For children with disabilities, there are two main programs that provide assistance if their parents aren’t financially able to cover the costs associated with the disability. Often, this is because they can’t afford health insurance or the premiums are too high because of the nature of the disability.
Most people know of Social Security as the nation’s retirement system. Once a person retires, they receive benefits based on a variety of factors including their work history. For children with disabilities, they may qualify for Supplemental Security Income (SSI). The parent or child applies for SSI through the Social Security office but the programs are different.
SSI is available to children who meet the disability requirements of the Social Security Administration. Also, don’t confuse SSI with SSDI. SSDI or Social Security Disability is a program available to workers who have accumulated enough work credits to qualify for disability benefits. Children are not eligible for SSDI although some children may qualify for benefits based on their parent or legal guardian’s SSDI status regardless of whether the child is disabled or not.
In addition, SSI benefits are available to children as early as birth until the age of 18. Once they reach 18 years of age, they have to qualify for SSI benefits based on the criteria of adults.
To be eligible, a child must have a condition that results in severe functional limitations and the impairment has lasted for at least 12 months or is expected to result in death. A child who is blind may meet eligibility requirements if they meet Social Security’s definition of blindness.
Compassionate Allowances (CAL) allow for rapid identification of diseases or medical conditions that meet Social Security’s standards for disability benefits. These might include cancers and other rare disorders that affect children that clearly fit the standards. CAL allows parents of these disabled children to receive help rapidly without the long wait times sometimes associated with determining eligibility.
SSI Benefit Amount
Once the child is deemed as being eligible for SSI, Social Security determines the monthly benefit amount based on the income of the parents since most children don’t have income. The income amounts are adjusted for inflation as needed by Social Security but are based on the number of parents and the number of children in the household. There are certain instances when these income requirements may not apply or are different.
Medicaid is a public benefit program that helps people who can’t afford healthcare or health insurance receive the care they need. Along with serving children with disabilities, Medicaid serves adults and children in foster care. Medicaid may also act as a secondary payer. Once a person’s primary health insurance policy stops paying, Medicaid can provide coverage for continuing care.
Although Medicaid is a federal program, some of the rules of Medicaid vary by state. Much like SSI, children must be a part of an eligible benefit group and live in a household with income less than the federal minimum guidelines.
However, Medicaid may also cover children with disabilities regardless of the income level of the family. If the family doesn’t qualify for Medicaid based on income, they must qualify based on their disability as defined by the Tax Equity and Fiscal Responsibility Act (TEFRA) of 1982. In general, the child must fit Social Security’s definition of disabled, be under the age of 19, and must have home care needs that cost less than care at a medical facility. If the child qualifies, families pay an income-based premium for Medicaid coverage.
Once the child is deemed eligible, Medicaid covers medical costs based on normal coverage guidelines.
Because states vary widely in how they administer coverage, contact your state Medicaid agency.
Sometimes, well-intentioned relatives or parents put a child’s eligibility for benefits at risk by designating them as beneficiaries of their wills, life insurance policies, or other financial accounts. Because these gifts count as assets, and these programs are income-based, the child may lose eligibility because of these awards.
If a family member wants to leave assets to a child with disabilities, alternatives like special needs trusts can be started. These trusts shield the assets from consideration when agencies are evaluating eligibility. Talk to an attorney specializing in these situations for help.
Expect the process of deeming a child disabled and figuring out benefits to take an extended period of time, but don’t let the frustration of going through the process deter you from going after the benefits that a disabled child rightly deserves.