Join NBTS’s campaign to raise awareness about the importance of biomarker testing and clinical trials for patients with brain tumors.
READ MOREPublished on June 28, 2024 in Educational Resources
For individuals newly diagnosed with a brain tumor, the sudden shift in health can bring not only emotional and physical challenges but also financial concerns. Patients and their caregivers may wonder if Social Security Disability Insurance (SSDI) is an option for them, but are unsure where to start.
NBTS’s comprehensive guide about SSDI answers commonly asked questions and empowers brain tumor community members with the information they need to understand the application process.
Social Security Disability Insurance provides monthly payments to people with disabilities that prevent or limit their ability to work. SSDI also grants access to benefits like Medicare, which can be critical for ongoing medical treatment and care.
For patients with brain tumors, who may have to leave their jobs and lose income and job-based health insurance as a result, these earned benefits can provide a lifeline during an uncertain and frightening time.
SSDI benefits are different from long-term insurance benefits a person may have from their place of work.
To qualify for SSDI, an individual must have a disability that meets the Social Security Administration’s (SSA) criteria, which means having a medical condition that prevents them from working and is expected to last at least one year or result in death. Additionally, the individual must have sufficient work credits, which are earned by working and paying Social Security taxes.
Both SSDI and Supplemental Security Income (SSI) pay benefits to people who qualify for Social Security’s definition of disability, but they cater to different groups within the disabled population, as the non-medical eligibility requirements are different.
SSDI benefits are based on an individual’s work history and the Social Security taxes they have paid over their working life, while SSI benefits are need-based and do not require a work history. Eligibility for SSI is determined by financial need rather than work credits. Generally, SSI is for individuals who earn less than $1,971 from work each month.
Receiving SSI benefits requires claimants to report their wages, other income, and changes to their resources or living arrangements on a monthly basis. Receiving SSDI benefits requires claimants to notify SSA if their work status or income changes or if there is a big improvement in their medical condition.
The time it takes the Social Security Administration to decide on a person’s disability application depends on several factors, such as how quickly they can obtain medical evidence from different sources, whether or not the patient needs to be sent for a medical examination, and the nature of the disability.
The SSA generally makes an initial decision 6-9 months after an application for disability has been submitted.
“If you have a condition that clearly meets Social Security standards for disability or a condition that appears on our Compassionate Allowances lists, we may be able to approve your case in a matter of days or weeks instead of months,” said Lydia Chevere, public affairs specialist with the Social Security Administration.
Claimants can check the status of their pending application within their Social Security account at SSA.gov/myaccount. Once their review has been completed, they will receive a letter in the mail with the decision.
The Compassionate Allowances program enables the Social Security Administration to make expedited medical decisions for people diagnosed with a condition that meets Social Security’s standards for disability benefits. In doing so, they can reduce the “waiting time to reach a disability determination for individuals with the most serious disabilities.”
Compassionate Allowance conditions primarily include certain cancers, adult brain disorders, and several disorders that affect children. Please visit SSA’s website for the most up-to-date list of qualifying compassionate allowances conditions.
At the time this blog post was published, there were several qualifying brain tumors: anaplastic ependymoma, astrocytoma (grades 3 & 4), atypical teratoid/rhabdoid tumor (AT/RT), ependymoblastoma (child brain cancer), glioblastoma, glioma (grades 3 & 4), malignant brainstem gliomas (childhood), medulloblastoma, and oligodendroglioma (grade 3).
“A claimant with a brain tumor could provide evidence establishing whether they meet the conditions of one of our listings,” Lydia explained.
A patient who does not have a brain tumor listed as one of the compassionate allowances conditions can still apply for SSDI benefits. They just won’t benefit from an expedited decision.
According to the SSA, “We encourage anyone who may be eligible for SSI or SSDI to apply as soon as they become disabled.”
Once a patient has received their formal diagnosis in a pathology report and it’s found to be one of the compassionate allowances conditions, it’s wise to start the process right away given the five-month waiting period. A conversation with their neuro-oncologist, oncologist, or medical oncologist about their prognosis helps when considering applying for Social Security Disability Insurance.
“While that’s a difficult conversation to have, it’s an important conversation to have because you are planning for the future,” said NBTS’s Patient Navigator Katherine Pahler, RN. “You’re planning not just treatment and symptom management, but the financial aspect plays a huge part. Having this conversation earlier on is important so you can pre-plan the possibility of needing financial assistance versus waiting until you need help further along in your diagnosis.”
The team reviewing the person’s application relies entirely on the evidence provided in the application. Medical records, test results, diagnosis, treatment history, and statements from health care providers are all needed for a patient’s application.
“What we tell a person applying for disability benefits is that they should provide the names, addresses, and phone numbers of all the doctors, hospitals, and clinics that have taken care of them and may have medical records related to the condition they’re applying for,” Lydia said. “In other words, the applications should list any medical source that has medical records and evidence of treatments that could help support their disability application.”
Ideally, the claimant or the medical source will provide SSA with an extensive medical record or treatment covering the entire period for which they may be entitled to disability benefits.
“We may require additional medical evidence if there’s not enough evidence or if the requested disability date is on a certain date, but the person was last examined a year prior to that date,” Lydia explained.
A provider statement describes the patient’s impairment and related limitations or annual restrictions with as much objective information as possible. It can include when the disability began and, if applicable, why and for how long the condition is likely to continue. Medication treatment doses and whether the person is going to some type of therapy can be helpful. In the statement, the provider can also describe what the patient can still do despite their medical condition.
“The most important thing is to make sure that they cite the specific medical evidence supporting the provider’s statement,” Lydia said. “What we do not want to see is a statement that says, ‘I’m confirming that John Doe is disabled.’ What we’re looking for is medical evidence, and there’s no medical evidence there [in that simple sentence].”
There is a five-month waiting period before SSA can begin paying SSDI benefits except for ALS. This waiting period begins on the date a patient’s disability started. Essentially, it starts the day the patient becomes unable to work due to their medical condition, which can be days, weeks, and even months before the patient files for benefits.
“The important thing to remember is that the day that your disability began — what SSA calls your onset date — is not the same as the date your claim for SSDI was approved,” Lydia said. “Depending on when your application is approved, you might not have to wait that long for your benefits to start.”
Example: A person living with a brain tumor applies for SSDI benefits in May. Fast forward to August and the Social Security Administration has made a decision on their disability application and approved their case. SSA determined the patient’s disability began in January, and they applied the five-month waiting period. The patient’s first check should have arrived in July. Because the SSA did not complete the application process until August, the SSA will pay the patient retroactively to July.
NBTS and brain tumor advocates across the country have urged Congress to pass the Stop the Wait Act (H.R. 6583 / S. 3575) to ensure patients with brain tumors and other patients with urgent financial and medical needs get the SSDI and Medicare benefits they have earned.
SSDI benefits are an important safety net for people with disabilities, but there are gaps in this system. Once a person stops working, they must wait five months before they are eligible to begin receiving their paid benefits. They also have to wait 24 months after that before they can enroll in Medicare.
The Stop the Wait Act directs the Social Security Administration to phase out the five-month waiting period to receive SSDI benefits and allows those uninsured or unable to afford health insurance to receive Medicare coverage immediately.
Thanks in part to the collective efforts at Head to the Hill 2023, NBTS’s signature advocacy event, NBTS helped secure 109 co-sponsors in the House and four new co-sponsors in the Senate for this important piece of legislation.
“Stop the Wait is important because we are patients with brain cancer,” said Molly, who is living with grade 3 astrocytoma. “While I know many people with 10 years of survivorship or more, the statistics of this diagnosis point to a much shorter life expectancy for many.”
Yes, a person can file for an appeal if their application is denied. The fastest way to file an appeal is at SSA.gov. The patient’s request for disability reconsideration must be made within 60 days of receiving the initial decision.
“A claimant has the option of submitting additional documentation,” Lydia explained. “When someone requests an appeal, we’ll give the case to another person to evaluate to ensure that whoever evaluated the case [initially] considered all of the medical evidence. Ideally, they will be submitting additional evidence.”
Molly received quick approval for SSDI benefits when she first applied following her grade 3 astrocytoma diagnosis. However, she received quite a scare when a review years later denied further coverage, so she had to submit an appeal at that time. She recommends being as comprehensive as possible in one’s appeal paperwork.
“The appeal is not the time to find the bright side, and that’s really hard for someone like me,” Molly said. “This is the time when you ask your doctors for help. I wish there was more understanding for patients if it involves the brain. I can put a barbell over my head, but I sometimes don’t remember what buttons to press on the elevator, and another participant has to press it for me, like at Head to the Hill last year.”
Yes, there is no limit to how many times a person can apply for Social Security Disability Insurance or Supplemental Security Income. The person’s case will determine whether it’s appropriate to file for an appeal — within 60 days of the decision — or to re-apply later.
SSDI benefits last as long as the person meets Social Security’s definition of disability and eligibility requirements.
A few things can cause one’s benefits to terminate, such as earning above substantial gainful activity (SGA), incarceration, and medical improvement.
“We are required by law to review the cases from time to time to verify that the applicant or beneficiary is still disabled,” Lydia shared. “Now, the frequency of the reviews depends on the nature and severity of the medical condition. If improvement is expected, we will review your case within the first 18 months from the date you became disabled. If improvement is possible, we will review the case within the first three years. If improvement is not expected, we’ll review your case every seven years.”
SSA will send a letter to the claimant when it’s time for a Continuing Disability Review (CDR). The claimant can complete the form online or return the paper form by mail.
“I will give my medical team a heads-up if I get a letter from SSDI stating that they want their update so I can schedule another scan,” Molly said. “It’s not just MRIs, but neuro-psych evaluations, EEGs, speech therapy, etc. Their provider should know that you’re asking for these tests for your SSDI review.”
Molly also suggests keeping paperwork, including medical records, handy to make it quicker to complete the necessary review form.
Upon reaching retirement age, a person’s SSDI benefits will automatically convert to Social Security retirement benefits.
According to the SSA, patients “must have worked for at least five of the last 10 years to qualify for disability.” Social Security work credits “are based on your total yearly wages or self-employment income.” Individuals can earn up to four credits per year.
The required wage or income amount to earn a work credit varies year by year. For instance, in 2024, a person would receive one work credit for every $1,730 of wages or self-employment income. Once a person has earned $6,920, they will have accumulated their maximum four credits for the year.
The number of work credits necessary to be eligible for disability benefits depends on the person’s age at the onset of their disability. Typically, 40 credits are needed, with 20 credits earned in the 10 years leading up to the start of the disability. However, younger workers may be eligible with fewer credits. This helpful SSA table provides an estimate for the number of years of work a person would need if they develop a disability at a certain age.
A potential applicant can open a My Social Security account online to see if they’ve worked long enough to qualify. Once they have completed the account creation process, the individual can view their online statement, which will provide an estimate for disability, retirement, and survivor’s benefits for themselves and their family. It will also show the number of credits that the patient needs to qualify for disability as well as the number of credits they already have.
Yes. If a person qualifies and starts receiving SSDI benefits, they can undergo a trial work period of up to nine months and still receive full disability benefits.
“They have nine months to try to go back to work within a five-year period,” Lydia said. “Now, it’s important for people to know that the nine months do not have to be consecutive.”
Example: A person has a craniotomy for a brain tumor and stops working while navigating their recovery, treatment, and required therapies. After nine months, they feel ready to return to work but have already started receiving paid SSDI benefits. They can try to return to work. If they realize they cannot work after a month or two, they stop at no risk to their benefits. A year later, after more therapy and time to recuperate, they can try to work again.
It depends. The key factor is the income a person earns from their part-time work.
According to the SSA, “if you continue to work, your condition must also limit you from earning income above an amount we call substantial gainful activity (SGA). In 2024, SGA is $1,550 per month, or $2,590 if you’re considered blind under our rules.”
If a person’s part-time job nets less than $1,550 per month, it likely won’t impact their eligibility.
“We have official rules and incentives that allow you to work without jeopardizing your benefits,” Lydia said. “This includes a nine-month trial work period, an extended period of eligibility to allow you to test your ability to work. Work incentives include continuation of benefits for a period of time while you’re still working, [and] Medicare and Medicaid continuation of coverage while you’re still working.”
SSA offers a program called Ticket to Work that helps with education, training, and rehabilitation to start a new line of work. Through it, they provide job search assistance and other employment support.
Individuals ages 18 through 64 who receive SSDI and/or SSI benefits because of their disability are eligible to participate in this free and voluntary program.
According to the SSA, “Ticket to Work connects you with free employment services to help you decide if working is right for you, prepare for work, find a job, or maintain success while you are working. If you choose to participate, you will receive services such as career counseling, vocational rehabilitation, and job placement and training from authorized Ticket to Work service providers, such as Employment Networks (EN) or your State Vocational Rehabilitation (VR) agency.”
Lydia shares that “Social Security is committed to making our programs, services, facilities, information, and communication technology accessible to everyone, and that’s in accordance with our regulations.”
SSA recently added a video appointment option to assist individuals with select administrative issues. According to Triage Cancer, “Video calls are also available for help with SSDI and SSI applications, redetermination appointments to review eligibility for benefits, overpayment of benefits, and to enroll in Medicare.”
Interested applicants can schedule a video appointment by contacting their local Social Security office or calling 1-800-772-1213. SSA explains, “If you are interested in a video appointment, the representative will determine whether video is an appropriate option for you. If video is not an option, we can conduct the interview over the phone or in the office.”
Customers who are deaf or hard of hearing can request a reasonable accommodation to ensure they have meaningful access to SSA’s processes and programs.
Options include:
Individuals who are blind or who have low vision can choose to receive notices in an alternative format, including Braille, CD, or large print. Most of their publications are also available in audio format.
SSA offers free interpreter services in more than 200 languages. Customers can request an interpreter by calling their toll-free number at 1-800-772-1213 or visiting a local SSA office.
According to the SSA, “If you need service in Spanish, press ‘7’ and wait for a Spanish-speaking representative to help you. For all other languages, stay on the line and remain silent during our English voice automation prompts until a representative answers. The representative will contact an interpreter to help with your call.”
Additionally, the SSA’s website offers online Spanish resources, including information on disability benefits.
Yes. A claimant can ask a friend, family member, or another personal contact to help them file for SSDI benefits. This person does not need to be appointed as an authorized representative to help them apply.
While a third party can help fill out the application, the patient must sign the completed application.
A claimant can appoint an authorized representative to act on their behalf in a more official capacity.
According to the SSA, “But if the person you are helping wants to officially appoint you as the authorized representative to do business with Social Security, you must submit Form SSA-1696-U4 (Appointment of Representative).”
“That is a very personal decision,” Lydia said. “It is not required, but claimants have the right to an attorney or an advocate as their representative.”
NerdWallet outlines what disability lawyers do, how much they cost, how they differ from a disability advocate, and what to look for in a disability lawyer.
“There are nonprofit organizations and attorneys that provide legal representation,” Lydia said. “Claimants can go to their local Social Security office, and they can provide a list of legal referral services and nonprofit groups that can either help them through the application process or refer them to somebody else.”
“Beneficiaries may have to pay taxes on up to 85% of their Social Security benefits if they file a federal tax return as an individual and their income exceeds $25,000,” Lydia explained, “or if they file a joint tax return and the combined income exceeds $32,000.”
Claimants worried about paying a large tax bill at once can request that taxes be withheld from their SSDI payment.
Children from birth until age 18 may receive Supplemental Security Income (SSI) if they qualify for disability and financial need. A child’s definition of disability per the SSA requires:
“A child may be eligible for SSI benefits beginning as early as the date of birth,” Lydia said. “A child may be eligible to receive [SSDI] benefits on a parent’s work record when the parent begins receiving benefits or dies.”
According to the SSA, childhood disability benefits are payable beyond age 18 if the disability begins before age 22.
“A child who is receiving benefits as a minor on a parent’s Social Security record may be eligible to continue receiving benefits up until age 18 or 19 if still a full-time student in high school or disabled prior to the age of 22,” said Lydia.
At 22, the patient must now meet the definition of disabilities for adults to receive SSDI benefits.
“They don’t need to complete any new application,” Lydia said. “We can convert them from either a child or a student to what we call CDB, which stands for childhood disability beneficiary, or DAC, disabled adult child, on the same Social Security number. With that said, they still have to meet the eligibility requirements for disability.”
A DAC does not need a work history to qualify for SSDI benefits as an adult. Since they are filing as a dependent, they qualify based on their parent/guardian’s earnings record.
Once approved for SSDI, an individual automatically becomes eligible for Medicare, but there is a 24-month waiting period. This two-year waiting period begins the month after their disability onset date, as determined by the SSA.
After the 24-month waiting period, the SSDI recipient will be automatically enrolled in Medicare. They will receive Part A (hospital insurance) and Part B (medical insurance). They also have the option to enroll in Part D (prescription drug coverage) and Medicare Advantage plans (Part C).
“Because there’s a premium for Medicare Part B, beneficiaries can decline Medicare Part B,” Lydia explained. “It is important for beneficiaries to know that if they do not enroll in Medicare Part B when they first become eligible, they may be able to sign up later. However, they may have a late enrollment penalty for as long as they have Medicare Part B, [and] they may have to wait until one of our designated enrollment periods, so coverage may be delayed.”
Expedited reinstatement (EXR) is a program that allows individuals who have previously received SSDI benefits to have their benefits reinstated quickly if their disability prevents them from working again.
To be eligible for EXR, the person must have received SSDI benefits in the past but stopped receiving them because they returned to work and their earnings exceeded the substantial gainful activity level. Additionally, their current disability must be the same as, or related to, the condition that initially qualified them for SSDI. The person must also request reinstatement within five years from the month their SSDI benefits ended due to work and earnings.
SSA notes that “provisional benefits can be paid when you request EXR. It will include cash payments and Medicare/Medicaid coverage. They usually do not have to be paid back if we deny your request.”
Expedited reinstatement offers a vital safeguard for SSDI beneficiaries, ensuring that if their disability worsens or recurs, they can quickly regain financial and medical support without undergoing the full application process again.
Social Security Administration’s Disability Starter Kit
Triage Cancer’s Disability Insurance Module
National Brain Tumor Society does not provide legal, tax, or financial advice. We strongly recommend that you consult professional advisors on all legal, tax, or financial matters. The content in this blog post is for informational and educational purposes only.
TAGGED WITH: insurance