Thinking through what the AHCA could mean for my Mom (and yours)

A post by a rang in my ears, and echoed a lot of my initial reactions as I read through the Senate’s version of the proposed healthcare legislation.

 'On my weekly visit to my mom I wonder - has anyone who supports this bill ever visited a nursing home? ...Surely they must've had some middle class family member who despite working their whole life, needed Medicaid to survive?'

This led me to think about our situation, and I just wanted to share my thought process – things I’ve learned about the standard trajectory of geriatric healthcare for someone with a chronic illness, and the costs that come alongside these services. 

Most folks my age (and even many folks in my parent's generation, I'd imagine) haven't sat down and mapped out the costs of protracted, intensive care services in a nursing home. Many of us also lack a full understanding of what is covered by our personal health insurance plans, versus what is covered by Medicare and Medicaid. Here is one important distinction that I think is captured well in this interview with Jane Gross, who wrote a book on caring for her aging mother: 

MARTIN: What's the one thing you wish somebody had told you before your mother started to decline that would have helped you?

GROSS: …I would say the other thing that I wish I had known was that Medicare, which most of us believe is universal health care for old people and that no one explains to you beforehand is that it covers procedures and drugs and operations and doctors, but it doesn't cover custodial care. So if your mom is home and you need a home health aide or you need somebody to drive her around or you need somebody to help her unpack the groceries, Medicare covers none of that. And it's hugely expensive. And you pay for it out of pocket until you're impoverished. And then Medicaid, as a poverty program, picks it up. I wish I'd known that.

This, was the biggest missing piece for me. Prior to caring for my mother, I hadn’t realized that Medicare services didn’t include respite care or any portion of coverage for nursing home services.

Additionally, over the past year, Charlie and I have begun researching costs. Average nursing homes in the Lexington area that provide full services for Alzheimer's care range from $8,000 - $10,000 -- a month(!).

To tie back to my story – I’d note that my mom has worked hard as an educator all her life. She was relatively frugal, diligent about saving, and has a great pension. However, it's still likely that we'll run her accounts dry with the rate of these costs if she has to live in a nursing home for years, as many folks do. And the more geriatric care books/advice sites that I read (and personal stories that I hear), the more I'm realizing this is the norm. Once personal savings and funds are dry - Medicaid kicks in. (*Also worth mentioning that this only applies to those residing in a nursing home where Medicaid is accepted, and often waitlists for these homes are 2-3 years long.)

As a side note -- these costs are inane/unsustainable and it's a huge burden/impact on the funding horizon for Medicaid. I'm not saying our current course is sustainable or that our existing health insurance structure addresses this growing gap in a targeted way. Reform is definitely needed.

BUT, the reality of the proposed changes in the Senate (and in the previous House) bill will have a hugely detrimental impact on the quality of care (and costs of care) for seniors, and will provide no reform needed to curb these costs or increase overall funding to this critical social safety net.  

I don't think this is something most folks my age are thinking about. Many folks in my mom’s (and in my) generation are beginning to realize what I missed on Medicare/Medicaid and starting to plan – through purchasing long term care insurance or saving even more for retirement.

But there are so many things we can’t plan for; my mother was banking on ten more years of working (and saving) prior to retiring, and likely hoping for decades more before she battled the type of illness she is currently facing. Alzheimer’s does not run in our family. We were truly blindsided by her diagnosis. While our family’s story might be an outlier, it felt random and unexpected and unlucky to us, which should serve as a reminder that this could happen to anyone.

Overall, I think we’re all unaware of (or simply avoiding) the impact of what will happen in our nation during the next 5-10 years if we cut Medicaid, fail to develop a mechanism to help aging seniors build up more savings, and do nothing to curb costs.

Lastly – I went back and forth on whether or not to share this. Speaking bluntly about the reality that Mom may have to end up on Medicaid sheds some light on Mom’s personal financial status. I asked some folks about their initial reaction to the post, and I realized it may make some uncomfortable to know my Mom might have to be on Medicaid. But the more I talked through it, the more I realized I think a lot of that impulse reaction comes out of a narrative which equates dependence on Medicaid with a lack of responsibility – not just for my ailing mother, but for children, seniors, single moms, young adults, the mentally disabled (which affects another person in my household; a whole other post in it’s own right). And on and on I could go.

Honestly, I’m saddened and angry that this narrative is so pervasive. 2/3 of seniors currently living in nursing homes depend on Medicaid to help cover costs. More generally, 1 in 5 Americans depend on Medicaid for healthcare coverage. Talk to me separately about a policy that builds out more options for 20% of Americans, that addresses the rising costs of healthcare, and that acknowledges the humanity of those depending on this critical social welfare program as their lifeline* (*NOT metaphorical). But don’t underestimate my intelligence and inability to read between the lines of the current legislation – what the Republicans are peddling is a policy change that will provide huge tax breaks to the wealthy, result in deep cuts to the social safety net, and change the landscape of what services are provided under most plans.  And all of this is spun under the auspice of ‘curbing costs and premiums.’

We can restructure our healthcare system without heaping the costs onto the backs of our weary seniors and vulnerable children. We can, and must do better. Let’s be aware of the full implications of this policy, including what it could mean about the quality of end-of-life care for my Mom, and for yours.

I’ll be calling my representatives and protesting and raising hell, and I hope you’ll do likewise. A post by a friend ringing in my ears tonight 'On my weekly visit to my mom I wonder - has anyone who supports this bill ever visited a nursing home? ...Surely they must've had some middle class family member who despite working their whole life, needed Medicaid to survive?'

And this led me to think about our situation, and I just wanted to share how personally the implications of this bill could hit our family -- and yours.

Most folks my age (and even many folks in my parent's generation, I'd imagine) haven't sat down and mapped out a road map/the costs of protracted, intensive care costs in a nursing home. Charlie and I have begun researching costs, and average nursing homes that provide full services for Alzheimer's/dementia care range from $8,000-$10,000 -- A MONTH. My mom has worked hard as an educator al her life, was relatively frugal, diligent about saving, and has a great pension. However, it's still likely that we'll run her accounts dry with the rate of these costs if she has to live in a nursing home for years, as many folks do. And the more geriatric care books/advice sites that I read (and personal stories that I hear), the more I'm realizing this is the norm. Once personal savings and funds are dry - Medicaid kicks in. (*Worth noting this only applies if you live in a nursing home where Medicaid is accepted, and often waitlists for these homes are 2-3 years.)

As a sidenote -- these costs are inane/unsustainable and it's a huge burden/impact on the funding horizon for Medicaid. I'm not saying this doesn't need to be addressed or that Medicaid should serve as a 'blank check' type of social service. Reform is definitely needed. BUT, the reality with the proposed changes in the current bill is that they will have a hugely detrimental impact on the quality of care (and costs of care) for seniors and will provide no reform needed to curb these costs or increase overall funding to this critical social safety net.

I don't think this is something most folks my age are thinking about - but by the time it triggers, it will be of huge importance to our generation as more of us step in to care for ailing parents.

Just wanted to share. I'll be protesting and calling and marching, but I also wanted to speak out and talk about the implications for the bill on my family in my own little corner of the internet.

A post by a friend ringing in my ears tonight 'On my weekly visit to my mom I wonder - has anyone who supports this bill ever visited a nursing home? ...Surely they must've had some middle class family member who despite working their whole life, needed Medicaid to survive?'

And this led me to think about our situation, and I just wanted to share how personally the implications of this bill could hit our family -- and yours.

Most folks my age (and even many folks in my parent's generation, I'd imagine) haven't sat down and mapped out a road map/the costs of protracted, intensive care costs in a nursing home. Charlie and I have begun researching costs, and average nursing homes that provide full services for Alzheimer's/dementia care range from $8,000-$10,000 -- A MONTH. My mom has worked hard as an educator al her life, was relatively frugal, diligent about saving, and has a great pension. However, it's still likely that we'll run her accounts dry with the rate of these costs if she has to live in a nursing home for years, as many folks do. And the more geriatric care books/advice sites that I read (and personal stories that I hear), the more I'm realizing this is the norm. Once personal savings and funds are dry - Medicaid kicks in. (*Worth noting this only applies if you live in a nursing home where Medicaid is accepted, and often waitlists for these homes are 2-3 years.)

As a sidenote -- these costs are inane/unsustainable and it's a huge burden/impact on the funding horizon for Medicaid. I'm not saying this doesn't need to be addressed or that Medicaid should serve as a 'blank check' type of social service. Reform is definitely needed. BUT, the reality with the proposed changes in the current bill is that they will have a hugely detrimental impact on the quality of care (and costs of care) for seniors and will provide no reform needed to curb these costs or increase overall funding to this critical social safety net.

I don't think this is something most folks my age are thinking about - but by the time it triggers, it will be of huge importance to our generation as more of us step in to care for ailing parents.

Just wanted to share. I'll be protesting and calling and marching, but I also wanted to speak out and talk about the implications for the bill on my family in my own little corner of the internet.