Abuse — means the willful infliction on a person of physical pain or injury or unreasonable confinement.
Alzheimer’s Family and Caregiver Support Program (AFCSP) — Government program provides financial support to purchase goods and services related to the care of someone with Alzheimer’s disease or a related disorder. Up to $4,000 may be available per person, depending on the resources of the county, to be used for: In-home care, Respite, Adult day services, Transportation, Home-delivered meals, specialized goods and equipment. Care recipient eligibility requirements include: must have a diagnosis of Alzheimer’s disease or related disorder, meet financial eligibility criteria – couples making $40,000 or less, after costs related to Alzheimer’s disease are subtracted.
Adults – Persons age 18 – 64.
Adult Day Care – Part- or full-time care provided during the daytime. Also called “adult day service.”
Activities of Daily Living (ADLs) – everyday tasks related to personal care usually performed for oneself in the course of a normal day, including bathing, dressing, grooming, eating, walking, taking medications, and other personal care activities.
Area Agencies on Aging (AAA) – Local government agencies that provide or contract for services for older persons within their area.
Caregiver – An individual who cares for another person in need. Also see Family Caregiver.
Care Recipient: An adult (18+) or a child (under 18) with special needs who requires care or supervision to meet the person’s basic daily living needs. Some organizations and caregivers refer to this individual as the “loved one” or “family member”. This is the individual who requires care support due to an inability to provide for self-care in some way (aka “activities of daily living”), whether due to a lifelong condition, or a new or emerging situation.
Child – Persons age birth to 17
Children’s Community Options Program (CCOP) – The purpose of CCOP is to provide a coordinated approach to supporting families who have a child with a disability. This approach recognizes and maximizes the family’s capacity, resiliency, and unique abilities. The intention is to better support, nurture, and facilitate self-determination, interdependence, and inclusion in all facets of community life for the child and family.
Children’s Long Term Care Support (CLTS) – The Children’s Long-Term Support (CLTS) Waiver Program is a Home and Community-Based Service (HCBS) Waiver that provides Medicaid funding for children who have substantial limitations in their daily activities and need support to remain in their home or community. Eligible children include those with developmental disabilities, severe emotional disturbances, and physical disabilities. Funding can be used to support a range of different services based on an assessment of the needs of the child and his or her family.
Consumer Directed Services AKA Self-Directed Services: Also known as participant-directed or self-directed services, publicly funded consumer-directed services enable consumers to assume more control over the long-term services and supports (LTSS) they receive. In the employer authority model of consumer direction, consumers are authorized to hire, schedule, supervise, and dismiss their own personal assistance workers; while in the budget authority model, consumers are allotted a personal budget from which to directly purchase goods and services, including (but not limited to) personal assistance.
Caregiver Stress – Emotional or physical strain caused by the challenges of caregiving. Caregiver stress may cause feelings of anger, anxiety, exhaustion, frustration, illness, or sadness.
Certified Nursing Assistant (CNA) – Trained, licensed nursing professional who assists with personal care needs, such as bathing, dressing or eating.
Discharge Planner – Social worker or nurse who assists patients and their families with health care arrangements following a hospital stay.
Emergency Respite: Emergency respite care addresses the health and safety of the care recipient and the caregiver and can reduce the potential risk of neglect, abuse, or self-harm.
Family Care – Family Care is a long-term care program that helps frail elders and adults with disabilities get the services they need to remain in their homes. This comprehensive and flexible program offers services to foster independence and quality of life for members while recognizing the need for interdependence and support.
Family/Primary Caregiver: Any family member, relative, partner, friend, foster parent, who provides in-home monitoring, management, supervision, or treatment of a child or adult with a special needs.
Family Caregiver Assessment – a systematic process of gathering information that describes a caregiving situation and identifies the particular problems, needs, resources and strengths of the family caregiver. It approaches issues from the caregiver’s perspective and culture, focuses on what assistance the caregiver may need and the outcomes the family member wants for support, and seeks to maintain the caregiver’s own health and well-being.
Family Caregiver Reassessment – a follow-up interview with the caregiver on a regularly scheduled basis or as needed.
Fiscal Agent: Fiscal intermediary (FI) – Private health insurance company under contract with the Health
Fiscal Employment Agent (FEA): If you participate in IRIS (Include, Respect, I Self-Direct), you will work with an FEA. The FEA 1.) Does background checks on workers you hire; 2.) Processes payroll and pays vendors for services; 3.) Manages the amount of federal and state taxes to take out of your workers’ checks; 4.) Helps with other employer tasks; and 5.) Processes any cost share you may owe. They are there to assist and support you in your role as an employer.
Formal Caregiver – a provider associated with a formal service system, whether a paid worker or a volunteer.
Health Care Provider – Any person, organization, or institution that offers health care services to consumers.
Hospice Care – Care philosophy focused on reducing suffering rather than curing a condition. Hospice addresses the physical, spiritual, social and emotional needs of dying individuals and loved ones. Hospice care can include pain medication, therapy, or counseling.
Home and Community Based Services (HCBS) – Refers to home and community-based services (HCBS) that are provided to individuals at home. The adjectives formal and paid are used interchangeably in this report to distinguish home care services provided by home care workers from assistance provided by family members, friends, and other informal or unpaid caregivers.
Home Care Agency: Home care agencies, which include home health care and nonmedical home care agencies, provide a range of in-home services for consumers, including support with activities of daily living (ADLs) and instrumental activities of daily living (IADLs). Home care agencies assume all responsibility for hiring, training, and supervising the home care workers who provide that support, except in the agency with choice (AWC) model, in which employment responsibilities are shared between the consumer and agency.
Home Care Worker: Home care worker is a term used to collectively describe direct care workers— including primarily personal care aides and home health aides—who provide assistance to individuals in their homes.
Home Health Aide: Home Health Aides are direct care workers who assist consumers with activities of daily living (ADLs) and instrumental activities of daily living (IADLs), and who may also perform certain clinical tasks under the supervision of a licensed clinical professional. In the home care context, nursing assistants may fulfill the same duties as home health aides.
Hospital patient advocate – Hospital employee who helps resolve patients’ and loved ones’ concerns.
Individual Respite Providers (IRP): Individuals who provide care for specified periods of time but operate independently from agencies whether in publicly funded consumer-directed programs or through private-pay arrangements. Sometimes, these are also called “independent” workers.
Instrumental Activities Of Daily Living (IADLS): IADLs are tasks associated with living independently, such as preparing meals, shopping, housekeeping, using a telephone, managing medications, managing finances, and attending appointments.
IRIS (Include Respect I Self-Direct) – IRIS is a Medicaid-funded, long-term care program offered by the Wisconsin Department of Health Services. IRIS is available in counties where Family Care operates. In IRIS, you have budget authority, which means that you choose which goods, support and services you will use to achieve your long-term care goals.
IRIS Consulting Agencies (ICA’s) – Everyone in IRIS works with an IRIS consultant agency. The IRIS consultant agency helps IRIS participants self-direct and handles the day-to-day operations of the IRIS program. Service definitions can be found at this link.
In-Home Care – Care that takes place at home. It may be unpaid or paid care provided by loved ones, friends or professional caregivers. In-home care typically includes assistance with day-to-day tasks, such as bathing, walking, or cooking.
Licensed Practical Nurse (LPN) – Certified professional who provides basic bedside care under the direction of a registered nurse (RN) or physician.
Lifespan Respite: According to the national Lifespan Respite Act passed in 2006 , this includes “coordinated systems of community-based respite for family caregivers of children or adults regardless of special need.”
Long-Term Care (LTC) – a combination of medical, nursing, custodial, social, and community services designed to help people who have disabilities or chronic care needs, including dementia. Services may be provided in the person’s home, in the community, in assisted living facilities or in nursing homes.
Long-Term Services and Supports (LTSS): LTSS include a range of health and social services that are provided to individuals who require assistance with activities of daily living (ADLs) and/or instrumental activities of daily living (IADLs). LTSS may also be referred to as long-term care (LTC).
Managed Care Organizations (MCO’s) – Everyone in Family Care works with an MCO Organization. Managed care organizations operate the Family Care program and provide or coordinate services in the Family Care benefit package. Services are tailored to each individual’s needs, circumstances, and preferences.
Medicaid – Joint federal and state health insurance program available to those with limited income and resources. Eligible individuals include pregnant women, children age 19 or younger, persons age 65 or older, and those who are blind, disabled or in need of nursing home care. Medicaid will pay for nursing facility care, provided the nursing facility is certified.
Medicare: Medicare is a federally administered health insurance program for people who have worked in the United States and are above the age of 65 or younger than 65 with a qualifying disability. Medicare coverage for personal assistance services has traditionally been limited to persons who are assessed as “homebound” and who also receive “skilled” nursing or other services, and typically for only a short period of time. Since January 2019, however, Medicare Advantage plans have had the option to provide “non-skilled” home care services, including personal care aide or home health aide services, as a supplemental benefit.
Medicare Part A – Hospital insurance that helps pay for inpatient hospital care, limited skilled nursing care, hospice care, and some home health care. Most people get Medicare Part A automatically when they turn 65.
Medicare Part B – Medical insurance that helps pay for doctors’ services, outpatient hospital care, and some other medical services that Part A does not cover (like some in-home health care). Part B helps pay for these covered services and supplies when they are medically necessary. A monthly premium must be paid to receive Part B.
Neglect means an act, omission or course of conduct that, because of the failure to provide adequate food, shelter, clothing, medical care or dental care, creates a significant danger to the physical and mental health of a person.
National Family Caregiver Support Program (NFCSP) – a federal program created by Congress in the 2000 Amendments to the Older Americans Act to recognize the complexities of caring for family members, loved ones and friends. Under the NFCSP, the states use federal funds to offer direct support services to family caregivers of persons age 60 and older, including information to caregivers about available services; assistance to caregivers in gaining access to supportive services; individual counseling, support groups and caregiver training; respite care; and supplemental services (e.g., emergency response systems, home modifications).
Nursing Care – Health care services that include medical and personal attention.
Older Adults – Persons age 65+
Ombudsman – Advocate for patient/resident rights and improvements in the long-term care system.
Personal Care – Assistance with “activities of daily living,” such as getting out of bed, bathing, using the toilet, dressing, walking or eating.
Personal Assistance Services (PAS): Personal assistance services encompass assistance with activities of daily living (ADLs) and/or instrumental activities of daily living (IADLs) provided to individuals who experience limitations in accomplishing these activities without assistance. Also known as personal care services and related terms, personal assistance services are central to paid home care services and are provided predominantly by home care workers.
Personal Care Aide: Personal care aides or Personal Care Workers are direct care workers who assist with activities of daily living (ADLs) and/or instrumental activities of daily living (IADLs), and who may also support individuals with employment and other aspects of community and social engagement.
Planned Respite: An ability to plan ahead for the care needs of the care receiver.
Registered nurse (RN) – Nurse who has graduated from a formal nursing education program and passed a state-administered exam. RNs have completed more formal training than licensed practical nurses (LPNs) and have a wide scope of responsibility including all aspects of nursing care.
Respite: A break for family caregivers who provide care to a child or adult with special needs, serious health issues, or disability.
Respite Care means care that is provided to a person with special needs, or a person at risk of abuse or neglect, in order to provide temporary relief to the caregiver of that person or when the caregiver is unable to provide care. Respite can vary in time from part of a day to several weeks.
Respite Provider Agency (RPA): An organization providing formal, traditional, or creative (nontraditional, i.e., camps) respite through its program, utilizing a team of employees and/or volunteers to provide the respite. This does not include the use of individual providers. Provider agencies must appraise, verify, and check for accuracy, authenticity, validity, and supervision of their team members. Sometimes this agency is referred to as a “Provider”.
Screening – a short rapid review with caregivers that identifies those at risk, leading to an opportunity for a full assessment for those wishing to proceed.
Skilled Nursing Care – 24/7 comprehensive care provided in a home-like setting. Skilled Nursing Care centers promote autonomy and choice. They offer a variety of services, social activities and recreational opportunities. Also called “nursing homes.”
Social worker – Care professional committed to advancing social rights.
Special needs: A care recipient’s needs resulting from an emotional, behavioral, cognitive, physical or personal condition that necessitates receipt of care or supervision in order to meet the person’s basic needs or to prevent harm from occurring to him or her.
Supplemental Respite: A break for the family caregiver for other respite related responsibilities that include cooking, cleaning, laundry, lawn care, snow removal, transportation, and ensuring their home is accessible and safe for their loved ones.
Tribe or band means the governing body of a federally recognized American Indian tribe or band in this state.
Veterans care – Support and care services for elderly or ill veterans and their caregivers.
Respite care, whether on a planned or emergency basis, is taking a short break from caregiving duties, and it allows the caregiver an opportunity to rest, refresh, and recharge. Respite care can occur in the caregivers or care recipient’s home or a facility-based environment.
Yes! Respite care has many benefits for the primary caregiver and care recipient. It is critical for primary caregivers’ mental and physical health to get a break. Here are some examples of the benefits:
- increase social engagement and decrease isolation
- promote relaxation
- provide assistance and support
- prevent bad habits
- boost social, emotional, and physical health
- reduce friction between the primary caregiver and the care recipient
- allows the primary caregiver to have a sense of identity
Do you routinely manage the basic needs of a child, adult, or senior citizen living with special needs or memory loss? Are you responsible for assisting with one bathing/showering? Meal Prep? Medication management? Assistance with incontinence? Ambulation? Functional transfers? Oversight for the care recipient’s safety? Then, yes! You are a caregiver!
Federal programs (like Medicaid and Medicare) managed at the state level have complex rules and eligibility requirements. Laws and regulations vary by state and often by county. To get the best guidance possible, contact your County Human Services Agency or local Aging and Disability Resource Center.
Find Your Aging and Disability Resource Center
Find Your County Human Services Agency
No, RCAW is a statewide organization that connects primary caregivers to respite care providers with resources, referrals, grants, training, and the Wisconsin Respite Care Registry. We do not provide direct services.
YES! Respite care can allow you to step away, even for just a few hours. It is not uncommon for primary caregivers to feel overwhelmed and can be used to help support and stabilize the family dynamic.
Regardless of age, ranging from birth to end of life.
Call us at 608-222-2033 or email. We will help you identify options available in your community.
When you devote so much love and energy to caregiving, it may be difficult to entrust your family member’s care to strangers. Whether you engage a Respite Care Worker directly or work through an agency, you can diminish your fears by conducting some basic research. Check out our free online training course called “How To Hire A Respite Care Worker.” Or find hiring tips under our Find Respite Care tab.
Because your case may be unique, you should discuss these questions with your tax or legal counsel.
Below is some general, overall guidance, but you are responsible for confirming what you need to do in your particular situation:
Worker’s Comp: Because the payment to the person or Guardian of the recipient is a reimbursement, the worker’s comp is not required.
Form 1099: Is issued for an Independent Contractor(s)/Sole Proprietor(s) receiving over $600 for services in a given year. Under RCAW’s Caregiver Respite Grant Program, the payment (reimbursement) will not be paid directly to the Respite Care Worker or Provider/Agency, but to the respite recipient (caregiver who received respite). The respite recipient (caregiver) may provide 1099 to the Respite Care Worker or Provider/Agency. However, the person receiving payment for their respite services should be completing one when they complete their taxes. RCAW’s Respite Care Grant Program does not need to process 1099’s. Whether or not to complete a 1099 form is between the respite care recipient (caregiver) and the Respite Care Worker or Provider/Agency.
RCAW has received federal funds specifically for underserved populations. When determining supporting underserved populations with grant funds, RCAW has adopted the following populations in the Underserved Populations Policy for Grant Funds:
- American Indian/Alaska Native/Native caregivers.
- Asian American and Pacific Islander caregivers.
- Black and African American caregivers.
- Child caregivers who provide care to parents, grandparents, and siblings.
- Hispanic/Latino caregivers.
- Kin and grandparent (relatives) caregivers.
- LGBTQIA+ caregivers.
- Rural caregivers
A portion of the underserved populations was determined from First Principles: Cross-Cutting Considerations for Family Caregiver Support, Developed by: The Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council & The Advisory Council to Support Grandparents Raising Grandchildren.
RCAW integrated Rural Caregivers into this policy using the 72-county map on the Wisconsin Department of Health Service Website. The urban and rural breakdown used here is based on the map as seen in the Wisconsin Office of Rural Health’s Rural Wisconsin Health report.