Frequently Asked Questions
A: Home health agencies provide HEALTH care. I stress this because many people confuse home health agencies with companionship services. While both types of care help people to stay at home, companions cannot bathe you, administer medicine or provide any real health care. They may call themselves in-home care or caregiver services, but they are NOT the same thing as a home health care agency. So, be extremely specific when you speak to an agency that says it provides home care. If you need any assistance beyond what a regular person (meaning completely untrained in any medical field) can do, you want a home health care agency, not companion services. If you simply want some help with cooking and cleaning, a companion service is just fine. Either way, you will want to ask about the staff and their qualifications. Basically, a true home health care agency can help you with most of the activities of daily living such as bathing, cooking, toileting and also with assistance with medication and light housekeeping. They may have some restrictions such as being unable to lift a totally bedridden person, but they will usually tell you that in advance.
Home health care agencies often provide:
Skilled nursing care services: A level of care that must be given or supervised by registered nurses. Examples: getting intravenous injections, tube feeding, oxygen, changing sterile dressings on a wound.
Speech pathology services: This includes problems with speech, language, and swallowing.
Physical therapy services: Treatment of injury and disease by mechanical means, such as heat, light, exercise, and massage.
Medical social services: These services assist with social and emotional concerns and may include counseling or help in finding resources in the community.
Occupational therapy: Services given to help return to usual activities such as bathing, preparing meals, and housekeeping after illness either on an inpatient or outpatient basis.
Home health aide services: Services to help with daily living activities such as bathing, getting dressed, etc.
A: Accredited (accreditation): Is the home health agency accredited by The Joint
Commission (JCAHO)? The Accreditation Commission for Home Care? CHAP (Community Health Accreditation Program)? This means the organization voluntarily sought accreditation and met national health and safety standards.
Licensed: Is the home health agency required to be licensed in your state? If so, are they? This means they have met certain standards set by a state or local government agency.
Certified (certification): If the home health agency is Medicare certified, it has passed an inspection survey done by a state government agency. Being certified is not the same as being accredited.
Background checks: It is extremely important that the agency conduct NATIONAL background checks on its employees. It is too easy to cross state lines and hide a criminal record. Do NOT compromise on this.
Before we get into the details about inspection reports and how to read them, I have a few disclaimers. First, while the agencies are evaluated by trained inspectors, please remember the inspectors are human, the patients/residents are human, and so are the staff at the organizations. Meaning, sometimes, people perceive things differently from each other. Furthermore, the quantitative standards used by Medicare only tell one side of the story. It is really hard to measure compassion and caring—both very important characteristics in home health aides.
Basically, I urge you to use both Medicare reports as guidelines, not the Holy Grail. They are extremely valuable tools in helping you determine the general level of quality of the facility. They tell you where the problems have occurred and how responsive the provider was in fixing the problems.
It is vital, however, that you think about what you are reading and evaluate whether or not a deficiency really presents a problem. Medicare does “risk adjust” to ensure agencies that serve older, frailer residents do not have much worse scores than those serving primarily “younger elderly.”
A: Activities of Daily Living (ADLs) are: bathing, dressing, toileting, transferring, eating. Difficulties in performing activities of daily living, which are basic functioning, often indicate the need for professional assistance, either with an aide at home, or relocating to a residential community such as an assisted living or skilled nursing facility.
A: Instrumental Activities of Daily Living (IADLs) are those activities that allow an individual to live independently in a community. Examples of IADLs include cooking, cleaning, transportation, laundry, and managing finances. IADLs are commonly assessed to determine the level of an individual’s cognitive function and need for assistance. Think of someone’s ability to follow a recipe or accurately pay bills. Challenges in doing either of these often can be a sign of cognitive issues.
A: First, let us clear up a common misperception. Hospice is not a place. It is a type of care. It may be provided in your own home, a hospice facility, a nursing home, or some hospitals. Hospice provides end-of-life care, comfort care, and/or palliative care. It does not hasten death or postpone death. Instead, it ensures the dying person is as comfortable as possible. Most hospice workers are excellent at pain management and provide the patient with as much dignity as possible.
Hospice workers also help families deal with the impending death of their loved one.
At some point, it may not be possible to cure a serious illness, or a patient may choose not to undergo certain treatments. Hospice is designed for this situation. The patient beginning hospice care understands that his or her illness is not responding to medical attempts to cure it or to slow the disease’s progress.
Like palliative care, hospice provides comprehensive comfort care as well as support for the family, but, in hospice, attempts to cure the person’s illness are stopped. Hospice is provided for a person with a terminal illness whose doctor believes he or she has 6 months or less to live if the illness runs its natural course.
A: Medicare approves certain hospice programs. Not all hospice programs accept Medicare, so not all have gone through the Medicare approval process. The most important factor is if you feel comfortable with a particular hospice provider. You need to be confident that they will work with you to develop a plan and that they will adhere to that plan. Trust your instinct.
A: It often is difficult to broach the topic of hospice. Many people misunderstand and think that hospice is an immediate death sentence. It is not! While it does deal with the end of life, it is a way to live the end of one’s life and to define a different approach to medical treatment. It also is not unusual for people to move on and off of hospice care as their conditions change.
The most important thing to remember about hospice is that communication is key. Hospice workers are specially trained to help families through this stressful time. You do not need to be embarrassed about anything in front of them. Do not worry if you cannot remember your questions, let alone the answers. That is completely normal. Do not be afraid to ask questions when you remember them (or make a list and ask them all at once) or to ask for clarification if you do not understand. It is vital that the patient and the family know what to expect. For example, while hospice services are available 24 hours a day, 7 days a week, this does not mean that hospice provides 24-hour care to each patient.
Here are some useful questions for you to ask the hospice admissions representative when they visit you:
- Is the hospice licensed, (where applicable) and Medicare/Medicaid certified?
- Does the hospice provide the services you want/need? This includes making sure that it is religiously and culturally appropriate for you.
- What does the hospice expect from you and your caregiver support system? Are you comfortable with this? Is this realistic? Do not feel guilty if you cannot provide the care/support that the agency suggests. It is important to be realistic about what you and the family and friends can provide.
- Does the hospice provider adequately support the caregivers?
- Can the hospice provider provide inpatient or respite care if necessary? Where? What are the limitations?
- Are the hospice provider’s positions on resuscitation, hydration, and antibiotics similar to yours? Make certain that you clearly communicate your wishes to them.
- Will your insurance plan work with this hospice provider? How much is covered?
- What out-of-pocket expenses should you anticipate? How much will they cost?
- Is there a sliding scale payment plan for services not covered by insurance?
- Most importantly, are you comfortable with this particular hospice provider? If not, find another.
A: Hospice care is covered under Medicare Part A (Hospital Insurance). You may be eligible for Medicare hospice benefits when you meet all of the following conditions:
- You are eligible for Medicare Part A (Hospital Insurance), and
- Your doctor and the hospice medical director certify you are terminally ill and probably have less than six months to live, and
- You sign a statement choosing hospice care instead of routine Medicare covered benefits for your terminal illness, and
- You receive care from a Medicare-approved hospice program.
Please note that Medicare often still will pay for covered benefits for any health problems that are not related to your terminal illness
A: Generally, independent living and retirement communities provide meals, housekeeping, transportation, social and recreational activities, and laundry. While they traditionally do not provide health services or personal care, many communities will allow you to contract with a home health agency and receive these services. Still others will provide these services for an additional fee. Quite frankly, as the residents of independent living communities have gotten older and aged-in-place, the communities have had to add services to meet their needs.
A: This is a tough one. It is not like you can pick up an inspection report and see how well they scored on percentage of patients who got better at… as you can for a home health agency or a nursing home. There are requirements for things like inspections by the department of health, fire marshal, and others, however. If I were looking for an independent living or retirement community, I would ask the administration of the particular community who licenses them and ask to see any inspection reports available. The requirements vary state by state, so I would also contact your state’s department of elder services and ask if they have any particular suggestions or concerns
A: The trick is to find the good independent living community that makes your family member happy and provides good health care if it becomes necessary. If they cannot provide the care if or when it becomes necessary, your family member will have to move unless the community allows you to pay separately for a home health aide.
Let us start with the health care side first:
What services does the community provide? Ask specific, detailed questions. Some suggestions are below:
Do they have staff who can supervise medication? What EXACTLY can they do to supervise the medication? Can they open the pill bottle and hand your family member the pill? Can they open the pill bottle, but your family member has to get the pill out of the bottle him or herself? Can they not even open the bottle? I know this seems silly, but someone who has arthritis or a weak grip may have trouble opening the bottles. Also, some people lack the dexterity to get the pills out of the bottle. Different care providers have different kinds of licenses which may not allow them to even touch the pill bottles.
How many meals do they provide daily? Weekends? Snacks? Can you pay extra to get more meals? What about purchasing meals for guests?
If someone is sick and cannot make it to the dining room, will someone bring a meal to his or her apartment? How much extra does this cost? Is there a limit to how often they will do it?
What are the emergency medical procedures? I do not mean “is there a call button.” I mean, if there is a medical emergency with your family member, what exactly does the facility do? Calling 911 is an obvious answer. What, if anything, do they do beyond that?
Will they provide transportation to or from doctor appointments?
How is the organization staffed on a regular basis? During evenings and weekends? How many nurses are on duty?
Is there access to a medical staff of board-certified geriatricians? Consulting specialists? Nurse practitioners? While the facilities may not provide the care themselves, some actually have partnered with medical practices that have offices on-site.
Are there any routine medical services and facilities available on-site (for example x-rays, dental, auditory testing)?
Does the organization have an affiliation with any medical schools or clinical research programs?
How are medical situations handled if they are beyond the organization’s capabilities? If a resident needs to go to the hospital or a specialist, are they accompanied by a staff member from the organization?
Does the organization offer physical, occupational, and other therapies? How often?
Do not forget the social side of the equation.
A word of warning. Don’t be overly influenced by the decorations. Many facilities look prettier than others but don’t provide the care that is needed as your family member age is in place. I often joke, although it’s not really funny, that people are swayed by a $24.99 vase from the local discount store. If it’s bright and pretty and has pretty flowers in it, people automatically like the community better. Don’t fall for the trap. And, high ceilings don’t necessarily mean that the rooms are any bigger. I appreciate the effort to make the places look nicer, but that is not the primary requirement.
A: Essentially, assisted living facilities take care of people who cannot live alone and do not need twenty-four-hour skilled nursing care. The residents need help with the activities of daily living. Yes, I know this is a generic definition, but since the definitions and standards vary from place to place, it is the best I can do.
Why assisted living? If an older adult needs help with bathing, cooking, shopping, etc, he or she has three choices—relying on family or friends, hiring a home health aide, or moving to some residential community that has care available. Here is where it gets tricky, though. Some independent living communities have supportive services such as community meals, housekeeping, and linen service. Still other independent living/retirement communities allow you to pay extra for a home health aide to provide services within their community—then they look like assisted living facilities. Some assisted living facilities allow you to bring in a nurse for additional care—then they look like nursing homes. So, it all becomes a blur.
Here is how I look at it. If your family member needs some help with activities of daily living but is safe at home, can get in and out of his or her house easily, has plenty of social interaction with friends, family, and neighbors, then a home health aide is fine. If, however, the person is socially and physically isolated, lonely, and/or bored, or is unsafe at home, or needs more care, it is time to look at residential care.
A: Consumers often are lacking the information they need to determine whether or not an assisted living facility is any good. At a minimum, the facility should provide the following services: 24-hour staffing and assistance as needed, exercise/wellness/programs, meals/dining services, housekeeping, medication management and/or assistance, assistance with activities of daily living, social activities, and transportation to medical appointments.
Almost all assisted living facilities will tell you that they are perfectly capable of taking care of people with Alzheimer’s and other dementias. That is simply untrue. You need to ask specifically where their secure floor is, how they prevent people from wandering, what kind of activities and cognitive stimulation they provide, etc. Make them show you.
Also, you need to know exactly how much assistance they are willing to provide with the activities of daily living, how much medical care is available, and when they are going to require you to add a private duty aide at your own expense to supplement their staff, or when they will tell you they can’t take care of your parent anymore. It’s important to understand the parameters.
Also, repeating advice given above, do not be unduly influenced by the skill of the interior decorator. You want to be looking for cleanliness, infection control, staffing, quality and number of personal care assistance or aides, nursing staff, food, etc. And, remember that some of the prettiest, softest furniture with the nicest fabrics get soaked in urine and can’t be cleaned. And, low squishy chairs are exceedingly difficult for mobility impaired people to get in and out of.
You should expect that an assisted living community will provide itself or contract with an outside provider for the following health care services:
Percentage of assisted living communities that provide (by employees or arranged with an outside service provider) certain health care services:
- 6% pharmacy/pharmacist
- 8% dietary and nutritional
- 4% therapy (physical, occupational or speech)
- 7% hospice
- 1% skilled nursing
- 0% mental health or counseling
- 51.1% social work services
A: The trick is to find the good assisted living community that makes your family member happy and provides good health care.
Let us start with the health care side first:
What services does the community provide? Ask specific, detailed questions.
Some suggestions are below:
Will they bathe your mother? How often?
Administer the medicine or just supervise her when she takes it? Again, ask for specific details. Can they open the pill bottle? Hand the pills to the resident?
How many meals do they provide daily? Weekends? Can you pay extra to get more meals?
If someone is sick and cannot make it to the dining room, will someone bring a meal to his or her apartment? How much extra does this cost? Is there a limit to how often they will do it? What about guest meals?
What are the emergency medical procedures? Ask specifics here, too. What do they do other than dial 911?
Will they provide transportation to and from doctor appointments?
How is the organization staffed during evenings and weekends? How many nurses are on duty? What kind of nurses? Doctors?
Is there a medical staff of board-certified geriatricians? Consulting specialists? Nurse practitioners?
What routine medical services and facilities are available on-site (for example x-rays, dental, auditory testing)?
Does the organization have an affiliation with any medical schools or clinical research programs?
How are medical situations handled if they are beyond the organization’s capabilities? If a resident needs to go to the hospital or a specialist, are they accompanied by a staff member from the organization?
Does the organization offer physical, occupational, and other therapies? How often?
Does the organization’s dementia special care unit provide a physical environment that is specially designed for the safety of the residents?
A: Nursing homes generally provide twenty-four-hour medical care, room and board, activities, and more. They are intended for people who really do need twenty-four-hour medical care, not people who just need help with activities of daily living. Care is described as fitting into one of the two categories below. Please be aware that these definitions vary somewhat depending on the insurance provider, etc.
Custodial Care (non-skilled): Assistance with activities of daily living including bathing, eating, dressing, toileting, transferring from the bed to a wheelchair, etc. This is the type of care that can safely be provided by non-medical personnel. Generally, however, people who need this type of care and choose a nursing home over other care options also need some sort of regular medical care.
Skilled Nursing: Includes care that must be provided by or supervised by qualified technical or professional staff such as registered nurses, licensed nurses, physical therapists, occupational therapists, speech pathologists, or audiologists. Examples include the administration of intravenous feedings, intramuscular injections, the insertion of catheters, and ultrasound therapy treatments. Basically, if the task could be safely done by a non-medical person, it is not skilled nursing. It is important to note that skilled services may be provided even if the patient’s full or partial recovery is not expected. Meaning, these services may be provided only to ensure the patient does not get worse. Additionally, patients with terminal illnesses still may receive skilled
care to alleviate pain, etc.
A: CCRCs are retirement communities that offer more than one kind of housing and different levels of care. In the same community, there may be individual homes or apartments for residents who still live on their own, an assisted living facility for people who need some help with daily care, and a nursing home for those who require more care
A:
1. How EXACTLY does the down payment/initiation fee/community fee work? How and when is it refundable? Is it adjusted for age and health? Is it adjusted for size of the apartment?
2. What happens if the resident runs out of money? Does the CCRC spend down from the deposit? What happens after the deposit is exhausted? Does the resident have to leave the community?
3. Who provides the medical care on the campus? What happens if the resident needs medical care off campus? Is transportation provided? Is the resident accompanied by CCRC staff? Who pays for what?
4. Is the CCRC financially solvent? With whom is it affiliated?
5. Finally, look at the community in general. Does it seem like a good cultural, social, financial, and medical fit?
A: The Health Insurance Portability and Accountability Act of 1996 (HIPAA) is a federal law that required the creation of national standards to protect sensitive patient health information from being disclosed without the patient’s consent or knowledge. The US Department of Health and Human Services (HHS) issued the HIPAA Privacy Rule to implement the requirements of HIPAA.
The Privacy Rule standards address the use and disclosure of individuals’ health information (known as “protected health information”) by entities subject to the Privacy Rule. These individuals and organizations are called “covered entities.” The Privacy Rule also contains standards for individuals’ rights to understand and control how their health information is used. A major goal of the Privacy Rule is to ensure that individuals’ health information is properly protected while allowing the flow of health information needed to provide and promote high quality health care and to protect the public’s health and well-being. The Privacy Rule strikes a balance that permits important uses of information while protecting the privacy of people who seek care and healing.
Most doctors and hospitals require a signed HIPAA form allowing them to talk to you. Your loved one needs to be the person to sign it and to name specific individuals who are allowed to communicate with that particular healthcare provider. If your loved one said that the hospital cannot talk to you, the hospital will not talk to you, even if you are a family member. The hospital staff is not trying to be difficult. Rather, they are protecting patient privacy.
A: These providers primarily deal with the activities of daily living (ADLs)—the things we usually do to take care of ourselves. These include bathing/showering, dressing/undressing, eating/self-feeding, transferring (getting out of bed and into a chair), ambulation (walking), and toileting (or taking care of incontinence).
The providers also support the ADLs through Instrumental Activities of Daily Living (IADLs)—the stuff that makes the ADLs possible. For example, eating is an ADL, but how did the food get onto the plate and in front of the person who is eating it? That process of shopping, cooking, and cleaning up is an IADL. IADLs also include things like using the telephone and technology that allow a person to remain independent in their own home.
Home care agencies are excellent resources for providing services for both ADLs and IADLs. They can provide staff to shop, cook, clean, provide companionship and more. Many agencies also have nurses to offer medication management.
Home care agencies often are staffed by certified nursing assistants (CNAs). CNAs undergo specialized training and certification, and if part of an agency, should undergo continuing education and training.
People often make the mistake of assuming anyone can provide these services and hire their next-door neighbor’s cleaning woman’s sister to take care of their mother. Please understand that taking care of an older adult is more than cooking and cleaning. Reputable agencies hire trained professionals, train them, conduct national background checks, are licensed/bonded/insured, and have backup plans in place. They are trained to identify and handle emergencies, and they have procedures in place to recognize problems and quickly correct them.
