

Technically, she wasn't jailed for the rubber checks. The judge had ordered probation. But there was some typical screwup in the probation office and they never contacted her. When the probation thing didn't happen the judge issued a bench warrant for her arrest, which she knew nothing about, and simple sat in the computer.

Years later she was stopped for speeding and immediately arrested. No due process required. The judge was free to keep her in jail as long as he wanted to, apparently. This is the same kind of abuse that was recently reported in Missouri, which borders Arkansas.

It used to be that one only occasionally met jailbirds in America. It's no longer rare. Pretty soon we will all know former prisoners, or be one ourselves.

 

[Misfit Toy]

@jimells -I literally live right off of I-95. I will be there in 9 or 10 hours!!

@taniaaust1 -I just hope if this is something you are thinking about that if a crime was involved...you could get out if need be. I would hate to see you in there at all, but not being able to leave if things get awful...well, yuk.

You will have no contact, not much internet, not many phone calls with the outside world. No help if things go sour in there.

The whole thing is one big "yuk."

 

[aangelonduty]

Angel who just dropped in ???

jim.....your thoughtfulness & compassion brought tears to me.....Yes ! there are Still peaple out there who care !!!! T U ....my day was rough & someone reaching out to me brought 'hope' .......I wouild love to talk to you, I have been thu a lot of trama these past 6 months....(no, I am NOT a drama queen however moving being this sick & not knowing a soul here + others little goodies, I would want to know you.........it looks like u are sick....are u isolated ?