Last week, we heard a patient’s story on the financial difficulties and challenges that come with CHD. This week we hear from another heart warrior, who comes with a hopeful message. Deanna Power shares her expertise with CCHD, and how patients of all ages may qualify for SSI.
If your child has a congenital heart defect, he or she may be eligible for Social Security disability benefits. The Social Security Administration (SSA) offers monthly financial aid for people of all ages who have serious conditions or illnesses. A CHD will not automatically qualify with a diagnosis alone, but many children with heart problems are eligible for assistance.
Technical Eligibility for Disability Benefits:
All children under age 18 will qualify for Supplemental Security Income, or SSI. These benefits are only awarded to people with a severe financial need. This means that your income will be evaluated on behalf of your child. While the income limits are strict, the good news is the larger your family, the higher your overall monthly income threshold will be.
For example, a single parent with one child couldn’t earn more than $38,000 per year while still having a child qualify for SSI. A two-parent family of five could earn more than $55,000 per year and still be eligible. You can view a chart on the SSA’s website to determine your family’s specific monthly income limit.
Unfortunately, technical qualification is very challenging for SSI, and is the top reason for children with CHDs to be denied Social Security benefits. The good news is that once your child turns 18 your income will no longer be recorded by the SSA, even if your child still lives at home.
Medical Qualification for Disability Benefits:
The SSA maintains its own medical guide, known colloquially as the Blue Book. The Blue Book contains hundreds of listings that can potentially qualify for disability benefits. All listings for cardiovascular disorders can be found in Section 104.00 of the Blue Book. There are listings for heart failure, recurrent arrhythmias, and congenital heart disease. Here are some ways a child with congenital heart disease could qualify:
- Your child has hematocrit of 55% of greater, measured at least twice within a one-year timeframe, OR
- Your child’s blood/oxygen level is less than 90%, or your child’s resting arterial PO2 score is 60 Torr or less, OR
- Your child has dizzy spells, fainting, or other symptoms directly related to cyanotic heart disease, OR
- Your child is completely unable to exercise due to insufficient cardiac and pulmonary function
There are more straightforward listings in the Blue Book as well. For example, any child with a heart transplant will automatically qualify for benefits for at least one year after the procedure. A child on the wait list for a transplant will also always medically qualify under at least one Blue Book listing. Finally, any infants less than a year old who have a “life-threatening” heart problem requiring surgery will qualify until their first birthday (or longer), given that doctors expect the condition to continue to be disabling due to the recovery time or impairment after surgery.
The Blue Book listings for cardiac problems are complicated and best reviewed by medical professionals. Fortunately, the entire Blue Book is available online, so you and your child’s cardiologist can determine if your child might be eligible together.
Starting Your Application:
If you are applying for SSI benefits on behalf of a child, you’ll need to do so at your closest Social Security office. Call the SSA toll free at 1-800-772-1213 to make an appointment to apply in person. Once you complete the application, you should hear back from the SSA regarding your child’s claim within five months.
Once approved, you can focus on what’s important: your child’s health.
- SSI: https://www.ssa.gov/ssi/text-over-ussi.htm
- SSI Income Limits: https://www.ssa.gov/ssi/text-child-ussi.htm
- SSA Offices: https://www.disability-benefits-help.org/social-security-disability-locations
- SSA Blue Book: https://www.ssa.gov/disability/professionals/bluebook/104.00-Cardiovascular-Childhood.htm
Deanna Power is the Director of Outreach at Disability Benefits Help, an independent organization dedicated to helping people of all ages receive Social Security disability benefits. She’s currently thriving with Ebstein’s Anomaly w/VSD and is forever grateful for the Adult Congenital Heart Program at Boston Children’s Hospital. If you have any questions on how you or your child could be eligible for Social Security disability benefits, she can be reached at firstname.lastname@example.org