Can Primary Immunodeficiency Qualify as a Disability?

More than 500 medical conditions are classified as forms of primary immunodeficiency (PI), also called inborn errors of immunity (IEI). All PI conditions are rare and lifelong. Having PI means part of your immune system is missing or not working right. Many PI disorders are caused by genetic changes, and researchers continue to discover new ones.

Primary immunodeficiency makes it harder for your body to fight off infections, which can affect life expectancy for some people. You may get sick more often or have more severe infections than other people do. Treatment options for PI include regular infusions to help your immune system work better. These treatments may require frequent visits to a healthcare facility. The costs of these medications and visits can add up.

Some people with PI may qualify for disability benefits in the United States. You might qualify because of your symptoms, the side effects of treatment, or the time and effort your care requires. Here’s what you need to know.

Disability Benefits That Might Be Available for Primary Immunodeficiency

The U.S. has two main federal disability programs — Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). To qualify for these benefits, you must have a disability that significantly limits or prevents you from working.

What Is Social Security Disability Insurance?

SSDI provides benefits to people who have worked in jobs covered by Social Security and earned enough work credits. Work credits are based on covered wages or self-employment income, not whether you worked full time. Part-time work and self-employment can count if you earned enough credits. The number of credits you need depends on your age.

SSDI is funded through payroll taxes. If approved, you can usually start receiving benefits after a five-month waiting period from when the Social Security Administration (SSA) finds your disability began.

If you’ve already been disabled for at least one year, you may qualify for up to 12 months of back payments before the date you applied. Most people become eligible for Medicare after 24 months of SSDI benefits.

What Is Supplemental Security Income?

SSI provides benefits to people with disabilities who have little or no income and don’t meet the work history requirements for SSDI. If approved, you can usually receive benefits for the first full month after the date you applied, or, if later, the date you became eligible.

SSI back payments may cover the time between your application date and approval date if you were eligible during that period.

In most states, SSI eligibility also qualifies you for Medicaid. In some states, you have to apply separately. SSI eligibility criteria and Medicaid rules can vary by state.

Most states offer an SSI supplement (additional payment) to increase your benefit amount. The exceptions include Arizona, Arkansas, Mississippi, North Dakota, Tennessee, and West Virginia. Each state has its own rules for supplements.

SSI also has an asset limit. If you have more than $2,000 in assets as an individual or more than $3,000 as a couple, you may not qualify. The SSA provides a list of resources that count toward this limit.

Can You Get Both SSDI and SSI Benefits?

Yes, you can receive both SSDI and SSI if you have a qualifying work history and limited income and resources.

Qualifying for Disability Benefits

Primary immunodeficiency may qualify for disability benefits under the category of immune system disorders — specifically, immune deficiency disorders that aren’t caused by human immunodeficiency virus (HIV) or an autoimmune disease like rheumatoid arthritis, Sjögren’s disease, or systemic lupus erythematosus (SLE, the most common form of lupus).

There are several ways to qualify under this category. You may qualify if:

• PI causes certain serious infections.
• You’ve had a stem cell transplant.
• You have repeated symptoms or complications along with major limits in daily functioning.

These limits might include difficulty completing daily tasks, challenges in social settings or interactions, or problems starting and finishing activities. You may also qualify if treatment causes these kinds of problems.

Having a marked limitation doesn’t necessarily mean that you can’t perform a task at all. It may mean that you can’t do it independently, consistently, or well. It also doesn’t mean you must be hospitalized, confined to bed, or need skilled nursing care.

You’ll need documentation of your condition and how PI affects your daily life. Your medical records and medical history should confirm your diagnosis and show how infections, symptoms, complications, or treatments limit your ability to function.

You may also want to be evaluated by specialists who can offer more documentation to support your application.

Applying for Disability Benefits

Applying for disability benefits involves a lot of paperwork. The Social Security Administration offers a checklist of what you’ll need. Below is a summary to help you get started. Providing complete and accurate information can improve your chances of approval.

Information About You and Your Family

• Your full legal name, date of birth, and Social Security number
• Full names and dates of birth for your current or former spouses, plus dates of marriage, divorce, or death
• Full names and dates of birth for your children
• Bank account information

Medical Evidence About Your Primary Immunodeficiency

• Names and contact details for your immunologist and other healthcare providers familiar with your condition
• A complete list of current and past medications and other treatments, medical tests, blood work, and genetic testing, as well as any hospitalizations due to infections
• A description of how PI symptoms or treatment side effects affect daily activities like working, cooking, cleaning, and shopping

Employment, Education, and Training History

• A detailed work history from the past five years, including self-employment, foreign employment, and earnings
• Your highest level of education completed
• Any vocational or specialized training you’ve received

Documents

Depending on your situation, you may need documents such as these:

• Birth certificate
• Social Security card
• Proof of citizenship
• W-2 or other tax forms from the previous year
• Medical records related to your condition
• Proof of any workers’ compensation or other disability benefits you’ve received

You can apply for SSDI online if you aren’t currently receiving benefits on your own Social Security record, haven’t been denied disability benefits in the past 60 days, and have a medical condition that’s expected to last at least 12 months or result in death.

You can start an SSI application online, by phone, or through a local Social Security office. Anyone may apply for SSI, but approval depends on disability status, income, resources, and other eligibility rules.

Getting Your Application Approved

It usually takes six to eight months to hear back about a disability claim. About 38 percent of people are approved after their first submission. If you’re not, don’t worry. You can still appeal the decision — about half of people who get denied take this route.

The first step in the appeals process is called reconsideration. A different set of reviewers will go over your original application. About 15 percent of reconsiderations are approved.

If reconsideration doesn’t lead to approval, you can ask to have your case heard by a judge. About 51 percent of people who take this step are approved. Additional appeal levels are available if needed. Overall, about half of the people who meet the criteria for disability benefits eventually get approved.

If this process seems overwhelming, consider speaking with a disability lawyer. Some offer free consultations to help you decide if you have a strong case.

Talk to Your Doctor About Disability

If you’re thinking about applying for SSDI, SSI, or other disability benefits available in your country, start by talking with your immunology care team. They’ve likely helped others through this process and can give you medical guidance on what to expect and how to qualify. They can also start preparing the documentation you’ll need for your application. Having a knowledgeable doctor involved can improve your chances of success.

If you need to appeal a denied application, your doctor can continue to support you. They can help you explain your symptoms and how they affect your daily life, health, and overall well-being.

Join the Conversation

On myPIteam, people share their experiences with primary immunodeficiency disorders, get advice, and find support from others who understand.

Have you or someone in your family been diagnosed with a type of primary immunodeficiency? Let others know in the comments below.