A Plain-Language Guide to Disability and Caregiving Benefits in the U.S.

If you’re navigating disability or complex care, it can feel like your head is spinning before you even begin.

SSI. SSDI. Medicaid. Waivers. FMLA. ADA.

Families often tell us that in the beginning addition to filling out so, so many forms, the hardest part can be figuring out what these words actually mean, how they’re different from each other, and which ones are even worth looking into. Many of these programs sound similar, but they serve different purposes and follow different rules.

This guide is meant to slow things down.

Below, we define the most common disability- and caregiving-related benefits families encounter, in plain language, with links to trusted sources if you want to go deeper. This is not a complete list, and it’s not advice. It’s a starting point for understanding the landscape.

First, a Big Picture Distinction

One of the most confusing things for families is that some programs provide income, while others provide health coverage or services.

• SSI and SSDI are income programs. They provide monthly payments.
  
  
• Medicaid is a health coverage program. It helps pay for medical care and long-term supports.
  
  

Families often qualify for more than one, but they are not the same thing and are managed by different systems.

Supplemental Security Income (SSI)

What it is:
SSI is a federal program that provides monthly payments to children or adults with disabilities who have limited income and resources.

Who it’s for:
People with disabilities who meet strict income and asset limits, including many children with disabilities living at home.

How families often think about it:
SSI is needs-based. It does not depend on work history.

What families often use it for:
Helping cover basic living expenses like housing, food, or daily needs.

Learn more:
https://www.ssa.gov/ssi

Social Security Disability Insurance (SSDI)

What it is:
SSDI provides monthly income to people with disabilities who have worked and paid into Social Security, or who qualify through a parent’s work record.

Who it’s for:
Adults with disabilities who have a qualifying work history, or adult children with disabilities whose parent is retired, disabled, or deceased.

How families often think about it:
SSDI is earned through work credits. It is not based on current income or assets.

What families often use it for:
Replacing income when work is no longer possible due to disability.

Learn more:
https://www.ssa.gov/disability

H2: How SSI and SSDI Are Different

Families often hear these two mentioned together, but they are very different programs.

• SSI is based on financial need and does not require work history
  
  
• SSDI is based on work history and Social Security contributions
  
  
• Both provide monthly payments, but eligibility rules and payment amounts differ
  
  

Some people qualify for one, some for both, and many qualify for neither. Understanding which category you fall into can help clarify what to explore next.

Medicaid

What it is:
Medicaid is a joint federal and state program that provides health coverage to eligible individuals, including many people with disabilities.

Who it’s for:
Eligibility rules vary by state, but Medicaid often plays a central role in covering long-term services and supports.

How it’s different from SSI and SSDI:
Medicaid does not provide monthly income. Instead, it helps pay for health care, therapies, and long-term supports.

Some people qualify for Medicaid because they receive SSI. Others qualify through income-based or disability-based pathways that are separate from SSI or SSDI.

Learn more:
https://www.medicaid.gov

Home- and Community-Based Services (HCBS) Waivers

What they are:
HCBS waivers are Medicaid programs that allow states to provide services in home or community settings rather than institutions.

Who they’re for:
People with disabilities or complex care needs who meet state-specific eligibility criteria.

What families often use them for:
Support services that help individuals live at home or in the community. Availability, services, and waitlists vary widely by state.

Learn more:
https://www.medicaid.gov/medicaid/home-community-based-services

Paid Family Caregiving Programs

What they are:
Some states allow family members to be paid for providing care through Medicaid or other state programs.

Who they’re for:
Eligibility depends on the state, the individual receiving care, and the caregiver’s relationship to them.

What families often use them for:
Financial support when a family member provides significant day-to-day care.

Learn more:
https://www.usa.gov/disability-caregiver

Family and Medical Leave Act (FMLA)

What it is:
FMLA is a federal law that allows eligible employees to take unpaid, job-protected leave for medical or caregiving reasons.

Who it’s for:
Employees who meet specific work and employer size requirements.

What families often use it for:
Taking time away from work to manage care needs without losing their job.

Learn more:
https://www.dol.gov/agencies/whd/fmla

Americans With Disabilities Act (ADA)

What it is:
The ADA is a civil rights law that protects people with disabilities from discrimination in employment, education, and public life.

Who it’s for:
Individuals with disabilities and, in some cases, caregivers seeking reasonable accommodations.

What families often use it for:
Understanding rights related to accessibility and workplace accommodations.

Learn more:
https://www.ada.gov

Why This Is So Hard to Navigate

These programs were created at different times, for different purposes, and are managed by different agencies. Families are often expected to connect the dots on their own, even while managing intensive care responsibilities.

Feeling overwhelmed by the language does not mean you’re behind. It means the system is complicated.

A Final Note

Rules change, and eligibility varies by state and situation. For the most accurate information, always refer to official sources or qualified professionals.

If there’s a term or program you keep hearing but don’t fully understand, we’d like to know. You can always share feedback or questions at community@truly.care.

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