When a loved one is diagnosed with Creutzfeldt-Jakob Disease (CJD), life changes in an instant. This extremely rare and aggressive neurodegenerative illness progresses rapidly, leaving families grappling with profound emotional shock while facing an avalanche of practical demands. Between providing care, making end-of-life arrangements, and trying to understand complex insurance policies and benefits, it can feel like you’re navigating an impossible maze at the very moment you have the least capacity to do so. Our hope is that this blog can serve as a compassionate road map—offering clear guidance for filing and claiming disability and survivor benefits—so you can focus more on what matters most in those precious remaining moments.
1. Understanding Creutzfeldt-Jakob Disease (CJD)
Unfortunately, CJD is always fatal and there is no known treatment to cure or control the disease. On top of this, the life expectancy for CJD is typically short, with most patients dying within 6 to 12 months of symptom onset.
- Sporadic CJD, the most common form, accounting for about 85% of cases, has a median survival time of 4 to 5 months.
- Genetic (or Familial) CJD may have a slightly longer life expectancy, with some individuals surviving for up to 2 years.
- Acquired CJD, a rarer form of the disease, has a median survival time of about 13 to 14 months.
*It’s important to note that these are just estimates, and individual life expectancy can vary widely depending on factors such as the specific type of CJD, age, and overall health. Some patients may live for longer periods, while others may die more quickly.
Ultimately, CJD’s rapid progression leaves very little time to process what’s happening, let alone navigate confusing benefit systems. Understanding the nature of the disease, however, and how it’s recognized by benefits programs, can give you a head start in securing support quickly.
2. Filing for Social Security Benefits During Illness and After Death
If your loved one is still living, starting the social security disability (SSD) claims process right away can help ease financial strain and ensure they receive the support they deserve. The good news is that CJD often qualifies for expedited processing—known as a Compassionate Allowance—to reduce the waiting time to receive a disability determination for individuals with the most serious conditions.
When you are ready to initiate the claim, gather key documents—such as medical records confirming the CJD diagnosis, work history, and proof of income—and request expedited processing under the Compassionate Allowances program. You can begin your application online via the Social Security Disability application or by calling the Social Security Administration (SSA). You can locate your local SSA office here.
If your loved one dies before filing a claim, you will not be able to posthumously file a claim for SSD benefits for the decedent, but certain family members, including spouses, ex-spouses, children, or dependent parents—may still qualify for survivor benefits. You can apply for these benefits online or by calling the SSA.
If your loved one dies while their claim is pending, the claim can be continued by a surviving spouse, child, or parents of the applicant. The death will need to be reported to the SSA (usually, this is handled automatically by the funeral home, but if a funeral home isn’t involved or the applicant lived outside the U.S., you should contact the SSA directly to report the death).
If the claim is ultimately approved, the family member may be able to collect any benefits owed to the applicant prior to the date of death. If the applicant did not have a surviving spouse, parents, or children, their estate may be able to recover the benefits.
If your loved one dies while receiving SSDI benefits, the payments will stop and any benefit received for the month of their death or later must be returned to the SSA. Certain individuals, including a spouse, divorced spouse, child, or dependent parent of the decedent, may qualify for an ongoing monthly survivor benefit.
3. Private or Employer-Provided Short/Long Term Disability Insurance
If your loved one is still living, and if the individual was working when they developed symptoms of CJD and have since been forced to stop working due to their medical condition, they may be eligible to file for short- or long-term disability (STD/LTD) benefits. Coverage may be available through an employer-sponsored group plan or, if purchased separately, an individual disability insurance policy.
Each insurance company requires its own claim forms to initiate the process. (You can request a copy of these claim forms from the employer’s HR department or from the insurance company itself.) Typically, a disability claim involves three main components:
- Employee Statement: Completed by the disabled individual or their authorized representative, providing details about the medical condition and work limitations.
- Employer Statement: Completed by a human resources representative or employer contact, confirming employment status, job duties, and salary or pay rate information.
- Attending Physician Statement: Completed by the treating doctor, verifying the medical diagnosis, functional limitations, and expected duration of disability.
These forms should be submitted directly to the insurance company to formally start the claim. In addition, it is crucial to request and submit medical records for the relevant period, as these documents substantiate the disability claim and help ensure a smoother review process.
If your loved one dies while receiving LTD benefits, you should be aware that many LTD insurance policies include survivor benefits, designed to provide additional financial support to the insured individual’s beneficiaries (or their estate) if the insured passes away while receiving disability benefits. This means that if the individual is approved for LTD and dies during the benefit period, a payout may be made directly to their designated beneficiaries or estate, helping cover ongoing financial needs. To pursue these benefits, you will need to submit a copy of the death certificate to the insurance company. In Wisconsin, a death certificate can be ordered online.
If your loved one dies before filing a claim for STD/LTD benefits, it may still be possible for surviving family members to file a claim on their behalf posthumously. However, this process can be complex, and rules vary by insurer and policy type. It is strongly recommended to consult with an attorney who specializes in disability and insurance law to navigate these claims and ensure the family receives any benefits they are entitled to.
4. Defined Benefit Pension Plan
Many pension plans include a provision for a disability pension benefit, which allows participants who become disabled to begin receiving their pension earlier than the standard retirement age. This provision is intended to provide financial support when a disability prevents continued employment, even if the individual has not yet met the usual age requirement for pension eligibility. Typically, the plan will require proof of disability—often through medical documentation or an award of disability benefits from another source—before granting early pension payments under this benefit.
Additionally, most traditional pension plans offer some form of survivor benefit such that if you die before collecting your benefits, the pension may pay out a lump sum or make regular payments to your spouse of beneficiary.
To learn more about disability pension or survivor benefits that might be available, you should send a written request to the plan administrator for a copy of the pension plan document.
5. Defined Contribution Plans (401(k) / 403(b)) and IRAs
Many defined contribution plans permit a hardship distribution/withdrawal if the participant faces an “immediate and heavy financial need,” which often arises in the wake of a serious medical diagnosis, such as CJD. These funds can be used to pay your, your spouse’s, or your dependent’s medical or funeral expenses.
Moreover, if the participant making the hardship withdrawal is totally and permanently disabled, they can avoid paying the 10% early distribution fee, though the distribution will still be subject to regular income tax.
Additionally, when the participant dies, the vested portion of their retirement account balance will transfer to their designated beneficiaries. Accordingly, upon a CJD diagnosis, it is of the utmost importance to ensure an up-to-date beneficiary designation form is on file.
6. A Note about Life Insurance
When a loved one passes away from CJD, it’s important to review any potential life insurance coverage they may have had. If the decedent was employed at the time of death, contact their employer’s human resources or benefits department to see if they were covered under a group life insurance policy. Even if they were not employed when they passed, but their employment ended due to disability, their life insurance coverage may have been extended under a disability waiver provision—something worth confirming with the former employer or insurer.
In addition, check for any individual life insurance policies the decedent may have purchased privately, as these are separate from workplace coverage. If you aren’t sure whether your loved one had life insurance, you can use the National Association of Insurance Commissioner’s Life Insurance Policy Locator tool to find out. To use this tool, you need to enter the decedent’s date of birth, date of death, and social security number. Once located, begin the claims process promptly to ensure you receive the death benefits to which you may be entitled.
If your life insurance claim ends up being denied, request a written explanation from the insurer and talk with an attorney about filing an appeal. You can find more information and guidance on the National Association of Insurance Commissioners’ website.
7. Getting Help and Support
You don’t have to shoulder this alone. Whether it’s a legal advocate, a hospice social worker, or a support group that understands the unique pain of CJD, the right resources can lighten both the practical and emotional load.
- For information about social security claims or private or employer sponsored insurance claims, contact Hawks Quindel to speak with an experienced attorney.
- For emotional support and information on CJD, visit the Creutzfeldt-Jakob Disease Foundation
- For information about local resources, visit your county’s Aging and Disability Resource Center
- For information about palliative care, hospice, and end-of-life support, visit the National Alliance for Care at Home
8. Final Thoughts
There’s no easy way through this journey, but there are ways to make it less overwhelming. By taking each step at your own pace and leaning on available help, you can navigate the claims process while still focusing on honoring and remembering your loved one.
We hope this guide eases the weight of administrative tasks, allowing you to focus your energy on care, connection, and remembrance in the midst of an extraordinarily difficult time.
Attorney Jessa Victor, a shareholder in Hawks Quindel’s Madison office, specializes in disability insurance and employee benefit claims. Having lost her father to CJD in July 2025, she is uniquely aware of the devastating impact of this condition on the lives of the affected individual and their family members.
