Episode 8: The Impact of Public Policy on MS Caregivers with C. Grace Whiting

[00:00:00] The dictionary defines the word conundrum as a confusing or difficult problem.

[00:00:06] Its synonyms include quandary, dilemma, puzzle, and enigma.

[00:00:12] Welcome to the MS Caregiver Conundrum.

[00:00:34] To provide family leave, access to care, financial support, prescription drug costs, tax credits

[00:00:41] for home modifications.

[00:00:43] These are just some of the public policy issues that affect MS Caregivers every day.

[00:00:49] When it comes to advocacy, the National Alliance for Caregiving is a leader in conducting

[00:00:55] policy analysis and tracking legislation dealing with family caregiving issues.

[00:01:01] Joining me to discuss the impact of public policy on family caregivers and to highlight

[00:01:06] some of the public policy wins and some of the public policy challenges that affect family

[00:01:11] caregivers is C. Grace Whiting, President and CEO of the National Alliance for Caregiving.

[00:01:25] Grace Whiting is the President and CEO of the National Alliance for Caregiving, an

[00:01:30] organization dedicated to conducting research, doing policy analysis, developing national

[00:01:36] best practice programs, and increasing public awareness of family caregiving issues.

[00:01:43] The NAC really ensures that the issues affecting the more than 50 million unpaid family caregivers

[00:01:49] in the United States are a part of the public policy conversation taking place at both

[00:01:55] the federal and state level.

[00:01:58] Thanks for joining me, Grace.

[00:01:59] Grace Whiting Thanks for having me, Jon.

[00:02:01] I'm really excited to be here.

[00:02:04] To put it mildly, it's an interesting time in our world.

[00:02:08] Over the past year, year and a half, hundreds of thousands of people found themselves taking

[00:02:14] on the role of a family caregiver.

[00:02:17] Do you think the pandemic has affected public awareness or perceptions of caregiving?

[00:02:23] And if it has, has that changed the public policy conversation here in the U.S.?

[00:02:30] The pandemic has definitely made people more aware of caregiving and in a couple of ways.

[00:02:37] I mean, I think people are more aware now of just what it's like to live day to day with

[00:02:42] the fear that somebody you love may get really sick or may have some type of disability.

[00:02:51] And I think that was really good for moving conversations forwards about work.

[00:02:56] You know, how do we work?

[00:02:57] How do we take time off for work to care for each other?

[00:03:00] Is it possible for people to maintain work-life balance and also get what they need in terms

[00:03:06] of financial support, social support and so on?

[00:03:10] I think what's been interesting is it and it's not even necessarily the pandemic.

[00:03:15] But for the first time in a long time, we have a president who is very aware

[00:03:20] of caregiving because he had a son.

[00:03:22] President Biden had a son, Beau Biden, who had glioblastoma.

[00:03:27] And he and Dr. Jill Biden had cared for their son.

[00:03:31] And then they had also launched the Biden Cancer Initiative.

[00:03:36] And in doing both of those things, you know, the president has been very clear

[00:03:40] about thinking about how to support caregivers.

[00:03:43] So I think that has changed the conversation and moved some things forward.

[00:03:48] But there's still a lot that could be done to better help people who are in this role.

[00:03:53] Well, I'd like to start by talking about where we are in terms of current policy

[00:03:59] initiatives and then where we need to be.

[00:04:01] So I'm hoping you'll get us started by giving us a quick overview

[00:04:07] of the federal caregiving legislation that's perhaps going to make its way through Congress.

[00:04:14] Federal caregiving policy and legislation is a really interesting space.

[00:04:18] So the great news is a couple of years ago, there was a bipartisan bill

[00:04:23] called the Raise Family Caregivers Act, and that created a new advisory

[00:04:28] committee within the U.S. Department of Health of Human Services.

[00:04:33] And that committee has identified 26 core principles

[00:04:37] that create the basis of a plan for caregivers.

[00:04:41] So you can see the federal government starting to think about how can we work

[00:04:45] more effectively across these different areas, whether that's labor,

[00:04:51] whether that's social security, whether it's health care,

[00:04:53] whether it's aging and disability related care.

[00:04:57] Now I think Congress is looking at those financial impacts

[00:05:01] and that was really stressed during COVID.

[00:05:03] So there are bills to propose tax credits to be able to write off

[00:05:07] some of the cost of family caregiving.

[00:05:10] And I think there's a general effort to try to beef up our health and social care system

[00:05:17] that really came out of COVID and really understanding where are there gaps

[00:05:21] and where do we need to help bridge some of these experiences

[00:05:25] where you might be caring for someone or you might not be able to work

[00:05:29] because of your care responsibilities.

[00:05:32] So how do we still get you the help that you need?

[00:05:35] There are more than 50 million family caregivers in the U.S.

[00:05:41] That's a lot of votes, yet we hear about legislative proposals.

[00:05:47] For instance, tax credit of a couple of thousand dollars for family caregivers

[00:05:53] and these fairly modest bills often have a tough time making their way through Congress.

[00:05:59] Why? Well, John, you're more diplomatic than I am because

[00:06:04] I would say they're not even just modest that many of these bills are underwhelming.

[00:06:09] And it is a question that I think about a lot.

[00:06:13] You know, we've got one out of every five Americans has some type of care responsibilities.

[00:06:19] Why hasn't there been more political will to do something to help caregivers?

[00:06:25] Part of it, I think, is we're not really sure what the solution is

[00:06:28] in the big picture sense.

[00:06:30] We know that people have issues with work, that they have issues managing finances,

[00:06:34] that they're often excluded from conversations in health care sector

[00:06:40] or with community based providers.

[00:06:43] But that doesn't necessarily cleanly translate into

[00:06:47] this is what we want the government to do.

[00:06:49] And part of that is we've not had that philosophical conversation as a nation

[00:06:55] as to how much a caregiving is something that should happen

[00:06:58] with government support versus something that's a family matter

[00:07:02] that we should be tackling internally.

[00:07:04] If you take the position that caregiving is just something about my family,

[00:07:10] then it's harder to make the case the government should be providing support.

[00:07:14] And so part of the stagnation is related to that.

[00:07:19] And we see that globally, you know, in Europe, people not only believe

[00:07:24] that the government should help you as a carer, but they also believe

[00:07:28] that you have the right to say you don't want to be a caregiver.

[00:07:31] We go over here to Asia and the Pacific.

[00:07:36] And we talk to folks in those countries.

[00:07:39] The idea that you could even choose to say, I do not want to be a caregiver

[00:07:45] just doesn't translate.

[00:07:46] It's not a culturally competent idea because the expectation is

[00:07:50] that you will always take that on and it's not the government's responsibility.

[00:07:55] The U.S. is sort of in between those two worldviews.

[00:07:59] Do you think it would help the conversation

[00:08:02] if the caregiving discussion was sort of predicated

[00:08:08] on a financial foundation?

[00:08:11] You know, in this country, we do believe that the government

[00:08:16] should offer support if you lose your job.

[00:08:19] They should offer your support if you earn a minimal income.

[00:08:24] They should offer support if you want to go to college

[00:08:28] and don't necessarily have the tuition to make it happen.

[00:08:31] We see time and again that in the realm of financial need,

[00:08:36] there seems to be an agreement that the government has some sort of role

[00:08:40] in our lives.

[00:08:42] And we also know that caregiving takes

[00:08:47] some sort of financial toll on the family

[00:08:51] anywhere from a modest toll to a very, very significant life changing toll,

[00:08:57] depending upon what the medical needs are and all that sort of thing.

[00:09:01] But shouldn't this really be a financial conversation?

[00:09:05] Yeah, I agree that the financial argument is one

[00:09:08] that's probably going to be more persuasive.

[00:09:11] And we certainly see that becoming more and more prevalent

[00:09:14] when people are thinking about this issue.

[00:09:17] AARP has a portion of the work that they do on their international arm,

[00:09:22] and they put out a report about caregivers in the workplace

[00:09:25] looking at the United States GDP and our economy.

[00:09:28] And they essentially in this report said, look, we could create

[00:09:33] several trillion dollars of benefit to our economic sectors

[00:09:39] if we just supported people who were caregivers

[00:09:42] and made it easy for them to work and provided some funding back to caregivers,

[00:09:47] because then they could take that money and they could go back into the workforce

[00:09:51] and they could also go out and be a consumer.

[00:09:54] You know, like you know, if I'm getting a stipend

[00:09:57] for caregiving support, I can also use that money to do things like buy food

[00:10:01] or, you know, go get a haircut.

[00:10:04] And so that stimulates the economy.

[00:10:06] So I think that's a piece of this.

[00:10:08] I think the other piece of this about, you know,

[00:10:11] we don't want people to impoverish themselves

[00:10:14] because they're trying to care for someone that they love.

[00:10:18] The most innovative approach I've seen to that is health systems

[00:10:22] that are working in a managed care setting.

[00:10:25] So you think about, you know,

[00:10:28] you know, these calm HMOs back in the 90s.

[00:10:31] But the, you know, the idea that you're in this sort of system

[00:10:35] and the system is trying to make everything work better.

[00:10:38] And many of the companies that manage care,

[00:10:43] whether it's Anthem or Blue Cross, Blue Shield

[00:10:47] or Centine Corporation or even big companies like United

[00:10:51] have recognized, hey, you know what?

[00:10:53] If I do more to help this caregiver,

[00:10:56] I can create a better health outcome for my patient.

[00:11:00] And that lowers my cost.

[00:11:01] So while it's not a direct financial support,

[00:11:04] it does, in fact, incentivize people

[00:11:08] to try to take better care of the caregiver.

[00:11:11] If we recalibrate our focus for a moment and look at the states,

[00:11:16] are there any caregiving initiatives at the state level

[00:11:19] that stand out to you?

[00:11:22] Hawaii has some really cool caregiving initiatives

[00:11:25] and they have for a long time.

[00:11:26] They've been a longtime leader.

[00:11:28] They have what's called the Kapuna Caucus

[00:11:30] and the Kapuna Caucus comes.

[00:11:33] That word Kapuna is a native word that means caregiving.

[00:11:38] And so that caucus is a group of folks from the community.

[00:11:42] And they talk to their state legislatures about this is what caregivers need

[00:11:46] in our state, a couple of things that they've done

[00:11:49] that have been really impressive.

[00:11:50] In addition to that, creating a state plan for caregiving

[00:11:54] and then also creating a new piece of legislation

[00:11:58] that allows for long term care insurance

[00:12:01] and to be able to cover the cost of long term care.

[00:12:04] So if you needed help paying for a nursing facility or a home care aid,

[00:12:09] you know, this bill or law actually now really opens the door to that.

[00:12:15] And I think that's pretty it's pretty neat.

[00:12:18] I would say the other thing is many states

[00:12:22] are thinking about sort of family caregiving plans for their states.

[00:12:26] And that's a good starting place and a place that I think is relatively easy

[00:12:30] to push because you're essentially getting people together to say,

[00:12:34] you know, what can we do better?

[00:12:36] And then paid fill in medical leave has just

[00:12:39] really been picking up in the states to the point

[00:12:41] where it's putting pressure on the federal side

[00:12:45] and it's putting pressure on employers who are saying, you know what,

[00:12:48] maybe we do have to think about caregiving

[00:12:51] and do have to think about paid leave because whether we like it or not,

[00:12:54] we're going to have to accommodate workers with these responsibilities.

[00:12:58] So that I would say is also moving forward.

[00:13:02] In February of this year, the National Alliance for Caregiving

[00:13:06] published a report titled From Momentum to Movement

[00:13:10] Developing a Unified Strategy to Support Family Caregivers Across the Nation.

[00:13:16] Writing the forward in what I'll call a combination report and call to action.

[00:13:21] You make the case that it may not be the federal government,

[00:13:25] but the states who manage the public health of the American people.

[00:13:29] I think we've seen the reality of that statement

[00:13:32] illustrated by the way different states have chosen to manage the COVID-19 pandemic.

[00:13:38] This is a really outstanding report that defines and recommends

[00:13:43] a strategic process for developing state level caregiving strategies.

[00:13:48] It identifies core policy domains for state caregiving strategies.

[00:13:53] And the report even includes case studies that illustrate how this process can work.

[00:13:59] What was the motivation in putting this report together?

[00:14:03] Well, first, I just have to say I can't take any credit for the report.

[00:14:07] It was all my team who work really closely with a group

[00:14:11] we call the Advocacy Collaborative.

[00:14:13] So these are folks that are actually providing

[00:14:16] some type of support to caregivers in their states and communities,

[00:14:20] and they operate in coalition.

[00:14:21] So they meet up once a month virtually and we talk about what they need

[00:14:26] and where we can learn from what they're doing on the state level,

[00:14:30] but also where they can learn from us what's happening on the federal level

[00:14:33] or the global level.

[00:14:35] One piece of this was over the years, we've done guidebooks

[00:14:39] that kind of help people get started on advocacy.

[00:14:43] And what we noticed is that when you look at other nations,

[00:14:47] they have these national plans and even in the United States,

[00:14:51] we have national plans in some areas that really helped move things forward.

[00:14:56] So you can look at cancer or HIV

[00:14:59] and see the progress that's been made over the last 30 years.

[00:15:03] Then we looked at Alzheimer's.

[00:15:05] So Alzheimer's for a long time was very stagnant

[00:15:08] in terms of improving the situation of people living with Alzheimer's

[00:15:12] and improving the science.

[00:15:14] About 10 years ago, the National Alzheimer's Project Act was passed

[00:15:18] and that created a plan and it makes sense, right?

[00:15:22] You need a road map if you're going on a road trip.

[00:15:25] And by creating that plan, it gave people a starting point

[00:15:29] to really work together and to say, you know what we really need

[00:15:32] is more money for research and we need to better understand

[00:15:35] what's happening to dementia caregivers.

[00:15:38] So we have in the last 10 years reached a milestone

[00:15:43] in terms of two billion dollars to fund new research

[00:15:47] to understand Alzheimer's.

[00:15:49] We've also reached a milestone in sort of the NIH now does

[00:15:54] every three years a meeting just on dementia care and caregiving.

[00:15:59] And, you know, this past year, we had an Alzheimer's drug

[00:16:03] that's been approved by the FDA in the first one a long time.

[00:16:06] So I think the idea was looking at and saying, OK,

[00:16:09] we know we need a national plan and we know that's in the works.

[00:16:13] But part of what the national plan benefits from is understanding

[00:16:17] what states are doing because states can be laboratories

[00:16:20] and kind of figure out certain aspects

[00:16:23] that then feed into the national plan.

[00:16:26] And we know that their efforts to have a global action

[00:16:28] plan for caregiving.

[00:16:30] So I think the idea here was to to think about

[00:16:34] can we take the really great knowledge that's happening on the state level

[00:16:38] and push people to really learn from each other so that that can inform

[00:16:43] the top down approach that's happening in other areas of caregiving.

[00:16:48] Can you share what the core policy domains

[00:16:52] identified in this report are really all about?

[00:16:55] Absolutely, there's essentially five domains.

[00:16:59] And again, these were developed looking at the Alzheimer's Project Act

[00:17:03] and where the Alzheimer's National Plan is global efforts,

[00:17:07] such as the Embracing Careers Initiative,

[00:17:10] the International Alliance of Care Organizations

[00:17:13] and other national efforts to kind of create a plan for caregivers.

[00:17:17] So we looked at five different aspects,

[00:17:20] one just understanding how caregivers fit into the health care system.

[00:17:24] So that could be where we can assess people.

[00:17:28] You know, you go to the hospital with your partner

[00:17:31] and the nurse is trying to figure out, well, what do I do with this person

[00:17:35] who's also here with a patient?

[00:17:37] You know, so that may be assessment.

[00:17:39] It may be including people in medical records.

[00:17:42] It may be providing some kind of training

[00:17:44] so that when you go back home, you know what it is you're supposed to do

[00:17:48] to help care for them.

[00:17:49] We also have a pillar around expanding caregiver education

[00:17:54] and training really for the caregiver's own health.

[00:17:58] And not often it's left off.

[00:17:59] We talk a lot about how do we help the caregiver provide care,

[00:18:03] but we don't always talk about how do we help this person care for themselves?

[00:18:06] And that's something that you really do have to learn how to do.

[00:18:10] You're not naturally going to move into that.

[00:18:14] There's a component on financial security in caregiver friendly workplaces.

[00:18:18] There's a component on respite care,

[00:18:21] which is one of the few evidence based interventions

[00:18:24] to really help family caregivers.

[00:18:26] And then a component around the idea of person

[00:18:30] and family centered care and shared decision making

[00:18:33] or supported decision making you sometimes hear it called.

[00:18:37] And that is really, you know, thinking about how do we make decisions as a family?

[00:18:43] Whether that's a family, you know, by marriage or by blood relation or what have you.

[00:18:49] But how do we make a decision as a family

[00:18:52] and how do we encourage our systems to do a better job of listening

[00:18:58] to what families need and want when they are providing care?

[00:19:02] The NAC report really offers a blueprint for the kind

[00:19:06] and quality of coordinated caregiver support

[00:19:09] that we've never seen before in this country.

[00:19:13] So how do we make it happen?

[00:19:16] What should be the next steps?

[00:19:18] One thing is just investing in some of these programs at the state level

[00:19:23] and finding people at the state level who are interested in caregiving

[00:19:28] and who want to make things happen.

[00:19:29] I mean, you really can't underestimate or undervalue

[00:19:33] the impact of a motivated person who's going to go door to door

[00:19:37] or host a meeting at their library or work with the local university

[00:19:42] to really bring the issues to the forefront.

[00:19:45] So I think that's the first part is, you know,

[00:19:48] it's so easy, I think, to be, oh gosh, I don't know if I can do that.

[00:19:53] I, you know, I didn't go to law school.

[00:19:55] I'm not a, you know, lawmaker.

[00:19:57] And I think when we look out at our advocates and our network

[00:20:01] and our colleagues, we see that a lot of folks are just regular people.

[00:20:04] They've had a caregiving experience

[00:20:07] and then they got connected with a local community based organization.

[00:20:10] And that helped move it forward.

[00:20:12] So I think the first thing is it's just to let people know

[00:20:15] like you have more power and ability to affect change than you even realize.

[00:20:21] So just getting out there and making noise is a great place to start.

[00:20:26] The second thing is, you know, on that funding piece,

[00:20:30] encouraging philanthropists to invest in caregiving programs,

[00:20:35] invest in building caregiving infrastructure at the state level

[00:20:39] and giving places, you know, whether those are small grants or what have you

[00:20:43] to help people get organized and identify what it is they need.

[00:20:47] And I think the third piece is really connecting in with the existing networks.

[00:20:51] You've got, for example, groups like the Arch Respite

[00:20:56] or National Respite Coalition.

[00:20:58] And there's a whole network of different respite care providers across the U.S.

[00:21:03] So connecting in with those folks, connecting in with the area agencies

[00:21:07] on aging or the disability centers or local chapters of disease specific

[00:21:12] organizations in many cases, they'll already have resources

[00:21:17] to help train people to engage with lawmakers and regulators.

[00:21:22] And that's a great place to start because then you don't have to learn it off

[00:21:25] from scratch. You can work with other people who've been there before.

[00:21:30] Well, Grace Whiting, thank you for your remarkable leadership

[00:21:33] and the relentless advocacy of the National Alliance for Caregiving

[00:21:38] on behalf of family caregivers all across our country.

[00:21:41] And thanks for joining me today.

[00:21:44] Thank you, John. It's a pleasure to be here.

[00:21:46] I want to thank you for joining me for the eighth and final episode

[00:21:50] of the MS Caregiver Conundrum.

[00:21:52] If you've missed any of the previous episodes from this special series,

[00:21:56] you can find them at MSCaregiverConundrum.com,

[00:21:59] Apple Podcasts, Google Podcasts, Spotify or wherever you find your favorite podcasts.

[00:22:07] And I hope you'll join me on the Real Talk MS Podcast,

[00:22:11] where we're always talking about the role of MS caregivers and the issues that affect them.

[00:22:16] The MS Caregiver Conundrum is sponsored by EMD Serono's Embracing Carers Initiative.

[00:22:22] You can learn more about the Embracing Carers Initiative by visiting

[00:22:26] embracingcarers.com.

[00:22:29] I'm John Strun. Thanks for listening.

[00:22:33] Stay safe and make healthy choices.