What a caregiver allowance is and who can receive one
Social Security does not have a program called a "caregiver allowance." What exists instead is the ability for certain family members to receive benefits on the work record of someone who receives SSDI — meaning they get their own monthly payment from Social Security, not a separate allowance paid to a caregiver.
The family members who can receive these payments are a spouse, ex-spouse (if married at least 10 years), or child under 19 (or up to 23 if in high school full-time). These payments are called auxiliary benefits, and they exist because Social Security treats disability the same way it treats retirement or death: the worker's family has a claim on their earnings record.
If you are looking for money to help you care for someone on SSDI, you may be thinking of a different program — such as Medicaid waiver programs, which sometimes pay family caregivers directly, or tax credits for dependent care. This article explains how family benefits work on an SSDI record, what they pay, and how they affect the person receiving SSDI.
Key Takeaways
- Family members can receive their own monthly Social Security payment based on a disabled worker's earnings record, but this is not a separate caregiver payment.
- A spouse of any age, an ex-spouse married at least 10 years, and children under 19 (or 23 if in high school) can each receive up to 50 percent of the disabled worker's benefit amount.
- The total paid to the entire family is capped at 150 to 180 percent of the disabled worker's benefit, so adding family members reduces what each person gets.
- Family members who work may lose part or all of their benefit if their earnings exceed the annual limit, currently around $23,400 for 2024.
- If you need direct payment for caregiving work, look into Medicaid home and community-based services waivers or your state's paid family leave program instead.
Who can receive benefits on a disabled worker's SSDI record
A spouse of any age can receive a benefit if they are caring for a child under 16 who is also on the worker's record, or if they are age 62 or older. A spouse who does not meet these conditions cannot receive a benefit, even if they are not working.
An ex-spouse can receive a benefit on the same terms as a current spouse, but only if the marriage lasted at least 10 years. The ex-spouse does not need the disabled worker's permission, and the disabled worker's current spouse (if any) does not affect the ex-spouse's right to a benefit.
Children can receive a benefit until age 19 if they are unmarried and not working. If a child is in high school full-time, the benefit continues until age 23. A child who is disabled before age 22 can receive a benefit for life, regardless of age, as long as the disability continues — this is called a disabled adult child benefit.
Stepchildren, grandchildren, and other relatives cannot receive benefits on the worker's record unless they were legally adopted by the worker before age 18 and meet the age or school-attendance rules above.
How much each family member receives
Each family member who is may have access to to a benefit receives up to 50 percent of the disabled worker's primary insurance amount (PIA) — the monthly benefit the worker receives. A spouse caring for a child under 16 receives 75 percent instead.
However, the total amount paid to the entire family cannot exceed 150 to 180 percent of the worker's PIA. The exact cap varies by the worker's birth year and the type of benefit (SSDI, retirement, or survivor benefits). When the family total would exceed the cap, Social Security reduces each family member's payment proportionally — a process called the family maximum.
For example, if a disabled worker receives $1,500 per month and the family maximum is 175 percent, the total paid to the worker and all family members combined cannot exceed $2,625. If a spouse and two children are also may have access to, Social Security divides the available amount among all four people, so each gets less than the full 50 percent.
Social Security recalculates the family maximum each year and whenever the worker's benefit changes. You can see the current family maximum on the worker's Social Security statement, or by calling Social Security at 1-800-772-1213.
How work and earnings affect family benefits
Family members who work may lose part or all of their benefit if their earnings exceed the annual earnings limit. For 2024, this limit is approximately $23,400 per year, but it changes each year. Social Security deducts $1 from the benefit for every $2 earned above the limit.
The earnings limit applies only to family members under full retirement age. Once a family member reaches full retirement age, they can earn any amount without losing benefits. For a spouse caring for a child under 16, the earnings limit does not explore at all — they can work and keep the full benefit.
Earnings include wages from a job, net income from self-employment, and some other forms of income. They do not include investment income, pensions, or unemployment benefits. If a family member is unsure whether their income counts, they should contact Social Security before the year ends.
How family benefits affect the disabled worker's SSDI
The disabled worker's own SSDI benefit does not change when family members receive benefits on the record. The worker continues to receive the full amount they were approved for. However, the worker's benefit counts toward the family maximum, so adding family members means less total money goes to those family members.
The disabled worker's SSDI also does not change if a family member works, loses benefits due to earnings, or stops receiving benefits for any reason. The worker's benefit is independent of what happens to the family members' benefits.
One important exception: if the disabled worker is also receiving Supplemental Security Income (SSI), the presence of family members on the SSDI record does not affect the worker's SSI. However, if family members are living in the same household and receiving SSDI benefits, their income may count toward the household's SSI limit. This is a complex rule, and anyone in this situation should speak with a Social Security representative.
How to request family benefits and what documents you need
A family member can request benefits by calling Social Security at 1-800-772-1213, visiting a local Social Security office, or explore online at ssa.gov. The disabled worker does not have to explore on behalf of family members — each family member can explore independently.
To explore, Social Security will ask for the family member's birth certificate, proof of citizenship or legal residency, and the disabled worker's Social Security number. If the applicant is a spouse or ex-spouse, Social Security will also ask for the marriage certificate and, if applicable, the divorce decree. If the applicant is a child, Social Security will ask for proof of the parent-child relationship.
Social Security processes the process and sends a decision by mail. If the family member is found to be may have access to, Social Security will issue a benefit card and begin monthly payments. The first payment usually arrives within one to three months of approval, depending on how quickly the family member provides documents.
When family benefits end
A spouse's benefit ends if the marriage ends in divorce (unless the ex-spouse rules explore), or if the disabled worker's SSDI ends. A spouse caring for a child under 16 loses the benefit when the youngest child turns 16, even if other children remain on the record.
A child's benefit ends when the child turns 19 (or 23 if in high school), marries, or if the disabled worker's SSDI ends. A disabled adult child's benefit continues for life as long as the disability persists and the disabled worker is still receiving SSDI.
If the disabled worker dies, family members do not lose their benefits — instead, the benefits convert to survivor benefits on the worker's record. The amounts and rules change slightly, but the family members continue to receive payments.
Other ways to receive payment for caregiving work
If you are looking for direct payment for the work of caring for someone on SSDI, Social Security family benefits are not the answer. Instead, explore these options:
Medicaid home and community-based services waivers exist in most states and allow Medicaid to pay family members to provide personal care, homemaking, or other support services. may be able to access and payment rates vary by state. Contact your state Medicaid agency or your local Area Agency on Aging to learn whether the person on SSDI qualifies.
Paid family leave programs in some states (California, New Jersey, New York, Rhode Island, and others) allow you to take time off work to care for a family member and receive a portion of your wages. These are not specific to SSDI but may help if you need to reduce work hours.
Tax credits such as the Dependent Care Credit may help offset the cost of care if you are paying someone else to provide it. The IRS website has details on who qualifies.
Frequently Asked Questions
Can a family member receive both SSDI family benefits and their own SSDI?
Yes. If a family member is also disabled and receiving their own SSDI, Social Security pays both benefits. However, the family maximum still applies to the household total, so the presence of the family member's own benefit may reduce what other family members receive on the disabled worker's record.
What happens to family benefits if the disabled worker goes back to work?
If the disabled worker's SSDI ends because they returned to work and no longer meet the disability definition, the family members' benefits also end. However, during the trial work period and extended may be able to access period, the worker's SSDI continues and so do family benefits. Social Security can explain these work incentives in detail.
Can an ex-spouse receive benefits if the disabled worker remarries?
Yes. An ex-spouse's right to benefits is independent of the disabled worker's current marital status. Both a current spouse and an ex-spouse can receive benefits on the same record at the same time, and both count toward the family maximum.
Do family benefits count as income for other programs like SNAP or housing information?
Yes, in most cases. Family benefits are counted as unearned income for means-tested programs. However, some programs have exclusions or treat family benefits differently. Contact the program directly to ask how they count SSDI family benefits.
What if the disabled worker and family member live in different states?
It does not matter. Social Security benefits are federal and work the same way regardless of where the worker or family member lives. The family member can live anywhere in the United States or, in some cases, abroad.