2 This guide is intended to answer some of the questions you may have about working with nurses in your home to meet your own or your family member s special health care needs. It is not intended to be a legal document and it is not binding on the nursing agency, The Coordinating Center or the program that is paying for care in the home. The questions we have selected may help you to better understand what you can expect when you work in partnership with home care nurses and other health care professionals in your home. In the following pages, you will learn more about the roles of home nurses, home health agencies and primary care providers as well as more about your rights and responsibilities in home care. As you read, you will notice that Medical Assistance and Medicaid are used interchangeably to refer to the publicly funded health insurance program; HealthChoice is a program of Maryland Medical Assistance that provides health coverage through state certified managed care organizations. Other terms that are used interchangeably are primary care provider and primary physician; this is the principal doctor whom you have chosen to work with you to manage your care or your family member s care.
3 What is the first step? When the primary care provider caring for you or your family member believes that home nursing is necessary, then that physician will write orders for nursing services. What happens next? If you or your family member is in the hospital when the referral is made for nursing services, you can work with the discharge planner to find out if you are eligible for benefits to pay for nursing either through publicly funded programs or through your private insurance or managed care plan. Publicly funded programs are government programs funded through Medical Assistance (Medicaid) such as the Model Waiver, or the Rare and Expensive case management program (REM). Not all public programs, and certainly not all private insurance plans, pay for home nursing. Even though the physician makes a referral for this service, there is no guarantee that it will be approved or funded. Assuming that there is a way to fund nursing, how do I go about locating and hiring nurses? Most likely, you will work through home health agencies that employ nursing professionals to work in private homes. You may also work with a care management organization, such as The Coordinating Center, to assist you through the process. What is a care management organization? This is an organization that specializes in helping people to find and manage the services that are necessary for specialized care. The Coordinating Center is such an organization. At The Center, care managers locate, coordinate and monitor the services that you need in partnership with you. They assist you to locate services that you or your family member will need at home and will help you through the process required by the program in which you are participating. At The Center, staff members who provide care management services are Clinical Care Coordinators and are referred to throughout this booklet as Coordinators. Coordinators are not employees of the state or managed care organizations; they are associated with
4 The Coordinating Center, which is a not for profit, private organization. What are home health agencies? Home health agencies are full service companies that provide nursing services and may also offer the services of therapists (speech, physical and occupational), medical social workers, and home health aides. Can I choose any home health agency? That depends on the plan or program that is paying for the nursing in your home. If you or your family member is receiving services paid for by Medical Assistance, then the nursing agency like all providers must be a provider that participates with Medicaid. Likewise, if your insurance company or managed care organization is the primary payer for this service, you will want to select those agencies that participate in the insurance company s network of providers. What questions should I ask in such an interview? There are several things you may want to ask about, including... Does the agency have recent experience in hiring nurses to care for people with special health needs? How about children with special health care needs? How many children have the agency nurses cared for in the past year? How many people with needs similar to my family member s or mine? How long has the agency been in business? Does the agency advertise for qualified nurses? What other ways does the agency have to find nurses? Will the agency send nurses to the hospital to learn about my or my family member s needs? How often will the supervisor visit my home? Will the visits be done regularly, like once a month? How do I choose an agency? Your Coordinator can give you lists of agencies that are providers to Maryland Medical Assistance. The Coordinator can assist you to locate agencies that are providers to your managed care or insurance plan. Then you can contact the agencies that look like possibilities for your family and ask a representative to come to your home for an interview. Can I call the supervisor and speak to that person? Will that person be easy for me to reach most of the time? Will the agency make sure that the nurses' training is up to date? How will I know?
5 If care needs change, will the nurses be trained on those changes What about paperwork? Does the agency do the paperwork that is required by the insurance company or the program in which we are participating? How do I reach someone at the agency in an emergency? Does the agency have other services like physical and occupational therapies? What does the agency do when the nurse is not able to work? Will they call me? Will they try to get another nurse? How often will I receive a schedule of nurses? And how soon in advance will I know if there are vacancies in the schedule? What is the agency policy about confidentiality? Will the nurses respect my privacy and not talk to others about my family or me? How will the agency handle my complaints? Can I see a copy of my rights and responsibilities? What should I expect from a home health agency? You can expect that the home health agency will offer you a variety of services, including... Staffing your home with personnel for the prescribed hours and level of care that the physician has ordered and for which there is authorization. Maintaining contact with you or your family member's primary care provider Recruiting qualified nurses Training nurses in your family member's special needs--before and after discharge from the hospital Making sure that the nurses working in your home have the appropriate credentials and necessary experience to work with you Supervising the nurses working in your home Giving you an advance schedule on a regular basis Filling open times in your schedule as much as possible Doing the paperwork that is needed by the insurance company or other program Ensuring that up-to-date physician s orders are kept in your home Developing and periodically updating a nursing care plan Maintaining accurate medication administration sheets Maintaining written daily nurses notes in your home What is the level of care? The level of care refers to the type of nursing professional that you or your family member will need.
6 The levels that are often needed for a person with complicated care is the Registered Nurse (RN) or the Licensed Practical Nurse (LPN). The RN and the LPN are licensed by the state Board of Nursing Examiners. A Certified Nursing Assistant (CNA) or a Home Health Aide (HHA) may also be prescribed, based on medical needs. There are regulations, written into the state's Nurse Practice Act, that list the tasks that only RNs or LPNs can do versus the things that home health aides can do. It also distinguishes between tasks that are performed by RNs versus LPNs. A home health aide always works under the general supervision of the RN, even though that nurse is not always right there, in your home on a daily basis. What is the difference between licensed and unlicensed care? Individuals who are licensed are professionals who have met the educational and practice requirements for their professions. The requirements are set by law or regulation. Also, they have passed required tests to demonstrate their skill and knowledge in the profession. For example, the Board of Nursing Examiners is responsible for setting the requirements for nurses who wish to practice in Maryland. Physicians, registered nurses and licensed practical nurses are all licensed professionals. Certified nursing assistants, home health aides, personal case providers and persons in related occupations are not licensed. Who decides the level of care? This is a decision that involves you and others who provide care. Medical needs, including the specific types of medical tasks, or interventions, are the main things that play into the decision about level of care. What do you mean by prescribed hours? These are the hours of nursing care that are ordered by the primary care provider. Like the level of care, the number of hours is based on medical needs and planned interventions. What does the nursing supervisor do? This person is your main contact at the nursing agency. The supervisor explains the agency policies for you and works with you to find solutions to problems that may arise. You should tell this person, as well as your Coordinating Center Coordinator, when you have questions and concerns. The nursing supervisor is also there to help the home nurses to do a good job. That person will help the primary nurse in your home write the nursing care
7 plan, for example. The supervisor is also responsible for making sure that the needed paperwork, like the physician's orders, are up to date and maintained in your home. How are the individual nurses who will work in my home selected? The agency recruits and suggests nurses to work in your home. However, you have the right to interview nurses ahead of time. You also have the right to see the nurse's work history and proof of training in the skills you require. Can any nurse work with my family member or me? Nurses have different kinds of training and have worked in different situations. You will want to ask about that when you talk about recent work history. Not every nurse will be trained in caring for people with specific health care needs. Also, not everyone will have worked with children with special needs working with adults does not always easily translate to working with children. What credentials should I ask about? Nurses who will be hired to help care for you or your family member should have the following: State license Resume that shows where and when they have worked Proof of malpractice insurance CPR certification After I choose an agency, is there a contract for me to sign? Yes. The contract lists the agency's obligations and yours, too. Be sure to read the contract before you sign it. And, before you sign the contract, make sure the agency has agreed to accept your insurance, and/or is a participating provider with Medical Assistance. What if I decide to stop working with one agency and switch to another? You may certainly do that. But you should give the agency notice. Two weeks' notice is usual. Can the nurses move to the new agency and continue working with us? Agencies often have employment agreements with the nurses that make such changes difficult. But you can sometimes negotiate with the agency when this situation arises. How are nurses scheduled? The scheduling coordinator at the agency is responsible for the schedule. You should know the name of the scheduling coordinator. That person is your main contact with the agency regarding hours and nurses filling those hours.
8 You should get a written schedule with the names of the nurses and the times when they will care for you or your family member. You can expect a twoweek schedule at first, and a monthly schedule after that. Do I have any say in the times when the nurses are scheduled? Yes, there is some flexibility. The nursing hours that are prescribed are done so to cover a specific need, such as to provide an awake caregiver at night, for example. Although, you may be able to determine the specific time frame. Who decides how many hours of nursing we will receive? This is a team decision that involves the primary care provider, the payer, and yourself or the primary caregiver. Keep in mind that the reason for having nursing at home is to meet a medical need. Therefore, questions about medical need will be asked in the process of deciding if nursing is needed and how many hours are needed. For example, Is it necessary for someone to be awake and alert through the night? Is suctioning necessary on a frequent basis? Are there continuous feedings through a tube, with risk for aspiration? The answers to these and other similar questions about you or your family member's special needs will help to decide the number of hours nurses will work. Another issue that is considered is called the community standard. This means that there is general agreement in the community regarding the typical number of hours that someone with certain care needs usually requires. A third consideration, and an important one, is the limits of the plan or program that is funding care at home. Will hours ever be reduced? The number of hours are linked to medical needs. If those needs are not as great, the nursing hours will be reduced. In addition, as family caregivers become more comfortable, you can expect that the hours of nursing will be reduced. Is there ever a time when the hours can be increased? Hours of nursing can be increased only when the person s medical condition becomes significantly worse and may require additional skilled treatment. In any case, there can be no increase in hours without revised physician's orders and pre-authorization. Should I plan for decreases in nursing hours?
9 Yes. Keep in mind that the nurses are in your home to help care for people who have specific, skilled medical needs. If the person is your child, or someone for whom you are responsible, then you, as primary caregiver have the responsibility for providing care or making sure that appropriate care is provided. Your Coordinating Center coordinator can help you to make plans that make sense for you and your family. What is shift nursing? This is a number of hours -- usually the same each day -- that are spent giving nursing care. Home care shifts can vary, usually between 4 16 hours. Shift nursing is prescribed by a primary care provider when it is clear that the person has skilled needs that a nurse will have to provide on a consistent basis. What is intermittent nursing? This is actually one visit or a series of visits by a nurse to the home. Each visit lasts from about one to four hours. The visits are different from shift nursing because they don't always happen everyday or at the same time every day. The nurse who visits intermittently can keep track of your medical progress, will take vital signs and judge how you or your family member is doing. These nurses often come to your home to do specific tasks or procedures, and they can teach family members to do some of those tasks as well. This type of nursing help makes the most sense when a person's needs are not as great, when shift nursing has been decreased or has stopped altogether. Do nurses ever cancel? Yes. Nurses can become suddenly ill, just like the rest of us. Snow and bad weather may mean that the nurse can't get to your home. Holidays are especially hard times for home health agencies to find nurses who are able to work. You will have to be prepared with a reasonable back up plan. Your Coordinating Center Coordinator can help you make such a plan. What if the nurse leaves my home and no other trained person is on the premises?
10 This is called abandonment and it is illegal. If the nurse must leave in an emergency, then he/she is obligated to call the agency for backup and to call you to return home so that you can resort to your emergency or back up plan. This means that you, as the primary caregiver, must be able to be reached at all times. It also means that you must be in your home at an agreed upon time, so as not to inconvenience the nurse or use more than the authorized hours. If you are not home or available at the end of a shift, this may also be considered to be abandonment on your part. What happens to missed shifts? Can I use them at any other times? Generally, no funder or program will pay for hours that were not filled at the specified time. In other words, hours can't be saved for a rainy day. However, if you miss a night shift and must stay awake all night to provide care, you may be able to obtain nursing the next day so that you can sleep. What do I do when the nurse does not arrive as expected? You should alert your scheduling coordinator at the nursing agency. Sometimes, the agency will be able to find someone to cover the hours for you. But this person may be someone you don't know and you will have to decide if that plan will work for you. Refer to the plan that you have already developed as your back up plan. Usually, this means that you have picked a friend or family member who will be willing to learn the caregiving skills and to be available to you when the nurse is unable to come and you can't stay home. If the problem continues, contact your Coordinator at The Center to ask for assistance in working out the problem or looking at other options. Are nurses paid more for holiday hours? This depends on the home health agency policy. But neither the agency nor the nurse is allowed to ask you for additional money to work on holidays. What about overtime? Nurses may work overtime, but they follow the Fair Labor Laws just like other workers, which means that they can work only a set number of hours in a day and must have time to rest. Some insurance or managed care plans will pay for overtime, but that is not the case with publicly funded programs. How many hours can a nurse work in a day?
11 In a 24-hour period, you can expect that a nurse can work from eight to about twelve scheduled hours. Do all insurance companies pay for shift nursing? No. You should read your policy and talk to your benefits manager or case manager. Some companies will pay for home nursing for a short period of time after a hospitalization. Some companies will only pay for intermittent visits. And others won't pay for nursing at all. What records should I keep in my home? You will probably want to keep on hand the following: The Coordinating Center plan of care and emergency protocols The home health agency s nursing care plan Medication lists Nurses' notes Physician s orders Reports from therapists Evaluations Records of home visits Is there a way for me to get my insurance plan to pay for shift nursing, even when it is not spelled out in the policy? Sometimes you can negotiate for nursing hours by giving up a benefit or by trading another benefit for home nursing. For example, if your insurance plan includes benefits for a skilled nursing facility stay, then the plan may convert this benefit to pay for home care for the same amount of time, or for the same number of dollars that would have been spent on the hospital stay. What paperwork does the insurance company require? Usually, nurses notes, physician's orders, the nursing care plans and time sheets are required. The reason these things are needed is that the agency has to be able to prove that you or your family member needs the care that is being provided and that the care was provided as ordered. Aren't the nursing care plan and the plan of care the same things? The nursing care plan is a list of tasks that nurses must do for you or your family member on an every day, or even every hour basis. These tasks are directly related to medical care needs. The plan should also clearly state things that are specific, such as noting allergies, or stating which type of trach tie should be used. The nursing care plan is updated, usually by the primary nurse in your home and the nursing supervisor, on a regularly scheduled basis, or at the time when needs change.
12 The Coordinating Center Plan of Care, on the other hand, is a more general description of all services or items like equipment and supplies, medications, therapies, clinic visits and other services that you or your family member will need over a specified time period. What are nurses' notes? Also called progress notes, these are the written records of all the tasks the nurses performed for you or your family member during a shift. Nurse s notes are like a diary of the day and show how you or your family member reacts to interventions and how progress is made over time. It is important for the tasks listed in the plan of care to be included in the nurses' notes as well as an indication that what was ordered was actually received. the nurse is working with you or your family member. Anything else about the nurses' notes? As long as you are in a business relationship with the agency, the notes should always be kept with you or your family member. You may want to take the notes to physician visits or to any meetings that are held on your behalf. To whom do the notes belong? They are legally the property of the nursing agency. What is the emergency protocol? A protocol is a plan of action. This one is a written description of signs and symptoms that indicate a medical emergency, as well as a plan of action. The protocol is written by the primary care provider. For example, fever and frequent vomiting could be the signs that your family member needs emergency medical help right away. The steps you take could include calling the physician, or dialing 911. Other things you might expect to see in the notes are mentions of visits from other health professionals and summaries of phone calls related to you or your family member s care. Personal comments or opinions about family life should not appear in the notes. At the very least, the nurse should write notes every two hours. They should be written in your home, when Where should I keep the protocol?
13 Keep this protocol handy and easily visible so that everyone responds the same way in an emergency. Why are physician's orders kept in my home? The orders are your primary care provider s written instructions. Orders are likely to include the medicines dosages, treatments and times, as well as tasks for the nurses. Nurses cannot work in your home without orders to do so. When are orders changed? When there is a change in your medical situation that requires different interventions, or changes in treatment or medications, new orders are necessary. Who can record changes in orders? Licensed nurses may accept changes in orders over the telephone. This is called a verbal order. The physician must sign this order at a later date. You, as the individual or caregiver, can take the changes over the phone. But for efficiency s sake, it may be a better idea for the nurse to take the order over the phone. If you take the order change, then the nurse has to call the physician back to confirm and will have to obtain the physician s signature on the change order form. This process is part of the set of regulations that nurses must follow. Are order changes written on a special form? Most home health agencies have a separate form for order changes or single orders. These are different from the list of orders that include all the medicines, treatments and nursing hours that are used on a regular basis. Orders for treatments that are given on a regular basis are called standing orders. Single orders should be added to the next set of standing orders. Is there a time limit on standing orders? The standing orders are valid for a certain period of time, typically 60 days. After that, they have to be rewritten with updates and signed by the primary care provider. What about time sheets? Time sheets are forms that verify that nurses have worked and should be paid. Usually, both the nurse and the responsible person in the home sign the sheets. When you sign these sheets, you are agreeing that the times written are the times that the nurse actually worked in your home. You should not sign sheets that are not correct or are different from what you remember. Keep in mind that if you sign time sheets that are not correct and the nursing agency receives money for hours that are not worked, then you might be involved in a potentially fraudulent situation.
14 In this situation, what is considered to be fraud? When people who receive benefits misrepresent the facts to receive those benefits, then they are committing fraud. People who defraud the program that is paying for medical care run the risk of losing the program and of having to pay back the money, as well as additional fees. Professionals who participate in fraud run the risk of losing their licenses and paying other penalties as well. What is the medication record? This form shows the name of the medicine that is to be given, the amount of the dose and the times it is to be given. The spaces on the form are there so that the nurse can check that the medicine was given and by whom. What if parents of children give the medicine instead of the nurse? That's okay. You, as the parent, are not required to fill in the form to show that you gave the medicine. But, it is a good idea to do it anyway. Then, there is an accurate record that can be helpful in answering doctors' questions if your family member becomes ill. The same is true if you, as an adult, take your medication on your own. Where are such documents kept? And how do we communicate with each other? Often, the home health agency will bring into your home a folder or a three-ring binder to hold documents in a central place. Sometimes, the nurses themselves will share a notebook with informal notes to each other about little things they do for you or your family member. You can also use a notebook or put signs on the walls of you or your family member's room as reminders. What happens during rehospitalizations or emergency room visits? When your family member is in the emergency room or admitted to the hospital, then home nursing will stop. At that point, the hospital nurses will be responsible for the care of your family member. You should alert your home health nursing agency and your Coordinator at The Center. Remember, if the nurse goes to the hospital with your family member, the shift ends as soon as the hospital staff begins care. What do I do to start nursing again? That depends on the length of time of
15 the hospitalization. If it is only for a few days, it is likely that not much will change -- although you will have new orders in the home. If it is for a longer period of time, you will want to keep in touch with the home health agency and your Coordinator at The Center to let them know what the plans are. Sometimes the whole process may have to start again as nurses may be assigned to work with others while your family member is in the hospital. It may be that equipment or medications will change. Again, the Center s Coordinator can help you with these concerns. If I am the primary caregiver, may I leave the home when the nurse is there? Yes. But... you must have a plan for the nurse to be able to reach you. The nurse should have phone numbers handy where you can be reached, phone numbers where your back-up caregiver can be reached, and a copy of your schedule. Some people carry pagers or portable phones and make a point of calling home periodically when they are away from home. If the nurse is qualified, why do I always have to be available? If you are the parent or primary caregiver, you are the person who is always responsible for the well-being of your family member. There are times, particularly in emergencies, when only you can make decisions. Can the nurse go to the clinic or physician's appointments with me or my family member? Yes. In fact, that may be a good idea because it allows the nurse to hear the updates and to get changes in orders. But, you are the person who will give and receive most of the information about yourself or your family member. You are the person to make the decisions as well. Can the nurse take my child or family member to the physician without me? Maybe. But the nurse cannot be the driver. It is the nurse s responsibility to provide the nursing care. But if you are the responsible person, you must still be available to make decisions. Can the nurse drive my family member to appointments? If you or your family member will be driven to the clinic visit, the nurse is not the person to drive. One person should drive and the other person, ideally the nurse, should care for the person with medical needs. If for some reason the nurse does drive, he/she may not be paid for that period of time.
16 Can the nurse take my family member on outings? My child out to play? Again, the answer is maybe. The principle is that the nurse is present in your home to provide medical care. Whenever your family member is taken out of the home, whoever is with that person will have to take additional supplies, emergency supplies and all of the equipment that the person typically needs at home. This is true even of short walks to the playground. The transportation rules, explained above, apply as well. What about family vacations? There are several things you will want to consider, in addition to issues about driving. If you are planning to fly or take public transportation, you will want to check ahead with the airlines, particularly if you or your family member will need oxygen en route. Staying in hotels and motels is a little easier than it used to be, but it is still a good idea to check ahead if you or your family member has issues with accessibility. to check with the program that is funding the nursing services to be sure that services delivered out of state are covered. Nurses who practice in other states besides your home state will also have to obtain a temporary license from the locality you are visiting. How about leaving my family member with a nurse at home, or with a respite care nurse? There are several considerations. The program that is funding the care will not pay for extra hours that are related to your absence for vacations or other trips. You can use respite care programs, but they are very limited and not always available. The primary issue is having enough people on hand to ensure your family member s safety. This means that you will want to make sure that there is easily available an individual responsible for making decisions in your absence should an emergency arise. You may want to ask a family member or close friend who knows your or your family member s care to be on hand. And you will want to be sure that your wishes are in writing before you leave. What should I have in my home for the nurses? Some items you may want to consider If you are planning to include the home nurse in your vacation plans, you need A telephone or alternative means of communicating from the home, especially in emergencies, is a must. A comfortable chair is always welcome.
17 A bulletin board to let all the nurses know about changes or just to let them know the latest news, as well as a notebook are helpful to them and to you as a way to keep everyone updated. Paper towels or clean hand towels along with soap for handwashing and infection control A calendar is another item that is helpful for both of you to keep track of clinic visits and visits from therapists. A clock is a good idea for everyone to be sure that medicines and treatments are given on time. A television set is certainly not a necessity, and may not be a good idea unless it is tuned to shows that you think are good ones for your family member to watch and enjoy. Also, because nurses do not sleep while they are caring for your family member, do not provide a bed or separate room. Do I provide rides, meals or other conveniences for the nurses? No. Nurses are professionals working in your home. They are not family members. Kitchen privileges and the use of your home appliances are things for you to decide. Smoking is never appropriate. It's a good idea to establish house rules from the beginning so that nurses know what to expect. Keep in mind that you are the parent and you will act in that role even when you are doing nursing tasks for you or your family member. This means that you will continue to make the decisions about discipline and child care that all parents make. If I am the parent of a young child, may the nurses help me with baby sitting my other children? No. The nurse is in your home to care for your child with special medical needs. The nurse cannot be expected to discipline your other children or become involved with caring for them in any way. You may want to help your other children to learn about the necessity to be careful around medical supplies and equipment. What should I do if I think I need to report a nurse for neglectful or wrongful actions? The first thing you should to is to contact the home health agency and report your concern to the Director of Nursing. If you are not satisfied with the response or believe that legal action is warranted, you may wish to contact the Board of Nursing Examiners. (In Maryland, the phone number for the Board is ) Your Coordinator at The Center can also give you information and guidance in this regard. Anything else that I should be thinking about relative to nursing in my home? On the following page, you will find a section entitled Home
18 Care Rights and Responsibilities. These suggested guidelines summarize some of the ideas that you read about in this booklet, and you may want to re-read them from time to time. Any more questions? Make a note of them and ask your Coordinating Center Care Coordinator. When partnering with home health agencies, you may expect to... Have competent nurses in your home Have the names of persons caring for you or your family member known to you prior to their entering your home Refuse the services of any nurse or agency that is unacceptable to you Know the nurses' supervisor and to know how to contact that person know the skills, experience and medical background of the nurse in your home View, on request, the resume, license and CPR certification of any nurse providing care to you or your family member Be treated as a part of the team providing care for you or your family member Have your privacy honored Have yourself and your home treated with respect
19 Have your concerns addressed in a timely and appropriate way Have the opportunity to be completely trained in your or your family member's care as the care needs change Have your family's confidentiality respected in the community You have the responsibilities to Provide a work space for the nurse Provide phone access to the physician and emergency services Make sure that basic hygiene needs are met by having soap, water and towels available Act as or designate the primary caregiver for your family member Be completely trained in the necessary care Respect the home nurse's unique role Keep to the agreed upon schedule as much as possible and be available as agreed Observe the requirements of the plan of care developed for you or your family member as much as possible Provide as safe as possible home environment for you or your family member and for the nurse as well Talk about your concerns with the nurse Report any changes to the plan of care to the nurse Accompany your family member to the clinic and physician visits as often as possible
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