If you are caring for a disabled child, you have a wide range of federal and state benefits available to you. These benefits change, but do not necessarily stop, once a child with disabilities turns 18.
If you are looking for an extensive list of benefits available to you or your family as a result of a disability, a great place to start is with the U.S. government website on disability services.1 Here, you will find lots of information on all the help you can access.
In this guide, we’ll look at a specific situation: a family caring for a child with a disability. We’ll look at the help available to such a family, and how this changes when the child reaches adulthood.
- If you are caring for a child with disabilities, you have a wide range of federal and state benefits available to you. One of the most important is Supplemental Security Income, known as SSI.
- Once a child with disabilities turns 18, they are considered an adult and their disability benefits will change.2
- If an adult’s disability was diagnosed before age 22, they may be eligible for Social Security Disability Insurance (SSDI). This is still considered a “child’s” benefit to the SSA, though, since it is paid on a parent’s Social Security earnings record.3
Family Benefits for Children With Disabilities
An important benefit for families affected by disability is Supplemental Security Income (SSI). This program provides monthly payments to people with limited income and resources. Children younger than age 18 can qualify if they have a medical condition (or a combination of conditions) that meets Social Security’s definition of disability. A young person’s income and resources must fall within the eligibility limits to qualify for this program.4
The amount of the SSI payment is different from state to state, because some states add to the federal SSI payment. The states that do not supplement SSI are Arizona, Mississippi, North Dakota, and West Virginia.5 Your local Social Security office can tell you more about your state’s total SSI payments, and the Social Security Administration (SSA) provides an online calculator that can help you work out how much SSI could be worth.6
In addition to SSI, the families of children with a disability might be able to access a range of other benefits:
- Social Security Survivor Benefits/Social Security Disability Benefits: If the parent of a child with disabilities retires, dies, or themselves is diagnosed with a disability, their child can receive support via their Social Security benefits.7
- Temporary Assistance for Needy Families (TANF): This program provides temporary financial assistance and other services to assist low-income parents in caring for their children in their home.8
- Supplemental Nutrition Assistance Program (SNAP): This program (formerly called Food Stamps) provides low-income individuals assistance with purchasing food through an electronic debit card. It is available for families who meet the household eligibility requirements, as determined by their state. SNAP is not limited to children or adults with disabilities, but there are special eligibility provisions for individuals with disabilities.9
- VA Pensions: The various VA benefits take into consideration whether the veteran has a dependent child. Veterans Aid and Attendance is a cash payment available to low-income veterans with disabilities, which is increased if the veteran has a dependent child.1011
- Medicaid: In most states, if a child with disabilities receives SSI, they are automatically qualified for Medicaid. In other states, the child may qualify based on meeting the income and resource requirements.12
- Medicaid Waiver: The waiver allows states to provide services to individuals who under ordinary circumstances would not be eligible for Medicaid. With a waiver, people can qualify for in-home care instead of going to a long-term care facility.13
- Children’s Health Insurance Program (CHIP): This program varies by state and is referred to by different names in each. It provides comprehensive health coverage, including dental care, to individuals under 19 whose families can’t afford private insurance but whose incomes are too high for Medicaid.1415
You can use the SSA’s online calculator that can help you work out what SSI payments you are entitled to as a family, and then apply for them online.6
Family Benefits for Disabled Adults
When a child with disabilities reaches 18, they are considered an adult. As a result, your family’s entitlement to disability benefits will change.
Some adults can continue to receive SSI. However, the amount they receive may change. This is because when they reach 18, the SSA no longer counts the income and resources of family members (except their spouse) when deciding if they meet the financial limits for SSI. They also apply the disability rules for adults, which are slightly different. In all cases, the SSA will review a person’s medical condition, normally within a year of them turning 18. In some cases, a person who didn’t qualify for SSI before they were 18 will qualify for it afterward.1617
An adult who has a disability that began before age 22 may be eligible for another type of benefit if their parent is deceased or starts receiving retirement or disability benefits. This is called Social Security Disability Insurance (SSDI). Though it is paid to adults, the SSA considers this a “child’s” benefit because it is paid on a parent’s Social Security earnings record.
In this case, the person with a disability is referred to as a Disabled Adult Child (DAC)—and may be an adopted child, stepchild, grandchild, or step-grandchild. In order to qualify for SS, the DAC must be unmarried, age 18 or older, have a qualifying disability that started before age 22, and meet the definition of disability for adults.
Though SSDI payments are linked to the parents’ Social Security eligibility, it is not necessary for a DAC to have worked to receive these benefits.3 SSDI benefits will continue as long as the individual has a disability, although getting married might affect their entitlement. However, some marriages (for example, to another DAC) are considered protected and don’t affect eligibility.18
SSA Disability work supports, such as the Ticket to Work program, can be valuable to adults living (and working) with a disability. These resources are designed to help people work to their fullest ability and retain access to SSI, SSDI, Medicaid, and Medicare for a period of time—sometimes indefinitely, based upon the beneficiary’s countable income and cost of medical care.19
A child already receiving SSI benefits or disability benefits on their own record should check to see if DAC benefits may be payable on a parent’s earnings record when they reach age 18. Higher benefits might be payable, and entitlement to Medicare may be possible.
Can I Get Paid to Care for My Child?
In some cases, yes. However, the situation is highly variable by state. The U.S. government provides a list of resources for carers where you can check if you are eligible for payments as a caregiver.20
How Much Is SSI for a Child With Disabilities?
Unfortunately, there is no straightforward answer here, because everyone’s situation is different. The SSA provides a detailed breakdown of the factors they take into account on their website.21
Can You Work While Receiving SSDI Benefits?
It depends on how much you earn. SSDI recipients can’t do what’s considered substantial gainful activity (SGA) and continue to receive disability benefits. In a nutshell, doing SGA means you’re working and making more than $1,350 per month in 2022 (or $2,260 if you’re blind).22 However, participants in the Ticket to Work program can earn money without losing eligibility for benefits.19
The Bottom Line
Families with children with disabilities are entitled to a wide range of benefits, including SSI. When a child with a disability turns 18, this will affect their entitlement to benefits, and it’s important to be prepared for this. The amount your family receives in benefits may increase or decrease.
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