assisted living or in home care?

[skippy13]

The last two times I have been in to see my social worker at the VA she has suggested that I move in to assisted living or get someone to come in and help me out. Which is better?

I freak out a little at the idea of assisted living. I dont know really why. I know I need help at home, but how does this work with the VA? Do they hire people to come to your house or do you have to find someone yourself? Is there money to pay for this?

I hate "giving in", but there is getting to be no other choice. I cant open a bag of chips or a can or jar anymore for example, and things just arent getting done. I cant even take out my own garbage because of the steep hill I live on.

[rdf]

The last two times I have been in to see my social worker at the VA she has suggested that I move in to assisted living or get someone to come in and help me out. Which is better?

I freak out a little at the idea of assisted living. I dont know really why. I know I need help at home, but how does this work with the VA? Do they hire people to come to your house or do you have to find someone yourself? Is there money to pay for this?

I hate "giving in", but there is getting to be no other choice. I cant open a bag of chips or a can or jar anymore for example, and things just arent getting done. I cant even take out my own garbage because of the steep hill I live on.
Assisted living might also mean help from caregivers. That'd be someone who comes to your home and will do chores and such that you aren't able to do, as well as some daily assisted living requirements of a more personal nature. I know from friends that Medicaid pays for this in most if not all states up to a certain extent (hours per month), but most private insurances don't. If as like many you don't qualify for Medicaid, then depending on where you live, there might be an organization that will help out at a discounted hourly rate, or, you'd have to pay for someone yourself to come in an hour or three (whatever you need) to make you able to stay in your own home.

I don't know about the VA, I'm sure the VA Advisor might have some knowledge. Good luck SkippyGirl, your posts are always a pleasure to read, even if the road you've traveled has been painful, literally. Don't go to a home, live at your own home, I'm sure it's achievable.

One thing I do realize after talking with many friends back when I was first injured, the laws written for Medicaid dealing with assets and montly income and such are very outdated. I believe these laws were written in the 60s or 70s. A buck 30 years ago went a lot further than a buck does today, so the whole program needs to be updated. Problem as I see it is that the Congresspersons pass vaguely worded laws and give the power of actual detailed writing and implementation of laws to the bureaucrats - and they don't give a damn. They're just trying make themselves look good by saving money for uncle sam at the expense of the true needs that many disabled suffer.

[SCI-Nurse]

Assisted living is a term reserved for semi-institutional care. It is a step up from skilled nursing. You do not live in your own home. What is provided varies by state. For example, in CA, they cannot help you with bowel and bladder care, but can assist with medication administration, dressing and other simple ADLs. You usually have your own room (or may share with a roommate). Sometimes you can have your own furniture, sometimes not. Mostly you would eat in a common dining room. Often it is in the same building or complex with a skilled nursing facility (nursing home) where you would be transitioned if you needed more care.

Personally, if you qualify for in-home care from attendants, either through your Medicaid eligibility or through the VA, I would opt for that. In your own home, you are more in control of your life. You can choose (usually) your caregivers, your own schedule, what and when you eat, etc. etc. You are not expected to do the group activities. There are different types of eligibility for bowel and bladder care and for ADL or homemaking assistance. The VA generally does not pay for 24 hour care in your home. Some provide attendants, some pay for attendants you find (or family members) and some contract with community nursing agencies. Hours provided for bowel and bladder care are usually 2-4 hours daily. Homemaking varies with the facility. If you are service connected and have a pension, or long term care insurance, or other resources, you may be able to supplement this with some private pay hours as well.

If you are service connected you may be eligible for VA nursing home care. Most of these facilities are within a VA hospital and now called "Community Living Centers" (CLCs), but they are still nursing homes. Some VAs contract for nursing home care at community nursing homes for their Veterans instead.

In addition, many states have state veterans homes which have different levels of care (domicilliary for those who do not need any physical assistance except medication supervision, assisted living, and skilled nursing usually).

A few VA SCI Centers are developing "medical foster home" programs where people in the community take 1-3 veterans into their home and provide their housing, board and care for a set monthly fee. This is much more likely to be available in the mid-west and south in more rural areas.

I would recommend that you sit down with your SCI social worker and your PVA NSO to discuss your eligibility, programs available to you, and what options might work best for you.

(KLD)

[cass]

i am on a listserv with dis advocates. "inclusion" is the best and i agree: stay at home. i keep getting told all these ppl in CA (and other states) have resources to do this. yet, i keep hearing these stories.

skippy, may i share yours? no names.

[Veteran Advisor]

The last two times I have been in to see my social worker at the VA she has suggested that I move in to assisted living or get someone to come in and help me out. Which is better?

I freak out a little at the idea of assisted living. I dont know really why. I know I need help at home, but how does this work with the VA? Do they hire people to come to your house or do you have to find someone yourself? Is there money to pay for this?

I hate "giving in", but there is getting to be no other choice. I cant open a bag of chips or a can or jar anymore for example, and things just arent getting done. I cant even take out my own garbage because of the steep hill I live on.

Skippy13,

SCI-Nurse pretty much covered the gamut of choices you have. I'd only add that "giving in" is the wrong way to view this. You've earned the right to have good quality of life by virtue of your service. Getting extra help doesn't make you more helpless; it empowers you by helping to preserve your mental wellness where your physical wellness (inevitably for all of us) fades a bit. When you can focus on being happy versus how hard that bag of chips is to open, you're far more likely to cope with your mortality a lot better.

Just a few words of encouragement.

Gunner

[cass]

skippy, i sure hope i can share your story on this other listserv. i keep getting told there inclusion is everything (agreed, mostly) and there are all these resources to make it happen. these are the professionals, parents of dis, etc. yet i keep hearing your stories, living mine and told i'm ignorant by one member and others tell me about all the resources out there.

i see a real disconnect here and would like to help connect.

thanks.

cass

[peegy p]

Cass: Are you referring to the DD [Developmental Disabled] programs? Because they do receive a lot of services[ home health support; therapies OT/PT/Speech; case workers; group homes, etc.].

[skippy13]

Sure, Cass go ahead and share whatever you like its OK with me.

I don't have medicaid, I have 100% SC VA care and I have the cadillac of medicare starting in June. I have to pay and extra 125 dollars a month in addition to part B for an advantage plan which includes dental and vision as well as drugs. I'm covered up the ying yang as far as medical goes and all of my drugs are free through the VA. I would rather stay at home and live without chips and peanut butter:), but I have to have some help in.

My question is there some financial help through the VA for me? I dont need 24 hour care and B&B are already taken care of (most of the time that is). I just need someone to open the milk and help with the housekeeping and the shopping and the like. Another reason I ask is that I have to have a rather extensive surgery soon and would like to line someone up in advance if I can. I don't want to have to go to a nursing home to recover from this either.

I pretty much put the kibosh on the assisted living idea. No way!

RDF you are probably right about just having to pay someone to come in and do things. It just hurts because I'm such a Scottish cheap-skate;).

[cass]

Cass: Are you referring to the DD [Developmental Disabled] programs? Because they do receive a lot of services[ home health support; therapies OT/PT/Speech; case workers; group homes, etc.].

yeah, i have had recent exp. with info on DD. i just hope we can all be included, tough as it is, due to different needs.

skippy, ty. unf. i may have been kicked off the listserv i wanted to share your story with...i really don't know. a member was writing me hateful e's and i couldn't handle it on my own any longer. esp. with m-day coming up, my mom was a sw dealing with DD and her e last night said she didn't give a darn what my mom did. my mom was on dialysis 13 yrs, still trying to help. she died in 1990, never seeing her only grandchild.

i have tried to say to the DD friends, hey look, i don't get it. i guess i'm no good at advocacy. i'm sorry.

btw, i grew up in woodward, iowa, home of an institution my mom and dad, me and bro worked at. i hate institutions.

[Lizbv]

Skippy
Direct your own care in your home for as long as you can. The rewards are much greater than institutional assisted living which will cost much more. Best wishes

[kstock]

Hi Skippy13, just want to let you know there IS a Veterans Benefit for Assisted Living. I'm am certainly no expert on qualifications, but I know they provide up to $1700 per month toward assisted living. You can read about it here at VA Assisted Living (http://florida-assistedliving.net/florida-assisted-living-news/assisted-living-veterans-benefit/).

I know there are some very nice options for assisted living and they might be a great help to you. Hope that helps.

[SCI-Nurse]

kstock, neither of those VA programs pays for living in an assisted living center. Those are programs for those living in their own homes and receiving part-time assistance with ADLs and/or bowel and bladder care. The VA does not pay for fees required to live in an assisted living center (as already stated above).

(KLD)

[kstock]

"The Veterans' Administration offers a Special Pension with Aid and Attendance (A&A) benefit that is largely unknown. This Special Pension (part of the VA Improved Pension program) allows for Veterans and surviving spouses who require the regular attendance of another person to assist in eating, bathing, dressing, undressing or taking care of the needs of nature to receive additional monetary benefits. It also includes individuals who are blind or a patient in a nursing home because of mental or physical incapacity. Assisted care in an assisted living facility also qualifies."

I know for a fact that these benefits can be used for an assisted living or nursing home.

See Here http://www.veteranaid.org/

[SCI-Nurse]

You are right, they will pay for some attendant bowel and bladder care under fee-basis, but I know of no assisted living centers that will take someone with a SCI who require caths, catheter care, or bowel care unless you have someone (a PCA) from the outside come in, paid under your VA benefits to do this for you. In my state, these are considered skilled nursing, and cannot be performed by assisted living staff.

The VA does NOT pay for the room and board and other fees required to live in an assisted living center, so no, they don't cover that. You would have to pay for this out of your own pocket....and of course you could use your A&A and/or your pension for that if you so choose.

I do this every day in my job. If I had been able to get one of our SCI veterans into an assisted living facility who was not already totally independent in their bowel and bladder care, I would be thrilled, but that has not been the case. Our options have been either in-home living with PCA care (fee-basis, plus ADL assistance, IHSS if eligible, and/or private pay by the individual) or skilled nursing institutionalization (nursing home).

(KLD)