Balancing Acts

1. Balancing Acts Elderly Parents and Long Distance Care Giving

2. 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

3. The Late Years Three 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.

4. Twenty Percent

5. Organ Failure

6. The Final Forty

7. 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.

8. 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.

9. 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.

10. 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.

11. Seeking Balance

12. Care Planning Think of it as Due Diligence

13. 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.

14. 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.

15. 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

16. 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

17. 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.

18. Aspects of Daily Living Advanced, Intermediate and Basic

19. 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

20. 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

21. 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

22. Advocates Spouse Children Grandchildren Friends Neighbors Medical Providers

23. 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

24. 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.

25. Essential Legal Matters

26. 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

27. 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.

28. 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.

29. Other Legal Matters The Common Documents

30. 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.

31. Basic Terminology • Wills • Intestate succession • Holographic wills • Probate • Trusts • Revocable • Irrevocable • Avoiding Probate • Estate Planning • Minimizing tax consequences of property transfers.

32. Health RelatedLegal Issues Advance Directives Health Care Proxies Durable Powers of Attorney Living Wills

33. 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.

34. Housing Options Asset Preservation

35. 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

36. Aging in Place • Most preferred by homeowners. • Home represents often the single largest asset owned by the parent. • NORCs • Family Care • Live-In Care

37. 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?

38. “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).

39. 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.

40. 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

41. Paying for care… As assets are depleted.

42. 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.

43. 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

44. 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.

45. 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.

46. 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.

47. 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?

49. 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.

50. The End Contact Pamela Kelley for your copy of the Resource Manual.