NYS Caregiver Guide 2021





3 Dear Caregiver, The New York State Department of Health is excited to share with you the NYS Caregiver Guide. Caregiving, while often truly a labor of love, can be emotionally and physically complex. Valuable information may be difficult to find. We hope that this guide will support you in caring for yourself and in finding the services that meets the needs of the person for whom you are caring. HOWARD A. ZUCKER, MD, JD Commissioner, New York State Department of Health



6 NYS CAREGIVER GUIDE 01 INTRODUCTION Pg. 09 Who is a Caregiver? Impact of Caregiving 02 CAREGIVER EDUCATION Pg. 15 Know your Rights • NYS Caregiver Advise Record and Enable (CARE) Act • Family and Medical Leave Act (FMLA) • New York State Paid Family Leave Act • New York State Paid Sick Leave 03 CREATING YOUR CARE TEAM Pg. 23 Creating Your Team Get the Family Involved Services and Programs Palliative Care and Hospice Care: What’s the Difference? Planning for Care 04 COMMUNICATING WITH HEALTHCARE PROFESSIONALS Pg. 47 HIPAA 05 SAFETY CONCERNS Pg. 53 Medication Management Medication List Creating a Safe Environment Home Modifications and Assistive Technology

7 CONTENT TABLE OF CONTENTS 06 LEGAL AND FINANCIAL PLANNING Pg. 59 07 MEDICARE AND MEDICAID Pg. 69 Medical Orders for Life Sustaining Treatment (MOLST) Independent Consumer Advocacy Network (ICAN) Advance Directives Durable Power of Attorney Financial Planning Resources Tax Incentives Medicare Medigap Medicaid Managed Long Term Care New York State Health Insurance Information, Counseling, and Assistance Program (HIICAP) 08 PLANNING FOR THE UNEXPECTED Pg. 75 Get and Stay Organized 09 SEEKING SUPPORT Pg. 83 Attend to Your Own Health Needs Asking for Help 10 RESOURCES Pg. 89 New York State Resources National Resources Terms You May Encounter



Caregivers (you) play an important role in our society. If you support the needs of someone who is unable to care for themself due to age-related conditions, illness, injury, or disability, consider this guide your starting place. Being a caregiver is not always easy, but it can be rewarding. Caregivers must find and accept ways to care for themselves, too. This guide contains tips and plans that you can use, as well as legal and medical definitions and information about your rights. Perhaps most importantly, you will find a list of resources—not only for the person you support, but also for yourself. 10

INTRODUCTION Who is a Caregiver? A caregiver is someone who may do any of the following—and more: Speak up for another person to ensure their rights and wishes are supported. Help with activities of daily living, such as bathing, eating, or dressing. Manage medications and talk to care providers. Manage chores, appointments, shopping, cooking, cleaning, and transportation. Provide support with legal planning. Manage bills or provide other forms of financial support. Offer emotional support and encouragement. Caregivers may or may not live with the person they support. Spouses, partners, adult children, family members, friends, and neighbors all serve as caregivers and may provide care at home, in a facility, or from a distance. Conditions that often require the help of a caregiver include: physical decline; chronic conditions such as arthritis, diabetes or dementia; visual and hearing impairments; sudden medical events such as a heart attack, stroke, or a traumatic brain injury; developmental disabilities; mental health or psychiatric disorders; and addiction. Some situations require temporary care, while others require long-term services and support. 11

NYS CAREGIVER GUIDE Impact of Caregiving As a caregiver, you are not alone. Across the United States, millions of adults care for others. Taking on this role often affects one’s mental and physical health, social life, and interpersonal relationships. Many caregivers report physical or emotional strain from caregiving. Caregivers who provide more hours of care report a higher amount of stress and loneliness. Caregiving can affect personal finances when using paid help, offering monetary support, or due to a change in personal or work life. When employed caregivers are trying to balance a caregiving role with their career, many need to modify work schedules by going in late, leaving early, or taking time off. Some caregivers may take a leave of absence, reduce their work hours, or leave their jobs altogether in order to take care of someone. Although caregiving can be demanding, research shows it can also be a positive experience. Some caregivers find little to no impact on their personal health and well-being, and find meaning in their role as a caregiver. In some cases, connecting with the right resources and support can help make a difference. YOU ARE NOT ALONE. ONE IN FIVE AMERICANS SERVE AS A CAREGIVER. 12




NYS CAREGIVER GUIDE AS A CAREGIVER, INFORMATION WILL HELP YOU. EDUCATIONAL VIDEOS The United Hospital Fund A series of videos that teach you about medication management, home safety and more: www.nextstepincare.org/videos. Caregiver Action Network Watch caregivers sharing their own advice and support, along with videos that teach daily tasks such as bathing others: www.caregiveraction.org/resources/videos. Home Alone AllianceSM These “How-To” videos provide instruction to family caregivers on specific medical/nursing tasks. Many are available in both English and Spanish: www.aarp.org/ppi/initiatives /home-alone-alliance/family-caregiving-videos . TRAINING RESOURCES At the end of this guide, you will find a list of agencies that can help. You can also visit www.nyconnects.ny.gov to find caregiver training resources near you. 16


NYS CAREGIVER GUIDE CAREGIVERS HAVE RIGHTS. The right to be involved in decision-making, including hospital discharge planning and medical treatments. The right to be trained in how to provide necessary care. The right to learn about the person’s condition. The right to ask for help and set limits. Know Your Rights NYS CAREGIVER ADVISE, RECORD AND ENABLE (CARE) ACT The CARE Act requires that during a hospital stay, patients have the right to designate a caregiver who will help them after they are discharged. 18

CAREGIVER EDUCATION UNDER THE CARE ACT HOSPITALS MUST: Provide each patient or their legal guardian with at least one chance to identify at least one caregiver prior to the patient’s discharge or transfer. Attempt to notify the caregiver about the patient’s transfer to another healthcare facility or before the patient returns to their residence. Consult with the named caregiver and patient regarding the patient’s postdischarge needs at their home and offer the caregiver education in all required post-discharge tasks (while accounting for the caregiver’s capabilities and limitations). In the formal discharge plan, identify: the caregiver(s), the recommended postdischarge care, and contact information for community resources to help the caregiver(s) provide care. 19

NYS CAREGIVER GUIDE FAMILY AND MEDICAL LEAVE ACT (FMLA) The Family and Medical Leave Act of 1993 (FMLA) is a federal law that allows eligible employees of covered employers to take unpaid, job-protected leave for specific family and medical reasons. Group health insurance coverage is available as if the employee had not taken leave. For more information contact your employer’s human resources department and/or the United States Department of Labor at: www.dol.gov/whd/fmla or 866-487-9243. DID YOU KNOW? The law protects patients from being discharged without having needed services in place: www.health.ny.gov /professionals/patients/patient_rights . 20

CAREGIVER EDUCATION NEW YORK STATE PAID FAMILY LEAVE ACT Beginning in January 2018, all employees in New York State became eligible for paid leave to take care of a family member with a serious health condition; care for a newborn or adopted/foster child; or any urgent matter regarding a spouse, child, domestic partner, or family member serving in the military. The law covers employees under New York State’s temporary disability law and those who have been employed for at least 26 weeks. As of January 2021, this law’s benefits include a maximum of 12 weeks of paid leave in a 52-week period and wages of up to 67% of the employee’s average weekly wage. For more information visit: www.ny.gov/programs/new-york-state-paid-family-leave. NEW YORK STATE PAID SICK LEAVE Beginning January 1, 2021, all employers in New York State are required to provide annual sick leave to their employees. In most cases, the leave must be paid. Leave may be used for a mental or physical illness, injury or health condition of an employee or an employee’s family member. The term “family member” is defined broadly to include the employee’s child, spouse, domestic partner, parent, sibling, grandchild, and grandparent, as well as the child or parent of the employee’s spouse or domestic partner. The amount of leave, and whether it is paid or unpaid, depends on the size of the employer. For more information, contact your employer’s human resources department. 21



NYS CAREGIVER GUIDE Creating Your Team Teamwork is essential to caregiving. Build a team of people you trust. In addition to you and the person in need, the care team can include family, friends, doctors, social workers, and others whom you trust. In this section, you will learn about the following care options: Informal Care (family, friends) Home Care Consumer Directed Care Adult Day Care Respite Care Transportation Telehealth Adult Care Facility Skilled Nursing Facility In-Home Services for the Elderly Palliative and Hospice Care 24



CREATING YOUR CAREGIVING TEAM WHICH CAREGIVING TASKS DO YOU PROVIDE? Transportation Grocery shopping Housework Managing finances /paying bills Preparing meals, including food for special diets Medication management Managing medical services Getting in and out of bed and chairs Dressing Answering the phone or door Maintaining equipment (wheelchair etc.) Bathing or showering Going to the bathroom Exercise Grooming Home repair Laundry Coordinating paid service Engagement or socializing Other 27

NYS CAREGIVER GUIDE Get the Family Involved Family and friends may be able to help with care. If your family tackles issues as a team, you’re probably ahead of the game. However, even close families can be tested when one of you needs care. Try to plan a family meeting. Before the meeting, prepare to talk about medical care, living arrangements, dividing caregiving tasks and how to pay for care. Think about ways you might use each other’s strengths so you can make specific requests. Review your list of caregiving tasks. Which tasks could you ask others to help with? 28

CREATING YOUR CARE TEAM TIPS FOR DIFFICULT CONVERSATIONS: Know your purpose. Be clear on what you want to accomplish. Listen. Allow everyone to share their concerns and express their feelings. Take your time. Leave room to continue the conversation at a later time. Spend time together. Plan time after the conversation to help everyone stay connected. Plan. Figure out what you want to say ahead of time. State the issue. Share the purpose of the conversation and why it’s important to you. Wrap up. Thank everyone for their time and attention. 29

NYS CAREGIVER GUIDE Services & Programs HOME CARE Home care includes a range of services. The goals of home care may be to help someone after an illness or injury, provide services after a hospital stay, or provide long-term support to keep the person as healthy and independent as possible. Home care services are provided by Certified Home Health Agencies (CHHAs) and Licensed Home Care Service Agencies (LHCSAs). Home care can be paid privately or through Medicare, Medicaid and other insurance programs. Homemakers, personal care aides, and home health aides are some of the home care staff with whom you might interact. Homemakers help with light housekeeping tasks. They can grocery shop, do laundry, and prepare meals. Homemakers cannot provide personal care. Personal care aides help with personal care, such as bathing, grooming, and dressing. They can also prepare meals, grocery shop, and do light housework. Personal care aides are limited in the medical care they can provide. For example, they cannot check blood pressure or give someone their medication. Home health aides assist with daily living activities, which include bathing, dressing, and walking. Home health aides can also grocery shop and do household chores. Some home health aides can perform healthrelated tasks such as taking a temperature or helping with exercises. 30


32 NYS CAREGIVER GUIDE CONSUMER DIRECTED PERSONAL ASSISTANCE PROGRAM (CDPAP) New York State’s CDPAP allows people with Medicaid choice in who they hire to provide services—including hiring family or friends. This Medicaid program provides services the chronically ill or individuals with physical disabilities who have a medical need for help with activities of daily living (going to the bathroom, bathing, getting dressed, walking, etc.) or professional nursing services. To be eligible for CDPAP, individuals must qualify for Medicaid.

33 CREATING YOUR CARE TEAM ADULT DAY CARE Adult day care provides care outside the home and offers a safe, structured environment that gives care recipients the chance to spend time with other people their age. Some adult day care programs provide health services as well. Social adult day services programs provide care for adults in a supervised group setting within the community. Services include socialization activities, supervision and monitoring, and nutrition. Adult Day Health Care offers medically supervised services for individuals who have a physical or mental disability. Services may include nursing evaluation and treatment, physical therapy, and other medical care.

34 NYS CAREGIVER GUIDE RESPITE CARE Respite care provides a temporary break from caregiving duties to allow the caregiver to attend to their own needs, participate in community activities, meet friends, go shopping, or just take a break. This may also be needed in the event that you are unable to provide care, such as a medical emergency, surgery, or when you are traveling. Respite may be arranged through caregiver programs that operate in your county, through home care agencies or in some instances, certain residential facilities. Friends, family and volunteers may also be able to provide respite for a few hours at a time.

35 CREATING YOUR CARE TEAM TRANSPORTATION In some areas, special or discounted transportation services for people with disabilities may be available. You can learn more about available transportation options local to you by contacting NY Connects at 800-342-9871 or online at: www.nyconnects.ny.gov.

NYS CAREGIVER GUIDE TELEHEALTH Many providers offer services through telehealth. Telehealth is the use of electronic technology to deliver health care to patients from a distance. Telehealth may take many forms including a video call with a doctor to discuss symptoms or treatment options; or the use of technology to remotely monitor and collect health data. Health and medical data collected remotely may include vital signs, blood pressure, heart rate, or blood oxygen levels. Telehealth options can be helpful in allowing you to access healthcare from the comfort and safety of home. Telehealth may also help avoid transportation issues and allow long-distance caregivers to participate in healthcare visits. For more information about telehealth, ask the healthcare provider or insurance company about your options. 36


38 NYS CAREGIVER GUIDE ADULT CARE FACILITIES Adult care facilities are licensed and may be referred to as adult homes, enriched housing programs, assisted living residences, or assisted living programs. All of these facilities provide residential care along with different types of services and supports. For instance, adult homes provide meals, housekeeping, supervision, and care management, while enriched housing programs offer community settings that are like independent housing units. SKILLED NURSING FACILITIES Nursing homes primarily provide three types of services: Skilled nursing or medical care and related services. Short-term rehabilitation due to injury, disability or illness. Health-related long term care needed regularly due to a mental or physical condition.

EXPANDED IN-HOME SERVICES FOR THE ELDERLY PROGRAM (EISEP) New York State’s EISEP provides non-medical services to adults age 60 and older who are not eligible for Medicaid and require help with activities of daily living such as going to the bathroom, bathing, getting dressed, walking, and instrumental activities of daily living such as grocery shopping, paying bills and cooking. DID YOU KNOW? EISEP also offers respite services, which give temporary breaks from caregiving duties. 39


CREATING YOUR CARE TEAM WORKING WITH HOME CARE STAFF HELPFUL TIPS: Describe each team member’s role. Every care situation is different. Clearly defining needs and responsibilities can help. Create a back-up plan in case staff, volunteers, or service providers do not arrive on time or have to cancel. Ask the home health agency about their coverage rules if staff do not show up. If you hire a private individual, speak to them about your expectations if they have to cancel. Show home care staff your list of emergency contacts. Put the list where it is easy to access. Home care staff should go through full criminal background checks. Ask the agency if staff have had a criminal background check before they come into the home. Make sure the home care staff is a good fit for you and the person you support. The first few days can be treated as a test period. For example, pay attention to how the person speaks and interacts with the person you support. If you do not live with the person you care for, consider dropping in unannounced while staff is present. 41

NYS CAREGIVER GUIDE Palliative Care and Hospice Care: What’s the Difference? Palliative care provides treatment meant to help someone with a serious or chronic illness feel better physically, emotionally, and spiritually. This type of care helps control symptoms and may include pain relief, counseling, and treatment for sleep problems. This is provided while the medical team also treats the illness. Palliative care can be provided at any time during a serious illness and can be provided in any setting. Hospice care is a type of palliative care for people who are near the end of life. The goal of hospice care is to help provide comfort and prepare the patient and their family for the end of life. In most cases, hospice care is used when the doctor believes the patient has between six months to a year to live. Hospice care can be given in the home; in a hospice residence; or in a facility, such as a hospital or nursing home. Hospice care is provided through a team-based approach with doctors, nurses, social workers, and other dedicated health professionals. 42


NYS CAREGIVER GUIDE Planning for Care Having read about the various care options, take a moment to think about which might be helpful for your situation, both now and in the future. Even if you’re not quite ready to use the care options listed here, planning for the future can help lessen many of the difficult caregiving situations that arise. It’s never too soon to start looking at available options. As you research, local agencies can provide you with more information on options in your community. Use the list at the end of this guide to see what agencies are available to you. 44

CAREGIVER EDUCATION WHICH OF THESE OPTIONS ARE RIGHT FOR YOU? Informal Care (family, friends) Home Care Consumer Directed Care Adult Day Care Respite Care Transportation Telehealth Adult Care Facility Skilled Nursing Facility In-Home Services for the Elderly Palliative and Hospice Care 45



NYS CAREGIVER GUIDE BE PREPARED TO SHARE INFORMATION. Be prepared to share important information and ask key questions when you speak with your doctor or specialist. Community agencies specific to the disease or disability can also help you learn about a medical condition or disability. They can also provide you with common questions to ask when meeting with the health care team. 48

COMMUNICATING WITH HEALTHCARE PROFESSIONALS TIPS TO EFFECTIVELY COMMUNICATE WITH YOUR CARE TEAM: Pick a doctor or team of health providers with whom you can comfortably communicate. Prepare ahead of time for each doctor visit. Make a list of specific issues and questions that you need to discuss. Make notes describing the key changes in your health or the care recipient’s medical condition so your doctor has a clear picture of your needs during the visit. Keep a list of current medications —name of drug, what the strength is, how often it is taken, when refills are needed— and take it with you to your appointments. Be ready to tell the doctor exactly what you need at each appointment (information, referrals to care, refills or new drug prescriptions, etc.). Learn about the disease or disability, and the symptoms and treatments, including clear definitions of the words that the health care team uses. Ask questions until you understand. Ask about what the treatment options are, including the pros and cons of each. 49

NYS CAREGIVER GUIDE HIPAA You might hear “I can’t tell you that because of HIPAA.” HIPAA (Health Insurance Portability and Accountability Act) is a federal law that establishes rules for sharing and protecting personal medical information. Health care professionals can share medical information with caregivers and others directly involved in a person’s care if the patient has a reasonable understanding of the situation and has an opportunity to say “no.” In some situations, caregivers need medical information to have a clear understanding of what care is needed so they can decide and prepare for next steps in treatment. HIPAA allows people directly involved in care or payment for such care to get this information. HIPAA does not require written consent, though some health care facilities do ask for the patient’s signature. If you as the caregiver have problems getting the medical information you need, talk with the medical provider or facility’s social worker, patient representative, or privacy officer. 50




NYS CAREGIVER GUIDE Medication Management Managing medications is often part of being a caregiver. You may have to make sure that the person you care for is taking the correct amount of medication at the right time. People sometimes take several medications and your role may involve watching for side effects with multiple medications. Reading and understanding medication labels can help you. Be aware of the expiration date and safely get rid of any expired medication. Medication List Doctors and other medical staff need to know the complete list of medications that their patients take. Keep a current list of medications and any known allergies. The list should include all prescription drugs, over-the-counter medications, and supplements. Printable medication lists are available online, or you can ask your insurance provider or local pharmacists for a blank form you can fill out. Place the list in a safe place where you can find it in case of an emergency. Take it with you to medical appointments. Also consider creating a reminder system for medications to help ensure doses aren’t missed. 54


NYS CAREGIVER GUIDE Creating a Safe Environment The New York State Department of Health developed a downloadable Home Safety Checklist you can use to check for safety and health hazards in the home where you’re going to be providing care. The Checklist is available online and includes tips to help you rid the home of things that might jeopardize a vulnerable person’s safety or health. Many falls can be prevented by making changes within the home. HOME SAFETY CHECKLIST www.health.ny.gov/publications/3106.pdf PREVENTING FALLS CHECKLIST www.health.ny.gov/publications/0640 56

57 SAFETY CONCERNS Home Modifications and Assistive Technology In some cases, devices designed to help with medications, bathing, or other care tasks may help provide care for someone in the home. In New York State, the Technology Related Assistance for Individuals with Disabilities (TRAID) program loans assistive devices to caregivers and people of all ages and disabilities. For more information on assistive devices, contact The Justice Center at 800-624-4143 or online at: www.justicecenter.ny.gov/traid-program.



60 NYS CAREGIVER GUIDE HONOR A PERSON’S WISHES. Advance Directives The best way to make sure that a person’s health care wishes are known and honored is to use one or more of the following legal documents, sometimes referred to as “Advance Directives.” In New York State, there are three types of Advance Directives: Health Care Proxy: A Health Care Proxy lets a person name a health care agent they trust to make health care decisions on their behalf. Living Will: A Living Will allows a person to leave written instructions that explain their health care wishes, especially about end-of-life care. Do Not Resuscitate Order (DNR): A DNR can be arranged with a doctor or provider before an emergency occurs. It expresses a person’s wish to do without cardiopulmonary resuscitation (CPR) or other lifesaving emergency treatment. FORMS www.health.ny.gov/professionals/patients /patient_rights

61 Several documents help honor a person’s wishes for care and personal finances should they no longer be able to make decisions. These documents are important for everyone, including caregivers.


63 Medical Orders for Life Sustaining Treatment (MOLST) The MOLST tool is used to help physicians and other health care providers discuss and honor a person’s preferences for treatments such as cardiopulmonary resuscitation (CPR) or artificial nutrition. More information is available online at: www.health.ny.gov /professionals/patients/patient_rights/molst . This legal document allows someone to name another person to act on their behalf in specific personal or business matters. It cannot be used for health care decisions. If the person you’re providing care for needs help with money matters like banking or paying bills, you may need to ask them to consider naming someone to act on their behalf through a durable power of attorney. A lawyer can help complete the form. Durable Power of Attorney LEGAL AND FINANCIAL PLANNING

64 NYS CAREGIVER GUIDE Financial Planning Resources Financial resources may be available to you. Use the following checklist to help you figure out what sources of financial support may be available to you or the person needing care. Personal Assets Including investments and savings. Retirement benefits may include individual retirement accounts (IRAs) or annuities. Employee Benefits May apply if the person is still working and has access to sick leave, short-term disability, and other health-related resources, such as health savings or flexible spending accounts. Review the employer’s handbook and check with the employer to understand what is available to you or the person in need of care. Military Service Benefits may be available for those who served in the military, their spouses, and others who qualify through the Veterans Administration or the Department of Defense. Supplemental Security Income (SSI) This government assistance program provides a minimum monthly income for people who are 65 or older, who have a disability, and have limited income and assets.

65 Social Security Disability Insurance (SSDI) This government program provides a minimum monthly income to those younger than 65 who have a disability and have accumulated enough work credits throughout their working life. Community Services Some caregiver support services, including respite, support groups, and care consultations, are offered through community organizations and may be available locally at low or no cost. Home Energy Assistance Program (HEAP) This program helps low-income people pay for the cost of heating their homes. Supplemental Nutrition Assistance Program (SNAP) Issues electronic benefits that can be used like cash to purchase food. Insurance There are several types—long-term care insurance, private health care or disability insurance, and life insurance—which may help provide a source of funds for care. Be sure to contact the provider to understand the coverage and benefits. Other As you plan for your financial future, you might want to think about working with an independent, professional financial planner who will understand your individual situation. LEGAL AND FINANCIAL PLANNING

66 NYS CAREGIVER GUIDE Tax Incentives To help New York State caregivers save on the costs of providing care, New York has made many common medical supplies exempt from Sales and Use Tax. For more information about tax-exempt products visit: www.tax.ny.gov /pubs_and_bulls/tg_bulletins/st/quick_reference_guide_for_taxable _and_exempt_property_and_services.htm .




70 Medicare Medicare is the federal medical insurance program for people age 65 and over; certain younger persons with disabilities; and people with certain disabilities or diseases. Medicare enrollment, covered benefits, provider network, and related information can be reviewed at: www.medicare.gov. Medigap Medicare Supplemental Insurance (Medigap) policies are sold by private insurance companies and can help pay some of the health care costs that original Medicare doesn’t cover, like copayments, coinsurance, and deductibles. To buy a Medigap policy, one must be enrolled in Medicare Part A and Part B. For more information, visit: www.medicare.gov/supplements -other-insurance/whats-medicare-supplement-insurance-medigap. NYS CAREGIVER GUIDE

71 MEDICARE AND MEDICAID Medicaid Managed Long Term Care Managed Long Term Care Plans help provide services and support to people with a long-lasting health problem or disability. These Plans are approved by the New York State Department of Health to provide Medicaid managed long term care. A Plan can provide your Medicaid home care and other long term care benefits. More information about Managed Long Term Care Plans is available online at: www.health.ny.gov/health_care/medicaid/redesign/docs /mltc_guide_e.pdf .

72 NYS CAREGIVER GUIDE Independent Consumer Advocacy Network (ICAN) ICAN is the New York State Ombudsman Program for people with Medicaid who need long-term care services. The program assists New Yorkers with enrolling in and using managed care plans that cover long-term care services, such as home attendant services or nursing home care. For questions or assistance, call ICAN at 844-614-8800 or visit: www.icannys.org.

73 MEDICARE AND MEDICAID New York State Health Insurance Information, Counseling, and Assistance Program (HIICAP) The New York State Health Insurance Information, Counseling, and Assistance Program (HIICAP) provides free and unbiased health insurance counseling on Medicare, Medigap, private health insurance, low-income subsidy programs, and other health insurance information. To contact a HIICAP counselor near you, please call 800-701-0501 or visit: www.aging.ny.gov/health-insurance-information-counseling -and-assistance-program-hiicap.



76 Unexpected care needs can arise for the person you support or for yourself. Preparing for these situations ensures that the person you support still receives the care they need.

77 PLANNING FOR THE UNEXPECTED Keep a written journal of current care needs. When kept up to date, this journal can benefit you as the caregiver, others who may need to step in to help with care, and the medical team involved in emergency care. Back up support. Though you may not receive the support of others on a regular basis, having a backup plan in the event of an emergency is essential. Think about enlisting a care agency before an emergency arises, even if you only use it once in a while. The process can take time, and it’s better to be enrolled in a program and add hours of care as needed. Talk about a backup plan with family or friends who are willing to provide care or other assistance during an emergency. Know your options. Because care needs can change, sometimes suddenly, research a number of care options before you need them. If possible, involve the person you care for in choosing options for the future. Having this knowledge before a crisis will help them receive the best quality care available and will help lower your own stress in an already stressful situation. Prepare for common emergencies. Depending on the disability or health issue of the person you support, ask the health care team about likely emergency situations and make a plan for what to do if these common issues happen. Keep an information folder in a safe and known place. Make sure the information on the following pages is readily available to first responders and to you. It’s important to have a file for both the person you support and yourself.

78 NYS CAREGIVER GUIDE Get and Stay Organized Many caregivers find that being organized helps lower their stress in the event of an emergency or a sudden change to the current care needs. You can download an organization application for your smartphone or tablet, or use a three-ring binder to collect printed materials and notes. Whatever you find that works for you, use it! Create a file of important information about the individual you are caring for. Keep this information in any form that works for you (e.g., a folder, binder, or other type of organizational tool). Select a place to store the file where you can grab it quickly in an emergency. Always store this file in the same place, and update it as often as possible. FIND AN ORGANIZATION SYSTEM THAT WORKS FOR YOU.


80 NYS CAREGIVER GUIDE TIPS FOR STAYING ORGANIZED: Phone Numbers Keep important numbers by the telephone, including numbers for emergency services, as well as a list of the involved relatives and family, doctors, pharmacy, insurance companies, case manager, nurse, or other service providers involved in direct care. Another list of phone numbers could be the “help list”—contact information for anyone who has offered to lend a hand (e.g., friends or neighbors). Calendars and Schedules Think about keeping a shared calendar with family and friends helping with care. This can be a great way to keep everyone up to date and make sure that care needs are covered. These calendars would be a good place to list appointments, as well, so that everyone involved is aware of critical dates. Medications Keep a list of all the medications you and the person you support are taking, including drug name, strength, and how often it is taken. Products such as pill containers that divide medications by date and time, as well as automatic dispensers, can help keep medications organized and help you remember when they need to be taken.

81 PLANNING FOR THE UNEXPECTED Important Documents (Patient’s Medical File) Personal data and medical information, including test results, surgery dates, immunization records, and allergies. Insurance Information Include copies of insurance cards for commercial insurance or Medicare/Medicaid/VA benefits, prescription drug coverage, dental insurance, vision insurance, and/or long-term care insurance. Legal Information and Documents Living Will, Health Care Proxy, Power of Attorney, name and contact of lawyer, contact information for relatives and close friends to be immediately notified in an emergency, and other legal documents. Organ Donor Authorization

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84 NYS CAREGIVER GUIDE Attend to Your Own Health Needs Caregiver stress can take an emotional and physical toll. When you fly on a plane, you’re told to put your oxygen mask on first before helping others. The same is true in caregiving—your needs should come first. Take a moment to think about taking a break and how to make it happen. WHICH OF THE FOLLOWING WOULD HELP YOU?

85 SEEKING SUPPORT See your primary care doctor and stay current with check-ups and yearly exams, and speak openly about your emotional and physical needs. Exercise. Eat a balanced, healthy diet. Get seven to eight hours of sleep. Try taking yoga classes or other courses designed to reduce stress. Take part in religious or spiritual activities. Attend a community event. Enjoy a hobby. Spend time with friends. Allow yourself space and the right to get angry, sad, and cry. Join a support group.


87 SEEKING SUPPORT Asking for Help Be willing to accept offers of help. When others are willing to help, try to be open to accepting it. Caregiving can be a full-time responsibility, often leading to stress and health concerns for the caregiver. Don’t be shy about letting others pitch in. Speak up and spread the responsibility. Sometimes friends and family may not know what you need. Be clear about ways they might be able to help. Try to get as many family members involved as possible, even ones who live far away. For example, you might divide caregiving tasks so that one person takes care of medical responsibilities, another helps with money and bills, and another helps with groceries and errands. The more specific your request, the more likely you are to get what you need. Differing opinions about care. Though others offer help, you may not agree with how they provide care. It is okay to allow for different styles, as long as no one’s well-being is at risk. In other situations, you may find that the person offering help may do better with more training or education related to caregiving. You might gently offer information. If you have concerns that the person providing care or the person in need of care is being mistreated or neglected, contact your local Adult Protective Services (APS). APS workers develop service plans for eligible clients to address abuse, neglect, financial exploitation, or unmet essential needs of adults.



90 NYS CAREGIVER GUIDE New York State Resources Department of Health, Alzheimer’s Disease Program Email: alz@health.ny.gov www.health.ny.gov/diseases/conditions /dementia Department of Health, Adult Care and Assisted Living Complaint Line 866-893-6772 Department of Health, Home Safety Checklist www.health.ny.gov/publications /3106.pdf Department of Health, Hospital Patient Care Issue Line 800-804-5447 Department of Health, Medical Orders for Life-Sustaining Treatment (MOLST) www.health.ny.gov/professionals /patients/patient_rights/molst Department of Health, Medicaid Program www.health.ny.gov/health_care /medicaid Department of Health, Nursing Home Patient Care Line 888-201-4563 Department of Health, Patient Rights www.health.ny.gov/professionals/patients /patient_rights Health Insurance Information, Counseling and Assistance Program (HIICAP) 800-701-0501 Home Care and Hospice Information 800-628-5972 Hospice & Palliative Care Association of New York State www.hpcanys.org Local Offices for the Aging throughout NYS www.aging.ny.gov/local-offices Medicaid Managed Care Managed Long Term Care www.health.ny.gov/health_care /managed_care Medicare General Information Line 800-633-4227

91 RESOURCES Medicare Rights Line 800-333-4114 Mental Health Association of New York State www.mhanys.org NY Association for Independent Living www.ilny.us New York State Bar Association www.nysba.org New York State Caregiving and Respite Coalition www.nyscrc.org New York Connects 800-342-9871 www.nyconnects.ny.gov New York State Division of Veterans’ Affairs 888-838-7697 www.veterans.ny.gov New York State Homecare Registry https://apps.health.ny.gov /professionals/home_care/registry/ home.action New York State Homes and Community Renewal www.nyshcr.org New York State Office for the Aging 1-844-NYSOFA1 or 1-844-697-6321 www.aging.ny.gov/programs /caring-loved-one New York State Unified Court System www.nycourts.gov/forms/surrogates /guardianship.shtml Office of Children and Family Services 518-473-7793 www.ocfs.ny.gov Office of Mental Health 800-597-8481 www.omh.ny.gov Office for People with Developmental Disabilities 866-946-9733 www.opwdd.ny.gov

92 NYS CAREGIVER GUIDE National Resources Administration on Aging, US Department of Health & Human Services www.aoa.gov Alzheimer’s Association 800-272-3900 Email: info@alz.org American Association of Caregiving Youth www.aacy.org American Cancer Society 800-227-2345 www.cancer.org CHAMPVA Insurance www.va.gov/health Family Caregiver Alliance 800-445-8106 Email: info@caregiver.org www.caregiver.org Hospice Foundation of America 800-854-3402 Email: haoffice@hospicefoundation.org www.hospicefoundation.org Medicare www.medicare.gov

93 RESOURCES National Alliance for Caregiving Email: info@caregiving.org www.caregiving.org National Alliance for the Mentally Ill 800-950-6264 www.nami.org National Council on the Aging Email: info@ncoa.org www.ncoa.org National Hospice & Palliative Care Organization 800-658-8898 www.nhpco.org National Institute on Aging 800-222-2225 www.nia.nih.gov National Mental Health Association 800-969-6642 www.nmha.org Sage National LGBT Elder Hotline 1-877-360-5428 United Hospital Fund, Next Step in Care www.nextstepincare.org United States Department of Labor, Family and Medical Leave Act www.dol.gov/whd/fmla

94 NYS CAREGIVER GUIDE Terms You May Encounter Activities of Daily Living (ADL): Basic self-care tasks such as feeding, toileting, dressing, and grooming. Adult Day Health Care: A program that offers medically supervised services for individuals with physical or mental impairment. Services may include nursing evaluation and treatment, physical therapy, speech pathology, nutrition assessment, occupational therapy, social work, psychosocial assessment, coordination of referrals, transportation, and socialization activities. Advance Directive: A document that outlines to health care professionals the various types of care that a person wants or does not want in case they are unable to relate the information themselves. Assisted Living Residence: A residence that provides care, such as meals, housekeeping, supervision, and case management. Assisted Living Program: A residence that includes home care services and that may accept Medicaid. Care Plan: A written plan for one’s care that describes the services an individual will receive in order to be as physically, mentally, and socially healthy as possible. Care Recipient: A person who receives needed care. Care Team: A group of trusted individuals who can help make decisions about a loved one’s care. This team may include formal supports (primary and specialty care doctors, local agencies, social workers, mental health counselors) and informal supports (family members, friends and members of your religious or spiritual community). Caregiver Advise, Record and Enable (CARE) Act: The CARE Act requires that general hospital inpatients be given an opportunity to formally identify a caregiver (i.e., a relative, partner, spouse, friend, or neighbor) who would provide post-discharge assistance. Certified Financial Planner: A person who has passed examinations accredited by the Certified Financial Planner Board of Standards, showing

95 RESOURCES that they are able to manage a client’s banking, estate, insurance, investment, and tax affairs. The Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA): A health benefits program in which the Department of Veterans Affairs shares the cost of certain health care services and supplies with eligible beneficiaries. Consumer Directed Personal Assistance Program (CDPAP): A statewide Medicaid program that provides an alternative way of receiving home care services; the individual or a person acting on the individual’s behalf assumes full responsibility for hiring, training, supervising, and terminating the employment of persons providing the services. Department of Veterans Affairs (VA): A United States department that provides patient care, veterans’ benefits, and other services to veterans of the U.S. armed forces and their families. Do Not Resuscitate Order (DNR): A DNR can be arranged with a doctor or provider before an emergency occurs, and expresses a person’s wish to forgo cardiopulmonary resuscitation (CPR) or other lifesaving emergency treatment. Durable Power of Attorney: A legal document that allows a person to designate someone to act on their behalf in specific personal or business matters. Family and Medical Leave Act (FMLA): The Family and Medical Leave Act of 1993 is a federal law that entitles eligible employees of covered employers to take unpaid, job-protected leave for specific family and medical reasons. Group health insurance coverage is available as if the employee had not taken leave. Health Care Proxy: A form that designates an individual to make health care decisions on a person’s behalf in situations where the person is unable to communicate the information. Health Insurance Portability and Accountability Act (HIPAA): A federal law that restricts access to individuals’ private medical information. Home Care: The term used for a range of health services that are offered in one’s own home. The overall goal of these services is to keep the person as healthy and independent as possible. Home Health Aides: Individuals who assist with daily living activities. They can also help with personal care, shopping, and household chores. Some home health aides can assist with

96 NYS CAREGIVER GUIDE health-related tasks such as taking a temperature or helping with exercises. Homemakers: Individuals who help with light house-keeping tasks. They can grocery shop, do laundry, and prepare meals. Homemakers cannot provide personal care. Hospice Care: Medical services, emotional support, and spiritual resources for people who are in the last stages of a serious illness either at home, in nursing homes, or in the hospital. Hospice care also helps family members manage the practical details and emotional challenges of caring for a loved one at the end of their life. Instrumental Activities of Daily Living (IADL): Activities include preparing meals, paying bills, shopping for groceries or personal items, doing housework or laundry, or using a telephone, among others. ICAN: A program that assists New Yorkers with enrolling in and using managed care plans that cover longterm care services. Medicare: The federal medical insurance program for individuals age 65 and older and those with certain disabilities: • Medicare Part A covers hospital care • Medicare Part B covers physicians and medical care • Medicare Part C refers to a Medicare Advantage Plan • Medicare Part D covers prescription drugs Medigap: Additional health insurance purchased from a private company to help pay for services and supports not covered by the person’s original Medicare plan. Medical Orders for Life Sustaining Treatment (MOLST): The MOLST tool is used to help physicians and other health care providers discuss and honor a person’s preferences for treatments such as cardiopulmonary resuscitation (CPR) or artificial nutrition. NY Connects: A statewide resource that provides information and assistance; screening for available long term services and supports for all individuals, regardless of age, diagnosis, disability, or payment source; options for counseling/person centered counseling; application assistance for public benefits; and facilitated connection to community services. New York State Health Insurance Information, Counseling, and Assistance Program (HIICAP): Provides free, and unbiased health insurance counseling on Medicare,

97 RESOURCES Medigap, private health insurance, lowincome subsidy programs, and other health insurance information. Over-the-counter Medications: Medicine that can be bought without a prescription. Palliative Care: Special care for people who have serious illnesses. Care is focused on improving quality of life. Sometimes palliative care is combined with curative treatment. Prescription Medication: Medication that must be ordered by a physician or other professional who is licensed in the U.S. to write prescriptions for medicine. Personal Care Aides/Assistant: Individuals who help with personal care, such as bathing, grooming, and dressing. They can also prepare meals, grocery shop, and do light housework. Personal care aides are limited in the medical care they can provide. Respite Care: Care that provides temporary relief from caring for an ill individual. This temporary care can be provided in the home or in a facility. Short-term Rehabilitation: Therapy for individuals recovering from a surgery, illness, or accident that helps patients achieve their maximum functional capacity and get back to their homes and community in the shortest time possible. Skilled Nursing Facility: A healthcare facility recognized by the Centers for Medicare and Medicaid that provides long-term health care for individuals. Social Day Program: A program that offers recreation, music, meals, and other activities. Some programs are also able to provide medical assistance. Technology-Related Assistance for Individuals with Disabilities (TRAID): A program that loans assistive technologies to New Yorkers of all ages and disabilities. TRICARE: A health insurance plan that provides coverage to current and retired members of all branches of the U.S. armed forces and their dependents. Urgent Care: A walk-in clinic that provides immediate medical service outside of an emergency room. This setting offers treatment for acute and chronic illness and injuries that are not serious enough to require an emergency visit.



100 Copyright © 2021 by New York State Department of Health This publication is supported by the Centers for Medicare and Medicaid Services (CMS) of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $236,569,329 with 100% funded by CMS/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CMS/HHS, or the U.S. Government. New York State Department of Health (NYSDOH) has used its best efforts to ensure that the information provided in this book is accurate, timely, and useful. However, the information contained in this book should not be considered medical guidance or professional advice and should be used for educational purposes only. The advice and suggestions contained herein may not be suitable for your situation. NYSDOH, its affiliates or agents, and any other parties involved in the preparation or publication of this book are not responsible for errors or omissions in information provided in this book or any actions resulting from the use of such information. Readers are encouraged to confirm the information contained herein with other reliable sources and to direct any questions concerning their personal health to licensed physicians or other appropriate health care professionals. Corrections and additions to this brochure will be made when necessary or as time permits.