Tag: activities of daily living

What Doctors Need to Hear From Family Caregivers

Posted on by Barb Koumjian

This article includes: Information that you can view, download and print

This article is for people who are the primary, regular caregiver for an adult child, parent, other older relative or friend. For resources on communicating with medical professionals when you care for a minor child, or a child transitioning from pediatric to adult health care, you can view these resources from PAVE:

Introduction: The focus of this article is to help you understand:

  • Why it’s important for your loved one’s doctor to know about your family caregiving situation
  • What the doctor and medical team can do to support you as you care for their patient.

The article also covers basic information about the HIPPA Law and the legal healthcare documents you may need when you care for an adult with chronic medical condition or disabilities.

Caring for a family member or close friend

For many people, caring for a loved one who is aging or has a severe medical condition or a disability is natural. That’s what loving and helping means in a family. Caring at this level can create deep closeness; it’s a privilege to share so much time and have your actions show how much you love them.

At the same time, life doesn’t always accommodate family caregiving. Employers may not make it easy to take time off when your loved one needs you—even though in Washington State there are several options to take unpaid or paid leave. Other issues include not having enough room in your own house or adequate transportation to and from your loved one’s home. Some of us don’t realize how much time is involved. 

Family caregiving is usually a lot of work!  It can  be an additional job on top of the work you usually do. Juggling this “extra job,” regular employment and home life causes “caregiver stress.” All family caregivers are at risk for caregiver stress, as family caregiving continues and becomes more intense as a loved one ages or their health conditions get worse over time.

What do doctors know in general about family caregiving?

Pediatricians often assume parents or guardians who are raising a child with a disability or medical condition are a part of that child’s “medical team,” because parents are responsible for making sure that treatments are followed.

Doctors who treat adults, and those who treat elderly patients (geriatricians) don’t always have that viewpoint, even when their patient always comes to the office with a family member. They are usually more concerned with making sure the family caregiver understands their patient’s medical condition(s) and making sure the treatment plan is followed than having the caregiver be a part of a healthcare conversation.

If a medical professional has been a family caregiver, they know quite a lot based on their personal experiences. This often encourages them to ask their patient’s caregiver how the caregiving situation is going and how the caregiver is doing—physically and emotionally. When the medical professional doesn’t have that life experience, the caregiver is rarely asked anything about caregiving or their personal well-being. (You can read the study for free at Pub Med Central).

A 2020 study noted that 45% of family caregivers of adults and elders were never asked by their loved ones’ doctors if the caregiver needed support handling caregiving duties, including training on medication management, at-home medical procedures and safely helping with daily living activities. “Caregivers were often hesitant to speak up about these concerns, as medical visits can be short and they wanted the doctor to focus on the patient”. (Read about the study on the AARP website).

The good news is that this situation is changing. Family caregiving and family caregivers are a topic of national discussion by healthcare experts, lawmakers, government agencies, and medical professional associations. Whether they realize it or not, family caregivers are an essential, and usually unpaid, part of our health care system. Some policy makers want doctors and other medical professionals to do more for family caregivers, such as:

  • Being given training by medical professionals on how to safely perform medical tasks and treatments in the home (Medicare covers this type of training for family caregivers).
  • Taking time in each patient’s appointment to speak privately with the family caregiver about their own health and well-being
  •  Recognizing that the family caregiver’s level of stress or well-being affects their patient, and providing resources and referrals to support the family caregiver

“Expert guidelines already instruct health care providers to identify and work with caregivers, but this generally doesn’t make its way into practice,” said Dr. Anna Chodos, a Professor of Medicine at the University of California, San Francisco. Health care visits are structured around tasks that providers document and bill for, she explained. “If engaging with caregivers is not in that structure, it looks to health care providers like it’s not part of the visit”.

It’s important that your family caregiving situation is something your own medical providers and your loved one’s doctors know about, just like they need to know about other things that impact people’s lives. When they do not have this information, they end up making decisions about your loved one’s treatment or well-being without the full story. The care you give at home, and your ability to do it accurately affects your loved one’s health. Your:

  • Energy level
  • Sleep
  • Overall or specific health concerns or physical well-being
  • Mood or emotions
  • Employment
  • Financial situation
  • Other family members’ needs affect your loved one’s care, because they affect you.

How can you get a doctor’s attention to your family caregiving situation and your questions and concerns?

Become familiar with the important members of the medical practice team, especially the ones who pass on information to the doctor (a doctor’s assigned nurse or assigned medical assistant) and the staff at the front desk who schedule appointments. Treat them as the valued members of the team that they are, and they can be very helpful.

  • They can often help follow up with referrals, tests and lab results, and urgent prescriptions.
  • It makes sense to alert the doctor ahead of an appointment or even schedule a separate phone call with the doctor, the doctor’s nurse or medical assistant if you want to speak about specific issues.
  • It’s a good idea to begin with one or two urgent issues or questions, or a specific concern. This allows the medical professional to focus on your most important needs.
  • Does the medical practice have an online “health portal” where patients can make appointments, read lab results, pay bills, and contact the doctor or member of the medical team? If so, ask for access (with your loved one’s permission unless you are their healthcare proxy -see legal documents, below).
  • You can also request a scheduled phone or in-person discussion by email; most medical practices have a general office mailbox. You don’t have to give details by email but address the request to the person most likely to get the doctor’s attention (usually the nurse or medical assistant).

You can use this downloadable form to organize your thoughts or send it to the office.

Requests for Doctor and Medical Team

How does a family caregiver get access to important medical information with the HIPPA law?

Because HIPPA requires a patient’s consent to give out or share private medical information, even family members and family caregivers need to get permission from an adult person they care for, in order for doctors or hospitals to share information and medical records. Patients can pick up a HIPPA release form (also called a HIPPA waiver) at their doctor’s office that will allow for a caregiver to be a larger part of the healthcare conversations.

What legal documents do you and your loved one need for you to act for them on medical care?

To allow specifically named family members or other individuals to make health care decisions on their behalf, there are several options.  Which one is best for your situation depends on your loved one’s cognitive and verbal abilities. A lawyer can be consulted on how to go about getting the following. A Healthcare Proxy, also called Healthcare Power of Attorney, gives you, or someone else your loved one chooses, the authority to speak with doctors and make medical decisions on their behalf. Powers of Attorney are usually created with the assistance of a lawyer and signed by your loved one and by the person they choose to be their “agent”.

A Living Will is a written and legally binding document that tells a person’s doctors what their preferences are for end-of-life care. For a family caregiver, it lifts the burden of having to make decisions on this topic. Your loved one is the person who fills it out and signs it. Each state has different laws and practices on this type of document. AARP has a short article that also has links to state-specific Living Will forms.

The healthcare proxy and the living will are often part of one document called an “Advanced Directive,” because it tells healthcare professionals who can make medical decisions in advance of any situation where an individual is unable to communicate with their doctor or make decisions.

A Durable Power of Attorney is a type of power of attorney doesn’t depend on a physician declaring that your loved one has become incapacitated and unable to make their own medical decisions. It becomes effective once it has been signed by your loved one, and the person selected to have the power of attorney.

If the person you care for has Medicare health insurance, a Medicare Authorization to Disclose Personal Information gives a family caregiver the authority to talk with Medicare about claims, eligibility, payments to providers, and more. The form is available for download and print from the Centers for Medicare and Medicaid Services.

Medicaid or Medicare-Which Covers Long-Term Care?

Posted on by Barb Koumjian

This quick tip sheet explains which of these programs covers long-term care either in your home, or in a nursing home or other care facility.

Medicare:  No long-term care coverage in the home or in a care facility

  • The Medicare Part A benefit for medically necessary skilled nursing facility care becomes active after hospital treatment for an illness or injury.   
  • Medicare Part A pays for medically necessary skilled nursing facility care, up to 100 days, if the patient is actively participating in rehabilitation services and showing improvement within their plan of care.
  • Medicare Part A does not pay for ongoing long-term (custodial) care in a skilled nursing facility once rehabilitation is complete, nor does Part A pay for ongoing long-term (custodial) care in assisted living, memory care, or adult family homes. 
  • Medicare Part B pays for medically necessary home health care, if the patient is homebound, actively participating in rehabilitation services (physical therapy, occupational therapy, respiratory therapy) and showing improvement within their plan of care.

Medicaid:  Long-term care coverage is available in the home and in certain care facilities.

  • Eligibility is based upon the income, resources, and functional need of the applicant.
  • There are special allowances for income, resources, and housing costs of married couples.
  • Medicaid can pay for in-home care or residential care in certain facilities that accept Medicaid funding to pay for the long-term (custodial care) of their residents.
  • Recipients may be required to pay “financial participation” to their care provider, to qualify for and to maintain their Medicaid eligibility, depending upon their income level. 
  • Estate recovery is required to return Medicaid funds to the state once a Medicaid recipient or the surviving spouse of a Medicaid recipient dies.
  • There is a five-year “lookback period” to determine whether an applicant had been “gifting away” resources to qualify for Medicaid. 
  • Eligibility for a recipient receiving Medicaid is reviewed every twelve months. 

Courtesy of Pierce County Washington’s Aging and Disability Resource Center (ADRC), part of the Aging and Disability Resource Centers network across WA State. Find your area’s ADRC at Community Living Connections.

How to Afford Family Caregiving, Part 4: How Can I Afford Long-Term Care?

Posted on by Barb Koumjian

What happens if you, or a loved one, cannot do things that keep you healthy, active and safe? Becoming disabled or having less ability to do certain things can happen to anyone at any age. Accidents or a chronic illness may result in a situation where you may have difficulty with “activities of daily living”. Preparing meals, dressing, showering or taking a bath, going to the toilet and cleaning yourself after, walking easily, being able to clean your house or apartment, taking your dog out for walks, driving, shopping for food –it’s a long list! We may take our abilities for granted until we can’t do them anymore. 

Video transcript in English

When activities of daily living become difficult, many people find others who step in to help: spouses, siblings, adult children, other family members, even friends and neighbors. These are “family caregivers”, and their support allows people to continue to live in their own homes and avoid the high costs of professional caregivers or having to move to a residential facility like a memory-care unit or a nursing home.

Just how important are these free services offered by family members, friends, neighbors and others? 

Services like these, whether given by family members or professionals, at home or in a facility, are called “Long-Term Services and Supports (LTSS)”. According to a 2022 Health and Human Services report, over half of Americans turning 65 today will require LTSS.

The cost of care for LTSS given by professionals, or in a facility:

The average American turning 65 today will incur over $120,000 in future LTSS costs and may have to pay much of that out-of-pocket. A 2023 KFF report stated “the overwhelming majority of adults say that it would be impossible or very difficult to pay the estimated $100,000 needed for one year at a nursing home (90%) or the estimated $60,000 for one year of assistance from a paid nurse or aide (83%).” Traditional Medicare doesn’t cover long-term care, while some Medicare Advantage plans offer only limited  coverage for services like meal delivery.

Medicare does NOT cover LTSS. It’s important to know that Medicare health insurance, which many individuals rely on for health care after age 65, does not cover or contribute to the costs of in-home help for activities of daily living or care in a facility such as a nursing home or memory-care residence.

Medicare does cover temporary care in a rehabilitation facility when your physician orders it for recovery from accidents, surgery, stroke and heart attack, and similar medical reasons. It may also cover short term rehabilitation care in your home after you are released from a hospital or rehabilitation facility. All services are based on medical need and are time limited.

Medicaid or Medicare, Which Covers Long-Term Care? compares which program covers which services and under what circumstances.

In Washington State we have an agency focused on LTSS, the Aging and Long-Term Support Administration (ALTSA). Washington State has several programs that may help families reduce the costs of long-term care.
To find which of the programs and services below you are eligible for, contact Community Living Connections by phone toll-free, 1-855-567-0252, or on their website.

ALTSA has a website page listing the types of services that support people to stay in their own home (these are often called Home and Community-Based Services).When it’s not possible or desirable for you to stay in your own home many people use residential care. Some types of residential care are paid for by Medicaid, if you are eligible. Information about types of residential settings, state supervision of residential facilities, and tools to search for and compare residential options are listed on ALTSA’s page about Long Term Care Residential Options.

Ways to reduce the cost of long-term care:

Washington State Medicaid (Apple Health) 

Long-Term Services and Supports are available for some individuals under Washington Medicaid/Apple Health. There are financial criteria to qualify, including looking at income and assets. In many cases, those who own their own home and are without significant debt are deemed ineligible. To check the eligibility requirements see the Washington State Medicaid Long-Term Services and Supports for Adults booklet. 

Note: WA State offers the Specialized Dementia Care program at some assisted living facilities for people who qualify for long-term care under Medicaid.

The package of specialized dementia care services includes (in part):

  • Care, supervision, and activities tailored to the specific needs, interests, abilities, and preferences of the person. 
  • Coordination with the person’s family to ensure the person’s routines and preferences are honored.
  • Dementia-specific training for staff. 
  • Awake staff twenty-four hours a day.
  • A safe outdoor environment with walking paths and access to a secure outdoor area.
  • Intermittent nursing services, help with medications, personal care, and other support services.

LTSS for Military-connected Individuals:

Veterans can access long-term care through the U.S. Department of Veterans Affairs. 

TRICARE, health insurance for military members and their families, does not cover long-term care but can provide some services and supports, similar to those Medicare does cover. Some military members may be eligible for the Federal Long Term Care Insurance Program.

Private Long-Term Care Insurance:

These insurance policies can be purchased at any time and are meant to last for a lifetime. The cost of these policies is determined by a recipient’s age, health, and location, and rates go up over time. These can be expensive and difficult to find but may be worth looking into.

Not all Long-Term Care Insurance companies operate in the state of Washington – to see a list of all approved agencies, view them at the Office of the Insurance Commissioner.  The Office of the Insurance Commissioner has an online booklet called A Consumer’s Guide to: Buying Long-Term Care Insurance and Other Ways to Pay for Long-Term Care that can answer questions and explain the process for signing up for insurance. 

Washington State Long-Term Care Partnership Program 

Many families liquidate (get rid of, or use up) assets in order to be eligible for Medicaid LTSS services, and to address the issue, the state created the Long-Term Care Partnership Program.  The program is a partnership between long-term care insurance companies and the state of Washington Medicaid program, so that families can keep many of their assets, yet receive Medicaid Services for LTSS.  Under these policies, assets are protected up to the amount of benefits paid under the policy. For example, if the Partnership Policy paid $100,000, then Medicaid would allow you to keep $100,000 in assets, yet you’d still qualify for government LTSS as long as you meet all other qualifications. This is a movable policy, as Washington participates in a “reciprocity” agreement with several other states. See the list of long-term care insurance companies approved to sell Partnership policies in Washington state. 

WA Cares Fund:

A newer option that helps with the expenses of long-term services and supports is the WA Cares Fund, a public, long-term care insurance program.  All Washingtonians who get a paycheck have a small percentage of their earnings go to this fund automatically, just like Social Security and Medicare tax is withheld from a paycheck. The program went into effect in July of 2023.

  • Most Washington employees will have .058 % of their paycheck placed in the WA Cares Fund. WA Cares website has an online calculator so you can check out the actual dollar amount. Everyone contributes at this same low rate, regardless of income.
  • Exceptions: Federal employees do not contribute. Employees of tribal entities only contribute if the tribe decides to have their employees contribute.
  • If you are self-employed you can choose to contribute to the fund.
  • After paying into the system for 10 years you can withdraw from the fund. There are exceptions to the 10 year rule if you are retiring soon or have an emergency need for LTSS. 
  • Funds can be withdrawn beginning in July of 2026.
  • WA Cares funds can be used if you live in another state.
  • Funds can be used to pay for many services and supplies: paying a relative to care for you, making your home safe and accessible, transportation, food delivery, durable medical equipment to help you stay safely in your home, and more. Funds can also be applied to the cost of residential (facility) care.
    You will have to create an online WA Cares account and submit an application
  • If you have contributed to the fund for 10 or more years, you will receive up to $36,500 (adjusted for inflation) to pay for your long-term care.
  • If you need to access WA Cares funds earlier, because of retirement or emergency need, you will get less.

Help for your family caregivers

If you plan to get in-home supports from family members or others, using your benefit from the WA Cares Fund can take some tasks off their list, or pay them for their time. That’s a big help because even though family caregivers help out of love, the time and out-of-pocket costs of caring for you can have an impact on their financial situation.