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CARENOTES | Past Carenotes | Let's Talk


Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 12/10/13


Hello. I was diagnosed with a rare lung disease (LAM) a couple years ago. I am on Social Security disability, require oxygen 24/7, use a wheelchair for mobility and thank God every day for my younger sister who is my caregiver 24/7.

Unfortunately, since she takes care of me, she is unable to work and my Social Security benefits are barely enough to keep me going, let alone give her anything. She used to go to college and had a part-time job, but she had to drop everything after my diagnosis. Things are getting harder on her as my disease progresses. There is no cure or medication for it; only a double lung transplant is effective.

She tells me I am not a burden, but I don't know what else to call it. Is there anything I can do? I have been asked by people if she gets "checks from the state" for being my caregiver, but they are unable to tell me how to go about this. Is there a program for caregivers to get a wage for caregiving? Please, share any information you may have on this. I would really appreciate it.


Caregivers Reply

Shared by: Jerome Lejman
San Jose, CA

The program you are looking for is called "In-Home Support Services" (IHSS) and is administered by your local Area on Aging organization. This may be run by your Public Authority or contact your state's department of Aging. Here in San Jose, for example, it's the California Department on Aging.

Shared by: Sandi

Dear Bonnie, Please call and connect with your city/county health department: RN or SW. There are programs available for those with specific needs and for the home caregivers. You are right--she does need to be building her work history also as won't have benefits later on in life either. Call them today. Good luck and blessings to you.

Shared by: Linda

Hi, I don't know where you are, but many states have and Adult Family Care Program, where a family member (not a spouse or legal guardian) is paid to care for someone. Look up your state's dept of human services and if you don't get anywhere, call the department that serves the developmentally disabled in your state.

Shared by: Erin

In Wisconsin, if a person is on Medicaid and needs a significant amount of help with activities of daily living (as determined by an in-home care agency certified by Medicaid), a family caregiver can be paid, via Medicaid, to provide some of this care. This may be the case in your state as well. I would suggest that you contact your local Department of Human Services or Aging Unit for assistance in connecting with this program.

Shared on: 12/10/2013

Bonnie, I'm sorry to hear of your circumstance, but it sounds like you are among the fortunate who have loving caregivers who do not consider it a burden. There are many resources you can tap, you just need to know where to begin looking. First, I don't know what state you live in but all states have an "Office of Long Term Living", search on the web for "Your State".gov and search for that office or for a department of Health or Welfare. Depending on your age services are provided through different Medicaid Waivers, these are federal programs and it sounds like you may qualify. If you run into a problem, try calling your local congressman's office to ask for help on how to access this system. If you still need help try calling a local TV station to ask for help in finding services, other local viewers may need assistance as well. Good Luck and kudos to your loving sister!

Shared by: Carole S. Van Amburg
Goddard, KS

Bonnie, here in Kansas I am paid by the state to care for our two special-needs daughters. This became effective when each of them turned 18. They are legal adults, so I can have the state pay someone else to take care of them, or the state can pay me,so I chose the latter. Each of them is designated a certain number of hours a month to pay for either a sheltered workshop or life-skills program, or for supportive home care. Veronica gets 82 hours a month, all of which is paid to me because she has finished school and stays home with me full-time. Most of Eileen's hours go toward her sheltered-workshop job; the rest (26 hours) go to me for supportive home care. I get $9/hr. gross wages. This is my job now. It is such a blessing to get paid for what I would be doing anyway. I hope your state has a similar system. Do you have a targeted case manager? This person's job is to make sure the client is receiving all appropriate services. Sometimes you can get paid retroactive to the onset of disability or the onset of care. I found this out from the mother of one of Eileen's schoolmates when she was 19. I got paid retroactively to her 18th birthday. Your county should have an organization for administering these funds. Contact them or your case manager. I hope you can get these services!! We would have lost our house by now if I couldn't have gotten this job. By the way, this has nothing to do with welfare whatsoever. Best of luck to you as you pursue whatever your state has to offer.

Shared by: Pat

I am a PCA for my granddaughter as she qualifies for 12 hours of care and I can only get someone in for 25 hours a week to help. This is done through the state as besides private insurance ( doesn't cover it) , she has MA from state and for another year she also has Medicare but that covers transplant costs. I had to quit my well paying job for it but with just her dad and I raising her, there was no choice . You will have to train aides as the low pay attracts entry level low income people who may be very caring but not have much experience. They don't require drug tests either so be aware as that was a problem when pot was left on granddaughters bed and caregiver was using while at work.

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