Let’s talk about the challenges families face when managing the care of a disabled loved one. Caregivers will need to manage transitions between treatment settings and the sources of payment for the care that is needed.
Adult Child Caregiver and the Winds of Change
This is the first segment of our caregiver series. A person usually becomes a caregiver over time. It often starts subtly; mom seems to be slowing down. She isn’t covering all her bases all the time. You begin making time to take her to the doctor; to the store; pick up her prescriptions; and you stop by often to check on her. You want to be there for your mom; you’re happy to do it.
The one thing a caregiver can count on is that things will change. As they do, the effect on the caregiver’s life begins to take shape. Healthcare emergencies can result in a parent’s loss of independence with activities of daily living. Suddenly, the child caregiver realizes that they need to put their life on hold to provide the support their parent needs.
Sometimes different events take place involving a parent that seem isolated and temporary at the time. However, take note! The following events herald a significant change in the parent’s needs and in the caregiver’s scope of work – sooner rather than later.
- A pattern of falling begins.
- A decline in physical condition leads to the use of a cane, walker, or wheelchair.
- They experience a failure to thrive over time – perhaps a loss of interest, withdrawal from others, and mood swings.
- The revolving door pattern begins, with trips to the ER, hospitalization, skilled rehab, then back home. Then there is a next time, and another one, and another…
- Memory loss – the familiar becomes unfamiliar.
- An inability to manage self, finances, or the home.
- A sudden personality change – the sweet person you have known all your life has become mean and perhaps acts out aggressively.
- Driving issues, such as accidents, tickets, getting lost, or losing track of the parked car.
- Incontinence.
The rest of this series will discuss the legal and practical issues raised by these events and circumstances, and we will provide options for dealing with them.
The Revolving Door: Admitted for Treatment or Observation
This is the second segment of our caregiver series. For caregivers, the sudden appearance of the “revolving door” pattern heralds that significant change is on the way. Our clients often suffer a medical crisis, so they go to the ER, are admitted for a few days until they’re stabilized, and then are discharged to inpatient rehab in a nursing home, before finally returning home. Then the cycle continues to repeat itself with each medical crisis.
The revolving door pattern is a big deal. It is a sign that what was once a “care watch” situation is now a “care warning” situation. The storm is beginning to make landfall.
A serious Medicare coverage issue arises if the patient is held over for one or more days in the hospital. Here are the basics for traditional Medicare coverage:
Medicare A pays for care in the hospital. Medicare B pays for outpatient services. Upon arrival at the ER, the patient is classified as “receiving outpatient services” and Medicare B provides the coverage.
If the patient is held over one or more nights without a formal medical order for skilled treatment, Medicare will classify this as “Admitted for Observation.” Medicare B will continue to apply with its attendant deductibles and copay requirements. Coverage for some services may be denied altogether. This can become expensive.
For Medicare A to cover the charges for staying in the hospital, the patient must be admitted based on a physician’s order for skilled care. Medicare classifies this as “Admitted for Treatment.” In this case, Medicare A will cover all the charges from arrival in the ER through discharge. Just because the patient was sent to a floor from the ER does not mean they were Admitted for Treatment.
A caregiver must understand the Medicare classification of the patient as early as possible. Begin asking about the classification as soon as it appears the patient is not going home within 24 hours of arrival at the ER. Stick with it until the medical or administrative staff clarifies whether the admission is for “Observation” or “Treatment.” Do not assume anything.
The Revolving Door: Who Pays for Inpatient Rehabilitative Services?
This is the third segment of our Caregiver series. So, your mom is working her way through the stages of the “revolving door” pattern. Now it’s time for discharge from the hospital. When a patient needs inpatient rehabilitative services before going home, the question becomes whether the cost is out-of-pocket or covered by Medicaid A.
The criteria for Medicaid A coverage is (1) the patient was admitted to the hospital for skilled treatment for at least three consecutive days, (2) the doctor writes an order for inpatient skilled rehab services, and (3) the condition requiring rehab is the same one initially treated in the hospital. If one of these elements is missing, the cost of rehab services becomes the patient’s responsibility.
The key to Medicaid A coverage is that the patient requires treatment from licensed professionals, such as physical and occupational therapists, to maintain, improve, or slow the decline of the patient’s condition. The duration of coverage is up to 100 days: days 1-20 are covered 100%, then the patient shares the cost of treatment with Medicare on a per diem basis (around $204/day).
The adult child caregiver should expect the medical staff to start the discharge process by the 20th day of treatment. The typical reason given is that Medicaid A coverage will terminate because the patient is “no longer making progress, or their recovery has plateaued.” This is not the legal standard for termination of coverage. Medicaid A coverage is to continue for up to 100 days, as long as the patient requires skilled care to maintain, improve, or slow the decline of their condition. Please note that if the patient does not try or fails to cooperate with skilled treatment, then coverage will almost certainly terminate by day 20.
As soon as practical, the patient’s advocate should confirm with the medical staff that the patient will continue to require skilled care beyond the 20th day. The facility must give written notice that Medicare coverage is stopping and advise the patient of the right to appeal the decision. The problem is that such notice is often sudden and can feel like it came out of nowhere to the unknowing caregiver. Appeal the decision to terminate coverage to gain a little more time. Once the appeal is denied, the patient will become responsible for the bill going forward. If the patient is unable to pay the per diem rate for days 21-100, then the facility will seek to discharge the patient. Please note that after day 100, the patient is responsible for the full daily rate.
The Surprise Discharge from the Hospital or Inpatient Rehab: What Now?
At some point, a patient is discharged from the inpatient rehab facility because skilled care is no longer medically necessary. This means that Medicare coverage for treatment will end.. If the patient still needs nonskilled care for activities of daily living, the patient will have to pay the full per diem rate. Typically, the patient cannot afford to do so on a sustained basis. Thus, the facility will issue a Notice of Discharge.
The Notice of Discharge has to be in writing and issued, ideally, at least a day or two in advance. The patient has to sign the notice for it to become effective. Thereafter, the discharge will typically take place within the next four hours.
Families are caught off guard by this and quickly become overwhelmed. The issue is: discharged to where? Is it a safe place for the patient under the circumstances? If not, the facility and the family must work together to overcome this challenge.
The family should appeal the notice for an expedited review by the local Quality Improvement Organization (QIC). The necessary information has to be included in the notice. The applicable statute is 24 CFR §§ 412.42 – 48. The facility will exert pressure on the family to somehow take the patient home. The caregiver must insist that the discharge only take place when there is somewhere safe to go. These can be tough conversations; stick to your guns. A facility cannot just dump the patient onto the street, so-to-speak.
The “Tough Old Bird” Caregiver Needs Help
At some point, every caregiver will tell their family that they are “all right” and “everything is okay.” Outwardly, they may even look like they are “holding up just fine.” The passage of time, however, tells a different story.
A particularly brutal situation occurs when an elderly person is the main caregiver for their elderly spouse who has dementia. The demands and needs of the patient increase over time and are unrelenting. The caregiving spouse will reach their physical and emotional limits. Then, their own health declines as they just soldier on, year after year. “I’m fine!” insists the wife. Her children note that she’s a “tough old bird.” Then, everyone is surprised when mom suddenly gets sick or even dies.
No matter what, a caregiver in this situation is not all right. They need help and support to establish a consistent routine where they get rest and individual time. Adult children need to become involved. Early on, the couple should begin to explore hiring a home health aide to support them. Yes, it is expensive. For many families, the cost of home care on a sustained basis will exhaust their savings.
Luckily, we are very fortunate to live in Delaware. Delaware Long Term Care Medicaid will pay for up to 80 hours per week for in-home care. The financial qualification rules allow the applicant to protect assets. Please check out the most recent series we posted for more in-depth information on Married Couples’ Medicaid. Involving an aide early, as part of the care management plan, protects not only the health of the patient, but also the caregiver’s quality of life.
Care Management of Parents from Afar
Delaware has the fifth fastest aging population in the country. Many individuals and couples move to Delaware to retire, and it is not uncommon for a senior’s family to live in other parts of the country. What are the options for out-of-state children to manage their parents’ long-term care when the time comes? This situation becomes acute for adult children who must find care on short notice, especially when the emotional or medical needs of the parent complicate placement. Examples of this include a parent who is hallucinating and acting out, or who is having a tough time keeping their emotions in check.
There are two choices for the family in this challenging circumstance: (1) endless online research and phone calls with limited help from the hospital or rehab center, or (2) hiring a professional Geriatric Care Manager for a fee to quickly identify the realistic options, provide guidance and advocacy, and get the care needed in place. Once the crisis is resolved, the care manager can provide advocacy services as needed for the patient and family going forward.
The individuals providing care management services typically have medical training and experience or are licensed social workers. Charges for these services are billed as a fixed fee or by the hour. It is not cheap.
If the situation is complicated and time is of the essence, then waiting around for free or cheaper help makes no sense. Pay the fees and get to work. Once the dust settles, you will understand just how worth the investment it was in terms of saved time and peace of mind.
To get started, use the search terms: geriatric care manager, care management, care navigation, geriatric care, senior care management, and senior case management. Currently, there is no single search phrase that brings up a majority of service providers in this space. Do not hesitate to ask a Delaware Elder Law Attorney for a referral.
Issues That Will Come Up with Home Health Aides
As a parent’s need for support with activities of daily living grows, it is common to involve home health aides from an agency to cover certain parts of the day. In preparation, the family should put away anything of significant monetary or sentimental value that easily fits into a pocket or bag. Stuff has a way of disappearing over time. Just saying…
Setting boundaries for the parent and caregiver around finances is important. Financial entanglement breaks down the objectivity of the relationship. Sometimes the caregiver discusses their financial problems with the patient. This often leads to the parent “loaning” money to the caregiver. Other times, the parent gives the caregiver expensive gifts. Patients with no family close by often give their debit card or bank account passwords to the caregiver as a matter of “convenience.” Sometimes the patient will tell the caregiver they intend to include them as a beneficiary of their estate.
There isn’t a bright line of what is or isn’t appropriate here. It all depends on the overall circumstances. Caregivers are not necessarily trained not to accept gifts or not to discuss their financial problems with patients. The more vulnerable the patient is, the more important it is for family members to set protective boundaries. The parent wants to be supportive and show their appreciation. Family members should discuss with their parents the importance of not involving the caregiver in their financial affairs and not giving them access to their bank accounts. The discussion should also cover guidelines for making gifts and loans to the caregiver.
The caregiver and patient relationship is built on trust. Truly good people can make bad decisions when tempted. Removing valuable and sentimental tangible things from the premises goes a long way to preserve this trust. Setting boundaries that keep the patient’s finances separate from their caregiver’s preserves the objectivity of the relationship and ensures the quality of care.
Critical First Steps for Caregivers of a Disabled Parent
The job of caregiver may start abruptly or may develop over time. Once you realize that you are that person, there are critical first steps to take to ensure success. Ask your parents for a copy of their Durable Power of Attorney and Healthcare Directive, particularly if they are no longer independent with one or more activities of daily living. These documents should be reviewed by an Elder Law attorney for validity and completeness. The Power of Attorney should specifically allow the Agent to protect assets through unrestricted gifts to an irrevocable trust. The Healthcare Directive should empower the Agent to work with the treating physician to get a DMOST order (DE Medical Order for Scope of Treatment) in place for end-of-life decisions.
Don’t be surprised to learn your parents lack these documents. Please hear what I’m about to say: the status of spouse, child, sibling, or parent does not provide legal authority to make decisions for a disabled person over the age of 18. If your parents lack these documents, please take action immediately to get them in place. If your parents are no longer independent with activities of daily living, go to an Elder Law Attorney. If you delay and your parents become unable to make their own decisions, it will be too late. The only option then is to seek guardianship through the court.
Do not procrastinate on this. You cannot function as power of attorney without proper documentation. Sometimes parents are defensive or paranoid about giving someone authority over their money or life. Other excuses include: they don’t trust lawyers, or they don’t have money for “that.” Immediately begin to work on breaking down these barriers. Enlist the help of your parent’s family doctor or pastor if necessary.
Resist the temptation to go on the internet and find a form to use for “free.” How hard can it be? They are just forms anyway, right? In the context of managing the affairs of a disabled parent, taking this approach is plain negligent. These forms are not tailored to you and have far too much room for error. Work with an attorney to get valid documentation in place that provides the type and scope of authority needed. The attorney will teach you how to carry out your job as agent properly.
Show Me the Money Trail
It is common for adult children to take over managing their parents’ money and paying the bills. This often starts as an administrative task. Access to bank accounts is on a permissive basis. The child caregiver moves money between accounts when necessary, writes out the checks each month. and presents them to the parent to sign. When a parent can no longer directly participate, for whatever reason, then access to the accounts and the execution of checks is premised on a Durable Power of Attorney appointing the child as Agent.
Regardless of why an adult child has begun to manage finances, how the records are kept is important. It is especially so if a parent is disabled and needs support with activities of daily living. This means that Long Term Care Medicaid will probably become the source of funds to pay for care on a sustained basis.
Here are important guidelines to keep in mind. Do not comingle your parents’ money with your own. For example, don’t deposit their income into your account and pay your bills and theirs from that account. Do not lump together deposits of funds; keep deposits from different sources separate. Do not regularly use your money to pay for a parent’s bills and seek reimbursement later. If you have advanced money on behalf of a parent, create a written paper trail to prove their reimbursement to you is not a gift. Please do not borrow money from your parents’ funds on the thought or hope that you will or can pay it back later. Keep receipts for significant purchases and fill in the memo section on checks to identify what was purchased.
A lot of elderly disabled parents want to make gifts later in life. It often takes the form of trying to take advantage of the gift tax rule known as the annual exclusion amount ($18,000 per person/per year). For Medicaid qualification purposes this is still considered a transfer of money for no consideration that creates a period of self-pay for care before Medicaid will begin to pay. Unless the parent is independently wealthy, the children should refuse this gift. The same is true for gifts of cars to grandchildren or payments toward tuition.
In summary, an adult child should create a document trail for money coming in and going out of financial accounts. They absolutely must keep their parents’ assets separate from their own. When a parent is elderly and disabled, the adult child should shut down significant gifts of money and things to family members.
Nursing Home Patients Have Rights
Every patient in a Medicare/Medicaid certified long-term care facility has substantive and procedural protections under state and federal law. The Delaware Patient’s Bill of Rights is found at 16 Del. Code Section 1121. The Federal Patient’s Bill of Rights is found at https://www.law.cornell.edu/cfr/text/42/483.10 . The federal law applies to every facility in the country. State law often reflects the basic federal rules, but will also contain procedural and administrative rules particular to the state in question.
When you read these statutes, it is easy to become overwhelmed by the detail of the content. Therefore, it helps to have a frame of reference to process the information. These statutes reflect the concepts of substantive and procedural due process that originate from the Federal Constitution. The Constitution protects our substantive rights involving life, liberty, and property from arbitrary infringement by government action. If government action impacts a substantive right, a citizen is entitled to procedural due process. Procedural due process gives all of us the right to notice, a fair hearing on the issue, and time to prepare for the hearing before a right is impacted.
The patient’s rights in these statutes all involve life, liberty, and property in some fashion. For example, a patient has the right to privacy, self-determination, access to their property, the presumption of decision-making capacity, freedom of movement and association. None of these substantive rights can be denied or limited by the facility without some level of notice, fair hearing, and time to prepare. If the patient is unable to advocate for themselves, then the right of procedural due process devolves to their representative.
Here is an example: You receive a call from the facility saying “We are discharging your mom right now. Please come and get her.” You ask what happened, and they say that mom hasn’t paid her bill and they are discharging her. When you arrive at the facility you see mom in a wheelchair with her belongings all packed up. You immediately feel a sense of injustice.
The important thing for families to know is that their loved one has legal rights as a patient. If something doesn’t “feel right” or seems “unfair”, it is probably because some fundamental right is involved. At a minimum, the family is entitled to a 30-day notice of the issue and the opportunity to be heard by the administration. Take a look at the state and federal statutes to see if the issue is covered. Every patient is assigned an advocate in Delaware known as an “Ombudsman.” The Ombudsman functions as the patient’s representative with the facility. You can reach the Ombudsman for Delaware at 1-800-223-9074. You can always contact an Elder Law attorney for help as well.
Contracting for Nursing Home Services
A stressful situation for a child caregiver is signing the admission’s contract for a parent moving into a Skilled Nursing Facility. The document is long, and has chapters, sections, and exhibits. Every other page mentions “waiver” of this and that. The admissions person is eager to get the new resident signed in. The family may feel pressure to commit. The admissions person presents the signing pages one after another and directs “sign here and here.” The caregiver is filled with doubt, but almost always complies.
When faced with this scenario, start by taking a deep breath. Ask politely for a complete copy of the contract for your Elder Law Attorney to review before execution of the contract. It is well worth the fee.
What are some of the issues of concern? The first is, who is the financially responsible party under the terms of the agreement? It is quite common for the document to use vague language that leaves open to interpretation whether the Power of Attorney (“Agent”) for a disabled parent signing the contract is agreeing to be personally and financially responsible. This uncertainty is created by the headings for various signature lines and the associated definitions for each heading: “Resident,” “Financial Responsible Party,” “Responsible Party/Designee,” and “Guarantor” to name a few.
The rules for navigating through the signature pages are: (1) the parent is the resident, the responsible person, and the financially responsible party; (2) the Agent is never the financially responsible party; and (3) when signing for the parent, the Agent should sign as follows: “parent’s name, by Agent’s name, POA”. Concerning financial obligations, the Agent has a duty to pay the parent’s bills with the parent’s money. Any language that directly or indirectly seeks to make the Agent the guarantor of the parent’s financial obligations violates state and federal law; the Agent should refuse to sign such a provision.
So, reviewing and signing a contract with a nursing facility is complicated and has far-reaching consequences. Hire an Elder Law attorney to review the document before signing it. It is your right, and the facility knows this.
