Supplemental Security Income (SSI) is the only source of federal income support targeted to families caring for children with disabilities, and it reaches only the lowest-income and most severely impaired children. These children live with conditions such as Down Syndrome, cerebral palsy, autism, intellectual disability, and blindness. Their vulnerable families face higher costs, more demands on their time, and more insecurity than families not caring for a child with a disability. SSI benefits help families pay rent and put food on the table. They also pay for a broad range of disability-related expenses, many of which are not offered by schools or covered by insurance — things like specialized therapies, medically prescribed diets, diapers for older children, and home modifications for accessibility.
For a child to qualify for SSI benefits, his or her family must have very low income and assets. Typically, a working family may qualify for a full benefit for a child with a disability if they earn up to about 100 percent of poverty. The benefit gradually declines as earnings rise, and eligibility phases out at about 200 percent of poverty. SSI’s benefits are modest, averaging $650 a month for a child with a disability.
Though 11 million American children have special health care needs, few meet SSI’s strict eligibility standards — either because their disabling conditions aren’t severe enough or because their families’ income and savings exceed the program’s low limits. Around 1.7 percent of all children receive SSI benefits. To qualify for SSI, a child must have a very serious condition that is backed up by medical evidence. Qualified medical professionals — physicians, licensed or certified psychologists, or certain other experts — must submit evidence of the disability; the opinions of the child’s parents or teachers do not suffice. Children can qualify based on mental or physical disorders, but only if they severely limit the child’s functioning. Mental conditions include autism, intellectual disability, schizophrenia, or bipolar disorder; physical conditions include cerebral palsy, muscular dystrophy, Down Syndrome, blindness, or cancer.
On January 21, Mattie Miracle had the opportunity to highlight the functional impairments of childhood cancer with the Committee on Childhood Cancer & Disability and the Social Security Administration. In addition, the long term consequences of these impairments were discussed in the context of the entire family system. It is the hope that our testimony provided further evidence for why all childhood cancer families need support in all forms..... medically, psychosocially, and financially.