What the Guidance Really Says About Practical Support for Caregivers

Key takeaways

• Area Agencies on Aging: local hubs for caregiver support, respite, meals and in-home services
• Medical equipment: Medicare and many plans cover prescribed durable medical equipment
• Most useful single change: Call the Eldercare Locator at 1-800-677-1116 to find local services.
• Commonest mistake: Buying equipment before checking whether insurance covers it.
• See a doctor if any of the signs under "When to speak to a doctor" below apply to you.

What it is

The services, equipment and help available to unpaid caregivers. It sits within Carers Health. Below are the published figures, in one place.

The numbers, in one place

What helps

What follows is the practical part: the things guidance actually asks of you.

• Call the Eldercare Locator at 1-800-677-1116 to find local services
• Ask the person's doctor for an occupational therapy home assessment
• Ask what equipment insurance will cover before buying it
• Ask about adult day programs and respite care

What to avoid

What to steer clear of, and why it catches people out.

• Buying equipment before checking whether insurance covers it
• Waiting for services to be offered; most have to be asked for
• Turning down help because of how it feels to accept it

In depth

A great deal of help exists for caregivers in the US, but it is spread across many systems: federal and state aging services, Medicare, Medicaid, veterans' programs, private insurers, nonprofits and local community groups. Each has its own rules, application process and waiting lists. That fragmentation is why many families never receive help they qualify for. Services are rarely offered automatically; someone has to ask, often more than once.

It helps to think about support in a few categories. There are services that reduce the work, such as home health aides, meal delivery and adult day programs. There are services that make the work safer, such as occupational therapy home assessments and medical equipment. There are services that give you a break, such as respite care. And there are services that help with money, paperwork and planning, such as benefits counseling and legal aid.

Area Agencies on Aging act as a front door for much of this. They are funded partly through the Older Americans Act and run the National Family Caregiver Support Program locally, which can include information, counseling, training, respite and supplemental services. Even if you are caring for someone younger, they can often point you to the right agency for disability or other services.

Signs and symptoms

• Tasks such as bathing or getting to the toilet have become unsafe to manage alone
• The person has had a fall or near miss at home
• You are missing work or sleep regularly to provide care
• Medicines are being missed, doubled up or confused
• Bills, mail and paperwork are piling up unopened
• The person is losing weight or not eating proper meals

Causes and risk factors

• Services being split across many agencies and insurers
• Not knowing what to ask for or who to ask
• Eligibility rules that depend on age, income, diagnosis or location
• Hospital discharges that happen quickly without full planning
• Reluctance from the person receiving care to accept outside help
• Waiting lists and shortages of paid caregivers in some areas

How it is checked

Needs are usually assessed in several ways. An Area Agency on Aging may do a needs assessment to see which local services fit. A doctor can order home health care for someone who is homebound and needs skilled nursing or therapy, which begins with an assessment visit at home. An occupational therapist can assess daily activities and the home environment and recommend equipment or changes.

For long-term services through Medicaid, states use their own functional assessments, usually looking at how much help a person needs with activities of daily living such as bathing, dressing, eating and moving around. Hospital social workers and discharge planners can also assess needs before a person goes home, so ask to speak with them before the discharge date is set.

Treatment and support options

Home health care through Medicare

When a doctor certifies that someone is homebound and needs skilled care, Medicare can cover part-time home health services such as nursing visits and physical, occupational or speech therapy, along with some home health aide help. It is designed for medical recovery and management, not round-the-clock personal care. Ask the doctor or hospital discharge planner whether the person qualifies and which agencies serve your area.

Medical equipment and home changes

Medicare Part B and many plans cover prescribed durable medical equipment such as walkers, wheelchairs, hospital beds and commodes from enrolled suppliers. Get the prescription and check coverage before buying. An occupational therapy home assessment can identify which items will actually help and suggest changes such as grab bars, better lighting or rearranged rooms that make the home safer.

Adult day programs and in-home aides

Adult day programs provide supervision, activities, meals and sometimes health services during the day, letting you work or rest. In-home aides can help with bathing, dressing, cooking and housekeeping. These are often paid privately, but Medicaid home- and community-based services, veterans' programs and some state programs may cover them for eligible people.

Benefits, legal and financial help

Benefits counselors can check eligibility for Medicaid, Medicare Savings Programs, prescription assistance and other help. The State Health Insurance Assistance Program offers free Medicare counseling. Elder law attorneys and legal aid services can help with powers of attorney, guardianship and long-term care planning. Many Area Agencies on Aging offer or refer to free legal help for older adults.

Caregiver training

Learning skills such as safe transfers, wound care, managing medicines or responding to dementia-related behavior makes daily care easier and safer. Training may be offered by hospitals, home health agencies, Area Agencies on Aging, condition-specific organizations and the person's own care team. Ask to be shown tasks before a discharge rather than after.

Prevention

• Ask for a discharge planner or social worker before any hospital discharge
• Keep a folder with insurance cards, medicines, diagnoses and contacts
• Arrange an occupational therapy home assessment before a fall happens
• Check eligibility for programs early, as waiting lists can be long
• Write down the name and number of everyone you speak to at each agency

Day to day

Getting practical support usually takes persistence. Expect to make several calls, fill in forms and follow up. Keeping a simple log of who you spoke to, what they said and what you are waiting for saves repeating yourself and helps when something falls through the cracks. If you are told no, ask whether there is an appeal process or another program to try.

Accepting help can feel uncomfortable, both for you and for the person receiving care. It may help to start with one service and see how it goes. Many families find that once an aide, meal service or day program is in place, the relationship between caregiver and the person receiving care improves, because less of their time together is spent on chores.

For specific groups

People on Medicaid

Medicaid covers a wider range of long-term services than Medicare, including personal care in many states through home- and community-based services waivers. Rules and waiting lists vary widely by state, so contact your state Medicaid agency or a benefits counselor.

Veterans and their families

The Department of Veterans Affairs offers home-based care, adult day health care, respite and caregiver support for eligible veterans. Ask the veteran's VA care team or a caregiver support coordinator what the person may qualify for.

Families of children with disabilities

Children with disabilities may receive services through early intervention, schools, state Medicaid programs and Title V programs for children with special health care needs. A care coordinator or the child's pediatrician can help navigate these.

Questions to ask your doctor

• Does the person I care for qualify for home health services?
• Can you order an occupational therapy home safety assessment?
• Which equipment should be prescribed so insurance may cover it?
• Is there a social worker or care manager in your practice?
• Can I be trained in the tasks I will need to do at home?
• What services should be set up before discharge?

More questions, answered

Does Medicare pay for long-term help with bathing and dressing?

Generally not on its own. Medicare covers home health aide help only as part of skilled home health care for eligible homebound patients. Ongoing personal care is usually paid privately, through long-term care insurance, Medicaid or veterans' programs.

What is an Area Agency on Aging?

It is a local public or nonprofit agency that plans and coordinates services for older adults and caregivers in a particular area. Services can include information, caregiver support, respite, meals, transportation and in-home help. You can find yours through the Eldercare Locator at 1-800-677-1116.

How quickly can services be arranged?

It varies. Home health can start within days of a doctor's order. Medicaid long-term services can take weeks or months, with waiting lists in some states. Applying early and following up regularly helps.

Can I be paid for being a family caregiver?

In some cases. Many state Medicaid programs allow eligible people to hire a family member as their paid caregiver, and some veterans' programs offer stipends. Rules vary, so ask your state Medicaid agency or the VA.

Should I buy equipment online to save time?

It is usually better to get an assessment and a prescription first. Equipment that is the wrong size or type can cause falls, and insurance may not reimburse items bought without a prescription or from a supplier that is not enrolled.

What can I do if the person refuses help?

Introduce help gradually and involve the person in choices. Presenting services as support for you, or as a trial, can help. If the person has capacity, their choices must be respected, but if safety is a concern, talk to their doctor or adult protective services.

Related topics

• What the Guidance Really Says About Benefits and Financial Support (Long-Term Conditions)
• Medicaid Eligibility: Sorting the Evidence From the Noise (Medicare and Medicaid)
• Staying Independent: What the Evidence Actually Says (Healthy Aging)
• Sexual Health Services: What Published Guidance Supports (Sexual Health)

Where to go next

• Practical Support for Caregivers for Beginners: Where to Start
• Practical Support for Caregivers: Common Questions Answered
• Practical Support for Caregivers — the reference entry
• Caregiver Health: The Complete Guide
• Caring for Someone with Dementia: What Published Guidance Supports
• Young Caregivers: What Published Guidance Supports

When to speak to a doctor

Contact the person's doctor or local adult protective services if you can no longer provide care safely, or if the person you care for is at risk. Call 911 for a fall with a head injury, sudden confusion, chest pain, or signs of a stroke.

Where this comes from

• National Institute on Aging — Getting Help With Caregiving
• Medicare.gov — Home health services
• Medicare.gov — Durable medical equipment (DME) coverage

How this page was put together

Every figure, recommendation and warning above is taken from the guidance named in Where this comes from. Nothing on this page is inferred, summarized or generalized beyond what those bodies publish: where they give a number, it is their number, and where they are silent, so are we. Pages are rebuilt whenever the underlying record changes. Sign-off by a named clinician, where it has happened, is shown at the top of the page along with the date.

Medical disclaimer

This article is general information, not medical advice. It cannot account for your own history, medication or circumstances. Always speak to your doctor, pharmacist or another qualified health professional before making changes that affect your treatment, and never delay seeking medical advice because of something you have read here. In an emergency, call 911.