Shortage of Caregivers

[PN]

I always thought that the world would end before me. Recently one of my caregivers, who had been with me for a decade, needed to move on with her life, which is understandable. My other caregiver, who has also been with me for over a decade, continues to work for me. This caregiver now is 50 years old and can no longer work seven day weeks, 24 hours a day, as she could a few years ago.

In the past two months I have had three caregivers leave because of various reasons. It seems to me that finding help is much more difficult now than it was in the early 1990s. I was always helping others with spinal cord injuries who were having their own problems which at times were numerous. I am usually very good at problem-solving or thinking "outside the box" and resolving dilemmas. I did use an immigration attorney to try to bring a Filipina over to the United States on a working visa.

I just thought I should post this for what it's worth.

PN

[Scorpion]

A friend of mine has constantly had this kind of problem. He finally went with an agency, and while his PCAs aren't as consistant as employing them himself, if one flakes out, he'll have a replacement there to help him shortly. Some of them are pretty hot too. http://sci.rutgers.edu/forum/images/smilies/smile.gif

~Rus

[marmalady]

When my son was discharged from rehab, the social worker was extatic (SP?) because Medicaid had approved us for an aide 7 hrs. a day, 5 days a week-apparently a record for Medicaid, and of course, through an agency.

We fired six aides in six weeks and got thoroughly frightened and angered at how incompetent they were; not knowing a thing, and not receiving much support from their agency nurses. Our visiting nurse shared with us that the average education of a home health aide is 5th grade - scary, huh?

My husband and I took over my son's care for a year, and when money became available, we started looking - first in all the usual places, placing ads, etc. Put notes on the bulletin boards at the rehab center, the community college, spoke with heads of PT and OT depts. at the state college, and signed up with an internet finder service (I believe it's homehealthaide.com).

What we found for the most part was not so much a lack of aides trained in SCI care, but a lack of willingness to learn what was necessary to provide that care. We had an entire comedy of errors, from a guy who answered our ad who was not even an aide, but 'just wanted something different to do', to a young woman who slept through and missed her interview, to folks who spoke NO English, to two women who accepted the job, and then never showed up, or called with excuses.

Finally, through the internet service, we found a young woman who is intelligent, caring, competent, and has become part of our family. We thank God for her and so does our son. We also have a part time evening aide (3 nights a week), who was one of my son's aides as an inpatient in rehab.

I guess the message is, don't give up; and yes, 'thinking outside the curve' is very much the way to go!

Does anyone have any other suggestions?

Good luck! http://sci.rutgers.edu/forum/images/smilies/wink.gif

[bmjcombine]

Why don't we develop a community based system that allows us to find, manage and evaluate caregiving within our communinty? We could even develop a national service by linking the local and regional services?

[Wise Young]

bmjcombine,

What you suggest is a good idea. Perhaps what we can do is to create a forum for people to advertise for caregivers and vice versa. Because of the interactive nature of the forums, people can post their opinions and experiences with the various services or even individuals.

I just did a search for web sites that might provide such a service and was not able to find any that are specific for spinal cord injury.

There is a mail listserver for caregivers at http://www.delanet.com/~mp317912/scic/index1.htm

The Family Caregiver's Alliance web site http://www.caregiver.org/ has some useful information but it is not specific to spinal cord injury and also does not provide a clearinghouse of caregiver sources.

There is a spinal cord injury caregivers forum on Yahoo: http://groups.yahoo.com/group/scic

There is also a caregiver magazine http://caregiver.com/ although it does not focus on spinal cord injury.

Here is a fairly detailed manual for caregivers http://www.wa-ilsc.org/toc2ack.html

Anybody know of any other resource?


Wise.

[marmalady]

I think its a great idea to develop an arena where caregivers could get together with potential employers. My biggest question is, how would we get the info out to caregivers, aides, etc., to have them post? We'd also have to post a huge disclaimer on their abilities, training, etc., make sure folks hiring them know they're on their own.

There was a site up last year, HomeHealthAides.com, that we used; we did find our wonderful aide on that site, but also ran into such a wild mix of training and abilities, that it almost wasn't worth it (one fellow said he wasn't an aide, but just thought it would be a way to earn some extra money! - wonder what he thought he'd be doing?!).

[SCI-Nurse]

One big problem is that while most people with SCI (estimated to be 60-70%) are on-line, few people who work as PCAs are. Generally they are lower income and lower-educated, and may not have access or not have had exposure to computers, or know how to do good searches to find jobs.

There are a few sites out there for linking PCAs and employers. Unfortunately they get little traffic, and in spite of some having been on-line for several years, they are not growning much.

Here are a couple:

http://www.independentliving.org/assex/index.html


http://www.pca-hha.com

In addition to the sites Dr. Young posted with information about managing PCAs, here are a couple more:

http://www.disabilitygateshead.org.uk/recruit/recruit.htm

There is also some good information on this site under Health Education:

www.craighospital.org (http://www.craighospital.org)

My agency has a PCA training course (40 hours) and once they are done with training we link them up as indep. contractors with our clients as potential employers. We also train our clients in PCA management skills. They are generally not CNAs or HHAs, and in fact some of our best PCAs have had no prior experience or training and have worked in fields such as mechanics or the military prior to taking our training. Don't discount training your own. Often there is a real advantage to them 1) not having any bad habits, and 2) being much more likely to follow your directions and not try to boss you around.

(KLD)

[Wise Young]

Thanks, KLD.

Marmalady, I was wondering how one can circumvent some of the problems that you mentioned. When the idea was first suggested, I thought that perhaps it could be like a classified ad with a form that people can fill and the information would be posted. On the other hand, there is a need for a lot of further exchange of information and there will have to be some protection of people.

For example,

1. Suppose somebody needed a PCA and you advertised it on the forums here. What is to prevent hundreds of sharks from writing to you and offering their services that you would have no easy way to evaluate?

2. What if people started stealing PCA's from each other by offering more money?

3. What kind of information would you like to see on a potential PCA and, vice versa, what information would a PCA want to know?

Wise.

[PN]

Well, I thought that this old post was dead. Now that it has been resurrected, I want to thank everyone who has responded. I am still looking for a new caregiver so nothing has changed since I wrote this post except for more "distress". I am still proceeding forward with all the paper work and legal requirements that are necessary to bring someone over on a visa. Since there is a care giver shortage in the United States, there may come a time when our country may need to hire people from third world countries on J Visas to do this work because most Americans will not.

I don't know if having a database on the Internet for hiring caregivers would work or not. Usually you have to interview each person and also check references, followed up by a background check. Health care agencies tend to be very "pricey" and you can expect to pay at least $12 an hour and that doesn't mean these people are very good.

I think it might be a good idea to start a non-profit health care agency so the profits could be used to help those who have a limited income. I do not know if this can be done nationally but perhaps we could start with one agency on the West coast and the other on the East coast. There would probably be a lot of paper work so I would try to find attorneys who might do some of this "pro-bono". If there is a ground swell of support, then I may be able to find MBA interns.

PN

[FREEJ]

PN/MARMALADY,,,I UNDERSTAND YOUR STRUGGLES W/ PCA'S/AIDES, ''ALL TO WELL.'' I BELIEVE TO SURVIVE/PROGRESS THROUGH THE SCI JOURNEY, ONE MUST LEARN TO BE A V. PATIENT, POISED 24/7 TROUBLE SHOOTER. I TRY TO DO MY BEST, HOWEVER, THE ''PCA/AIDE'' SITUATION IS TRULY TESTING ME. IT IS BECOMING QUITE DISCOURAGING.

HERE IN NEW JERSEY THE PCA/AIDE SITUATION FOR A QUAD IS LESS THAN DISMAL. MARMALADY AND DR. YOUNG, YOU'RE BOTH FROM JERSEY, YOU PROBABLY KNOW THIS.

I'VE BEEN TRYING TO OBTAIN HELP THROUGH AN AGENCY FOR 8 MOS,,,STILL TO NO AVAIL. I THANK GOD EVERYDAY FOR MY FAMILY/V. CLOSE FRIEND. APP. EVERY 6 WKS I CALL MY LIST OF AGANCIES TO CHECK FOR ANY ''POTENTIAL DECENT PROSPECTS.'' IT'S ALWAYS, ''SORRY JOHN, NOTHING YET, THERE'S JUST SUCH A SHORTAGE, I CALL YOU IF SOMETHING COMES UP.''

THE REASON FOR A MASSIVE SHORTAGE OF''AIDE'' HELP IN JERESY. AFTER '''TOO''' MANY CRIMES COMMITTED BY AIDES ON PATIENTS THE GOVERNOR STEPPED IN. IN LATE 2OOO, ALL ''CNA'S''; EXISTING AND NEWCOMERS HAD TO UNDERGO A MORE STRINGENT CRIMINAL BACKGROUND CHECK. ''ALLEGEDLY'' ''TOO MANY'' OF THE CNA'S WERE ''NOT'' ANSWERING THE QUESTION, ''HAVE YOU BEEN COMMITTED OF A CRIME OR IS THERE ANY WARRANTS FOR YOUR ARREST ??'' -------- THUS, THE REASON FOR A MASSIVE AIDE SHORTAGE,,,AS WELL AS UNDESIREABLE PAY/BENEFITS.

HOW I HOPE/PRAY THINGS GET BETTER, HECK I'M GONNA BE IN A ''PREDICAMENT.'' GOODLUCK MARMALADY ANDS PN.