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What Help Can I Get as a Caregiver?

Short starting map: What help can I get as a caregiver?

Start with four buckets:

  1. Local navigation: someone who knows what exists in your county.
  2. Respite, counseling, training, and support groups: help for you as the caregiver.
  3. Help at home: personal care, homemaker help, adult day programs, meals, transportation, safety changes, or respite.
  4. Benefits and work protection: Medicaid home-care pathways, leave from work, veterans programs, tax credits, food, utility, disability, or housing assistance.

This page is a map, not an eligibility decision. Official agencies and program administrators decide eligibility.

The first call

For older-adult or disability-related caregiving in the United States, start with Eldercare Locator: 1-800-677-1116 or eldercare.acl.gov. It can route you to the local Area Agency on Aging or Aging and Disability Resource Center.1

Ask about:

  • Respite care
  • Caregiver counseling or support groups
  • Benefits counseling
  • Adult day programs
  • Transportation
  • Meals
  • Home safety support
  • Legal or long-term-care navigation

What local caregiver support may include

The National Family Caregiver Support Program can fund information, help accessing services, counseling, support groups, caregiver training, respite care, and limited supplemental services through the aging network. Local availability varies.3

Family Caregiver Alliance uses a useful shorthand for early caregiver needs: information, respite, and support. If you are overwhelmed, name which of those three is missing first.2

What home help may include

Medicaid Home and Community-Based Services waivers let states provide long-term services and supports at home or in the community for people who would otherwise need institutional care. Covered service categories can include case management, homemaker services, home health aide, personal care, adult day health, and respite care.4

Some Medicaid programs also support self-direction, where the person receiving services or their representative can direct some services and workers. State rules decide who can be paid, what tasks are covered, whether family members are allowed, and whether there is a waitlist.5

What to gather before asking

You do not need every document before you call. Have the basics:

  • State and county
  • Age of the person you care for
  • Main diagnosis, disability, or functional need
  • Whether they need help with bathing, dressing, eating, toileting, walking, medications, or supervision
  • Insurance: Medicaid, Medicare, VA, private insurance, or none
  • What is breaking first: time, money, safety, transportation, paperwork, or your own health

When the referral leads nowhere

A referral is not an opening. NY Connects serves callers regardless of payment source, and that does not mean every referred program is available or that the caller is eligible.[^ny-connects-ltss] These are four possible reasons for a dead end, and each has a different next step.

The program exists but has no open slot. Federal rules let states decide how many people each waiver serves, so a waiver you qualify for can still be full.4 Ask to be placed on the waiting list, ask for the date you were added, and ask how the list is ordered and how often it moves.

You do not fit this particular program. States can target waivers by population, age, diagnosis, or level of care.4 Qualifying for Medicaid does not mean qualifying for a given waiver. Ask which other program covers your situation, and ask the agency to name the next one to try.

The service is funded but nobody is available to deliver it. Ask whether a self-directed option exists. Some Medicaid programs let the person receiving services, or their representative, recruit, hire, train, and supervise the workers who provide care. State rules decide who can be paid, including whether family members can be.5

A plan or agency said no. Get the reason in writing. For private health coverage, a denial notice must identify the claim, explain the reason, and describe the available appeal process, and you generally have 180 days after receiving it to file an internal appeal. You can authorize a caregiver, clinician, or advocate to file on your behalf.[^cms-coverage-appeals-2025] See Appeal a private health insurance denial. For Medicaid, federal rules require a fair-hearing process when an assistance claim is denied or not acted on promptly, and when certain benefits or services are reduced, suspended, or ended. The agency must tell you in writing how to request a hearing, whether you can request an expedited hearing, and whether services can continue while it is decided. You may represent yourself or use legal counsel, a relative, friend, or another spokesperson.[^medicaid-fair-hearings-42-cfr-431]

Ask for the written notice, the specific reason, the effective date, the hearing deadline, and the way to file. Follow the notice and your state agency process, and act promptly. If waiting could jeopardize life, health, or the ability to attain, maintain, or regain maximum function, ask whether an expedited fair hearing applies.[^medicaid-fair-hearings-42-cfr-431]

Ask for a second routing

Go back to the same front door with what you now know. The Eldercare Locator at 1-800-677-1116 routes to the local Area Agency on Aging or Aging and Disability Resource Center.1 In New York, NY Connects routes by county for personal care, daily living, housing, transportation, food, caregiver supports, and help applying for public benefits. Statewide: 800-342-9871.[^ny-connects-ltss]

Say what already failed. An illustrative report such as "The waiver has a two-year list" gives a navigator more to work with than "I need help at home."

Other no-cost routes:

  • SHIP for free health insurance counseling, and your state insurance division for insurance-regulator questions.[^acl-finding-local-services]
  • Your state Medicaid office for program and application questions.[^acl-finding-local-services]
  • Medicare's comparison tools for home health agencies and nursing homes.[^acl-finding-local-services]
  • A supports broker or counselor, plus information and assistance, are required elements of self-direction where a state offers it.5

When the honest answer is that nothing is available now

Sometimes there is no program. That is a real outcome, not a sign you searched badly. What still helps:

  • Get on every list you qualify for, even long ones, and write down the date.
  • Ask what would change the answer: income, a hospital stay, a new diagnosis, or a level-of-care reassessment.
  • Ask when the decision is reviewed again, and put that date where you will see it.
  • Bring the problem back to the front door when your situation changes.

This page does not decide eligibility. Program administrators do.

  1. ACL / Eldercare Locator. "Eldercare Locator home." Source -> ↩↩

  2. Family Caregiver Alliance. "Caregiving 101: On Being a Caregiver." Source -> ↩

  3. Administration for Community Living. "National Family Caregiver Support Program." Program -> ↩

  4. Centers for Medicare & Medicaid Services. "Medicaid Home and Community-Based Services 1915(c) waivers." Source -> ↩↩↩

  5. Centers for Medicare & Medicaid Services. "Medicaid self-directed services." Source -> ↩↩↩