Written by: Elizabeth Van Arsdall
Parents who have a child born with Down Syndrome and are having trouble making ends meet because of the additional expenses related to their child’s illness can apply for Social Security disability benefits for their child. The Social Security Administration (SSA) pays Supplemental Security Income (SSI), a type of disability benefit, to the parents of children with serious medical conditions. The money from SSI can be used to pay for any of the child’s living or medical expenses, but the parents must keep records showing that the money is spent on the child’s expenses.
Types Of Down Syndrome
Children born with Down Syndrome have either Trisomy 21 Down Syndrome or Mosaic Down Syndrome. Trisomy 21 is the more common type of Down Syndrome. Children born with Trisomy 21 have 3 copies of the 21 chromosomes instead of 2. Children born with Mosaic Down Syndrome are born with some cells with the correct number of chromosomes and others without. Because of that, children with Mosaic Down Syndrome typically have less severe symptoms than children with Trisomy 21.
SSI Benefits For Down Syndrome
In most cases, children born with Trisomy 21 automatically qualify for SSI. This is because non-Mosaic Down syndrome (chromosome 21 trisomy or chromosome 21 translocation) has its own listing in the SSA’s Blue Book. However, parents will still need to submit at least one of these reports with the application for disability benefits:
- A laboratory report of karyotype analysis signed by a doctor.
- A laboratory report of karyotype analysis not signed by a doctor with a statement by a physician that the child has Down Syndrome.
- A doctor’s report indicating the child has 21 trisomy or chromosome 21 translocation consistent with a prior karyotype analysis, with the distinctive physical features of Down syndrome.
- A doctor’s report indicating that the child has Down syndrome and has symptoms of Down Syndrome, including the distinctive physical features of Down syndrome. Parents should also include evidence indicating the child has an intellectual disability related to Trisomy 21.
Parents should also submit all of the child’s medical records and a letter of diagnosis with the application. The parents of children with Mosaic Down Syndrome can apply for SSI for their child, but the application process is a little different. For a child with Mosaic Down Syndrome to be approved for disability benefits, the parents need to submit medical records showing that the child meets the requirements in the SSA’s Blue Book for one of the conditions associated with Mosaic Down Syndrome like:
- congenital heart disease
- sleep-related breathing disorders, such as obstructive sleep apnea
- hearing loss, such as that caused by recurrent ear infections
- intellectual disability or low IQ
- thyroid disorders
Including medical documentation is the best way to improve the chances that the child’s application will be approved on the first try.
Financial Requirements For Social Security Disability
SSI was created to help parents struggling financially to care for a special needs child. As such, the SSA has set an income cap on the program as a qualification measure to make sure that families who really need financial assistance from SSI are able to get it. Parents need to submit either a W-2 or a Federal tax return for each adult in the household that works full-time to show that the total household income falls below the SSI asset limit cap before the child can be approved.