Looking for opionions.....

[Kitty Cat]

As many of you know, I've had a boat load of challenges between work, losing my job (8 more weeks) and trying to figure out what to do with my life and keep the balance with my husband's dialysis and all of his medical issues.

While I am hunting for a new full time job, I have been accepted to the local community college starting this fall. (I'm beyond thrilled) I am looking to see what other peoples experiences with their social workers in their centers has been like.  My goal is to be somebody who puts the patient 1st, but also wants input and insight from the family. I'm hoping this can be a reality and I'm not aiming too high.

Let me know your experiences, good or bad. I want to learn what to do and not to do to be able to help patients and families to the best of my ability.

Thanks!

[Kitty Cat]

It would helped to say that I am returning to school to become a social worker to work with dialysis patients. We have worked with wonderful social workers and not so good social workers. So I wanted to go in that direction to help patients/families with their challenges.

[rsudock]

social workers are more reactive then proactive...I never once had a social worker say to me, "ok I heard you are thinking about quitting your job. Have you thought about what you are going to do about your insurance? Here is some information about different programs that give D patients insurance coverage or the American Kidney foundation will pay for your COBRA premiums. This will help you cover the cost of your insurance until you find another job."   

Instead the real scenario is me knowing more about the funds and programs that help D patients and then asking my social worker to call them and have them fax the paper work to her. Why is it that people who choose to work in a certain field in the medical field don't educate themselves on all the programs out their to help people?

If I was a social worker I would go to the social security office and medicaid office and ask for all the information they have to help D patients, and what the criteria and wait time is for the programs and aid to take place?


Good luck with school!
xo,
R

[Kitty Cat]

Thank you so much rsudock. I agree wholeheartedly with you. I found out about COBRA through this board, things like that I am highly interested in to be able to pass on to people. D is stressful enough, I want to take some of this off of peoples shoulders.

I am excited about getting into this program, I think I'm on the right road, my heart is in the right place and with what we've been through, I really want to try and guide people on a more positive road. The benefits you talk about are crucial. Especially when losing a job. Plus other things I've read on the board, that's why I'm trying to get a personal feel, as to what everyone would like to see more of or less of.

Thank you all for any and all input.....

[Ang]

all you need to do is  just listen-everybody is on the same journey, all at different stages.

being on this dialysis journey as a care giver your already way out in front because you live all the highs and lows on a daily basis.

social workers on the whole are pretty good but it's still just a job

wish you luck

[jbeany]

What nobody told me or helped me with...
The transplant list is open to you BEFORE you are on D.  You can start the process at different %'s of function, depending on the hospital.  A helpful social worker would know what each of the local transplant hospitals max percentage of function was.  If someone is going to start D within 6 months, get the neph to set them up with an appt with you, so you can help them get started on the paperwork mess and figure out their financial options.

For that matter, a helpful social worker could find out what each local hospitals BMI requirements were, and could let overweight patients know ASAP.  I found out about BMI requirements on here, not at my center.  Some of this could and should come from the dietitian, but it didn't at my center.  A brief explanation of what hoops each hospital expects you to jump through would be good, too.  How about an explanation of the advantages of double listing?

I could have used a guided tour of SSD and SSI and FIA and welfare and food stamps and what other local options are available for financial help.  Figure out the fastest way to get patients through the SSD process.  How about compiling a list of local and national charities that can help with money, transportation, child care, etc?
 
Learn employment law, especially state and federal rules on discrimination against the disabled.  Be able to tell the patients where they can go to find legal help with their job.  Some information to offer transplant patients about help with returning to work and getting off disability would be good, too.  Anything besides "You look great with the kidney!  Bye."

Dear lord, yes, figure out the insurance mess and help us through it.  When do we have to apply; do we have to apply; how does it work with our individual insurance; what happens when we lose our employer insurance?  What's the difference in Medicare for home and in center D?  How does Medicaid affect our bills for the clinic?  Make up a standard laminated card for us to pull out when we check in at the docs and have to answer the ESRD medicare insurance questions.  Get to know the collections departments at the local hospitals and clinics and make friends so you can help set up payment plans that don't involve dozens of harassing phone calls to a patient who just wants to go home, throw up and sleep.

And while we're at it, how about scholarship lists for D patients, transplanted patients and their families?  They are out there.  You might want to look into those now!