Balancing ActsElderly Parents and Long Distance Care Giving

Get Ready

"There are only four kinds of people in the world - those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will

need caregivers."

Rosalynn Carter

The Late YearsThree models: Measuring function across

time. The three most common ways to die

Getting Services Right for those Sick Enough to Die, by Sydney Dy and Joanne Lynn.

British Medical Journal, v. 334, no. 7592, Mar. 10, 2007, p. 511-513.

Twenty Percent

Organ Failure

The Final Forty

Long Distance Miles Away: Findings from a national study by the

National Alliance for Caregiving with Zogby International for the MetLife Mature Market Institute, July 2004.

Key Findings Average distance of 450 miles and 7.23 hours of

travel time one-way for those involved as long-distance caregivers.

Despite distance, LD caregivers report substantial regular personal contact with the person they were helping.

51% reported visiting at least a few times each month.

Caregiving Situation Nearly one-fourth (23%) of the LD caregivers

reported they were the only or primary care provider.

Nearly three-quarters were helping their loved one with instrumental activities like transportation, shopping, managing finances, cooking and were spending 22 hours a month on this help.

Almost half reported managing needed services and spending the equivalent of nearly one full day each week doing so.

Effect on Work More than four in ten had to rearrange their

work schedules in order to take care of their caregiving responsibilities, more than a third (36%) reported missing days of work, and 12% took a leave of absence.

Both men and women were equally likely to have rearranged their work schedules, left early or arrived late to work, taken unpaid leave as a result.

Women were more likely than men to report that they missed days of work and/or moved from full-time to part-time work.

Financial Contribution LD Caregivers spend an average of $392 per

month on travel and total out-of-pocket expenses.

Distance is a factor in total out-of-pocket expenses. Those living 1-3 hours distant spend an average $386 per month, while those who live more than 3 hours away spend an average $674 per month.

For the 10% of respondents who also paid for services the care recipient needed, women spent an average of $751 monthly, compared to men who spent $490 / monthly average.

Seeking Balance

Care PlanningThink of it as Due Diligence

A Chance to Get It Right

Few would deny the importance of planning for death – having a will, an estate plan, a health care proxy, an advance directive… Most of our elders have these.

Fewer still recognize the importance of planning for long-term or debilitating decline, yet most of our elders will experience significant diminishment before death.

Rarely do we plan for this likelihood… but recall those end-of-life graphs.

Timing

The best time to plan is well before there’s a need to have a plan. Plan when the need is

abstract. And remember that it’s not

your plan, it’s their plan. Your role is implementing it.

Where Do Things Stand

Relationships

Legal Issues

Financial Resources

Medical Management

End of Life Issues

Aspects of Daily Living

Housing

Care Network

Meals & Nutrition

Transportation

Stability “Everything’s just fine, dear”

Don’t just let sleeping dogs lie. Learn about aging

Discuss how decisions get made.

Evaluate Denial

Assess health habits with a 72 hr. visit. Admit your own slow slip.

Get to know their community members

Overcome generational isolation

Advance Directives An early discussion of legal and medical

issues.

Living Wills

Durable Powers of Attorney

Discuss how your parents would like to be treated if they lose the capacity to make their own decisions.

Observe decision making styles / behaviors

It can takes weeks or months to get comfortable with this when conditions are stable.

Aspects of Daily LivingAdvanced, Intermediate and Basic

Advanced ADLs These are the kinds of activities a person

needs to be able to do for herself in order to live as an active, participating member of the community. Participating successfully as a member of a

group – e.g., quilting, choir, volunteer projects

Leaving home to meet social needs – e.g., going to church, meetings, visiting friends, attending events.

Using public transportation, driving a car, traveling

Enjoying an out-of-home exercise routine

Assessing and coordinating home or care maintenance

Intermediate ADLs These are necessary for people to live by

themselves while having groceries and services delivered, and being accompanied on outings. Moving around adequately and safely at home

Making the bed, cleaning up, doing light housekeeping.

Simple cooking

Making telephone calls

Keeping track of bills and writing checks

Self-administering medications

Basic ADLs Activities people need to perform for

themselves to live independently in a bedroom/bathroom suite in a house with an attentive family member. Bathing

Dressing

Using the Toilet

Moving from Bed to Chair to Toilet (basic mobility)

Eating without assistance

Advocates

Spouse

Children

Grandchildren

Friends

Neighbors

Medical Providers

The Care Network If you’re at a distance from your family

member needing care, you’ll require others nearby to keep the plan on track.

Brothers, sisters, children, cousins, friends, church members, neighbors. These are in relation to the one who will need

care.

Health care professionals.

Geriatric case managers

From a distance… Re-engage the family

Get acquainted with HIPAA Health Insurance Portability & Accountability

Act.

Discuss with loved ones and medical staff your desire to be a parent’s advocate.

Confidentiality and involvement are not mutually exclusive.

In a litigious society, medical providers want / need release in writing.

Essential Legal Matters

A Care Crisis The triggering event to care giving.

Is your presence a “medical necessity”? Why is this important for the LD caregiver?

Family Medical Leave Act coverage

Absent an approved certification from your parent’s medical provider that your parent’s medical condition requires your assistance, time off from work to care for a parent is not covered by FML.

Approval provided by UAA Human Resources

FML Benefits Job protection for absences covered by FML

Claimant, once approved, is required to take all accumulated leave and remains in full pay/benefits status until leave is exhausted.

FML leave extents for 18 weeks. If paid leave runs out prior, employee must continue funding benefits out-of-pocket to maintain benefits.

Critical to coordinate with HR.

Note:

None of us qualifies for FML simply because our parents

are old and we need to travel to assist them from time to

time.

Medical necessity must be established to qualify for FML

protection.

Other Legal MattersThe Common Documents

Property: A Legacy The treasures accumulated over a lifetime,

whether large or small, are of great interest and concern to many parents who are focused on their legacy.

Wills and trusts are two legal instruments used to allocate property after death. These documents are in some ways the

easiest to discuss.

Recall that most have considered and taken steps to assure that their wishes regarding property are formalized.

Basic Terminology Wills

Intestate succession

Holographic wills

Probate

Trusts Revocable

Irrevocable

Avoiding Probate

Estate Planning Minimizing tax

consequences of property transfers.

Health Related

Legal Issues•Advance Directives

•Health Care Proxies

•Durable Powers of Attorney

•Living Wills

Capacity Presumed

Power of the “next of kin”

Conservatorships

Guardianships

Distinguish between Power of Attorney and Durable Power of Attorney Succession of powers

Governed by each state’s laws, not federal law.

Housing OptionsAsset Preservation

Housing Needs Independent Living

Senior Apartments

Naturally Occurring Retirement Communities

Continuing Senior Care Communities

Assisted Living Facilities

Skilled Nursing Care Facilities

In-home Care

Family Care

Aging in Place Most preferred by homeowners.

Home represents often the single largest asset owned by the parent.

NORCs

Family Care

Live-In Care

Asset Preservation Early discussions are most beneficial.

Scenario: Parent intends to bequeath the home to his children after death. Due to health decline, parent requires skilled nursing care in a facility.

Transfer to children?

Irrevocable trust?

Who gets the house?

“Spending Down Assets”

The idea is that the assets of the elder are legally transferred well in advance of the need for asset proceeds to pay for care.

Ethical issues abound.

Who pays for care associated with housing? Self-funded (“private pay”)

Long-term Care Insurance

Governmental subsidy (Medicaid).

The Five-Year Rule Transfers of property/assets for less than

reasonably equivalent value will result in an imposition of a penalty when one is institutionalized and seeking Medicaid benefits for nursing home expenses.

Note: Medicare does not pay for – in-home care, nursing home care, assisting living and the like.

IRS Implications Too Keep an eye on the tax man.

Gift taxes $13,000 annually gifted to child/spouse

without gift tax liability.

Tax on larger gifts, taxable to recipient.

Lack of gift tax has no bearing on Medicaid transfer liability. Estate planning lawyers vs. Elder care lawyers

Paying for care…As assets are depleted.

Health Care Medicare Part A

Hospitalization

Rehabilitative Care 120 midnights

Lifetime

The “three midnights” rule.

Medicare Part B Out-patient

Fixed reimbursements

MD cannot accept pay differential except through supplemental insurer.

Medicare Part D Prescription Drugs

The Formulary

Annual plan modifications

The Donut Hole

Paying for Rx while paying for coverage.

Closing slowly through 2018.

Pre-Certifications, Coverage Denials & Appeal 72-hr. expedited appeals

7-10 day normal time period

Long Term Care Insurance

Daily benefit amount.

Restrictions on use, especially in older policies.

Promotes live-in assistance and aging in place.

Most can be used to pay geriatric case managers.

Help on the horizon: the CLASS Act Part of PPAC of 2010

Not age or health restricted.

Nursing Homes New federal regulation prohibits skilled

nursing care facilities that accept Medicaid from discriminating among admissions based on entrant’s status as private pay, insurance pay or Medicaid pay.

Remember, Medicare does not pay for long-term skilled nursing care.

Beware of the transfer penalty, the 5-year look-back on any gifts from the individual in need of care.

Transfer Penalty Deficit Reduction Act of 2006 mandates:

A penalty – a set number of months during which an eligible recipient will be denied Medicaid coverage for skilled nursing care – is applied whenever Within 5 years of qualifying events

A transfer for less than reasonably equivalent value is made.

Calculate: Gift value / Ave. monthly cost of nursing home care in the state.

Calculation Total value of transfers (gifts) within 60

months.

Divide by the average monthly cost for nursing home care within the state (published by state HHS).

Quotient is the number of months the penalty applies.

Penalty is no Medicaid funding. Risks eviction

Out of pocket payment from external source.

Family?

Examples For instance, if the nursing home resident

transferred $100,00 in a state where the average monthly cost of care was $5,000, the penalty period would be 20 months ($100,000/$5,000 = 20).

Or, if the nursing home resident transferred $72,000 in Alaska where the average monthly cost of care is $7,000, the penalty period would be months ($72,000/$7,000 = 11 months because under these federal regulations we round up.

The EndContact Pamela Kelley for your copy of the Resource Manual.

Dedicated to Audrey RobertsMy Chance to Get It Right