Guide
Resources & Services
Chapter 1: Government Programs for Older Adults and their Family Caregivers
Written by Suzanne Boutilier

Government programs provide essential support for older adults and family caregivers. They enhance the quality of life and/or provide financial benefits for both caregivers and care recipients.

Medicare

Medicare is the federal government's medical insurance for individuals aged 65 and older (and younger people with some disabilities). While Medicare doesn’t cover in-home care to support activities of daily living (ADLs) like bathing, continence, or dressing, it does provide benefits for certain home-based services. These benefits include part-time skilled care for those who are homebound and meet specific criteria under Medicare Part A. Medicare may also cover skilled nursing care, physical therapy, occupational therapy, speech therapy, and more through approved home health agencies.

Older adults can access Medicare via a traditional Medicare plan or a Medicare Advantage plan. Here’s a quick overview of each.

Traditional Medicare

Traditional Medicare consists of several parts, including Parts A, B, and D:

Part A (Hospital Insurance): Part A helps cover inpatient care in hospitals, skilled nursing facility care, hospice care, and home health care. It generally does not require a monthly premium.

Part B (Medical Insurance): Part B helps cover services from doctors and other healthcare providers, outpatient care, home health care, durable medical equipment, preventive services, and more. Most people pay a monthly premium for Part B.

Part D (Drug coverage): Part D helps cover the cost of prescription drugs, including many recommended shots or vaccines. It’s offered through private insurance companies that follow rules set by Medicare. Part D provides a wider range of coverage for prescription drugs compared to what’s covered by Part B.

Medicare Parts A,B, and D comparison

Medicare Advantage

About half of Medicare beneficiaries have health coverage through a Medicare Advantage (MA) plan—also known as Medicare Part C. These plans have traditionally focused on health-related benefits, but many have expanded to include a broader range of non-medical, supplemental benefits that support both older adults and their family caregivers. These benefits may include:

  • caregiver training
  • support groups
  • counseling
  • respite care
  • assistive technologies
  • transportation
  • meal services
  • adult day care
  • community-based services
  • other supportive services

Traditional Medicare vs. Medicare Advantage

The three biggest differentiators between traditional Medicare and Medicare Advantage are:

Provider Choice: Traditional Medicare allows you to go to any doctor or hospital that accepts Medicare nationwide, without a referral, even to see a specialist. Medicare Advantage often requires the use of doctors within the plan's network and service area, and may require referrals to see specialists.

Cost Structure: Traditional Medicare requires the beneficiary to pay a 20% coinsurance for Part B-covered services after meeting deductibles, with no yearly out-of-pocket limit unless supplemented by a Medigap plan. Medicare Advantage offers varied out-of-pocket costs, potential additional premiums, and includes a yearly limit on out-of-pocket expenses for services covered by Part A and Part B.

Coverage: Traditional Medicare covers most medically necessary services but does not include benefits like eye exams, most dental care, and routine exams. Medicare Advantage must cover all services Traditional Medicare covers and may offer extra benefits such as vision, hearing, dental services, and prescription drug coverage.

Information about how to enroll in Medicare and Medicare Advantage is here.

Medicare’s GUIDE Program

The Centers for Medicare and Medicaid Services (CMS) have started a pilot program to better support those of us who are caring for family members with Alzheimer’s disease or dementia. It’s called the “Guiding an Improved Dementia Experience (GUIDE) Model.” The GUIDE Model will offer 24/7 access to a support line, as well as caregiver training, education, and support services, including paying for respite care.

This program will allow people living with dementia to remain safely in their homes for longer by delaying or preventing a move to a nursing home. And it will improve the quality of life both for people living with dementia and their unpaid caregivers.

The model will launch on July 1, 2024, and run for eight years. Our older family members will be eligible to receive services under the GUIDE Model if they meet all of the following criteria:

  • They have dementia, as confirmed by a clinician on the GUIDE Participant’s GUIDE Practitioner Roster
  • They’re enrolled in Medicare Parts A and B (not Medicare Advantage, Special Needs Plans, or PACE programs) and have Medicare as their primary payer
  • They have not elected the Medicare hospice benefit
  • They’re not a long-term nursing home resident

To enroll an eligible family member in this program, we’ll need to find a healthcare provider that’s participating in the GUIDE Model. CMS will publish a list of GUIDE model participants on its website, cms.gov, in the Summer of 2024.

Medicaid

Medicaid is a state-federal partnership program that provides health coverage to millions of low-income individuals, including children, parents, pregnant women, seniors, and people with disabilities. It covers a wide range of services, such as hospital care, physician services, prescription drugs, and long-term care services and supports (LTSS).

Medicaid Benefits

  • For Beneficiaries:
    • Medicaid helps low-income individuals access essential healthcare services they may not afford otherwise.
    • It covers a variety of medical services, including hospital care, physician visits, prescription drugs, and long-term care.
  • For Family Caregivers:
    • State Medicaid agencies offer training, services, and sometimes payments to family caregivers.

Medicaid coverage varies from state to state. However, in every state, individuals have to meet strict financial eligibility criteria in order to enroll. This means our family member would have to spend almost all of their remaining savings and assets on health care prior to enrolling and receiving benefits.

More information on Medicaid eligibility and enrollment is here.

The Program of All-Inclusive Care for the Elderly (PACE)

This program, available in some states, offers services for older adults that may include:

  • Adult day primary care (including doctor, recreational therapy, and nursing services)
  • Dentistry
  • Emergency services
  • Home care
  • Hospital care
  • Laboratory/x-ray services
  • Meals
  • Nursing home care
  • Nutritional counseling
  • Occupational therapy
  • Physical therapy
  • Preventive care
  • Social work counseling
  • Transportation to the PACE center for activities or medical appointments

Most adults who participate in PACE are dually eligible for both Medicare and Medicaid.

Medicaid recipients don't pay a monthly premium for the long-term care portion of the PACE benefit.

Those who don't qualify for Medicaid but have Medicare pay a monthly premium to cover the long-term care portion of the PACE benefit and a premium for Medicare Part D drugs.

There's no deductible or copayment for any drug, service, or care that’s approved by the participant’s healthcare team.

More information about PACE, eligibility, and how to apply is here.

Supplemental Security Income

Supplemental Security Income (SSI) provides monthly cash assistance to individuals who are aged 65 and older, blind, or disabled, and have limited income and few assets. For seniors and their family caregivers, SSI can provide essential financial assistance to help cover living expenses. Effective January 1, 2024 the maximum benefit rate is $943 for an individual and $1,415 for a couple.

Recipients can use SSI payments for various needs, including home care, assisted living, or other essential expenses. To qualify for SSI, your family member must meet specific criteria related to age, disability, income, and assets. Their income can’t exceed the benefit amount set by the program. And their assets are capped at $2,000 ($3,000 for married couples). Some assets, like a primary residence or car, may not count toward this limit. The SSI application process involves verifying income and assets through the Social Security Administration (SSA).

More information about SSI and how to apply for the benefit is available here.

The Administration on Aging (AoA)

The Administration on Aging (AoA) is an agency that provides leadership and expertise on programs, advocacy, and initiatives affecting older adults, their caregivers and families. The AoA directs grant programs and promotes the development of home-based and community-based care for older adults. Some benefits of the AoA for seniors and their family caregivers include:

  • Critical Services: These are services that help older adults live independently with dignity, such as meals, in-home assistance, preventative healthcare, job training, transportation, and protection from abuse.
  • Support for Family Caregivers: The AoA allocates funding to state agencies to provide a range of services for family caregivers, including information, referrals, respite care, support groups, training, and supplemental services.
  • Home and Community-Based Services: These services aim to reduce the need for more costly care by providing home care, adult day services, case management, transportation, health promotion, and other supportive services.

Family caregivers can access the benefits offered by the AoA through various channels:

Eldercare Locator: Family caregivers can call the Eldercare Locator at 1-800-677-1116 or visit http://www.eldercare.gov to find help in our communities, including information on available services, support groups, training, counseling, referrals, and respite care.

Local Agencies: By contacting local agencies that receive grants from the AoA, such as Area Agencies on Aging (AAAs), family caregivers can access services like eldercare information, training, counseling, referrals, and respite care. Local AAAs can be found by googling “area agencies on aging,” visiting Eldercare.gov, or calling 1-800-677-1116.

AoA Website: The AoA's website provides detailed information for older adults and their caregivers. For example, a quick search on their site for “long term care" surfaced article topics including:

  • Who Will Provide Your Care?
  • Where Can You Receive Care?
  • State Programs
  • Planning for Dementia
  • Glossary of Long Term Care Terms

National Family Caregiver Support Program: This program provides grants to Area Agencies on Aging to offer families elder care information, training, counseling, referrals, and respite care. Again, family caregivers can locate the appropriate Area Agency on Aging through the Eldercare Locator or calling 1-800-677-1116.

Department of Veterans Affairs (VA)

The U.S. Department of Veterans Affairs (VA) offers benefits for older adults and their family caregivers. Veterans 65 and older may be eligible for a range of benefits such as disability compensation, pension, education and training, health care, home loans, insurance, Veteran Readiness and Employment, and burial services provided by the VA.

Additionally, the VA recognizes the importance of Family Caregivers in enhancing the health and well-being of Veterans under VA care. Several VA programs allow family caregivers to be paid for the care we provide to a family member who is a qualifying Veteran.

The VA programs below aim to support Veterans 65 and older, surviving spouses, and their caregivers by providing financial assistance, health care benefits, education and training opportunities, and other essential services to ensure the well-being of both the Veterans and their dedicated caregivers.

Program of Comprehensive Assistance for Family Caregivers (PCAFC)

This VA program provides various forms of support, including a monthly stipend, health care benefits, respite care, caregiver education and training, mental health counseling, and travel assistance. It also provides various benefits to help ease the financial burden on family caregivers.

More information about the PCAFC is here.

Aid and Attendance Pension Benefit (A&A)

A Veteran or surviving spouse who requires long term care can receive a monthly cash allowance which they can use to pay for in-home care, including care provided by a family member.

More information about the A&A is here.

Housebound Pension Benefit

If a Veteran or surviving spouse is unable to leave their home due to a permanent disability, they may be eligible to receive a monthly cash benefit. They can use this money to pay a friend or relative (other than a spouse) to provide in-home care.

More information about the Housebound Pension Benefit is here.

Veteran Directed Care (VDC)

A Veteran who is enrolled in the VA’s medical benefits package and requires skilled services and assistance with ADLs may be eligible for this new pilot program, which is available in 42 states, Washington DC, and Puerto Rico. The VDC program provides the Veteran a monthly budget to pay for the care they need, ranging from medical equipment to in-home care. Family caregivers, including adult children, grandchildren, spouse, or other relatives, may be paid out of this budget.

More information about VDC is here.

The Americans with Disabilities Act (ADA) National Network

The ADA National Network provides information, guidance, and training on implementing the ADA to ensure equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities. Family caregivers can access support from the ADA National Network through their publications, which support individuals with disabilities and their caregivers.

The National Institutes of Health (NIH)

The National Institute of Health (NIH) offers various benefits for seniors and their family caregivers through programs and services aimed at supporting caregiving and long-term care. Some key benefits include:

Caregiving Support: The NIH provides resources and information to help family caregivers effectively care for our loved ones while also taking care of ourselves. This includes guidance on advance care planning, Alzheimer's caregiving, long-distance caregiving, and long-term care.

Financial Assistance: The NIH assists individuals and caregivers with counseling and support related to Medicare, Medicaid, and other related programs. These programs can help alleviate the financial burden associated with caregiving by offering state-based services like home-based and community-based care, adult foster care, and personal care services.

Senior Health Insurance Program (SHIP): The NIH supports programs like SHIP, which offer free health insurance counseling services for Medicare beneficiaries and their caregivers. These services aim to provide guidance on Medicare, Medicaid, enrollment, drug plan information, and more.

National Family Caregiver Support Program (NFCSP): Established in 2000 under the Older Americans Act, the NFCSP aims to help family caregivers care for older adults in their homes for as long as possible. The services they provide include caregiver information, individual caregiver counseling, caregiver support groups, and respite care for caregivers of older adults. Adult family members caring for individuals aged 60 or older, caregivers of individuals with Alzheimer's, and older relatives caring for children or adults with disabilities are eligible for these services.

State Long-Term Care Ombudsman Programs

A State Long Term Care Ombudsman is an advocate who works to resolve issues related to the health, safety, welfare, and rights of individuals living in long-term care facilities. Ombudsman programs investigate and resolve complaints made by or on behalf of residents, provide information about long-term care services, represent residents before governmental agencies, and recommend changes in laws and regulations affecting residents. They address a range of complaints, including improper evictions, inadequate discharge/planning, medication administration issues, food quality, staff attitudes, and facility maintenance concerns.

If our family member lives in a nursing home, assisted living facility, or other residential care community, we can address any concern about their health, safety, rights, and welfare with our state LTC Ombudsman. The first step: google “[state] long term care ombudsman,” (eg: “Ohio long term care ombudsman”). Their website will have their contact information.

At RubyWell, we’re paving a path to financial stability for all family caregivers. Right now, you can access coupons for up to 80% off prescription prices with our prescription savings tool, and soon you’ll be able to discover unused Medicare Advantage Supplemental Benefits on our MA Benefits Navigator. Ultimately, we’re developing compensation solutions so that every family caregiver can be a paid caregiver. If you’d like to be among the first to hear about future products, join our waiting list.

Continue Reading:

Chapter 2: Resources for Family Caregivers

Chapter 3: Services for Family Caregivers

Chapter 4: Support Groups for Family Caregivers

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Introduction

At RubyWell, we’re paving a path to financial stability for all family caregivers. Our Family Leave Finder provides state-by-sate info on family leave laws. Soon, family caregivers will be able to make the most of a loved one’s health insurance benefits with our Medicare Advantage Benefits Navigator. And ultimately, we're developing compensation solutions so that every family caregiver can be a paid caregiver. If you’d like to be among the first to hear about future products, join our waiting list.


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Chapter 2: Resources for Family Caregivers
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Written by Suzanne Boutilier
Suzanne Boutilier has been working and writing in the caregiving space since 2021. She also helps her sisters care for their aging father.
Reviewed by Elyse Dasko
Elyse Dasko is a leading communications strategist in age tech, caregiving and the longevity market.