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Home Health Care

 

Cancer survivors may face challenges during or after treatment that require ongoing assistance with health care. Medical advances are making it increasingly possible to safely provide health care at home instead of in a medical facility. If you or a loved one have concerns about these types of challenges during or after treatment, home health care may make it possible to continue to live at home without giving up the benefits of specialized health care.

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Home Health Care: Detailed Information

 

This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources.

Note: As with all LIVESTRONG documents, individuals living with cancer will be referred to as "survivors." Also in keeping with LIVESTRONG style, this document will talk directly to you, the survivor, even though the topic may not relate to your current needs or condition. The terms "family" and "loved ones" are used to mean all of the people that you care about and turn to for support, including relatives, spouses, partners and friends. The term "caregiver" is used to mean whoever is providing most of your day-to-day care, whether that person is a spouse, partner, child, sibling, relative, friend or privately hired person.


Home health care is a term that includes a wide range of medical, psychosocial, personal and rehabilitation services provided to individuals in their own homes. With medical advances, more and more care can safely be given at home instead of in a medical facility like a hospital, clinic or doctor's office. An important goal of home health care agencies is to enhance the well-being of everyone involved without taking over or replacing the role of your family and other caregivers.

Depending on need, home health care services can be provided on a temporary, short-term basis or on a long-term basis. For example, home health care can be used by people who are in the process of recovery, such as those recently discharged from the hospital. These services may also be appropriate for those who have a longer-term need for assistance, such as a newly disabled person or someone who is chronically or terminally ill.

Some cancer survivors face physical challenges during or after treatment that require ongoing assistance with health care. If this is something you or a loved one are facing, keep in mind that home health care may make it possible to continue to live at home without giving up the benefits of specialized health care. Many people find the home health care option preferable to an extended stay in a hospital or a move into an assisted living or nursing home facility.

This document provides an overview of the process of finding the home health care services that best meet your needs, including:

  • When a survivor should consider home health care
  • What kinds of home health care services are available
  • What care providers are associated with home health care
  • When a survivor should talk with a doctor about home health care
  • How a survivor can get home health care services
  • How a survivor can pay for home health care
  • What to do if you have concerns about the home health care services provided
  • How a survivor can find and select private home health care workers


When should a survivor consider home health care?

Home health care is usually considered when you cannot live comfortably and safely without additional support services. This type of care may be suggested by a doctor or other member of a health care team. In addition to the emotional comfort that the home environment may provide, home health care is usually less expensive than care provided in a medical facility. Access to hospitals or other health care facilities remains available as needed.

If there comes a time when these services are needed, be sure to research and compare a number of licensed home health care agencies. You can also consider the possibility of hiring your own caregivers. There are major differences in how home health care agencies and individual caregivers operate and you may find that one method meets your needs better than the other. 


What kinds of home health care services are available?

Home health care falls into two broad length-of-care categories:

1. Short-term (or acute) care: Provides assistance following an illness or injury. The goal of short-term care is to provide the necessary services to help you get better, regain your ability to function and care for yourself and become as independent as possible.

2. Long-term care: Provides care for people who are chronically ill or more seriously or permanently disabled. The goal of long-term care is to help you maintain your highest level of function or health, and help you learn to adjust to and manage the changes resulting from your illness or disability.

Within these two categories there are different levels of care:
 
Custodial care (non-skilled care) is care that helps with activities of daily living like dressing, bathing and toileting. This type of care is often not covered by government-sponsored programs like Medicare.

Skilled care is a level of care that requires special training and skills and must be provided by a licensed professional and prescribed by a doctor. Government-sponsored programs may pay for medically necessary skilled care.

The following are types of skilled care services:

  • Intermediate care services include nursing and rehabilitative care that is provided at a level between intensive and basic care. These services are ordered by a doctor and supervised by skilled medical personnel.
  • Intermittent services are usually defined as skilled health care services that are needed or provided fewer than seven days each week or less than eight hours per day over a period of 21 days.

What care providers are associated with home health care?

Certified home health care agencies employ a variety of care providers to deliver services. In addition to nursing care and home health aide services, agencies can provide or arrange for specialized services with social workers or physical, occupational or speech therapists. Home health care agencies can also assist with arrangements for medical supplies and equipment or nutrition programs, such as home-delivered meals.
 
With a doctor's order, the following caregivers may be arranged through home health care agencies:

1.  Licensed care providers

  • Registered nurses (RNs) and licensed practical nurses (LPNs) can give medication, change bandages, administer treatments, monitor pain or other symptoms and check vital signs (temperature, blood pressure, heart rate, breathing rate). 
  • Occupational Therapists (OTs), Registered Physical Therapists (RPTs), Nutritionists and Social Workers (MSWs) can provide home health care services prescribed by a doctor in their professional area of specialty.

2.  Attendant caregivers

  • Certified nursing assistants (CNAs) must complete a state-approved training program and competency test. CNAs perform routine tasks under the supervision of licensed nursing and medical staff, such as wound and skin care, checking vital signs, helping with transfers (moving from one place to another), assisting clients with ambulation (walking), prescribed exercises and other care procedures. CNAs may also provide assistance with activities of daily living (ADLs). ADLs are those activities that are necessary for people to be able to live independently, including bathing, toileting, eating and moving around the home.
  • Home health aides may assist with personal services and ADLs, such as bathing, toileting, eating, ambulation and transfers.
  • Personal care attendants (PCAs), homemakers or companions can only assist with cleaning, cooking, laundry and other household chores. They may also help with shopping or accompany clients to appointments or other errands.

3.  Respite caregivers

Respite care services offer other caregivers a temporary break from the day-to-day demands of caring for another person on a full-time basis. Respite care is usually needed by the primary caregiver of someone who is severely or chronically disabled. Services may include housekeeping, home health assistance, nursing and child care.

4.  Hospice caregivers

Hospice is a specialized service that provides a compassionate, supportive network of professionals and volunteers to help manage the many physical, practical and spiritual challenges that often occur at the end of life.

Hospice services can include skilled and unskilled nursing care, pain management, and assistance with getting personal and legal affairs in order, as well as many options for emotional support. Hospice workers include nurses, social workers, home health aides, volunteers, therapists and pastoral counselors. Services may be provided at home or in a hospital or nursing home.

The following hospice documents can be found in the list of Practical Topics:

  • What Hospice Care Means for Survivors
  • What Hospice Care Means for Caregivers

When should a survivor talk with a doctor about home health care?

If you think you may have a need for home-based health care services, talk about your needs with your doctor. The doctor must prescribe or order skilled home health care services in order for insurance to pay. Tell your doctor about any problems you are having with daily activities and ask the doctor about what types of health care services might be helpful to you at home.

Be certain to include the following in your discussion with your doctor:

  • Concerns about being home alone
  • How often a caregiver might be required
  • Types of assistance that will be needed, such as cooking, cleaning or help with other ADLs
  • Barriers to getting around your home, such as climbing stairs or physical challenges such as walking the distance to the bathroom, kitchen or bedroom

Before your meeting with the doctor to discuss these matters, write down your concerns and questions. This discussion will help define how much and what type of home health care services may be needed, such as skilled or intermittent care.

How can a survivor get home health care services?

There are two main ways that home health care services are obtained: licensed home health care agencies and workers that you hire on your own ("private pay").

Home health care agencies coordinate and supervise the provision of skilled services (such as wound care, injections and other medical care) in your home according to your needs and as ordered by your doctor. Home health care agencies are licensed. If the agency has also met federal and/or state minimum requirements for patient care, it is Medicare-certified and has qualified for Medicare and/or Medicaid payments for home health services.

If you have a doctor's order or prescription and work with a licensed and certified agency, costs for services may be covered through an employer-sponsored, private or government-sponsored insurance plan. Frequently, only part-time and/or temporary home health care services are covered. Talk with your insurance provider about your specific plan, what is covered and what is required to qualify for coverage.

Your insurance company may have a relationship with certain home health care agencies and direct you to a specific service provider. Generally, you have the right to choose the home health care provider that you want, although members of certain insurance plans may have their choices limited to the agencies that are listed in the policy.

If home health care is needed following a hospitalization, a hospital social worker will usually initiate contact with a home health care agency and coordinate services with the doctor, as well as with you and your family. Local and national cancer organizations and agencies for the aging may also be able to suggest home health care providers. Keep in mind that a home health agency has the right to refuse to accept any individual patient if the agency is not able to meet the patient's needs.

Private home health care workers are individuals hired directly by you or your family, such as through a friend, a classified ad or a similar "help wanted" posting. These caregivers typically provide companionship and help with ADLs, such as housecleaning and meal preparation.

If you plan to pay for home health care services on your own, such as by hiring a personal care attendant, this can be arranged directly and does not require the orders of a doctor. However, licensed nursing services that are provided by a RN or LPN do require a doctor's order.

Researching home health care agencies

Begin your research by asking health care team members (such as your doctor, nurse or therapist) to help you with recommendations and contact information for home health care agencies. A hospital social worker, cancer organization or your Health and Human Services office may also be able to direct you to local resources that are available.

The following are steps you can take to research home health care providers:
 
1. Think through what your medical or home health care needs are now, as well as what they are likely to be in the next few months.

2. Once you identify some home health care agencies that appear to be able to meet your needs, check each agency's credentials. Organizations such as the Joint Commission can provide information about agencies.

3. Check the home health care agency's reputation locally by speaking with your doctor, social worker or local cancer organization. You can also learn whether the agency is experienced in treating people with cancer.

4. Decide whether the level of care that the agency provides will meet your needs. The home health care agency should be able to provide you with an individualized plan of care that lists:

  • The services the agency will provide
  • The names of the people who will perform each service
  • The qualifications and training of those who will be performing each job
  • How often agency personnel will visit

5. Find out if the services of the home health care agency are covered by your insurance. If so, how much of the cost will you have to pay? If the services are not covered by your insurance, find out what the cost will be to you and whether the cost can be negotiated to be less.
 
You will have a say about which home health care agency you use, but your choices may be limited by agency availability or a factor such as Medicare rules. Some hospitals have their own home health care agency, but this does not mean you have to choose the hospital's agency.

As you research home health care agencies, note the following information about each agency:

  • The name, address and phone number of the agency
  • Whether the agency has Medicare certification
  • Type of ownership, such as for-profit, nonprofit or government
  • Information from state or federal surveys, such as how well the home health care agencies provide care for their patients
  • Services offered by the agency, such as nursing care, physical therapy, occupational therapy, speech-language pathology, medical/social services and home health aide

Comparing the quality of care provided by home health care agencies

Home health care agencies are certified to make certain they meet federal health and safety requirements. You can get information about home health agencies and the results of their quality measures from a Medicare agency. In some cases, a local ombudsman, who can be contacted through your local agency on aging, may have information on quality care measures of home health agencies in your area. 

Quality care means doing the right thing, at the right time and in the right way to obtain the best possible results for the patient. Quality care measures give you information about how well home health agencies provide care for patients. The quality care measures include information about the physical and mental health of patients, and whether the patient's ability to perform basic daily activities improved while under the program's care. Patients are monitored for quality measures in areas such as:

  • Improvement in mobility (ability to move around the home)
  • Patient medical emergencies
  • Improvement in mental health
  • Ability to perform ADLs, such as bathing, dressing, eating, using the bathroom

The home health care agency staff is responsible for developing a care plan that is written specific to your needs. You and your loved ones have a right to participate in planning your care and discussing your treatment options. Your doctor is kept informed by agency staff on how you are doing.

Care plans are developed for individuals as part of the case management process. These written plans outline all of the services and caregiving arrangements that are needed to help the individual achieve the best quality of life possible. A multi-disciplinary team (that may include family members, nurses, dieticians, doctors, therapists, activities and social services professionals) defines timeframes and specific care services to be provided.

Your care plan is periodically reviewed by the home care team and adjustments are made to the care plan as needed to reflect your current needs. Home health care staff cannot make changes to the care plan your doctor has ordered without the doctor's knowledge and permission.

Home health care agencies are responsible for:

  • Screening and training the health care workers
  • Providing workers who meet licensing requirements and qualifications
  • Providing workers compensation insurance if this is required in your state
  • Supervising its health care workers
  • Providing an insurance bond at an extra cost to repay you in case of theft

For assistance finding a home health care agency, ask your doctor, hospital discharge planner or social worker what they know about various service providers in your area. Friends and family may also have information to share about their home health care experiences. Referral services may also be provided by a cancer organization or local community service agencies.


How can a survivor pay for home health care?

Home health care services can be costly. Some home-based services may be partially covered by private medical and disability insurance policies. However, home health care on a long-term basis may have to be financed through personal funds and/or state and federal medical assistance programs, such as Medicaid and Medicare.

Medicaid is a government assistance program for people who meet certain low income requirements. Medicaid is jointly funded by the federal and state governments and operates under national and individual state guidelines. Eligibility for Medicaid varies from state to state. Some states have "medically needy" options to cover the cost of medical care for persons who would qualify for Medicaid on the basis of the services they require, but have too much income to qualify for the program and too little to pay for the needed medical services.

Medicare is a national health insurance program that pays for acute medical care services for people age 65 or older or those who have qualified for government disability benefits.

Check your insurance coverage to find out if your home health care needs will be paid for by insurance and for how long. If your policy or government program does not normally cover those needs, ask your doctor or a home health care company to negotiate for you with the insurance carrier. If it can be shown that it is less expensive to deliver the needed services to you at home rather than in a hospital, then the care might be approved.

In most cases you need to meet all of the following conditions to be eligible for insurance or Medicare-covered home health care benefits:

1. Your doctor must determine that you need medical care, and write a prescription referring you to home health care services.

2. You must need at least one of the following care services: intermittent skilled nursing care or physical therapy, speech-language therapy, or ongoing occupational therapy.

3. You may need to choose a home health agency that is certified or approved by the insurance company or assistance program. For example, the agency may need to be Medicare-certified.

4. You must meet certain requirements such as not being able to leave home unassisted or being confined to home by illness. Leaving home for medical treatment, adult day services or short, infrequent trips is allowed.

Rates for home health care are based on the level of service, individual agency rates, and the rates typically charged in the area in which the services are provided. Contact several agencies to compare services offered and rates charged before deciding to contract for services.

There may be limits on the number of hours per day and days per week that you can get skilled nursing or home health aide services. Contact your insurance company to find out specifically what home health care services are covered. If you have Medicare or Medicaid, the Centers for Medicare and Medicaid Services can provide you with information. 

If you are eligible for home health care, services such as the following are likely to be covered:

1. Skilled nursing that is performed by a registered nurse or a licensed practical nurse on a part-time or intermittent basis
2. Home health aide services on a part-time or intermittent basis
3. Physical therapy, speech-language therapy and occupational therapy for as long as the doctor says you need it
4. Medical social work services to help you with social and emotional concerns related to your illness; these services may include counseling or help in finding community resources
5. Certain medical supplies, but not prescription drugs
6. Medical equipment such as a hospital bed, wheelchair or walker

On the other hand, there may not be insurance coverage for things such as:

  • 24-hour-a-day care at home
  • Prescription drugs
  • Meals delivered to your home
  • Homemaker services such as shopping, cleaning and laundry
  • Personal care services given by home health aides such as bathing, dressing and using the bathroom when this is the only care you need

When there is a need for medical equipment in your home, your doctor should write a prescription or order for the equipment that is needed. Your discharge planner or social worker can then discuss your needs with the insurance company on your behalf to find out in advance if insurance will pay for the purchase or rental of the equipment ordered by the doctor.

If your insurance company will not automatically pay for needed home health care equipment, try taking the following steps:

1.  Compare the costs of obtaining the treatment at home to the cost of getting the care at a medical facility.

If it will cost less to provide the care in your home, speak with a supervisor at the insurance company and present the costs of each option. It is possible that the insurance company may agree to pay for the equipment.

2.  Check to see if it is possible to borrow the equipment.

An area agency on aging or another community service group may be able to assist you with finding a supplier from which you can borrow the equipment. 

3.  Compare costs to see if it is cheaper for you to rent the equipment or buy it.

When comparing the costs of renting or purchasing medical equipment, include the cost of servicing the equipment. If you rent, equipment maintenance may be free.


What if you have concerns about services provided through a home health care agency?

If you have concerns about the home health care work you are receiving, start by speaking directly with the person providing the care to let him or her know your concerns. If that does not improve the situation, speak with the home health care provider's supervisor or the agency owner. If there is still no improvement in the work, ask for a new health care worker.  Be sure to let your doctor know of any unresolved concerns or problems with the agency.

If you find that you do not feel comfortable with the home health care you receive, you can change home health care providers. A close friend or family member can speak on your behalf if you do not want to personally deal with the problem. Keep in mind that because of federal laws about health privacy, the home health care agency will need written permission to speak with someone other than you about your care.
 
If a problem with the health care provider cannot be resolved to your satisfaction, you will likely want to change agencies and/or health care workers. The following are basic guidelines for changing your home health care provider:

1. You may choose to end your relationship with one home health care agency and choose another at any time.

2. If you need to change agencies, contact your doctor to get a referral to a new home health care agency. You must notify both the agency you are leaving and the new agency of the date that the change will take effect.

3. Before you make any arrangements to change home health care agencies, be certain that the change is pre-approved by your insurance provider(s).

4. Keep in mind that you can only get care from one home health agency at a time.

Your day-to-day home health care should be supervised by you or someone you trust as well as by your medical team. If necessary, changes can be requested so that the care you receive meets your needs. As a patient of a home health agency, you have rights. A Medicare-approved facility must provide you with a written copy of your rights. 

The rights for a home health care patient include:

  • The right to choose your home health agency
  • The right to have your property treated with respect
  • The right to have your family or guardian act on your behalf
  • The right to file a complaint about your treatment or care if it is not provided appropriately or if the staff shows disrespect for you or your property
  • The right to be given a copy of your plan of care that documents the types and frequency of services
  • The right to know about the staff that the home health agency will provide

Keeping notes on the quality of home health care you receive is helpful. For example, write down the names of people providing the care, the dates they worked, how long they stayed and the quality of their services. Keep these notes in a secure place.

Most home health care agencies and their staff are honest and use accurate billing information. Unfortunately, fraud (cheating), waste or abuse may occur. Watch for possible signs, such as:

1. Home health visits that your doctor ordered, but you never received
2. Visits by home health staff that are not needed
3. Bills for services and equipment you never got
4. Forging of your signature or your doctor's signature
5. Pressure to accept items and services that you do not need

The best way to protect yourself is to know what your insurance covers and what your care plan is. If you do not understand something in your care plan, ask questions. You have a right to participate in the development of your care plan. If you suspect that something is wrong, ask your doctor, your hospital social worker, or trusted family or friends for help.

How can a survivor find and select private home health care workers?

In some cases it may be less expensive to hire a caregiver directly rather than through a home health care agency. For example, if you are not looking for skilled medical care, but need someone to act as a companion or personal aide, hiring a home health care worker on your own may be less costly. However, locating and hiring a home health care worker may also be much more complicated and time-consuming than going through an agency.

If you do decide to find your own home health care worker, be aware that you will be required to take responsibility for certain things. Carefully consider these responsibilities. For example:

  • You may have to withhold taxes as an employer for the worker.
  • You need to have a written contract with the home health care worker, particularly if he or she is going to live in your home. If the caregiver is going to live with you, it must be clear in the contract that their right to stay in your home continues only as long as that person works for you.
  • You need to be certain that the home health care worker is covered by personal liability or worker's compensation insurance so that you are covered in case there is a liability claim, such as an injury in your home.
  • You need to do background check to make certain that the health care worker you hire has no record of criminal activity or abuse. Some states have registries (many are available online) for personal care attendants and home health aides that make it easier for you to do the background check.
  • You need to have a back-up plan for care in case the worker becomes ill or unavailable at short notice.

After a potential health care provider has been identified, you will need to interview and select the home health care worker(s). Start by defining what help is needed and preparing a job description that lists the services that you want the home health care worker to provide. Design the job description as a contract that will be signed by both you and the home health care provider. Include the full names of you and the health care worker, a list of duties and responsibilities of the worker, wages and benefits that will be paid, work and vacation schedules, and any other information that you think is important.

Interview potential health care workers in your home where there is an opportunity for the caregiver to become acquainted with you and any family members. The interview and selection process should be a time for an open and honest discussion between you and the health care provider. This is the time to ask questions and to cover all topics that are of concern to you. Ask the caregiver how he or she would respond in specific situations and request that they provide examples from past experience that show how they solve problems.

When selecting a private home health care worker:

1. Find out if the home health care worker listens and communicates well.
2. Find out if the caregiver can perform all of the tasks defined in the job description you developed for the position.
3. Make certain that you and the home health care worker feel comfortable with one another and in your home.
4. Discuss the best ways to communicate with you and any family members.
5. Familiarize the home health care worker with special medical equipment that will be used.
6. Discuss any special needs and procedures that may be necessary in an emergency.
7. Share specific information about your disability.
8. Discuss any factors in the home, such as pets, that may be an issue for the home health care worker.

Before the selecting a home health care provider, be certain he or she is:

  • in good overall health
  • physically able to perform the duties of the job
  • cleared by professional references and a background check with no history of abuse or neglect
  • able to provide proof of a valid driver's license or state identification card and Social Security card (for W-2 or W-3 form and I-9 form)

Make it clear to the home health care provider that you will not tolerate abuse, neglect, chronic tardiness, absenteeism or failure to perform assigned duties. Discussing a set of rules and job requirements is important before signing an employment agreement.

Other ways to find home health care providers:

Home health care registries are independent contractors that provide services at prices that are usually lower than home health care agencies. They operate somewhat like an employment agency in that they screen, interview and do reference checks on home health care workers that are referred. Be sure that any agency you select can provide the caregivers you need.

Some states and counties offer home health care services to people who are disabled or to family caregivers. An application for assistance is reviewed and evaluated by need. If you qualify for program services, home health care aides may be provided.

Finally, some families elect to set up formal caregiver contracts (also called personal service or personal-care agreements) to hire a family member to provide care services. These legal contracts name the specific services to be performed, the rate of pay to be provided the caregiver and when it will be paid, such as in one lump sum or in regular payments. Talk with an attorney who specializes in this area to receive guidance if you decide to set up such a contract. There is also information on caregiving contracts and related matters available online, such as through the National Academy of Elder Law Attorneys.

In some cases, it may be possible to use a long-term care insurance policy to pay family members who provide the caregiving services. Some government programs (such as a state Medicaid "Cash and Counseling" program) provide funding to pay family members for "consumer-directed care." Local agencies on aging or departments of social services may be able to provide more information on government funding.

The ultimate goal of home health care is to make it possible to remain in your home in a safe and comfortable environment while enjoying a better quality of life. Although you may go through a period of adjustment to a new care routine, it is important that you feel safe and satisfied and that you are receiving a high standard of care.


This document was produced in collaboration with:

David S. Landay, Esq., author of Be Prepared: The Complete Financial, Legal and Practical Guide for Living with Cancer, HIV and Other Life-Challenging Conditions.

Works cited:

"Accessing Home Health Care." Leukemia-Lymphoma.org. The Leukemia & Lymphoma Society. White Plains, NY. 9 February 2005.
www.leukemia-lymphoma.org

"Guide to Interviewing a Caregiver, Tips for Hiring a Caregiver and A Home Healthcare Planner." Respite Match.com, Home Healthcare Solutions. Rex, GA. 8 August 2006.
www.respitematch.com

Landay, David S. Be Prepared: The Complete Financial, Legal and Practical Guide to Living with Cancer, HIV and Other Life-Challenging Conditions. New York: St. Martin's Press, 1998.

McFarlane, Rodger, and Philip Bashe. The Complete Bedside Companion. New York: Simon and Schuster, 1998.

Silverman, Rachel Emma. "Who Will Mind Mom? Check Her Contract: Seniors Turn to Written Agreements to Compensate Relatives as Caregivers; Reducing Estate Size." The Wall Street Journal, 7 September 2006: D1-D2.

U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services. Publication 10969: Medicare and Home Health Care and Home Health Compare. Baltimore, MD. August 2004.

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Home Health Care: Suggestions

 

The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Additional Resources document for links to more resources.

1.  When considering whether you need home health care:

  • Make a list of the advantages and disadvantages of using home health care if you are not sure whether you want to continue to live on your own after treatment. Discuss your concerns with your family, friends, health care team or social worker if you would like their help in making this decision.
  • Talk to your health care team or social worker about home health care services that might help you to continue to live in your current home.

2.  If you plan to hire through a home health care agency:

  • Contact your health insurance company to find out exactly what home health care services are covered by your policy.
  • Contact one of the national organizations that oversee home health care agencies and workers to find out more about home health care providers. The National Association for Home Health Care (NAHC) and the NAHC's Home Health Care/Hospice Agency Locator provide resources to find agencies in specific areas of the country. Your state and local health departments may also have a registry of licensed home health care agencies in your community.

Other resources of information about state and local social service programs that may assist with costs for home health care services include the Department of Veteran Affairs and the State Health Insurance Assistance Program (SHIP).

  • Consider the following questions if you are in the process of selecting a home health care agency:
  • Is the agency certified by Medicare or Medicaid?
  • Does the agency offer the specific health care services you need?
  • Does the agency meet any special needs, such as language or cultural preference?
  • Are personal care services you need offered, such as help bathing, dressing and toileting?
  • Are needed support services offered, such as help with laundry, cooking, shopping or housekeeping?
  • Is there staff available to provide the type and hours of care your doctor ordered?
  • Can the agency start services when you need them?
  • Is the agency recommended by your hospital discharge planner, doctor or social worker?
  • Is someone available at night and on weekends for emergencies?
  • Has someone explained what services will be covered by insurance, and how much you must pay on your own?
  • Have background checks been done on all staff?
  • Are there positive written references about the staff and care from satisfied patients, family members and doctors?
  • Consider the following questions about your satisfaction with your home health care agency:
  • Does the agency staff treat you and your loved ones with respect?
  • Does the agency staff allow you and your loved ones to participate in creating the plan of care?
  • Does the agency staff let you know about changes in the plan of care?
  • Are the agency staff trained and licensed to perform the type of health care you need?
  • Has the agency explained what to do if you have a problem with the staff or the care you are getting?
  • Does the agency respond quickly to your needs and requests?
  • Does the staff check your physical and emotional status at each visit?
  • Does the staff respond quickly to changes in your health or behavior?
  • Is the staff concerned about your special needs and changes that should be made in your home to better meet your needs?
  • Has the staff told you what to do if you have an emergency?
  • Is your privacy protected?
  • Do you feel safe and comfortable with the care you are receiving?
  • If you have concerns about the home health care services you are receiving:

Ask yourself the following questions if you suspect fraud, waste or abuse in the way home health care services are being provided:

  • Are there home health care services that your doctor ordered, but you never received?
  • Are there visits by home health staff that are not needed?
  • Are there bills for services and equipment you never got?
  • Have you noticed the forging of your signature or your doctor's signature?
  • Has there been pressure to accept items and services that you do not need?
  • Are items listed on your invoices that you do not think you received?
  • Are you confident about the skills and abilities of your health care workers?
  • Are you concerned about your safety and well-being?
  • Have you noticed any items or personal belongings missing from your home?
  • If there is a need to change home health care agencies, you should:
  • Contact your doctor to get a referral to a new home health care agency.
  • Notify both the agency you are leaving and the new agency of the date that the change will take effect.
  • Be certain that a change in home health care agencies is pre-approved by your insurance provider before you make any arrangements to proceed with the change. Keep in mind that you can only get care from one home health agency at a time.

4.  If you plan to hire home health care workers on your own:

  • Understand the legal requirements you will have as an employer, including:
  • Insurance: Verify that your homeowner's or renter's insurance policy covers household employees in case of an accident. If your policy does not cover workers in your home, look into purchasing a worker's compensation policy to cover your employees.
  • Taxes: Be fully informed about any legal responsibility to pay taxes for household employees, including reporting the worker's wages and tax liabilities on his or her yearly 1040 form.
  • Social Security Tax: An employer is required to withhold Social Security taxes and file them with the Internal Revenue Service (IRS) every year.
  • W-2 or W-3 form: The appropriate form must be filed with the IRS at the end of each year and a copy must be sent to the employee.
  • Employment eligibility verification form I-9: Each employee must complete this form, and a record must be kept on file with the employer to prove that the employee has the right to work in the United States.
  • Develop a job description before interviewing prospective home health care providers on your own. The job description that you write can be used as a work contract that is signed by both you and the home health care provider.

Include information in your job description, such as:

  • Names of the responsible people including the employer (you) and the health caregivers
  • Wages, benefits, mileage, meals to be paid
  • How and when payments will be made
  • Work schedule including hours, days off, holidays
  • Caregiver's social security number
  • Job duties
  • Specific behaviors that are not allowed, such as smoking, consuming alcohol or other substances
  • Reasons for termination without notice
  • Requirements for giving notice to quit the job
  • Signatures and date the document is signed
  • Ask questions such as the following when interviewing prospective private home health care workers:
  • What is your experience in the health care field and where did you previously work?
  • What specific skills and training do you have?
  • How do you handle difficult situations?
  • Do you have transportation?
  • Are you physically able to transfer someone from one place to another?
  • Are there any tasks listed in the job description that you are uncomfortable performing?
  • Can you provide personal and work-related references?
  • Define your rules for employment and clearly discuss important matters with the health care worker, such as:
  • How much notice you and the caregiver must give before ending your employment agreement
  • When you have the right to end the employment agreement
  • What behaviors are unacceptable to you, such as tardiness, poor attitude, personal problems interfering with the job performance and borrowing money
  • When you expect the caregiver to work including the days per week, number of hours, the schedule with start and end times, length and frequency of breaks

If you are interested in setting up a formal caregiver contract to hire a family member to provide home health care services, seek legal guidance from an attorney and/or professional organization, such as the National Academy of Elder Law Attorneys (naela.com), about how to correctly set up the arrangement.

Look into the possibility that some government programs (such as a state Medicaid "Cash and Counseling" program) may provide funding to pay family members for "consumer-directed care." Local agencies on aging or departments of social services may be able to provide more information on government funding. 

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Home Health Care: Additional Resources

 

The resources listed below provide more detailed information and support services to help you with home health care.  Please read the Detailed Information and Suggestions document for more information and questions to ask.

Click a resource for more information:

Eldercare Locator: Connecting You to Community Services
www.eldercare.gov
 

Email:  eldercarelocator@spherix.com 
Phone:  1-800-677-1116 
  Calls are answered by Information Specialists from Monday-Friday, 9:00 a.m. to 8:00 p.m. EST. Voicemail is available after hours. Translators are available for 150 languages. 

The Eldercare Locator is a free national service of the U.S. Administration on Aging, U.S. Department of Health and Human Services.  It provides a connection to resources that enable older persons to live independently in their communities.  The Web site lists phone numbers for state and local Area Agencies on Aging that serve older adults and their caregivers. People of all ages can use this resource to find in-home care.

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Legal Services Corporation
www.lsc.gov

 

Email:  Send email through the Web site. 
Phone:  (202) 295-1500 

The Legal Services Corporation is a nonprofit organization that helps low-income individuals and families find free or affordable legal services. From the Web site, you can find contact information and eligibility rules for legal aid services in your county or state. Some of the state Web sites also include information about a variety of legal topics, including wills and estates, employment or housing discrimination, family law, public benefits, elder law, health care and disability rights.

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LIVESTRONG SurvivorCare Program
www.livestrong.org/survivorcare

 

Email:  Send email through the Web site.
Phone:  1-866-235-7205 
  Case managers take calls Monday through Friday, 9:00 a.m. to 5:00 p.m. (EST). Voicemail is available after hours. 

LIVESTRONG SurvivorCare offers assistance to all cancer survivors, including the person diagnosed, caregivers, family and friends. The program provides education, information about treatment options and new treatments in development, counseling services and assistance with financial, employment or insurance issues. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations, including CancerCare, Patient Advocate Foundation and EmergingMed.

The LIVESTRONG Survivorship Notebook is a tool that can help you organize and guide your cancer experience. The portable, three-ring binder contains a variety of information covering a full range of physical, emotional and practical survivorship topics. You may order a free LIVESTRONG Survivorship Notebook at www.livestrong.org/notebook. Shipping and handling charges will apply.

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Medicare.gov
www.medicare.gov

 

Phone:  1-800-MEDICARE (1-800-633-4273) 
  Calls are answered 24 hours a day, seven days a week. Spanish-speaking customer service representatives are available. 


Medicare.gov is the official U.S. government Web site for people with Medicare. In addition to information about Medicare eligibility and benefits, the site has publications about choosing a nursing or assisted living home, long-term care planning, home health care, alternatives to nursing homes, and more. A search tool allows you to find nursing home, home health care and physical therapy services in your area. In addition, links are provided to state resources for home health care and nursing/assisted living home information. Some information on the Web site is available in Spanish.

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National Association of Professional Geriatric Care Managers, Inc.
www.caremanager.org

 

Phone:  (520) 881-8008 
  Calls are answered Monday through Friday, from 8:00 a.m. to 4:30 p.m. (MST). 

The National Association of Professional Geriatric Care Managers is an organization of nurses, social workers, gerontologists, psychologists and other professionals who specialize in the field of elder care. Through this Web site, you can find a private geriatric care manager in your area, learn more about the services a geriatric care manager can provide, and find additional care management resources, such as government agencies, national organizations and community services. You can also order brochures and books related to caregiving issues.

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Quality Check
www.qualitycheck.org

 

Email:  Send email through the Web site. 
Phone:  (630) 792-5800 

Through this Web site, you can check the Quality Reports on nearly 15,000 long-term care facilities, home care agencies, hospitals and other organizations across the nation that are accredited by the Joint Commission. You can search by facility name, zip code or city and state. These reports include the organization's accreditation decision, information about the facility's services, and compliance with the Joint Commission's National Patient Safety Goals.  The site also has information about how to read these reports and understand what qualities are being rated.

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