Who has home health aides?

[marmalady]

I thought it would be interesting to see how many of our members have home health aides, or PCA's, and whether they're private or from an agency. Let's see if I can do the poll thing correctly! For the ease of posting the voting responses, i'm going to lump home health aides and PCA's in the same category.

I'd be curious, for those who do have aides, if they're full or part time, but there was no room for additional responses.

_____________
Tough times don't last - tough people do.

[rbyrd49100]

I am not sure how to vote.. Bluecross HMO is supposed to provide people to stay with Steve a few hours during the day to help him with personal care etc. I would not have considered it , but he recently had his first seizure since the accident(brain injury related). I was there this time, but what if it happens with me not there?

The people at TIRR were no help at all when I asked about some kind of alarm system to alert me if it happens while I am at work. They sent brochure about a medic alert device that you have to puch a button for help. I guess Steve would have to anticipate a seizure coming and push the button http://sci.rutgers.edu/forum/images/smilies/smile.gif From what I saw with his first seizure, there was no warning.

So we recieved approval for the home aide but so far it has been a joke. They brought one lady to meet him and she was scheduled to start the next day.When she didn't arrive after 2 hours I called and they said she changed her mind because she is afraid of Steve's cat. I told them they could have called me and they responded by saying she would be happy to come if he would "do something about the cat". I told her to forget it and send this dumbass to a psychologist to find out why she is afraid of kitty-cats. Man, if she was afraid of Steve's little cat I am just glad she didn't stay long enough to see my Siberian Husky in the backyard:)

Russ Byrd

[Emi2]

Part-time, just for assistance in the morning. And for another couple weeks, help with supper.

"It is not easy to find happiness in ourselves, and it is not possible
to find it elsewhere."
--Agnes Repplier, writer and historian

[crags]

I've been blessed with good help over the years but dependence on help is by far the worst part of SCI.

It does however, teach good management skills which will help you professionally. Bad people management skills in the office is a nuisance, in the home it is the difference between a tolerable life and utter despair.

[antiquity]

I've had the worse luck with HHA's. I've always gotten them from agency's and have had very few who didn't steal, ask me to lie on time sheets, get too familiar too quickly, stop coming on time and doing what they are asked to do. I need one now but really don't want to go through that experience again.

[shacha]

we never had one we always had me i guess if we need one we could get one but from what i hear they arent much help.

[julran]

Part time, I need help to get up and again to go to bed. I have been very fortunate in that the help I have hired the past two years has been very responsible and reliable. At one time one of my aides was through an agency, once when she was on vacation I went ahead and tried a couple of replacements on non shower mornings, Oh My Goodness, were they twits. Anyways, I have two very nice gals working for me right now.

One day at a time...

[KLD]

Keep in mind that in some states, a HHA must be certified and have a certain amount of education. In my state this is a legal designation, very similar but not identical to CNA. Neither are allowed by law to do caths, tube feeding, suctioning or bowel care.

For this reason, and others as well we have chosen to use private PCAs for my mother, who are not required to have any prior training or experience. The one we have now happens to be a CNA as well, but she works privately (not through an agency) so can do any care we ask her to do. She is a gem, and recently moved into my old bedroom. She does not work full time as a PCA. She has a regular job at a local hospital which provides her with benefits, and is also going to school. She works for my mother a total of about 3-4 hours daily (it depends on the day of the week), and gets a salary plus board. I wish I could clone her for all of you, as she replaced some real loosers that we had before her.

[martha]

Wish you'd put a category for "No Aide -- Can't afford one". http://sci.rutgers.edu/forum/images/smilies/frown.gif

[jools]

I'd like another category as well (I realise it's not possible):

No outside help because I'm expected to cope with the lot.

[martha]

Jools, I agree that would have been a good optional question also. Too bad the polls don't give room for more choices.

[Raven]

I have been getting someone to come in to help me. They are paid by the state. They call themselves health providers. Is there any difference from the pca or others?

If not, what are the differences?

Raven

[marmalady]

I know, guys, I wished there were more choices when I posted the poll. I wasn't trying to overlook those who either can't afford an aide, or who don't have the option because the state or their insurance won't cover it. One of the things I was trying to get was how many haven't been able to find an aide, and was also curious as to what the breakdown is between private pay aides and state or insurance provided aides.

Martha - Your insurance won't provide an aide? Let's see, you have back problems, right? Would a letter from your doc, stating your condition, help in getting some aide coverage for hubbie?

Raven, I think the guidelines are different in each state for HHA and PCA's, at least as far as state provided coverage goes.

Russ, I know how you feel; we've been through that hoop, also; some of the aides we've been sent I wouldn't trust with the cat or dog they're so afraid of!! It's so sad that so much state and insurance money is spent on incompetence. I wish there was something we could do.

_____________
Tough times don't last - tough people do.

[SCI-Nurse]

Get involved in your local community. Generally there are projects going on through your local ILC that address the needs for better access to better PCAs. It has been great to be involved in this process in our area, which has resulted in a proposal to the state to significantly increase hourly wages and provide benefits in order to attract better people to the county funded attendant care program.

In addition, everyone who now needs (or might need in the future) PCA care should get involved with ADAPT. They are fighting for all of us at the national level:

http://www.adapt.org

(KLD)

[marmalady]

Thanks for the input, KLD.

_____________
Tough times don't last - tough people do.

[TD]

I used to have an aide, paid for by the state agency on aging, who came in twice a week to help me get a shower. The state balked at giving me more than 3 hours a week (my shower used to take two hours) but my case manager forced the issue. With the economic downturn, the state is cutting the budget and home care is one of the first things cut. If YOU cannot afford it you go without home care.

About two years ago the quality of care by the aides went downhill. Then the agency began having trouble finding aides to come to my house because I live in central phoenix and most of their other clients were out in the suburbs. I finally got tired of waiting for the agency to find someone in the area and told my case manager to forget it. It was not worth the hassle!! Since then I have gotten a few major modifications done to my house, like having a roll-in shower installed and wide ramps put in at both doors, which has increased my independence tremendously.

I pay for a life line service in case of emergency. Only problem is keeping the contacts up to date because friends keep moving and I will not trust just anyone with a key to my house. In extreme emergencies the service will call 911 and they will kick the door in to get to me. http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif

"And so it begins."

[whiterabbit11]

Jools,
I know just how you feel.wr

[marmalady]

KLD, Thanks for this link: http://www.adapt.org

Just visited their site, and was impressed by their activism. All of us who are affected by the lack of home health care should make our voices heard; talking to case managers and social workers is just not going to do the trick. Join Adapt; write letters to your congressmen and governors.

I see two basic problems; the first is to raise the education level and pay scale of home health attendants, along with the 'scope' of what tasks they are permitted to perform. This would attract not only more people to the field, but better educated and more dedicated people, also. (Please - I'm not saying that there aren't dedicated, caring aides in the field at present; I'm saying they're woefully scarce)

The second is to convince health care agencies, i.e. Medicaid, and private insurance agencies, and agencies which provide home health care, that 1) their scope of practice within the home needs to be broadened to allow them to perform tasks such as cathing and tube feeding which are now viewed as 'medical procedures' to be done only by registered nurses. 2) Their education/state licensing programs need to be expanded greatly to provide more than the current NJ example of two weeks training at the cost of $75 to the applicant to obtain a state home health aide license. 3) A system of hiring needs to be implemented which would screen individuals more carefully, to eliminate the theft and inappropriate activity that occurs so often.

A home care nurse once said to me, 'the aides are the first line of defense when caring for a disabled/chronically ill person'. That's a frightening thought, when a great percentage of aides have only two weeks training, and an average 5th grade education. Can they take an accurate temperature? Perform a blood pressure reading? Have the ability to see a situation that needs attending to, and then communicate with the appropriate doctors/ERs/agencies in an emergency? Sadly, in a lot of cases, they cannot. And these are the people who are entrusted with the care of our disabled family and friends.

I believe it's time for all of us who are affected by this issue -both family members and those of you who want or do live independently - to start becoming vocal and active. It's a crucial disability rights issue, and stands right alongside the right to access, jobs, etc.

Okay, I'm off the soapbox now - what say you, all?

_____________
Tough times don't last - tough people do.

[jnags]

I've been lucky enough to only need an aide on occassion when my parents have been gone away. Used to get them through an agency. The aides they sent ranged from great to dead from the neck up...then after a few years i seemed to always get the dead from the neck up ones...only go with private duty now. I have had much better luck since i stopped dealing through an agency.

john

[Sue Pendleton]

I have a friend in Idaho who was a part of the group that worked on a bill for a few years to have the state drop a CNA degree as a requirement to recieve state paid medicaid payments. The change has meant that people can now train whoever they want and can find to be a PCA. This has increased the available pool of applicants for home health care as most with a degree work for hospitals and nursing homes that have benefits and incentive pay. This also has cut down on agency fees.

I have had little success with either agencies or private hires. I don't think I ever did have a private person show up for the second interview that is face to face. Thought I had a great one once but when I finally tracked her down she had told her head of nursing at the community college where she was working on a RN degree about the job. The head of the program advised her not to take any job that required anything invasive or required transfers because if she caused an infection or I broke a bone in a fall she could lose her license before she had one. Seems if you are actually training to be a nurse you must be a student RN and be certified before actually touching a person here.

The agency types were brain dead or spoke languages that are definitely NOT taught in schools in the US. The exception was Visiting Nurses and VNA types were like jailers. I had one aide who actually tried to hang up my phone when I had a normal Mom/daughter argument on the thing. I was 35 and this twit was 19 and parked her butt in front of the TV and zoned on MTV if I didn't have a huge list of things to do that I didn't need an RN for and at the time that wasn't much. And the VNA was the agency that my insurance would pay for so many weeks after a hospitilization. They decided on their own that the goals I went home from my 2nd round of rehab were not doable. Considering the goals were written by my rehab doc of 2 years an OT and a urologist I was stunned. They called together an intervention type thing and sat my husband down and told both of us that transferring and voiding were some kind of dream we made up. This after a 16 week stay just to get my transfers down for home continuance and self care..

I also posted at Ft Meade's hospital before it changed to clinic only status, KLD. They had people from all the area nursing homes and labs trying to recruit active duty medics when they ETS'd and civilian LPNs and lab techs with hiring bonuses. The recruiters were outside the place every week for at least one day. There just aren't competent or trainable aides in this area for less than $20 an hour with a minimum of 4 hours each day. And insurance covers none of it. I am seriously considering sponsoring a foreigner (eastern European maybe) as a live in aide but that will make for a cramped home at times..

[marmalady]

ANd now it seems we have a new force in the playing field - I've been calling them the 'Russian mafia'! Got connected with a gentleman who connects Russian and Eastern European immigrants with folks who need aides. Our situation is that we need an evening aide for a few hours each night; our aide's salaries are paid from a trust fund set up for Matt, with very clear guidelines on 'employer/employee' definitions.

This guy told us he could provide an aide for $20/hr., and that we 'didn't have to take taxes out - the aide will file his income tax return at the end of the year'. Right.

Told him a) I worked as assistant manager of a restaurant for $11/hr, and we could probably hire a nurse for close to $20; and b) I wasn't willing to put the trust in jeopardy with the IRS by not filing employer taxes (a la the nanny controversy of the last few years).

I absolutely hate the fact that people like this are taking advantage of people in need. How many people would have said to the tax situation, sure, no problem - without knowing the penalties involved?

_____________
Tough times don't last - tough people do.

[starlightangel]

Marmalady, I'm assuming this was the person I referred for you?

What kind of insurance does Matt have for PCA coverage? I was just wondering.

[KLD]

This is a new one on me, but sounds consistent with the same practices I have heard about for nannies. I wonder how many of them actually have a green card and can legally work in the USA. Many people in our area hire illegals, but if the IRS comes sniffing around they will suddenly disappear on you. Wonder how much of the $20/hr. the PCA actually would see!

In our area, private pay PCAs start at $8-10 and go up with experience and logevity in the job.

The employer is responsible for Social Security taxes, even if you pay in cash. Tax withholding is only required if you pay over a certain amount to the person per year (I would have to check on the current amount), but it is encouraged. We also advise people to check their homeowner's insurance policy for workers' comp coverage as this can be an issue if you do not cover them.

One of the reasons that we often encourage people to consider several different PCAs (instead of one live-in full time attendant) is that if they can hold down another job too that has benefits they may be more willing to work for you, esp. if you do cash only transactions. Of course this means more schedule juggling, but you can also often get them to be each other's emergency back up as well.

Many people do NOT report this income to the IRS. I guess philosophically you have to deal with this yourself. I guess you never know when you might plan to run for President or want to get nominated to the Supreme Court!

This is a good resource that does cover some of these issues:

http://www.wa-ilsc.org/toc2ack.html

[Christopher Paddon]

none, because mum wants to deal with it all - it's a big worry

[marmalady]

Yippee!!! Just found a new evening aide, from the OT program at Setan Hall colleges. We've had 3 aides from schools, either PT or OT programs.

It's a good field to mine, folks, if you're looking for aides. The only drawbacks are their school schedules, and of course they do graduate and move on!

_____________
Tough times don't last - tough people do.

[cowboyquad]

you should have added another category. have an naid through a self-direct program. Medicaid pays for this in MT but the consumer is responsible for finding, hiring, training, managing, and firing PCA's. This is what I do.

[Sue Pendleton]

There's a good chance the "Russian Mafia" guy has 10-12 people living in a one bedroom apartment he pays for, buys groceries for and he holds on to the green cards and collects most of the cash as repayment for getting them to the US. There is one way around this where the boss losses and everyone else wins, normally. You find another person who lives no where near you and needs an aide also. You both hire one of the Mafiosi's. Talk to the aides bluntly and let them know they can switch employers and then they keep the cash but are responsible for setting up their own self employment thing or you withold taxes, etc. The first week after both aides disappear from the home/jail they should really disappear to someplace no local Russians go. Good time to try and find a roommate situation they can afford. Once boss stops looking for them both people who need aides get them and they are legal. http://sci.rutgers.edu/forum/images/smilies/tongue.gif And if the aides do have green cards then I'd also call the local county health department on the boss. If it is a situation where he has turned a 1 bedroom apartment into a Hilton he's breaking codes all over for too many unrelated people in too small a domicile.

[marmalady]

ROFLMAO!!!! Great idea, Sue!

_____________
Tough times don't last - tough people do.