Medicaid

On August 16th we hosted our 6th Daughterhood conversation on Zoom focused on Navigating Home Care for Your Parents. I was joined by Andrea Cohen, founder, and CEO of Houseworks and Christine Lee, founder and CEO of Companion Home Care Solutions, an agency that provides in-home care in San Diego California and San Diego Daughterhood Circle leader.  Both women are owners and operators of top-notch, amazing home care companies that deliver and provide home care services, and both are also deeply involved in caregiver advocacy and support.

Please feel free to DOWNLOAD this tip sheet that Andrea Cohen has made available that can help you select an agency.

Here are some highlights from our conversation!

Anne:  How does someone know when it’s the right time to try to bring home care services into the home of a loved one or a parent?

Christine:  The first step is to take note of where you are in the process. Did a crisis just happen? Did your mom or your dad or whoever it is that you’re caring for just have a fall? Did you get a call from the hospital discharge planner that your mom’s getting discharged in two hours?

Or maybe you’re not in crisis but you’re planning ahead because you’re starting to notice certain things. For example, in your last visit you’ve started to notice that some things seemed off and that it’s maybe time to start thinking ahead so you don’t end up in crisis mode. It’s always better if you can start planning ahead rather than go through this in crisis mode.

Anne: What is “homecare” anyway?  I know it can be confusing in a crisis because the Medicare program does have a home health benefit and we’re talking about home care, which is different, right?

Andrea: That’s a good question because as you said there’s home care, home healthcare and there’s in-home care. When you get out of the hospital or out of a rehab you’re entitled to certain services through your insurance provider whether it’s Medicare or another insurance you have. And home care (the kind that we are provide) sort of wraps around what you get. With so many people there’s a gap between what you might get through your insurance and what you need and that’s where home care comes in. As you can see there’s a lot of complexity here.

Home care is for people who might have chronic care needs where there’s not the ability to get better and better and they’re basically living at new normal, with daily needs for help with basic life activities like eating and bathing. Home care tries to figure out ways to help people live productive, wonderful lives.  Even though they can’t do as much as I might like they can do a little bit more. That’s our job. In contrast, Medicare-covered home health is aimed much more at short-term rehabilitation following a hospital stay.

Anne: It’s such a hard thing for a lot of people to understand that Medicare is ultimately a health insurance program. People are always surprised when a crisis happens and they ask, “Oh my gosh, how is my mother going to be bathed every day? How is she gonna get fed? Who is going to supervise if she has cognitive impairment or dementia? How am I going to do my job while all those things are being done?” Those are all home care services but they are not covered by Medicare.

For home care, people pay privately, or they just do the work themselves. Sometimes Medicaid will pay. I think one of the misconceptions among caregivers and older adults is that you’re either getting services at home in your traditional family home OR you’re choosing an assisted living facility or an independent living facility. And I think that it’s important for people to understand that it’s not necessarily an either/ or. But it’s not, right?

Andrea: Independent living or assisted living can also be called “independent seniors housing,” or “senior living,” so I’ll use those terms interchangeably. In independent living, you’re basically getting someone at the front desk and maybe a good emergency call system but no staff that are dedicated to supporting your health care needs unless it’s an add-on. And in assisted living you get a certain amount of service but generally, as people age in place, they end up needing more than senior housing and residence or the independent living can provide.

Companies like mine and Christine’s might be called upon by either the resident, the family themselves or even the senior living resident care director explaining that this resident needs extra care. And if you’re looking at senior living one of the first questions to ask is what accommodations can support my parents as they age in place and what kinds of relationships do you have with home care companies. Because the key to getting great service in senior living is ensuring that there’s a good relationship between the home care company and the senior housing residence. Communications between senior living and home care provider are really important. Christine, what do you think?

Christine: Oh, absolutely the communication piece is critical. Also, I know that this has come up with a lot of our clients: Maybe they move their parents into memory care and then they get a phone call from the senior living community saying “Oh, your mom actually needs more care than we’re able to provide.” So, they bring us in and that’s an additional cost that they weren’t prepared for. Another good question to ask senior living is what is the process after we move when my parents need additional care? Can you provide that? Do you partner with a home care agency? Or am I going to have to find out by myself? What’s the process? 

Anne: What if someone just wants to stay at home. How do you help them do that?

Christine: It takes a team of individuals. The question to ask is what’s it gonna take to safely keep someone at home. What type of equipment is needed? For example, we partner with a durable medical equipment store and supplier. We refer pretty much all our clients to them because we need to make sure that they have the right equipment in place to even stay at home. A good home care agency is going to have these types of partnerships in your local community. They should be able to refer you to all the services you’re going to need. And it’s not just home care. There’s also the financial piece. There’s the elder law attorney and the estate planning attorney.  There are so many different professionals involved when caring for somebody that’s aging or disabled. It’s a group effort, a team effort and you need to tap into those resources in order to keep somebody at home for that long.

Anne: And this is the piece that is so intimidating to the caregivers.

Andrea: Absolutely, when I speak on this topic, I have a big slide on how you need a team to avoid a crisis. When I’m working with a family that I’ve been working with for a while, I think to myself who in the family is best at doing what? Maybe one sibling is really good at dealing with the attorney and putting all the papers in place and one is really good at being the liaison with the home care company. The interesting part is that your family needs to become a team. Sadly, families don’t often work together as a team doing this. The entire family goes back into all their old roles growing up as siblings and it all comes out in crises. The trick is to just figure out the best person to do it and let them do it.

Christine: Yeah, that is probably one of the most common topics that comes up in our Daughterhood circle meetings.  Family dynamics, and sibling dynamics in particular. Over and over, we hear “this sibling doesn’t do anything, I do all of it”.

Anne: What advice do you have for family caregivers who are trying to persuade their parents to accept some help at home?

Christine: Well, it matters who delivers the message. For example, we have some clients that are really, really good patients. They don’t listen to anybody in their family but they’re good patients and so if advice comes from a doctor or a third party (not their family) they might actually listen. So, it matters who delivers that message. It’s just something that’s part of the family dynamics. If it comes from one son or daughter, they might not listen but then another son or daughter says the same thing and suddenly it makes sense. So sometimes it matters who delivers the message. Decide who in your family is best to deliver the message?

It’s also helpful to sometimes start with baby steps. You might feel like they need help eight hours a day but it’s just not gonna happen. Sometimes you just need to start small and get what you can get. So instead of getting them to agree to eight hours a day you might be able to talk to them into letting someone come in for three hours. What has worked a lot with our clients is to say that they’re not getting a caregiver, what they’re getting is a personal driver to drive them to their doctors’ appointment or a personal chef to cook their meals. They’re not getting a caregiver to come in and out.

You see, it might be just the “caregiver” title that’s upsetting because they don’t want to feel like they’re losing their independence. But they still need to be cared for. So, sometimes a little of what we call therapeutic lying is needed. It’s important to be creative on all the titles you’re giving things and individuals coming into the home. In that way your family member still feels like they’re in control. That’s really the biggest thing.

Andrea: That they have a choice.

Christine: Exactly and sometimes you just need to drop it for a little bit.

Andrea: Yeah, it’s a process. For those of us who are type A, which is probably a lot of people on this call, it’s like OK, I’m gonna start to get it done and here we go, and it just doesn’t work that way.

The other thing that I’ve noticed is that in most families you don’t have that conversation. In every family there’s just stuff you don’t talk about. For one because your families never talked about it before. It can be helpful to preface it with “I know this is a hard conversation and I can imagine how hard it is for you to talk about this, but I just have to bring it up.”

So, bring it up and then feel the tension and then drop it. And then just keep bringing it up so it becomes like a muscle, and you get to the point where it’s not awkward and weird. Remember, you’re doing something that you’ve never done before and it’s hard.

Christine:  Even if your parents are not yet willing to accept help, you can at least start making the phone calls before a crisis. That way, at least you’ll then know exactly who you’re gonna call.  It’s kind of like having a car that’s on the verge of breaking down. You don’t want to wait until your car is completely immobile before you start shopping. Again, even if they’re not willing to accept help you’ll at least have a number to call.

I would suggest that even if you haven’t signed up for our service yet.  It’s still a good idea to have our signed service agreement in place. That way we’ll be prepared to do whatever we can to get help to you within just hours’ notice if something happens.

Again, just be proactive because a lot of times, it’s all gonna fall on your plate anyway. Do what you can do to not get yourself into a crisis. The crisis might still happen but there are things ahead of time that you can do to get yourself out of the crisis.

Andrea: Yeah, that’s a great point.

Anne: Here’s a great question from the chat.  “My mom is afraid of having a caregiver in her home. What if they’re dishonest and can’t be trusted?”

Christine: That comment is about fear, right?  Her mom is afraid that someone is going to come into her home and help themselves to everything in her house and basically steal things. Honestly, that’s one of the biggest selling points to using a professional home care agency versus hiring privately. Because when you use a professional home care agency, protections are in place. Employees are licensed, bonded, and insured.

Professional home care agencies also have workers comp insurance, which is a big deal because the rate of injury for caregivers is humungous. In fact, worker’s compensation is the biggest line item in terms of an expense for a home care agency. By hiring a professional caregiving company that safeguard is our expense not yours. It’s the same thing with bonded insurance.

Also, talking with your mom and helping her understand all the things that a home care agency can offer can alleviate some of those pain points. Just focus on the security and all the different protections that are in place.

Andrea: A lot of times families ask us to interview the caregiver before they actually come. We used to do that in person. We’re looking to resume that now because for a lot of caregivers it’s hard for them in a zoom environment to really express who they are. Sometimes we send along a bio of the caregiver because you basically want to humanize the profession.  We want people to understand that this person is going to the home because they want to. They want to be there.  And they want to do the best job that they can.

But again, that goes back to what Christine said about what makes a good company. Ask them!  How do you introduce the caregiver to my parents? Do you have a case manager that I can call? Who is my point person at the agency?

Oftentimes we think that we put the best caregiver in and it totally works. Other times we think we put the best caregiver in and it doesn’t work because sometimes it just doesn’t work. And if the match doesn’t work, we’ve just got to say “Ok, let’s try someone else”.  You don’t want to erode trust.  You started the process and if you put a person in that doesn’t work you need to move to replace them. And quickly.  I always use myself as a test. I ask myself how would I feel if somebody did that to me? and then I change up everything that I’m doing. There’s an art to the delivery of care. A total art!

Anne: Here’s a really good question from the chat: “How do you talk about cost and finances, especially to parents?”

Christine: So, I don’t even know whether to say this because I think it’s so controversial and I know home care is so expensive. But you know what? it’s honestly not expensive enough. And I say that because I own a home care agency and even though I think we treat our employees well and we offer benefits and all of that. At the end of the day, they’re still not being paid enough.

It kind of drives me crazy when I read article after article after article about how home care workers are not being paid enough. It should really be more of a social discussion about how much we value caregivers and what they bring to the table. What if we did pay them for what they’re truly worth? Could you imagine what the cost would be? It’s an absolutely needed profession but they’re not paid enough and that’s the truth. And I’m saying that as a home care agency owner.

Anne: I think it’s important to say that. We have a huge crisis. We don’t have enough workers and it’s a problem. They don’t have this problem in other countries. We’re kind of on our own. Andrea, your thoughts?

Andrea: It still all comes back to thinking about what your choices are and talking to your family about it. This is where you’ve got to pull together your family team and ask questions like who’s going to support this if your parents don’t have enough money? Are family members willing to put in some money? Cause that’s going to determine where your parents are going to be staying. Many families may not be able to afford 24-hour care seven days a week at home and they might have to place their parents into a long-term care facility and you’re gonna want to know when that is.

So, it can help so much to just have a sense of what you’re gonna do and that’s where a good elder law attorney might be able to help. Also, a good financial planner can help as you think through long-term care issues.  Christine said in the beginning about possibly making some home modifications.  I live in a house right now that has four levels and I keep saying to my husband we better do something fast. We need to think about this because otherwise we’ll have to move.  So, you just have to keep having those conversations which are not easy to have, especially with parents. It’s really hard.

I remember talking to one of my wisest friends.  She’s been a discharge planner at Mass General Hospital for so many years. We’ve been friends for 30 years and you know how you have those people who are the wisest person in your life for certain functions. Well, she’s the wisest person in my life about caring for older people and supporting families. Except for you two of course. She said to me you can’t burn yourself as family members by making a promise that you won’t move your parents to a long-term care facility because that’s a false promise.  You don’t know that. A lot of us struggle with “I can’t do it, I can’t do it, I can’t do it, I said I wouldn’t” and hopefully you won’t have to.  But we have to rethink all of our assumptions about what we can and can’t do.

This is not an easy world to be living in right now.  But you know if you’re spending the time to be on this call right now it means you really care. So, let’s just take that in.

Anne: We’ve talked about how important it is to vet an agency. But we haven’t really gotten into vetting an agency as opposed to going through one of the registries, the kind of care.com type thing.  Maybe we can just take two more minutes to share some tips on how to pick a good agency.

Christine: There’s 179 in the San Diego market. There are so many ways to answer this question.  I will say that this is the reason why it’s so important to know who is in your network. Because it’s very much about trust, right?  Maybe there are family members or others in your network that have been through this experience before and can recommend somebody.

If you’re in San Diego and you have 179 agencies to choose from. How do you sort and vet through all of that? It can help to just ask yourself who can refer you. Who do you know who has been through this that can help you narrow this down? Who had a really good experience with an agency?

Anne: Andrea, do you have anything that you want to add to that?

Andrea: I have a couple of basic questions that I tell people to ask. And I’ll tell you what those questions are but when you’re listening to their response listen to how they respond.  Don’t just listen to THE response. Because you’ve got to like the person that you’re dealing with. We do a lot of competitive shopping. We call up our competitors and when we get off the phone, we’re just like wow I would never use that agency because of the way the person answered the phone.

But anyway, some of the things that we ask are how long have you been in business? What’s your response time? If I need someone how fast can you provide someone? Do you do home visits? How do you supervise your workers? Ask any of these questions to just see if they have an answer. It’s almost not the answer as much as it is do they HAVE an answer? Do you accept long-term care insurance? What do your hourly rates cover? How do you charge, how do you bill? Tell us how you vet your workers. What are the things you do for your caregivers to make them feel special? Anything that you’re interested in, and I promise you that the answer will help inform your decision. Do you get a live person at the other end of the phone when you call?  Christine, don’t you think that makes a huge difference? If you get a voicemail people are going to move right onto the next company and you should because you want to be talking to a person, right?

Christine: Right! For example, at our company once someone becomes a client we have a dedicated phone number – a dedicated client line and that phone number is answered 24 hours a day. Exactly! Those are things that you want to address.

A lot of these questions come up in Daughterhood circles. I would suggest going to the Daughterhood website to see if there is a circle near you and if there isn’t one in your area check the Daughterhood Website as many circles are meeting on zoom and always welcome everyone no matter your location. Of course, you’re always welcome at the San Diego circle and we’d be glad to have you.

Some in the chat asked If could we discuss the subject of compensation for a family member providing care. That’s a big one. I don’t know what state you’re in, but for example in the state of California we have in-home supportive services for individuals that are considered low income or on Medi-Cal or that qualify for Medi-Cal. They CAN qualify for in-home supportive services and at least in California in-home supportive services can be paid to a family member. However, that’s not the case for all states.

I would also recommend if any family member is going to be paid you should get some sort of contract in place and you should actually pay the money ahead of time to talk to an attorney. I can recommend some that specialize in that type of thing.  But, regardless there should be a contract in place.

Andrea: I agree yeah. We can also put together the list of the vetting questions and tips for accepting the services. Anything that you can use to basically start the conversation.

The big takeaway from this is that anything that you can do before a crisis occurs is the best. Sometimes however, I have been working with families that are really, really complicated and there’s really nothing that you can do until something happens. Don’t beat yourself up as a family member with I should’ve, I could’ve, I would’ve, I can’t. Just allow yourself to sit in that. You must know that you’re doing everything you can and sometimes you just can’t fix everything. I’m sure you guys talk about that in those Daughterhood circles. I can’t even imagine that it doesn’t come over and over again. I just have so much incredible respect for family members and everything that they do.

Anne: I think that what we’ve always tried to do since Daughterhood was founded. What we want people to understand is that they aren’t failing, there is a systemic failure. As Americans we tend to assume that we have this individual superpower that we should be able to overcome and solve all problems that we’re just like smart enough or skinny enough or rich enough. I don’t know.

But there’s things about the way we’ve organized all these services, in part historically, because we haven’t had people living until they’re 82 or even 95 on average. So, we’re just a little bit behind in catching all that up. That’s why many of you are experiencing so much friction, a lot of suffering and in so much pain because you’re coming up against something that is kind of an immovable object. As Andrea said you’re doing the best you can. And home care is just part of it, just a piece of the puzzle which is why we’re talking about it today. I really really appreciate Andrea and Christine. You guys are amazing. Thank you SO much. There are no words for how helpful this was.

Christine: Thank you. I haven’t met Andrea in person but just from what I’ve gotten from Anne about her and then what I know about her business I’m kind of a super fan. I’m a fan girl now.

Andrea: Aw, just stop it. I just have to say that I feel really lucky to be able to do what we do and be part of this profession.

Anne: Thank you, you guys are superstars. So, thank you so much. And thank you to this incredible audience with all these great and interesting and challenging questions. We’ll be in touch with some follow up and look for the next conversation. And we welcome any and all feedback through the website if you want more information. Thanks everybody. Bye.