Introduction by Jonathan Agin, JD, Executive Director
As a childhood cancer nonprofit organization, the Max Cure Foundation (MCF) continually engages in the fight against this complex disease on multiple fronts. Since MCF’s inception, we have collectively funded over $960,000 for research purposes. Our team through, Richard Plotkin and Jonathan Agin, have effectively been engaged in working in Washington, DC to advocate for legislative and regulatory change. And finally, but certainly one of our most important charges, is our family assistance program known as Roar Beyond Barriers (RBB). Through the RBB program, we have directly provided over $425,000 in financial support to families experiencing financial difficulties while their child is on active cancer treatment, as well as military families with a child actively in treatment. In many instances, the financial difficulties that families endure as a result the diagnosis of a child with cancer are financially crippling. It is not unusual for a parent or both parents to have to take a leave of absence from work, thus leaving the family without income for a period of time. Unfortunately, as the bills mount, not only for treatment but also for living expenses, parents and caregivers fall further behind and one organization is not able to eradicate these financial hardships.
We have always believed that we are stronger together, working hand in hand with other organizations to alleviate as much of the financial stress as possible. We regularly interact with other organizations and refer families for additional support. We were fortunate enough to be contacted by Deanna Power, Director of Outreach, Disability Benefits Help who wanted to offer additional assistance and suggestions to help as many childhood cancer families as possible. Applying for Supplemental Security Income through the Social Security Administration is often perceived as daunting, time-consuming and too difficult a path to travel for additional income assistance. Deanna breaks it down and hopefully provides an easy roadmap for our families to seek as much assistance as possible. In the end, parents should be focused upon finding and implementing the most effective treatment possible to save their child. Having this channel available hopefully provides one more resource for families struggling with this tremendous fight. Thank you Deanna.
If your child has been diagnosed with cancer, the last thing that should be on your family’s mind is a medical bill. Fortunately, there might be financial assistance available.
Children with any form of cancer may meet the Social Security Administration’s (SSA’s) medical eligibility criteria for disability benefits, but medically qualifying is only part of the eligibility determination process. The disability program through which children receive disability is “need-based,” which means there are financial rules that must be met as well. If your child is approved though, you’ll receive monthly Supplemental Security Income (SSI) payments to help cover food, housing, and other necessities. In most states, children approved for SSI are automatically enrolled onto Medicaid.
Financial Reviews and SSI Benefits
With SSI, like most need-based programs, income and assets are reviewed as part of the eligibility determination process. Only certain financial sources count however. The SSA additionally only considers some of your household’s income as available to care for a disabled child, and family size comes into play when deciding eligibility. A child from a larger, low-income family has a greater chance for approval, since the family’s money must be stretched further to cover the needs of all family members.
A single parent with one child can only earn around $36,000 per year while still qualifying for SSI, but again, this income limit will rise if you have a spouse or additional children. The calculation of countable financial resources can be a bit complex and hard to understand. To get a general idea of how much you could earn, you can view a chart on the SSA’s website.
When you apply for SSI, an SSA staff member takes your information, puts it into their system, and determines if you meet basic eligibility rules for consideration. If you do, then the SSA will move on to obtaining medical records and other required documentation for reviewing your child’s claim for benefits.
Medical Evidence Requirements
To be found medically eligible for disability, your son or daughter’s medical records must either meet or closely match a disability listing in the SSA’s Blue Book. Pediatric cancer listings appear in Section 113.00.
Have your child’s doctor review the medical evidence requirements and work closely with your doctor to get any gaps in your child’s records filled. Medical documentation is the key to approval and a lack of sufficient evidence can get a claim denied that would otherwise be approved.
Certain pediatric cancers, like Neuroblastoma and Ependymoblastoma, are “automatically” eligible for benefits and for expedited review as part of the Compassionate Allowances (CAL) list. If your child’s cancer is a CAL list condition, medical approval is virtually guaranteed.
With a CAL condition, the SSA may even commence SSI payments under “presumptive eligibility” within just a week or two of you submitting your application. They’ll still need to obtain the appropriate medical records for approval, but presumptive eligibility ensures you have support payments as soon as possible.
Applying for Benefits
The disability application process for SSI involves a personal interview with an SSA representative. Interviews can be conducted over the phone, by calling 1-800-772-1213, or at your local SSA office. Either way, you’ll want to review the Child Disability Starter Kit before applying, as this will tell you what information and documentation is necessary for your appointment.
Most claims are initially denied, but don’t give up! You can file for reconsideration online and ask the SSA to look at your child’s claim again. More than 50% of applicants are eventually awarded benefits.