National strategy for caregiver support

Ed1937

I just now found this, and haven't really read much about it. But today is the last day you can leave comments. https://acl.gov/CaregiverStrategy  

Jo C.

Still feel that they especially have missed much of what the average middle class levels are facing in the concrete care of adults needing full time care; the impoverishment of the middle class spouses who lose their assets for their own old age by spending all or most all on the current need of the ill spouse did not feel deeply addressed.

Also feel they vastly missed the fact that in-home paid care aides are greatly needed for many in the older caregiving population but it is not affordable; and again, that tremendous cost of caregiving needs is putting the middle class levels at great risk and money runs out IF one has sufficient assets to pay for much; many just do not have adequate assets.  They discussed putting more care through Medicaid, but that again leaves many without due to qualification issues; not everyone has Medicaid. Some will qualify for Medicaid, some won't; each state has differences in their Medicaid programs and qualification criteria for services; as we well know, it can be difficult to qualify.

Tax deductions were discussed as though this would help with the cost of ongoing caregiving; but that is not providing the day to day financial needs.  If one has no money up front, it does no good to have a few hundred dollars deducted on paper from payment of taxes at a year's end.  That does not pay the costs or even permit hiring part time aide care much less daily aide assistance when it becomes necessary.

It seemed it was easier for the national strategy document to address thinking re caregiving for children.

The writing stated that white caregivers spent 14% if their income on caregiving, while Hispanics spent 44% and the African American population spent about 34%.  They got this figure from a survey but did not say when, where or how they did the survey and of what ages or any of the demographics and how many were surveyed.  While there may be some income disparities, (we do not know the average income of each group or scale of income), the overall statement did not feel quite accurate; some things may have been missed.  And since this national strategy covers the caregiving of minor children as well as older population caregiving, we do not know if they surveyed both populations or whether input was greater with one population than another.  Sure would like to know the facts re that survey to know how much was accurate or not.  Data affects those making the laws and setting forth the plans for their stated purpose.  Must be very cautious of data which can contain serious errors and even manipulation. 

It was a wordy tome of pages and pages, and I eventually lost track.  Wish it was a small enough document to print off so I could read it more slowly and effortlessly.  It was not digested as well as it should be. 

Lots and lots and lots of wordy words.  Some changes they suggested could possibly come from adding benefits to Medicare; probably best to not hold our breath on that expectation.  The Medicare adjustment to add some items was stated in one area in passing and did have some good suggestions, but just try to get the funding AND reasonable criteria for just who would qualify for services AND if it would even gain approval.  Political football probability on that one.

However; hope springs eternal,

J.

Rennbird

Our government wants to write off billions of dollars in college debt.  Why not spend that money on all the folks with these terrible neurological diseases many of whom worked hard and paid taxes for 60, 70, 80 plus years.  I think I know the answer.  We are old and do not count.

Jo C.

 It is true that the older population especially is not a very visible vocal voting bloc; there is no pandering to the older population and their issues and needs that exist; not just in the caregiving category.  Not enough noise is made in this category of citizens so it is not heard and it garners hardly a tidge of media attention except on a rare basis for just a moment.  If there was ongoing visibility with loud and consistent  noise and even acting out in great throngs, then it would be considered media newsworthy in an ongoing manner; and if those running for office felt that their election or re-election hinged hugely on this category of voters, then watch the dynamics change; but that is just not so at this time.

I suppose that somewhere, there is someone willing to organize and put together a HUGE ongoing group of the older population on a nation wide basis with large crowds gathering to make a whole lot of noise.  It would need a catchy ID with in your face spokespersons and of course, a catchy name; perhaps something like, GLAS:  "Gray Lives Are Significant."  Significant part of society, but also a significant group of voters with power potential in sheer numbers.   There would be better names out there, but you get the idea.

Until then . . . . it seems nothing much changes and it takes time.  Thank goodness for our supportive AlzConnected; it is of wonderful support, it is a place where people are heard and cared about and knowledge is shared.  Thank you to the Alzheimer's Association for continuing to provide resources to fund it and keep it running which is no small thing.

J.

Rennbird

Each member of the House of Representatives and each Senator should be required to read the ALZCONNECTED chat room posts at least once a week.  Maybe then they would recognize how really screwed up and “deplorable” the entire situation is.  My husband has been dead three years and I periodically revisit this website.  What people are facing on a daily bases is criminal.  I am all for finding a cure but in the meantime, you caregivers are suffering.  How about the government provide you with a “safe space”.  Dementia Lives Matter