I don't think the situation of those of us caregiving for family members who have limited income is going to improve until the laws start changing to provide parity (equality) in funding to qualfied family members who are providing care to elderly or disabled family members. So I think it would be helpful to come up with a list of where things need to be changed so caregivers interested in advocating can have a list of requests to send to their elected officials. Do you have anything to add to this list?

1. caregivers whose family members are on state waiver programs in many states do not get anywhere near the same funds that would be paid if the family member was in nursing home or assisted living and receiving medicaidfunds. Ex: programs that won't pay a qualified family member to provide them care but will pay an agency a high rate to provide an aide they pay a lower rate; programs that will pay rent toward an assisted living or nursing home daily rate but won't pay equal or even 50 percent of same funds to familiy member to arrange care in the home

2. Section 8 program (where a low income elderly person could get portion of rent paid by govt) does not permit family members to rent to family members. So, if you are a working child who had for example, an apt attached to your home and your parent was under the section 8 program, you could not rent to that parent (with the intent to use the rental funds to pay for a home health aide for example) but your neighbor could rent to them and offer only a rental for that money.

There seems to be an assumption that family caregivers can not be trusted when govt money is involved, thus it is better to turn over the elderly and disabled to institutional care. However, many of us caregivers know we can do better than nursing homes and assisted living facilities given the right support.

shouldn't working caregivers get a larger tax credit/deductin if they are expending time by givng free cargiving that keeps an elderly or disabled relative out of costly medicaid nursing homes? Or at least a bonus credit toward retiring earlier without penalty.

Has anyone else any examples to add to my list? Or any ideas?

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Thanks for your reply. I found an organization called National Family Caregivers Association ( ) which seems to be working as an advocate for caregivers. you might want to look into this. From reading alot of the posts here it seems like there are many forgotten caregivers out there. My thinking is what little energy we have left we should try to make our voices heard. At least all it requires is a computer and some time.. look at their caregiver advocacy page. there is another group called the national consumer voice for quality long term care which also seems to be working to improve services their website

I can totally agree with this subject matter being that i am raising 2 children and I am a caregiver to my husband who is still in moderate mobility and health. I need more hours or I have to find a second job that allows me to work part time because when the day comes its gonna be me and the kids. I have to support them and i truly believe govt doesn't support the idea of family caregiving because of the so call fraud and abuse which in my case is not true. If the govt desires the need to save money then they should let families shoulder the care before its their time to go into hospice care because we save them beds for the serious needed cases that need to be in a nursing home that do not have a support system there for them. I also think its has to deal with ageism and mentally of some care being given out and being recieved by the family member. We put up with alot more before they even reach nursing home lvl and we could use a signal that says yes being Caregiver is a job and a career whether ppl view it as such its need to be heard more.

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