Recently on our disability forum a user asked, “My child has been diagnosed with cystic fibrosis. We have very little money and I am afraid we will not be able to afford the necessary medical care to properly care for him. What are our options? Are there any federally funded programs that can help subsidize my son’s medical care?”
What is cystic fibrosis?
Cystic fibrosis is a hereditary disease which affects the lungs, liver, intestines, sinuses, and pancreas. Although the parents may not suffer from the disease, if the child inherits the gene for the disease the gene will direct the body’s epithelial cells to produce a defective form of a protein called CFTR (or cystic fibrosis transmembrane conductance regulator).
The production of this protein creates a disruption in the production of salt and water, allowing the mucus which is normally inside the lungs to become too hard and thick. Although this mucus usually helps protect against the accumulation of germs, CF sufferers have a higher incidence serious lung infections and long-term damage to the lungs. Other serious side-effects of this disease can include fatigue, weakness, decreased blood pressure, stroke, dehydration and death.
What is Supplemental Security Income (SSI)?
Now, you specifically asked about any federally funded program which might benefit your child. The good news is the Federal Government does offer a program called Supplemental Security Income (SSI). SSI is offered to the disabled, blind, and aged who are unable to work. SSI recipients must also have limited income and resource levels.
SSI is specifically offered to children who suffer from a severe mental or physical health condition which causes marked and severe functional limitations. There is no age requirement for SSI. It is important to note, however, that a child will only qualify for SSI if their parent’s income meets the income and resource limitations established by the Social Security Administration.
Winning SSI for cystic fibrosis
To win benefits for cystic fibrosis your child will need to meet the listing outlined in the SSA Listing of Impairments or prove their condition meets or equals a listing.
Cystic fibrosis is listed under 103.00 Respiratory System, Section 103.04 Cystic Fibrosis in the SSA Listing for children. Under this listing, the SSA specifies the severity of symptoms and requirements a child must meet.
For example, a child may meet the listing if their pulmonary testing meets certain predefined specifications, they have had persistent pulmonary infections, episodes of bronchitis, pneumonia which has occurred with a specified frequency, or the child has a growth impairment as defined under SSA Listing 100.00.
Medicaid and Supplemental Security Income (SSI)
Children who qualify for SSI benefits may, in many states, also automatically qualify for Medicaid. Each state’s process for awarding Medicaid benefits does vary, however, so it’s important to talk to the SSA to find out if you have to apply for Medicaid after receiving SSI or if your state will automatically award your child Medicaid medical benefits.
The good news is you are not alone; there is help for you. If your child suffers from a severe health condition, such as cystic fibrosis, and you have limited income and resources, there is a good chance that they may be awarded SSI benefits.