Understanding Your Family Caregiver Legal Rights & The Law - A Guide
All steps for caregiving experience
Intro
If you or someone you know is one of the 38 billion Americans providing daily assistance and medical care to a partner or relative, you might be curious about the legal rights of a family caregiver. Read on to learn about family caregiver legal rights.
Do Family Caregivers Have Legal Rights?
It can be difficult to manage another individual's health and the real-life needs of another individual, especially while balancing your own life and responsibilities. Even more frustratingly, there are seemingly few legal options for family caregivers to take when decisions need to be made. However, some preparation and legal knowledge can take you a long way towards a solution.
Power of Attorney
A durable power of attorney (POA) is a legal document naming a person to be responsible for your personal, financial, or medical decisions if you become incapacitated. There are three standard types of POA:
- A durable medical power of attorney, or health care advance directive, gives your named representative the ability to make decisions on your medical care. This can include decisions about who is on your healthcare team, what medications you take, and the type of care you receive (inpatient vs. outpatient). As you can imagine, it’s crucial to find a person you trust to be named your healthcare proxy, or you can let the court appoint a state-approved third party.
- A durable financial power of attorney allows you to name an agent to represent you regarding financial issues. This person would have the power to act on your behalf, allowing them to pay your bills, direct where your income is allocated, and what you have for discretionary spending. You can sign a financial power of attorney preemptively, to ensure you don’t endanger yourself if you become financially incapable in the future, such as if you’re diagnosed with dementia.
- A general power of attorney allows a named representative to make most decisions needed to maintain the lifestyle you had before losing medical and/or financial capacity. These actions can include paying your rent and utilities, submitting medical documents to healthcare groups, and making decisions about your assets.
Healthcare Surrogate Decision Maker
If you become incapable of making decisions, such as falling into a coma, a healthcare surrogate can make decisions for you based on what they believe you would want. If you don’t have a surrogate named in your durable power of attorney or living will, then your medical team may assign the task to your spouse or closest relative. It’s important to keep a legal document that outlines who you would prefer to make decisions for you if something happened that left you incapacitated.
Legal Guardianship and Conservatorship
Legal guardianship is when someone is elected by a court judge to make healthcare, financial, and other decisions for someone who is legally incapacitated. If appointed as a guardian or conservator, caregivers have the authority to make decisions regarding their loved one's living arrangements, medical care, and financial matters. Legal guardianship might occur if you become incapacitated due to senility or other medical issues (coma, etc.), and haven’t assigned anyone as your agent or health care proxy in a legal document.
Conservatorship, similar to legal guardianship, is a relationship between an appointed trustee and a person who manages their finances after they become incapacitated. A conservator is court-appointed and would be able to make decisions such as opening or closing of bank and credit accounts and the sale of property. As you can see, creating an advanced directive is important if you want to maintain your control over your finances and health in the future, and can at least assign the person you trust the most to the task.
Personal Care Agreements
Also known as a family caregiver contract, a personal care agreement outlines the responsibilities of the family caregiver, as well as their compensation. This agreement is critical for both parties. For the family caregiver, the personal care agreement is a legally enforceable contract that ensures they won’t be burdened by financial hardship if they have to leave their career to provide care for a relative.
For the person receiving care, a personal care agreement can be a vital document to hold if you’re trying to get Medicaid to pay for long-term care services. If you’re subject to the 5-year look back period, a personal care agreement can help you by declaring payments made to your family member for care as wages. Otherwise, they are often defined as gifts by Medicaid, making them a potential disqualifier.
A personal care agreement can also serve as a guide to managing care services when you’re over the asset limit for Medicaid, to avoid the spend-down rule. You can find free templates to download online that are customizable, allowing you to craft a document that properly outlines received care services and wages. The Alzheimer’s Association has a handy personal care agreement guide available, as well.
Laws Concerning Family Caregiving
From setting appointments and figuring out the puzzle of health insurance to settling estates, there are various laws surrounding caregiving.
HIPPA or Health Insurance Privacy and Accountability Act
HIPPA regulations were created to protect the private health information of Americans. This means that healthcare workers aren’t able to share your information with anyone other than a covered entity. Covered entities include health plan carriers and clearinghouses and healthcare professionals when transmitting information by HIPPA law, but do not include family caregivers. This poses an obvious problem for a family caregiver trying to set or get results from a doctor’s appointment, for example.
The Privacy Rule allows people to request their own medical information, as well as someone they’ve named a personal representative. There is also the HIPAA right of access rule, which allows an individual to submit a written request to allow a covered entity to send copies of medical records to named family members.
FMLA or Family and Medical Leave Act
The Family and Medical Leave Act helps family caregivers by ensuring their pay and position remain while taking time off to care for a relative. Eligible employees can take 12 weeks of time off each year to care for a family member with serious medical issues, such as a spouse, parent, or child. FMLA is traditionally unpaid, with employers ultimately being the only reprieve if they offer paid family leave.
As of the publication of this article, 11 states provide mandatory paid family leave to employees. State-mandated paid leave has rules that vary by state, with benefits ranging from 8 weeks of paid leave to the federal standard of 12 weeks. Eligibility also varies by state, so be sure to check your state’s website. Some states use social services funding to cover the costs of their paid leave programs. Others, such as New York and Texas’ proposed plan, require employees to purchase an insurance plan.
As of 2023, states offering paid family caregiver leave include Washington, Oregon, California, Maryland, Washington, D.C., New Jersey, New York, Rhode Island, Connecticut, Massachusetts, and some counties in Tennessee.
Several states have put bills furthering paid family leave onto the voting floor but haven’t enacted the policies yet, including Texas (TBT), Minnesota (2026), and Colorado (2024).
Other states, such as Arkansas, Alabama, Florida, Virginia, Vermont, and New Hampshire have created voluntary insurance programs that employees and/or employers can pay into to receive paid leave benefits.
Protecting Family Caregivers from Discrimination Act of 2020
To prevent family caregivers from being treated unfairly in the workplace, the Protecting Family Caregivers from Discrimination Act was created. Family Caregiver Discrimination, also known as Family Responsibilities Discrimination (FRD), occurs when discrimination happens in the workplace based on a person’s responsibility as a primary caregiver.
Caregiver discrimination can happen to parents and family caregivers alike, where an employer will treat a different employee more favorably, such as allowing one person approved leave and not the other. Other examples include refusing to promote a family caregiver, lowering a caregiver's hours, and refusing to hire someone based on their family responsibility. Caregivers have the right to be free from discrimination based on their caregiving responsibilities. This includes protection against harassment, demotion, or termination due to caregiving duties.
Caregiver Advise, Record, Enable (CARE) Act
The CARE Act was enacted to secure the rights of a family caregiver and a person who becomes medically incapacitated. When admitted to a hospital or rehab facility, they can identify their caregiver, who must be notified before any plans are secured for their care or transfer. Their caregiver is recorded in their health record, and the medical facility is then responsible for ensuring the caregiver is educated with home-care instructions. Though not enacted in every state yet, the CARE Act encompasses 42 states, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands.
Seven Tips for Family Caregivers
1. Plan Ahead with an Advance Directive or Living Will
An advanced directive, or living will, is a legal document you can create while mentally sound that gives directions for your care and the handling of your assets, should you ever become incapacitated. Having one in place can help you ensure that your best wishes are followed, such as allowing you to stay in your home instead of selling it and moving you into assisted living. The key is to make sure these legal documents are in place before your loved one begins to suffer cognitive decline and can no longer make competent financial and legal decisions.
2. Evaluate Decisional Capacity
While your loved one may be capable of making decisions, they may begin to decline and lose some senses, such as financial judgment. Be sure to reach out to a professional to help determine their ability to make sound decisions. Take the steps needed to select someone they trust as power of attorney before their intellectual capacity declines too far to help make that choice.
3. Verify Your Loved One Knows Their Rights
When helping your loved ones handle their private business, it’s important to make sure they know what their rights are. The desire to handle one’s own affairs often lasts well into dementia, but fiduciary responsibility tends to be one of the first faculties to leave us. Make moves directly after, if not before, a diagnosis of Alzheimer’s disease or dementia is given, to protect your loved ones from financial abuse.
4. Limit Financial Access
Be sure to safeguard your loved one from financial predators, or people that might unintentionally cause them harm. For example, making healthcare decisions by changing your Medicare plan is fairly easy by calling in to a health insurance clearinghouse. Ask your loved one to inform callers that they have a caregiver who helps them with decisions, and consider screening calls from potential threats such as scammers.
5. Establish Partners-in-Care Relationships
Managing health care after illness or dementia occurs is much easier when you’ve already met the medical team. Ask your loved one to let you accompany them to their doctor’s appointments. This allows you to get a better grasp of their medical situation as well as introduce yourself and become familiarized with their doctors and specialists. In the event you need to provide a higher level of care and your relative is incapacitated, your partners-in-care will be able to include you in the care and recovery process.
6. Practice Self Care
One of the most common issues brought up by members of Olera’s family caregiver forums is that they are burnt out. Many times, we simply feel like we don’t have the time to do the little things that make us feel best. Try to schedule at least some time for yourself in the morning before getting into the work of your day, and time to unwind before bed. Regular exercise and a healthy diet are key to keeping your body strong and helping ward off stress-related illnesses.
7. Reach Out for Help
Find a community to support you and your loved one while going through this often overwhelming process. Visit the family caregiver support groups at Olera, where you can connect with people in the same spot as you are. Find guidance and advice as well as discover the solutions others have found to issues similar to the ones you face as a family caregiver. Being a family caregiver is a huge task, make sure to find your community— you don’t have to do it alone.
Author Bio
TJ Falohun, co-founder and CEO of Olera, is a trained biomedical engineer passionate about developing novel digital health and medical technologies. His passion for innovative solutions drives him to write about the cost of healthcare in America and to revolutionize the senior healthcare industry.
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