Transcript Slide 1

BOSTON COLLEGE WORLD-WIDE WEBINARS:
NAVIGATING THE ELDER CARE MAZE
March 5, 2015
Andrea Cohen, Co-Founder & CEO
BCSSW 1984
[email protected]
www.house-works.com
Today’s Topics
• All about family caregivers: Who they are and what they worry
about.
• You are a family caregiver—now what? Getting started.
• Basic choices and costs. At home? In senior housing? What’s
covered and what expenses are out-of-pocket?
• Making the right decisions: Seeking advice, finding resources,
getting buy-in.
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My Perspective
• Almost two decades of experience operating a large private home care
company; currently employs 300+ Associates (home health aides) and serves
close to 250 clients per week.
• First-hand understanding of what customers (the adult child) wants and will
purchase.
• Have seen over and over that adult children want to avoid the challenges
their parents experienced, and will do everything in their power to have
control over how they age.
• Firmly believe that the integration of technology and service is absolutely
necessary to manage the ‘silver tsunami.’ It won’t work if we all create
separate aging-in-place solutions.
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A Typical Caregiver
AGING BOOMER who is:
• Really busy.
• Totally uninformed. Is focused on the big picture, which has no obvious solution.
• Skeptical any company can help them. Feels guilty for not personally providing
the care themselves.
• Used to being in control.
• Anxious about not knowing ‘what’s next’.
• Keenly aware that life is going to change. The ‘unknown’ of what’s next is causing
anxiety.
Completely out of their comfort zones…
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The Caregiving Paradigm
• Good advice just isn’t enough for busy people who work hard to help their
parents lead the best possible life. They want solutions. Most family
caregivers do not seek solutions until there is a crisis.
• Adult children have a hard time navigating the complex long-term care
system and dealing with the emotion of “parenting a parent”. Many run
companies, are leaders in their communities, raise children—but when it
comes to their parents, they just can’t get it done. There is a lot of unknown
and a high degree of unpredictability.
• Caregivers know they are at a crossroads with their parents and they have to
do something—but they don’t know what that “something” is. This
uncertainty creates tremendous anxiety. While at the same time… Siblings
do not agree; parents resist and live far away.
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The Caregiving Paradigm
• For the children, elder care responsibilities trigger anxiety about their
own aging. Most adult children want to:
 Avoid the challenges their parents experienced; have control of how they age by
creating their own solutions and resources for aging in place; be heard and
respected; be in charge and taken care of at the same time. They want
completely reliable care “partners.”
• Children and their parents don’t know how much care is going to cost
and what they can afford.
 Parents do not talk openly with their kids about money. Costs are not
predictable—they vary by setting, level of care required, and amount of family
support available. Payment options are complex and difficult to understand.
Expense is unplanned—kids do not plan to pay for (or manage) their parent’s
care.
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Caregivers’ Reflections
• Our family disagrees on almost every health care decision we have to
make. How are we going to get through this? Worried.
• The stakes are high. We are making uninformed decisions, and always
during a crisis. Scared.
• My parents want to stay at home and they REFUSE to talk to me about
their finances. How long will their money last? Overwhelmed.
• My husband keeps shutting down. He won’t talk and he won’t listen.
Frustrated.
• We can’t find my mother’s health care documents anywhere. Frantic.
• We’re unable to reach doctors to ask questions and can’t get
appointments for second opinions. Stuck.
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• Our family never talks about what’s really happening. Am I the only one
who sees how bad it’s getting? Alone.
How Should I Start?
• Create space to deal with the situation.
o Know that caregiving is the beginning of a journey with no predictable end.
o There will be points in the journey that are harder than others.
• Ask three questions:
1. What must I do now?
2. What can I do later?
3. Who else can do this?
• Make a list.
o Break down the overwhelming jobs into doable tasks.
• Start ‘the conversation’.
o “Mom and Dad, I’m not sure I know what you’d want if it ever got too hard for you
to manage on your own. If I ever had to make decisions for you, I’d really want to
know what you’d have chosen for yourself.”
• Trust your judgment. You know more than you think.
• Build a team
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Your TEAM
Put together a care team (in addition to doctors and specialists) that
may include an elder law attorney, financial planner, geriatric care
manager and service providers. Including a friend with caregiving
experience to advise you also helps.
As much as possible, use your team to be systematic and help you
make informed and thoughtful decisions.
 Avoid crisis planning 
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The COST
Children and their parents often have no idea how much money they
need to save for out-of-pocket long-term care services. Everyone
refuses to talk about it.
The potential expense can be overwhelming.
• Costs are not predictable–they vary by setting, level of care required, and
amount of family support available.
• Payment options are complex and difficult to understand.
• The expense is unplanned–children may not have planned to pay for (or
manage) their parent’s care.
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Who Pays for Long-Term Care?
• Medicare does not.
If you’re not expected to get better but do not qualify for
hospice care, Medicare won’t pay.
• Although some funding is available, individuals with
chronic illness are likely to pay significant out of pocket
expenses.
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Out-of-Pocket Expenses
Assisted Living Facility
Personal care services
Companions
Care management
Escorted transportation
Relocation services
In-home health monitoring
Emergency response
Home modification
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Skilled Nursing Facility
At Home
Medication reminders
The CHOICES and the COST
Depends on the setting.
Basic Choices
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1.
Stay home and bring in services that support
aging in community.
2.
Move to housing with built in support and
services.
3.
A combination of 1 & 2.
4.
Move to a skilled nursing facility.
The CHOICES and the COST
Depends on the level of care required in each setting.
You can’t make assumptions about the relative cost of each
setting without considering the LEVEL OF CARE required.
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The CHOICES and the COST
Home
Intermittent
ALF
SNF
$23K
(16 hours/week)
plus
household expenses
$95K
$155K
Daily
$58K plus
(40 hours/week)
household expenses
$133K
$155K
Continuous
$245K plus
(24 hours x 7days/week)
household expenses
$319K
$155K
• Personal care assistance based on $28/hour
• ALF — $6,200/month; 7 hours of personal care assistance a week included
in cost. Additional services are extra.
• SNF (private room) — $425/day
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*Costs based on prices in Boston Metro area
Getting Advice
Long-term care can be expensive. It’s important to understand and vet
all your options
• Discharge planners
• State agencies (area agencies on aging; councils on aging)
• Senior housing staff
• Geriatric care managers—especially helpful for long-distance caregivers
• Friends with experience
• Financial planners
• Your employer
• The internet
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Getting Buy-In
• Speak openly with your parents about their concerns.
• Directly express your own needs, worries, and concerns. Be clear
(particularly with yourself) about what you can and cannot do.
• Ask someone–who is not you–to speak with your parent (doctor,
minister, rabbi, friend).
• Collect information about resources, show your parents, then drop it.
• Be patient. Remember, this is a process.
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A Note About Long-Distance Caregiving
• If your parent needs care and there are no local family, it is even more
important that you and your parent feel comfortable hiring help.
• If possible, identify a Geriatric Care Manager and home care provider
before a crisis.
• Support the “local” family member by listening, inviting your parent
for an extended visit, providing financial support, handling the
medical bills and claims, and taking on other tasks that can be done
from a distance.
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Words to the Wise
When navigating the maze...
• Never rely on a single source of information.
• Consider implementing an interim solution to give you more time
to consider options.
• Expect at least one false start.
• Always ask, “What’s the alternative?” Keep an open mind.
And don’t travel alone!
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Ideally…
•
Families would be confident that they are making the best possible decisions
about their parents’ healthcare and living arrangements.
•
Families would know that their parents will have the supports they need during
healthcare transitions.
•
Families would be able to afford what their parents want and need.
•
Family caregivers would know and accept their limits before exceeding them.
They’d be kind to themselves.
•
Family caregivers would feel supported in their role by a strong network of
friends and professionals.
•
Family caregivers would be confident that they’ll have better choices than their
parents as they grow older because they’ll start taking charge of their future
now.
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A Parting Vision…
• We will look forward to growing older
rather than fearing it.
• We will have control over where we live,
who we spend time with, what we do with our time.
• We will know that we don’t ever have to move
unless we choose to do so.
• Our children will want to visit us because we live
in places that interest them.
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Resources
National Resources
•
National Association for Areas on Aging www.n4a.org
Enter your city/zip code to find local information and assistance for older adults and caregivers
•
National Association of Professional Geriatric Care Manger www.caremanager.org
Enter your city/zip code to find a local care manager
•
National Association for Home Care and Hospice www.nahc.org
Enter your city/zip code to find a local home care and/or hospice locator
•
Eldercare Locator www.eldercare.gov
Enter your city/zip code or search by eldercare topic
•
Caregiver Action Network: www.caregiveraction.org
Question & Answer
• Please submit any questions to Andrea
through the “question box” feature on your
dashboard.
Contact
Andrea Cohen
CEO & Co-Founder
HouseWorks
[email protected]
617-928-1010
Please write ‘BC Webinar Inquiry’ in the
subject line.