THE FAMILY CONVERSATION #1

Providing good care not only requires advanced planning, but thoughtful, ongoing conversations between adult children and their loved ones.

These are tough conversations.  They cover complex subjects, ranging from financial and health issues to estate planning issues—sensitive topics that loved ones may be reluctant to discuss with other family members.  And they’re emotional issues, often resulting in an uncomfortable reversal of adult-child relationships. We’re forced to acknowledge that while we’d all like to see our family members or friends as robust and independent persons forever, the odds are they will need our care at some point. Even if they don’t want it.

Too often, families and couples avoid such conversations until a crisis arises—a fall, an accident, or a serious health diagnosis.  We allow ourselves to succumb to a condition I call (somewhat tongue-in-cheek) PDD—“Planning Deficit Disorder.”

Making big decisions in the midst of emotionally trying circumstances, however, is never a good strategy.  No matter the challenges or reluctance, it’s better to talk when your loved ones are healthy, sharing information and weighing options and preferences before a crisis happens.

So how do you start?  As I discovered, you start with yourself.

As you read this guide, reflect on your own life’s plans and expectations.  Discuss them with your spouse or significant other.  While reviewing plans for your loved ones, make sure you have your own critical documents, such as a will, health care proxy, and power of attorney.  Take notes about your own needs and fill out the checklists in this guide for yourself, as well as your loved ones, and you will discover the true continuum of caregiving across generations.

All in the Family: The Sibling Syndrome

If you and your siblings are taking care of a parent or another elderly loved one, you’re lucky if you agree on a caregiving plan. But that’s often not the case. When siblings don’t share the same priorities, it can flare up into a war, and in some cases, sadly, they end up never speaking to each other again once your loved ones are gone.

To help families avoid such situations, caregivers and care recipients need to talk openly about family history and dynamics, and how they might affect caregiving plans. Old roles and patterns from childhood may re-surface, creating contentious meetings and awkward choices. You and your siblings are affected by how each of you related as family members growing up, yet those past roles should not continue to define you today—especially in the context of current caregiving needs. To help navigate emotional disagreements, therapists often recommend that siblings try a simple semantic technique: Use “I feel” sentences, speaking from your own experience and perspective, rather than “You” sentences that may make your brothers or sisters defensive or angry.

While a care plan should be a shared responsibility among siblings, realistically, one family member frequently ends up as the primary caregiver. This role should not necessarily default to the person who lives closest but delegated to the one who is most skilled, willing, and emotionally prepared. In some cases, the primary caregiver may end up moving in with an elderly loved one, which could provide additional support and financial savings for both generations. In other instances, the care recipient may move into one of his or her caregivers’ homes. Whatever the plan, the primary caregiver should make a list of tasks that need to be done. Share them with their siblings and talk about where the primary caregiver needs help and what each of them could reasonably do to share the overall burden.  Be specific about how each person can contribute—perhaps with respite care, assistance in navigating entitlement benefits, or managing financial assets and estate planning.

In my family, for example, three of us lived close to Mom, but our fourth brother lived far away, so he could not practically participate in our mother’s daily care. But he was a skilled physician, and we regularly teleconferenced him into family meetings, where his broad medical knowledge was especially valuable in assessing Mom’s changing health conditions.

Good communication is critical. The primary caregiver needs to:

As the U.S. population has gotten older, the field of specialized experts and advisers who serve the needs of older people has also grown.  Before you meet with one of these professionals, do some homework. Find out what kinds of services they provide and be clear about what specific needs and tasks you’re looking to address.

Professionals who are Certified Senior Advisors offer multidisciplinary services to older adults. The CSA credential is given by the Society of Certified Senior Advisors, which requires individuals to pass a comprehensive exam covering areas such as health and mental health, financial literacy, family and social issues, Medicare, Medicaid, and Social Security. CSAs also must pass criminal background checks and agree to uphold the organization’s code of professional responsibility. The CSA website includes a locator to find advisors in your geographical area.
 

Here is a sampling of other types of senior specialists and experts:

Consulting an Elder Law Attorney

Assuring the future care of an aging family member usually involves making important decisions about legal, financial, health care and estate planning options. Not everyone may need an elder care lawyer, but these professionals can help multiple generations of families plan how their health care and financial wishes will be carried out, including the execution of key legal documents such as health care proxies, living wills, and powers of attorney. An attorney also can assist in planning for possible long-term care needs, including Medicaid options, as well as reviewing wills creating trusts, and designing estate plans to preserve assets.

If family caregivers are adult children, they should be aware that when parents hire an elder law attorney, the attorney represents the interests of the parents —not their adult children. The attorney’s goal is to make sure that good care is provided and see that the senior’s assets are preserved as much as possible, and not necessarily for the sake of the children’s inheritance.

So how do you find a local elder law attorney? 

As with the hiring of other professionals, I started with referrals from people I trusted, including some close friends whose situation was similar to mine, as well as business colleagues, my financial advisers, and health care professionals. Then I widened my search by comparing my referrals with listings and information services in local and national legal organizations.

Of course, the internet has become a standard starting point for finding basic information about elder law attorneys and their practices. Many attorneys are offering free webinars and email newsletters covering eldercare issues that have taken on growing currency as many more people are living longer and need an array of services as they age. Topics range from long-term care planning to changes in Medicaid regulations for home care; the creation of advance directives like health care proxies and powers of attorney; trusts and estate planning, and how to conduct difficult family conversations, like funeral arrangements.

Many elder law attorneys also are partnering with financial advisors, social workers, patient advocates, and assisted living communities in presenting joint events. Regularly check the events calendar at your local public library or senior center for these presentations.

Consider elder attorneys who are members of national organizations that specialize in providing legal services to older individuals and their families, such as:

What to Ask When You’re Hiring an Attorney

Then, ask a series of additional questions:

An experienced elder law attorney can be an asset for seniors and their caregivers, helping to explain complex regulations, and identify unforeseen alternatives as well as potential family conflicts—before they become crises.

There are four important legal documents for caregivers and their elderly loved ones: two relating to medical decisions (the health care proxy and living will), known as advance directives, and two relating to financial issues (power of attorney and will).

Your loved ones should have a conversation with their family caregivers about these documents so that it’s clear what their wishes are, who in the family has been designated to assume various roles—and that they’re willing to serve in these capacities.

Make sure you know where these documents are stored and that your loved ones provide copies to their doctor, elder law attorney, and other family members, as needed. Your loved ones also should consider keeping a copy of their health care proxy in their wallet, in case of a medical emergency.

Both family caregivers and their loved ones should review these directives every few years, since changes in state law, as well as changes in personal situations can affect how the provisions of legal documents are carried out.

Health Care Proxy

This document allows your loved ones to appoint an “agent,” typically a trusted family member or close friend, to make important health care decisions for them if they become incapacitated and unable to make such decisions for themselves.  In New York, a health care proxy does not have to be notarized, but the form must be signed in the presence of two adult witnesses, not including the agent.

In fact, everyone over age 18—including young adults who are college students—should appoint an agent who can make health care decisions on their behalf, in case something unexpected happens. A health care agent can be your voice, someone who makes decisions according to your best interests.

In a health care proxy, the agent may be given limited or broad authority, including instructions about the types of medical treatments a person wants to receive if they are either temporarily or permanently unable to make their own health care decisions.  Hospitals, doctors and other health care providers must follow an agent’s decisions as if they were the care recipient’s own.  If someone does not have a health care agent, all appropriate medical treatments will be provided to that person.

You don’t need to hire an attorney to complete a health care proxy. To obtain a sample form go to the New York State Department of Health website (www.health.ny.gov) and search for Health Care Proxy. Or write and enclose a stamped, self-addressed envelope to:
New York State Department of Health—Health Care Proxy, PO Box 2000, Albany, NY  12220.

Living Will

A Living Will is a document that specifies what types of medical treatments your loved ones desire should they become incapable of expressing those desires. It must be signed in the presence of two competent witnesses over the age of 18.

People may wish to receive or refuse specific treatments under certain circumstances, most commonly a progressive or terminal illness or permanent disability.  A living will should be clear and follow verbal instructions that have been given to family and friends.  It can include instructions concerning the termination of life support.

My Mom, for example, openly dictated her end-of-life-care wishes to all four sons.  After observing the fates of many of her older friends and neighbors, she repeatedly asked us to promise that we would never put her in a nursing home—she wanted to die in her own home.

Yet Mom also believed there should be limits to efforts to keep her alive, even at home. She visited a neighbor who lived for more than 10 years with a feeding tube pegged to her stomach.  So, she stipulated that if she lost mental capacity AND she could not be fed or was able to swallow, she did not want any heroic, life-saving measures performed.

If a person does not have a health care agent, a living will is better than having no advance directive at all.  Still, no statute in New York governs living wills. The highest state court has ruled that a living will is valid as long as it constitutes “clear and convincing evidence” of your wishes.

But there is no standard living will form, so even a well-drafted document is ultimately subject to interpretation, and it’s hard to provide specific instructions to cover all possible future events.  It’s especially important, then, for you and your parents to consult with an attorney to make sure that their wishes are stated in the most effective manner possible. And both

A sample living will form is available on the New York State Bar Association website (https://nysba.org/WorkArea/DownloadAsset.aspx?id=21705)

 In addition, if your loved one already has serious health conditions, they should consider completing another critical document, known as a MOLST, which stands for Medical Orders for Life-Sustaining Treatment.  These medical orders, including instructions regarding “Do Not Resuscitate Orders” or “Do Not Intubate Orders,” are intended to document to health care providers a person’s wishes and preferences in providing medical care at the end of life. (See more information in Part V of the Navigator)  The MOLST form (which should be printed out on bright pink heavy stock paper) is available on the New York State Department of Health website (www.health.ny.gov; search for “MOLST”).

FINANCIAL AND ESTATE PLANNING

Powers of Attorney (Modified)

The  Power of Attorney gives an “agent” broad powers to take care of certain business or financial matters on behalf of another person, known as the “principal.” While such documents are often created in case older loved ones are no longer able to make decisions on their own, a principal does not need to become incapacitated for the power of attorney to be triggered. Agents must act according to the instructions of the principals, or where there are no instructions, in their best interest.

In New York State the principal must sign a power of attorney in the presence of a notary and two witnesses (the notary can be one witness); it does not become effective until it is signed by the agent. That authority ceases upon the death of the principal or revocation of the power.

If a POA was completed several years ago it’s especially important that families review changes to POA provisions that went into effect in 2021. Under the new POA law, a separate document known as the  “Statutory Gift Rider” (SGR), has been eliminated. Previously, if a principal wished to authorize their agent to make gifts of the principal’s money or any other property, they were required to separately execute an SGR. Under the new law, principals may now modify a standard POA to authorize themselves to make gifts up to $5,000 (increased from the previous limit of $500) in any one year, or to make other changes to interests in their property without the need for an SGR. Plus, any gift in excess of the $5,000 limit can be made by stipulating that authority in an optional modifications section in the POA form itself.

The new statute also greatly expands an agent’s permissible authority over the principal’s health care matters, although that authority extends only to financial issues. It does not permit the agent to make health care decisions for the principal; such decisions still require a health care proxy.

There are four basic types of powers of attorney:

A general power of attorney enables an agent to perform almost any act as the principal, such as opening financial accounts and managing personal finances. A general power of attorney arrangement is terminated when the principal becomes incapacitated, revokes the power of attorney, or dies.

A durable power of attorney may be used immediately and remains in effect until the principal revokes it or dies.  It includes a durable clause that maintains the power of attorney after the principal becomes incapacitated–mentally incompetent or physically unable to make decisions.

A nondurable or limited power of attorney takes effect immediately and remains in effect until the principal revokes it, becomes mentally incompetent, or dies.  It is often used for a specific business transaction, such as the sale of a property, or the handling of financial affairs while the principal is traveling and unavailable to take care of them.

A springing power of attorney becomes effective at some future time and remains in effect until the principal’s death, or until it is revoked by a court.  This POA is often triggered by a specific event identified by the principal, such as an illness or incapacity, and initiated when the principal’s physician declares the principal not competent to manage their own affairs.

Many online resources like the New York Bar Association offer to consider when drafting a power of attorney (https://www.nyc.gov/assets/hra/downloads/pdf/services/homelessness-prevention/poa.pdf).  But a POA should be executed with the guidance of an elder law attorney to ensure that areas of authority are clearly defined and understood by both loved ones and their family members.

Last Will & Testament

A last will and testament is a legal document that helps individuals ensure that their assets and estate will be distributed according to their wishes when they die. In New York, a will must be signed in the presence of two competent witnesses over age 18. This document enables someone to choose an executor to manage and distribute their property. Without a valid will, a person’s property will pass to those relatives specified by law through the court system.

While not related to the immediate financial aspects of caregiving, serving as the executor of a parent’s will is often an important part of a family caregiver’s long-range responsibilities.

In addition to making sure that your loved ones have their key legal documents in place, families need to assemble key information relating to various aspects of their personal lives. It can be a big job, so try breaking this process into manageable steps:

1. Identify where your loved ones keep their important papers. Make sure they’re in a safe place, whether at home, in a fireproof file cabinet or safe, in a safety deposit box, or with their attorney—or all those places. It doesn’t do any good to have your parents’ records in order if no one knows where to find them, or they’re in a safety deposit box where no one else in the family has the keys.

2. Sit down as a family to review all relevant documents and accounts. Identify missing links—information gaps you need to fill in to help your loved ones plan for retirement, as well as data or contacts you might need in a medical emergency.  Make sure designees and beneficiaries are up to date for all policies and accounts.

3. Come up with a checklist of all the documents. Note which ones you need to keep together in a safe place, such as a secure file cabinet, so you can locate them quickly when needed. Keep original documents, such as passports and birth certificates, in a fireproof safe.

4.  Make sure you know who is authorized to speak to company or government agency representatives if your loved ones can’t speak for themselves. Make copies of key documents for the person(s) designated as Power of Attorney and Health Care Proxy.

 5. Consider electronically scanning files onto a memory stick that can be stored at another location.  Remind your parents to update their documents every three years, or whenever there is a major life change.

6. Don’t forget to keep a record of your parents’ “virtual estate.”

These records may include digital photos, social media, online records, financial and other accounts, including user names and passwords. (More than a few years after my Mom died, we still have not digitized many photos from family albums. But we did convert dozens of 8 mm films several years ago, and that gave us many hours of joyful reminiscing with her.)

7. Make a “contacts” file with the names of all key people in your parents’ lives. Make it easy for your family members to locate these important people—close relatives and friends, primary physician, minister/priest/rabbi, attorney, accountant, tax preparer and banker. And in case of an emergency, identify who needs to know about your loved ones, and what they need to know.

The primary aim of estate planning is to protect your loved ones’ financial resources, minimizing inheritance taxes while enabling them to control how their estate will pass to heirs or charitable causes.

Estate planning also is an important way to avoid the additional stress of a court proceeding known as probate, which is required when a person passes away with assets solely owned by them. Probate proceedings often result in significant delays in settling an estate, court costs, legal fees, and public exposure of a loved one’s estate. At a time of growing identity theft and fraud, especially among seniors, it’s advisable to maintain the privacy of your family members and the assets being inherited.

There are three basic ways to avoid probate. First, if a loved one’s assets are owned jointly with another person, they will automatically pass to that person upon the death of the first owner. Second, if assets are placed in accounts such as IRAs, annuities, or life insurance policies that have beneficiaries, the assets will transfer directly to those beneficiaries, once a claim form is completed. Third, if a person’s assets are placed in a revocable or irrevocable trust, probate can be avoided for the assets held within those trusts.

In addition, asset protection through a trust may become a key component for caregiving purposes, providing legal structures for long-term care when your parents need assistance beyond family caregivers.

Unless your family has sufficient private income to pay the cost of your parents’ care when they need substantial daily assistance, you may eventually have to consider a Medicaid program to assist with or cover the cost of long-term care. While getting Medicaid coverage can result in huge financial savings, the rules to qualify for such benefits are complex, and elder law attorneys can be instrumental in helping families implement legal tools to plan for long-term care, such as irrevocable trusts or pooled income trusts. 

As was the case in my family, the adult children often end up being the trustees or legal representatives appointed to oversee these trusts. (See more information in the “Long-Term Care Planning” section)

Older couples usually have some kind of financial plan for their later years, whether or not they decide to “retire.” Too often, however, it’s not in writing, or limited to a monthly budget of expenses and retirement income and other assets. The bigger issue—the one that keeps many seniors up at night—is what financial experts call the “longevity risk.” That is, as advances in health and medicine enable us to lead longer and healthier lives, the risk that we may end up outliving our retirement savings.

It’s important that you are informed about your loved ones’ financial resources,  because eventually, you may end up being in charge of their money as part of your overall caregiving responsibilities. That’s what happened to me—with no preparation. Our father died unexpectedly of a heart attack and had not shared much information about the family’s assets with Mom, who was a shrewd manager of their monthly budget but not privy to most of Dad’s financial dealings. At the time, Dad was not actively working with a financial adviser or attorney. So, Mom asked me, along with my brothers, to ferret out the insurance, annuities, three stock portfolios and various other assets. It took almost two years to assemble all the records and resources, create a financial/legal team and set a new course for Mom.

Older couples usually have some kind of financial plan for their later years, whether or not they decide to “retire.” Too often, however, it’s not in writing, or limited to a monthly budget of expenses and retirement income and other assets. The bigger issue—the one that keeps many seniors up at night—is what financial experts call the “longevity risk.” That is, as advances in health and medicine enable us to lead longer and healthier lives, the risk that we may end up outliving our retirement savings.

It’s important that you are informed about your loved ones’ financial resources,  because eventually, you may end up being in charge of their money as part of your overall caregiving responsibilities. That’s what happened to me—with no preparation. Our father died unexpectedly of a heart attack and had not shared much information about the family’s assets with Mom, who was a shrewd manager of their monthly budget but not privy to most of Dad’s financial dealings. At the time, Dad was not actively working with a financial adviser or attorney. So, Mom asked me, along with my brothers, to ferret out the insurance, annuities, three stock portfolios and various other assets. It took almost two years to assemble all the records and resources, create a financial/legal team and set a new course for Mom.

If your loved one is a veteran or veteran’s spouse, they may be entitled to a wide range of basic benefits through the U.S. Department of Veterans Affairs, provided they received an honorable discharge from the military.

Your parent may already be receiving some benefits, but if not, start by locating their discharge papers (DD Form 214). If you can’t find their copy of DD214, this website can help: https://themilitarywallet.com/dd-form-214-verification-of-military-service. Benefits cover a range of services and programs, including medical care, pensions, disability compensation, community-based residential care, treatment programs, burial benefits, and other services to eligible vets and qualifying family members.

While approval time can be lengthy for some benefits, the process to enroll for healthcare benefits can be quick if you have a copy of the DD214 and submit VA form 1010-EZ through the VA’s local medical center Patient Enrollment office. (See Resources below.)  It usually takes only a few days to process, and Patient Enrollment will assign a Veteran a Primary Care Physician (PCP). The PCP or PCP’s social worker is effectively the gateway to healthcare services and home healthcare services.

The VA Standard Benefits Package includes long-term care home and community-based services for older veterans, provided that the vet has a clinical need for it and the service is available in their area. For more information, log on to www.va.gov/geriatrics. 

The VA also has Caregiver Support Program that offers educational resources, multiple tools and services designed to help family caregivers:

Parts A and B are called Original Medicare, also known as fee-for-service or traditional Medicare. As an alternative to Parts A and B, Medicare beneficiaries can choose a Medicare Advantage or Part C Plan. Medicare Advantage Plans are offered by a list of Medicare-approved private companies that must follow rules set by Medicare. Most Medicare Advantage Plans include drug coverage (Part D). Some people get additional health insurance coverage, like Medicare Supplement Insurance (Medigap), to help pay for items not covered by traditional Medicare.

Part A helps pay for:

Medicare DOES NOT pay for long-term care in nursing homes, or for long-term or custodial care or companion care services in the home. (See “Long-Term Care Planning”.)

 It DOES pay, however, for short-term care in a skilled nursing facility or at home following a care recipient’s discharge from a hospital.

Most people pay no monthly premiums for Medicare Part A if they are entitled to Social Security or Railroad Retirement benefits. There are, however, deductibles and copays, and coinsurance payments for certain services or Medicare-approved medical equipment. (See https://www.medicare.gov/basics/costs/medicare-costs.)

Recipients must meet certain conditions to qualify for coverage, including a doctor’s certification or prescription. Usually, a certified home health care agency coordinates any short-term home care services ordered by a patient’s doctor. Patients and caregivers should consult with their doctor to make sure Medicare covers a prescribed service or supply. In addition, they can log onto https://www.medicare.gov/what-medicare-covers.

Part B also covers a roster of preventive and screening services, including tests for serious illnesses and chronic conditions such as diabetes, heart disease, and cancer. It also covers two types of routine preventive doctor visits: one when you’re new to Medicare and one each year after that. (Visit https://www.medicare.gov/coverage/preventive-screening-services)

Medicare Part B recipients pay an annual premium each month, which is deducted from their Social Security check. Most people will pay the standard premium amount, although higher-income individuals may pay more.

Part B covers only 80 percent of the Medicare-approved cost of medically necessary doctor's visits. There is also a Part B yearly deductible before Medicare picks up its share. (See https://www.medicare.gov/basics/costs/medicare-costs.)

Certain telehealth services are now covered under Part B. These services include office visits, psychotherapy, consultations, and certain other medical or health services that are provided by an eligible provider using an interactive 2-way telecommunications system, like real-time audio and video. For most telehealth services, you'll pay the same amount that you would if you got the services in person. (See https://www.medicare.gov/coverage/telehealth.)

Many doctors accept Medicare patients, but some don’t, so be aware that if a physician has opted out of Medicare, the patient is responsible for the bill. Ask ahead of time. Also, it’s important to find out whether a doctor accepts Medicare “assignment”—that is, that they have agreed to the Medicare-approved amount as payment in full—or whether the doctor can charge the patient up to 15 percent above this amount.

Medigap plans are offered by private insurance companies to help supplement deductibles and co-payments for services provided by traditional Medicare, which does not cover 100% of the cost of services. They do not pay for services unless these services are partially covered under Medicare Part A or B.

Federal and state regulations have established minimum national standards for companies offering Medigap policies, identified in most states by letters A through D; F through G; and K through N. You pay the private insurance company a monthly premium for your Medigap policy, in addition to the monthly Medicare Part B premium.

It’s important to compare Medigap policies since the costs can vary between plans offered by different companies for exactly the same coverage. You can buy a Medigap policy from any insurance company that's licensed in your state to sell one. If you and your spouse both want Medigap coverage, you'll have to buy separate policies. And if you move from one state to another, your plan may remain the same, but you should check to make sure. Some states provide “guaranteed issue”—the same policy with no health questions asked. But in other states you could be rated by age and health status. 

To find companies that offer Medigap policies on Long Island and compare plans, click here, then enter your zip code and click the Start button.

You can also download the booklet, Choosing a Medigap Policy: A Guide to Health Insurance for People with Medicare.

Most older people say they want to live independently for as long as possible.

My Mom did, too. She made it clear to her sons that she wanted to stay in her home— her “terrestrial paradise” that she and Dad built in the early 1950s—until the end.

It’s emotionally difficult for many parents or couples, as well as their adult children, to acknowledge that we all should plan for long-term care in our elder years. Eventually, about two-thirds of those aged 65 and older can expect to need some form of long-term care, through either family or outside services, or both, according to health care experts. So as Mom got older and frailer, my brothers and I knew that we needed to do some long-term care planning, starting with our elder care attorney.

Generally, long-term care covers custodial, rather than medical care—that is, assistance with basic tasks of everyday life, referred to as the six Activities of Daily Living, or ADLs: eating, bathing, dressing, transferring (getting in and out of a bed or chair), toileting, and continence.  Other common long-term care services aid with everyday tasks known as Instrumental Activities of Daily Living, or IADLs, including managing personal finances; taking care of household tasks; shopping for groceries; using the telephone or other communication devices; and caring for pets.

Your initial family conversations about long-term care probably won’t go into detail about specific options for long-term care, such as home care, assisted living, adult day services, or a skilled nursing facility. It may be too early for these discussions. At the same time, your family should be aware that long-term care services can be dauntingly high. According to the Genworth Cost of Care Survey, the median cost of a home health aide nationwide is $61,776 a year, assuming 44 hours of care per week, while the median yearly cost for an assisted living community is $54,000 a year, and the median annual cost for a nursing home private room is about $108,445. The Cost of Care Survey also breaks down these figures into hourly, daily, and monthly costs, as well as by region.

Costs on Long Island, however, are generally much higher than the median figure listed in the survey, according to most local long-term care experts.

Medicare will not pay most long-term care costs. Medicare does help pay for part-time, intermittent home health care aides and support services to those who need intermediate and skilled medical care, often after a hospital or short-term rehab stay. Medicare also will help pay for a short stay in a skilled nursing facility. But it will not pay for most companion or custodial care inside the home or in an outside facility. In addition, private health insurance plans typically do not pay for ongoing long-term care either, although some may provide temporary nursing home coverage.

While your ultimate goal is to provide the best possible care for your loved ones, cost inevitably becomes a critical factor—and without adequate planning, your family could deplete its entire retirement savings within a couple of years. Some options, such as long-term care coverage through Medicaid, have complicated application procedures that require substantial planning to avoid penalties. Other options, like long-term care insurance,  get more expensive and often more difficult to qualify for as you age.

PRIVATE PAY

LONG-TERM CARE INSURANCE

Long-term care (LTC) insurance is private insurance designed to pay for services not covered by Medicare, Medicaid or other health insurance. It’s an important option for many families for several reasons.

“Long-term care is the largest unfunded health risk as people get older,” says Rona Loshak, co-founding partner of Karp Loshak LTC Insurance Solutions, an independent broker specializing in long-term care insurance.

While some families may prefer to fund their long-term care needs through retirement savings, such care often lasts longer and is more expensive than most people realize. Even if you saved money for over 20 years, it probably would not be enough to cover long-term care needs, which will cost an estimated $1.2 million per person 30 years from now, adds Natalie Karp, also a co-founding partner of Karp Loshak LTC Insurance Solutions. The goal of LTC insurance, she says, is to shift the risk, repositioning your savings into a tax-free source of money for likely care in the future.

Long-term care insurance also has become an important option for a growing number of seniors who are aging alone and facing potential government cutbacks in Medicaid services and qualifications. And many older couples may not be physically able to take care of their spouse, so having long-term care insurance can relieve adult children from the burden of making decisions about their parent’s care, providing greater independence for both generations.

Long-term care insurance is designed to help policyholders cover out-of-pocket expenses for care in a variety of settings, typically home care, assisted living, adult day services, nursing homes and hospice care. Offered by several companies in New York State, coverage also may include care needed for individuals with cognitive impairment, such as Alzheimer’s Disease. LTC insurance policies also can provide flexible plans, including shared care for couples, and they are portable across states. LTC insurance policies include cost-of-living adjustments to protect against inflation and New York State offers a 20 percent tax credit for premiums, up to $1,500 for those with $250,000, and if you itemize deductions or own a business, there’s also an available federal tax deduction, which adjusts at different ages.

Nevertheless, LTC insurance policies can be costly, and premiums vary widely. There are a host of terms and conditions to consider in each plan, such as health qualifications, age, type of care covered, length of the benefit period, daily benefits, and “elimination period”—the length of time a person must wait before it pays the cost of care. Before purchasing a policy, it’s a good idea to consult with independent LTC experts to understand the nuances of various plans and determine which is best suited to your needs and most affordable. You can find local LTC insurance brokers and agents in your area who are members of the American Association for Long-Term Care Insurance on the association’s website (www.aaltci.org). Check their credentials, verify that they have complied with your state’s licensing and continuing education requirements, and ask for referrals.

You can purchase LTC insurance in New York up until age 79, but premiums are higher as you get older, and more important, your health may make you uninsurable. You should consider signing up for a policy “sooner, rather than later,” says Rona, especially if you have a family history of health issues. When you apply earlier, you pay less, both annually and cumulatively. (Adult children who are caregivers also should be thinking about LTC coverage, because they, too, will probably need such care as they age.)

In addition to stand-alone LTC insurance policies, there are several alternative options, designed to help overcome some consumers’ “use it or lose it” objection to traditional long-term care insurance.  There are two kinds of policies structured around a life insurance model:

There are two main categories of riders, known as 7702B long-term care riders, and 101(g) chronic illness riders. Policies with 7702 riders, as well as hybrid policies, are essentially guaranteed and tax-qualified long-term care insurance plans. Similarly, policies with 101(g) riders enable policyholders to receive accelerated death benefits tax-free for long-term care needs, but they are not qualified long-term care contracts, so guaranteed coverage and benefits may vary widely.

Benefits are paid when the insured is chronically ill, unable to perform two out of six “activities of daily living” (ADLs), or needs supervision due to cognitive impairment. ADLS include tasks such as bathing, caring for incontinence, dressing, eating, toileting or transferring—getting in or out of a bed or chair, for example. When these tasks become an issue, a medical review and an approved “plan of care” will begin the claim process. Once approved, the insured will likely have to pay out of pocket for long-term care services during the elimination period, although Medicare usually pays for up to 90 days.

Th of Partnership-qualified products in New York State. While there are no new Partnership policies available for purchase at this time, this does not affect people who are currently insured with Partnership-qualified policies.

Since many consumers do not actually use their long-term care policies for decades, experts often recommend checking the financial stability of potential insurers. Here are some firms that rate the dozen or so major insurers: A.M. Best Insurance Review (www.ambest.com); Fitch Ratings (www.fitchratings.com); Moody’s Investor’s Service (www.moodys.com); and Standard & Poor’s (www.standardandpoors.com).

One final note: Family members should make sure that their loved one’s LTC policy specifies who is authorized to speak to company representatives, should the policyholders become incapacitated and unable to speak for themselves. Most companies have personalized care coordination to help loved ones manage the process.

MEDICAID LONG-TERM CARE OPTIONS

Even though Medicaid, a federal health program administered by the states, is intended for low-income individuals, it is increasingly becoming a viable course for many middle-income seniors, as long as they meet a set of stringent asset and income limits. To fulfill Medicaid requirements, seniors often employ estate planning strategies to reduce their assets by making gifts to other family members or placing their financial resources into vehicles like “asset protection trusts.” Such strategies may enable families to qualify for Medicaid coverage for nursing homes, some assisted living communities designated as ALPs, or in-home care, known as Community Medicaid.

But these asset transference strategies are also subject to a Medicaid rule known as a “look-back period.”  That is, when a senior applies for long-term care Medicaid, their application will be reviewed to determine whether they have transferred or given away any assets for less than the fair market value during a certain time prior to the application—the “look-back” period. If Medicaid determines assets have indeed been gifted during the look-back period, it will impose a “penalty period,” based on the amount of the gift, during which the applicant will be ineligible for Medicaid services and will be required to pay privately for long-term care.

Currently, the look-back period is five years for applicants seeking institutional long-term care. Community Medicaid previously had no look-back period, but recently that changed. The Medicaid Home Care program in New York now has a 30-month look-back period, which was originally scheduled to take effect in 2020, but the implementation date has been pushed back several times due to the Federal Public Health Emergency issued during the pandemic.

LONG-TERM CARE SUPPORT FOR VETERANS

The VA’s various services can help pay the costs of in-home care, adult day services, assisted living, or skilled nursing facilities for eligible Vets. Geriatric evaluations are conducted to assess a person’s needs and create a care plan. The VA does not pay for room and board in residential settings such as assisted living or adult family homes, but individuals can receive some services while living in a residential setting. The VA provides nursing home care if Vets meet certain eligibility requirements, such as level of disability and income. For much more information about long-term care topics, see the VA website’s Geriatrics and Extended Care page, www.va.gov/geriatrics.

Choose a Main Caregiver

Figure out who will take the lead caregiving role among the family’s adult children. A sibling who lives closest to an aging parent often becomes the primary caregiver, but they should discuss with other siblings how each family member can contribute or help out; an open dialogue is essential, as difficult as that can sometimes be. Long-distance caregivers can provide emotional support and occasional respite to the primary caregiver, as well as play a part in arranging for professional caregivers, hiring home health and nursing aides, or locating an adult care living facility.

Collect Critical Information

Learn as much as you can about your loved ones’ health and financial situations. To the extent possible, put all vital information in one place—a notebook, perhaps, in addition to a secure online document. This information should be organized and easy to reach in the event of a crisis. Include medical records, health insurance, financial and legal information, company names and phone numbers for utilities and other monthly service providers. Make hard copies and digital documents for various family members.

Secure Online Financial and Other Help

Caregivers also may find they can help manage their loved ones’ finances online—for example, paying monthly bills; purchasing and/or researching health problems and medicines; paying bills; or keeping family and friends updated. Some long-distance caregivers help a parent pay for care, while others step in to manage finances.

Create a ‘Circle of Care’ Contact List

Assemble addresses, emails and phone numbers of friends, neighbors, doctors, faith leaders and others—a “circle of care” around your parents who can be reached in the event of an emergency. These people also may be able to help out with shopping, transportation or visits. Consider including at least one person close by who can easily check in on your loved ones and give this person a key to the home if your loved ones approve. In some communities, mail carriers or utility workers are trained to spot signs of trouble through the Carrier Alert Program of the U.S. Postal Service. They report concerns, such as accumulated mail or trash, to an agency that will check on older adults. To find out if there’s a program in your loved ones’ area, contact the local post office.

Stay in Touch

Some long-distance caregivers might think the situation would be easier to manage if their loved ones lived closer. But many older people don’t want to move at all, facing the loss of old friends and familiar communities. Staying in contact with your parents by phone, FaceTime or email might not sound like much help, but often it is. If your loved ones are already living in a residential care community, several family members can participate in one phone call with them. Families also can schedule conference calls with doctors and facility staff to get up-to-date information about a relative’s health and status.

Identify Community Resources

long-distance caregivers often have trouble finding local resources and services for their parents. Knowing where to ask can make a huge difference. Searching online is often a good way to start, exploring websites such as the federal government’s Eldercare Locator (www.eldercare.acl.gov) which helps identify resources by topic, city or ZIP code. This service also offers information specialists who can help (1-800-677-1116) between 9 a.m. and 11 p.m. Caregivers can get help locating resources through the “area agency on aging” in their loved ones’ community. These agencies (on Long Island, they’re the Nassau County and Suffolk County Offices for the Aging) can be found on the Eldercare Locator site; just go to Find Help in your Community and type in your loved ones’ city or ZIP code.

And you might want to explore senior clubs and senior centers in their area—even if your loved one doesn’t want to join a center, these places can be a valuable provider of resources.

To learn about public assistance programs where your loved ones live, check out the National Council on Aging’s  www.benefitscheckup.org,  a free online service designed to help people over 55 search through more than 2,000 federal, state and private benefits programs to help pay for prescription drugs, health care, food and other basic needs.

Another option is to hire a private geriatric care manager. For a list of licensed professionals, searchable by ZIP code or city Aging Life Care Association website (www.caremanager.org). Even if you believe your parent or loved one needs some in-home care, be sensitive and respectful of their view of the situation. They may be reluctant to allow strangers in their home or they may have trouble facing such changes. Explain how various services work and that they are designed to help your parents remain independent.

Plan Your Visits

When visiting your loved ones, make use of the occasion to assess their current and future needs. Before the visit, decide what needs to be taken care of while you’re there, including purchasing household items, scheduling necessary appointments, going through financial and legal documents, and reviewing the home for comfort and potential safety hazards.

During the visit, think about your parents’ daily needs and whether they need more help on a regular basis. Take note of anything out of the ordinary. Are they eating well? Socializing with friends and getting out? Keeping up with chores or housekeeping? Maintaining their personal appearance and hygiene? Paying bills and responding to correspondence? If not, consider additional resources.

At the same time, make sure your visit is an enjoyable event. Set clear-cut, realistic goals. Remember, a visit that’s too much business or too strenuous won't be good for anyone.

Don’t Forget Your Own Needs

Recognize the stress that caregiving—whether local or long-distance—imposes on caregivers. Accept that may be impossible for you to provide all the help your loved ones may need. Give yourself credit for whatever efforts you and other family members can provide.  Ask for help when you need it. For more tips and resources to manage the stress of caregiving, see Part V of this resource guide (Caring for Yourself, the Caregiver).