Planning for job accommodations and disability income

for people with idiopathic hypersomnia, narcolepsy type 1 or 2, or Kleine-Levin syndrome

Having idiopathic hypersomnia or a related sleep disorder, such as narcolepsy type 1 or 2 or Kleine-Levin syndrome, can affect your ability to work. You can ask for job accommodations to help you complete your work duties. If you can no longer work full-time due to your sleep disorder, you may be able to get income through disability insurance. Try to have a plan in place for getting accommodations or disability income before your health interferes with your ability to work.

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What are job accommodations?

A job accommodation is a change or adjustment that allows a person with a disability to better do their work duties. Employers often must let their employees with disabilities have reasonable accommodations under the Americans with Disabilities Act (ADA). 

What is a disability?

The ADA defines a person with a disability as someone who has a mental or physical impairment that substantially limits one or more major life activities or has a history or record of such an impairment. There are many major life activities, including sleeping, reading, concentrating, thinking, communicating, and more. Everyone involved in determining if you meet this definition of disability must ignore any positive (good) effects that treatment may have on your condition. 

What are reasonable accommodations?

A reasonable accommodation is one that: 

  • Doesn’t cause undue hardship on the employer 
  • Enables the employee to do their essential job functions

Accommodations should reflect possible needs on your worst day. You may not always need to use them, but it’s better to have a plan before a difficult situation comes up. 

Your needs may change depending on your role, responsibilities, symptoms, and treatments. If this happens, you and your employer can reevaluate and change your accommodations.

Do I need an employment lawyer?

Employment law and disability can be complicated. Consider meeting with an employment lawyer to get advice, ideally before asking for job accommodations or if your conversation about accommodations with your employer isn’t going smoothly. Some lawyers offer a free consultation, and you don’t need to tell your employer that you’re meeting with a lawyer.

To find a lawyer who knows about employment and disability:

Working with your employer

Usually, reasonable accommodation discussions are an “interactive process,” which means the employer and employee work together to come up with accommodations. Employers with less than 15 employees (small employers) are usually not required to give reasonable accommodations. However, do an online search of your state and local discrimination laws because they may help you get accommodations from a small employer. 

Examples of reasonable accommodations

Here are examples of accommodations that may help you:

  • Time to take 1 or more daily naps, as needed, including recovery time for severe sleep inertia
  • Providing a quiet, private space or room to take a nap
  • Time to take 1 or more daily breaks for physical activity, such as walking, to improve wakefulness
  • Flexibility in your work start and stop times
  • Using paid or unpaid leave (such as FMLA or sick leave) hours to cover time needed for accommodations, such as for breaks, late arrivals, or leaving early
  • A specific shift or schedule that works best with your symptoms
  • Working from home, either all the time, on certain days, or when symptoms are worse
  • Paying for rideshare or other transit accommodations if you can’t drive to work safely 
  • Recording meetings or reviewing job tasks with a supervisor in case of brain fog
  • Providing special devices, software, or equipment, such as a standing desk or under-desk bike, if sitting makes you sleepy
  • Assigning non-essential parts of your job to other employees so you can focus on what you do best

The Job Accommodations Network (JAN) is a service of the U.S. Department of Labor. You can find more job accommodation ideas specific to people with sleep disorders on the JAN sleep disorders web page.

When should I ask for job accommodations?

There’s no single rule that applies to everyone. However, it’s often a good idea to ask as soon as you know your disorder is interfering, or may interfere, with your essential job duties. 

Asking for accommodations doesn’t mean you’re letting your hypersomnia sleep disorder take control of your life. It means you’re being smart and working with your symptoms to do your job well.

Before you start a job

You may know that you need accommodations before you even start a job, during the hiring process. Consider meeting with an employment lawyer before you start your job search. You may find some helpful advice on the U.S. Equal Employment Opportunity Commission’s web page “Disability Discrimination and Employment Decisions.”

While you’re in a job

It’s critical that your employer knows about your disability and need for accommodations before they start the process of terminating (firing) or disciplining you. If you don’t notify your employer of your disabling condition, they can terminate you and rightfully claim they didn’t know about your disability. 

How do I ask for job accommodations?

Consider meeting with an employment lawyer before you start this process. You may find some helpful advice on Equip for Equality’s web page “Requesting a Reasonable Accommodation with Template Letter.”

When you ask for accommodations, be clear about what you need and why. Be confident that you’re a valuable employee and accommodations will help you bring your best self to work. 

Job accommodation resources

  • State vocational rehabilitation agencies may arrange for a vocational (job) counselor and provide other supportive services 
  • Workplace Fairness is a non-profit employee rights organization that gives free information about issues such as hiring, firing, discrimination, wage issues, and harassment
  • Disability:IN’s “Inclusion Works” web page has resources for employment, internships, inclusion programs, and other opportunities for job seekers with disabilities
  • Disability:IN’s “NextGen Leadership Program” matches college students and recent grads with disabilities to mentors from Disability:IN’s corporate partners across all industries like Google, JPMorgan Chase, Microsoft, Boeing, and Pfizer

What is disability insurance?

If your symptoms become so severe that you cannot work, you will lose your source of income. Disability insurance protects you from this loss by paying you a portion of your previous income.

Find out about the disability insurance available to you and set up your plan as early as possible, ideally before any of your symptoms make it difficult to work

Sometimes people start to have severe symptoms and must leave their job or reduce their hours before they get disability coverage and qualify for benefits. This causes them to lose critical income and health insurance coverage. 

Learn what’s needed to have a successful claim so you can gather important information while you’re still working, just in case you ever need to file.

There are many types of disability insurance. On this page, we’ll cover these 4:

  • Short-term disability 
  • Long-term disability
  • Social Security through the Social Security Disability Insurance (SSDI) program (also called Disability Insurance Benefits, or DIB)
  • Social Security through the Supplemental Security Income (SSI) program

Specific information, such as the definition of disability and the amount you’ll be paid while on disability, depends on the plan. Read your plan policies carefully. Although Social Security programs are the same for everyone, short- and long-term disability policies vary from one policy to the next. 

Short-term disability (STD)

  • Often available through your employer
  • You’ll usually get payments of between 20% to 60% of your usual income (you may be able to pay extra for a higher portion)
  • Usually starts to pay you 1 to 30 days after you become disabled
  • Often lasts 3 to 6 months
  • You’ll still have health insurance through your employer

If your employer doesn’t offer STD, you may be able to buy a plan through an insurance company like Aflac. Learn about plans at In this case, you’ll have to qualify on the basis of your health. If you already have a hypersomnia diagnosis, the plan may not cover you for this condition.

If you can’t get an STD policy or you think the payments will be too low to cover your expenses, you’ll have to use your savings. It’s a good idea to save an emergency fund to cover your living expenses for 6 or more months.

STD policies give financial help for short-term absence from work, such as due to accidents or complications in pregnancy. For long-lasting (chronic) conditions leading to possible permanent absence from work, long-term disability insurance is likely to be a better investment.

Long-term disability (LTD)

  • Often available through your employer
  • You’ll usually get payments of between 20% to 60% of your usual income (you may be able to pay extra for a higher portion)
  • Usually starts to pay you 30 days to 1 year after you become disabled 
  • Often lasts 2, 5, or 10 years, or until retirement
  • May require you to also apply for SSDI or workers’ compensation programs and lower your LTD benefit by the amount you get from these other programs

Types of LTD policies: 

  • Own occupation — defines disability as the inability to work at your own regular occupation
  • Any occupation — defines disability as the inability to work at any occupation 
  • Hybrid — may include the “own occupation” definition of disability for the first few years, and then changes to “any occupation” 

An “own occupation” policy protects you better than an “any occupation” policy. For example, if you’re an accountant who can no longer work as an accountant, an “own occupation” policy would pay you benefits. An “any occupation” policy would not pay you benefits if you could do any other type of work, even if your income from that work was much lower than you made as an accountant.

What’s the difference between private LTD and LTD through my employer?

Private LTD policies are also called individual LTD policies because you buy them yourself, without help from your employer. They’re usually better than employer LTD policies in several ways, but there are some downsides.

Private LTD policies often have coverage that’s more flexible to your situation
  • More likely to be “own occupation” or “hybrid”
  • More likely to offer a higher portion of your usual income
  • Often offer policy add-ons (riders), such as:
    • Partial disability, which pays you a portion of your full benefits if you’re no longer able to work full-time but could still work part-time
    • Longer “own occupation” time periods
  • Portable (you can take it with you) when you change jobs, including changing to self-employment
  • May cover a portion of your income when you’re between jobs
  • You pay premiums with income that already has taxes taken out of it, so any LTD benefits you get are tax-free 
  • Can supplement LTD through your employer, giving you better coverage
  • Less likely to subtract any SSDI or workers’ compensation payments from your LTD benefits
Private LTD coverage is more likely to pay your claim and pay it quickly

Private LTD isn’t regulated by ERISA (Employee Retirement Income Security Act), which governs most employer-funded group insurance plans.

  • ERISA laws strongly favor the insurers and usually make it more difficult and time-consuming for you to get your benefits.
  • If you become disabled, having a private LTD policy can mean you wait just weeks or months for your private policy benefits instead of waiting years for employer policy benefits. ERISA-governed employer LTD policies and SSDI benefits are more likely to involve lengthy appeals and legal battles. 
Private LTD policies have some downsides
  • Often cost more
  • Usually require you to qualify on the basis of your health, so it’s a good idea to buy your policy when your health and treatment are at their best

To learn more, visit NOLO’s web page “Differences Between ERISA and Individual Long-Term Disability Plans.” 

What should I do if a private LTD insurer wants to exclude my hypersomnia disorder?

If you already have a diagnosis of idiopathic hypersomnia (IH) or a related sleep disorder, it’s possible that your private LTD policy will exclude that diagnosis. Your policy won’t pay benefits if you can’t work because of any diagnosis listed in your policy as excluded.

Even if the policy excludes your sleep disorder, you may still want to consider buying a policy because it would cover other disabling conditions that are very common:  

  • The 3 most common reasons for LTD claims are musculoskeletal disorders (such as arthritis), cancer, and injuries
  • Today’s 20-year-olds have a 1 in 4 chance of being out of work for at least 1 year (before normal retirement age) because of a disabling condition
  • Visit the nonprofit Council for Disability Awareness’s “Disability statistics” web page to find out more about the chances of becoming disabled

What should I do if my application for private LTD is denied?

Ask for partial approval, even if you’ve already decided you won’t buy the policy. This way, you won’t have a history of a denial, which can keep you from being approved for LTD coverage in the future. 

Should I pay my LTD premiums with pre-tax or after-tax dollars?

It depends on your financial situation. 

  • If you pay premiums with pre-tax dollars, any future benefits will be taxed. This costs less now but gives you lower benefits. This is usually how LTD through your employer is paid — LTD premiums are paid before taxes are taken out of your paycheck.
  • If you pay premiums after taxes have been taken out of your paycheck, any future benefits will be tax-free. This costs more now but gives you higher benefits. This is usually how private LTD is paid.

Social Security Disability Insurance (SSDI) Benefits 

You may qualify for SSDI if you’ve worked and paid Social Security taxes for a certain amount of time — usually 5 out of the last 10 years (there are exceptions for younger workers under age 31). 

If you qualify for SSDI, you’ll:

  • Get a monthly benefit payment, which is based on how much you made while you worked
  • Have to wait 5 months after your disability starts before getting your first payment
  • Get Medicare health insurance 29 months after becoming disabled (2 years after you get your first payment)

To find out how much your benefit amount would be, visit’s my Social Security.

For more information, visit the SSA web page on Disability Benefits: How You Qualify

How does SSDI work?

As you work and pay Social Security taxes, you earn up to 4 quarters of coverage (QC) for each year. A QC is the basic unit for determining whether you’re insured under Social Security. For 2024, you’ll earn 1 QC for each $1,730 that you earn, with a maximum of 4 QCs per calendar year. As soon as you earn $6,920 in 2024, you’ll already have your maximum 4 QCs for the year. This is true whether you earned that amount over months, weeks or even days. (To see the earnings needed in other years, visit SSA’s “Quarter Of Coverage” web page.)

To qualify for SSDI, you need to be fully insured by Social Security and have earned at least 20 QCs during the last 10 years. (Younger workers may qualify with fewer QCs.) The 20 QCs don’t have to be all in a row. 

Don’t wait to file disability, because a delay in filing your claim for SSDI raises your chance for losing benefits as QCs expire. To find out when your QC’s expire, call Social Security and ask “what is my date last insured?”

The SSDI program may also be available to the disabled adult children of a worker who is either eligible for SSDI, retired, or deceased. This benefit is available even if the disabled adult child has never worked. For more information, visit: 

Social Security: Supplemental Security Income (SSI)

You may qualify for SSI if you haven’t worked long enough to qualify for SSDI. To qualify, you have to prove that you are disabled and have limited income and financial assets. 

If you qualify for SSI: 

  • You’ll get a monthly payment, and the amount varies by person and by state
  • You’ll get Medicaid health insurance the month after you qualify for benefits

For more information, visit the SSA web page on Supplemental Security Income.

I’m a student with a hypersomnia. When should I start thinking about disability insurance? 

Start now. Students often don’t have many assets, so it’s a good idea to insure your future earnings. Since disability insurance usually pays you a percentage of your income if you become disabled, consider if working full-time instead of continuing school is a better fit for you based on your health.

How do I know if it’s time to apply for disability income?

Applying for disability income is also called filing a disability claim. Apply as soon as you or your doctor think that your symptoms are interfering with your ability to work and leading to your disability. By successfully filing for disability, you’ll keep getting some income even though you’re no longer able to work. 

You usually don’t need to have a specific or definite diagnosis to meet the policy’s definition of disability. If your doctor hasn’t yet given you a diagnosis but your symptoms are keeping you from being able to work, you may qualify for disability income.

Before you apply for disability:

  1. Get copies of your disability insurance policies from your Human Resources department, private insurers, and Social Security 
  2. Look up their definitions of disability, their applications, and their timelines to apply 
  3. If you may not be able to return to work after your short-term disability insurance benefits end, go ahead and also plan to file for long-term disability and Social Security disability

The problems of waiting to file are:

  • You may already be working fewer hours and making less money because of your disabling illness. This can lower your disability benefits, which are often based on your income.
  • Your employer may already be disciplining you and planning to end your employment. Trying to get disability income through an employer-sponsored disability income policy can be much more difficult after you’ve been fired.

How do I apply for disability income?

Gather proof to support your disability claim 

If you’re having any trouble doing your job due to your hypersomnia sleep disorder, start talking with your doctor and gathering proof in case you become disabled or are wrongfully terminated (fired). 

Proof of professional difficulties may include:

Letters or emails between you and your employer showing you asked for job accommodations
Time sheets or attendance records that show you’ve been absent a lot, often arrive late, or had to work fewer hours
Reviews that show your performance at work has been getting worse
School records such as accommodations, grades, and written evaluations

Proof of personal difficulties may include:

Your medical records, which you should regularly review for accuracy with your doctors 
Letters or forms from your doctors supporting your disability claim
Sleep journals that track awake times, alertness, naps, and other symptoms
A record of the treatments you’ve tried and their effects

This article written by medical experts can help prove idiopathic hypersomnia is a disability — Sleeping Their Lives Away: Recognizing the Unique Burden of Idiopathic Hypersomnia in Your Patients. If you’re filing for disability, you can give this document to your lawyer and your insurer.

What’s an Independent Medical Examination (IME)?

If you have applied for STD or LTD, the insurer may ask for an IME, which looks at:

  • Your medical condition, including the treatment that you need
  • If your condition is expected to be permanent
  • What impact your condition may have on your ability to work

Insurers may hire private investigators

If you have applied for STD or LTD, the insurer may find out more information on your ability to do daily activities, such as driving and grocery shopping, by having investigators follow and watch you. The investigators may take notes, photographs, and videos.

Work with a disability lawyer

It may be helpful to talk with a disability lawyer as soon as you start having trouble working due to your hypersomnia sleep disorder. You’re much more likely to get your disability income benefits approved if you have help from a lawyer.

The disability claims process is often long and complex, in part because insurers will save themselves money if they can deny your claim.

The lawyer can give advice on gathering proof of disability, which can be very complex. They may also help you decide if it’s time to file a disability claim and what to include in your claim.

Disability lawyers usually work on a contingency basis. This means they don’t get paid unless you do, and they usually give free consultations. Read more about contingency at the American Bar Association.

Some disability lawyers specialize in Social Security disability. Others specialize in long-term disability. NOLO offers some tips for “How to Find an Excellent Lawyer.”

Read these NOLO articles to learn more about long-term disability lawyers:

How do I find a lawyer who specializes in long-term disability?

We’re not aware of any organizations or websites that list disability lawyers who specialize in long-term disability. However, you maybe be able to get a referral from:

  • The American Bar Association or your state’s Bar Association
  • A member of a Facebook or other support group
  • A lawyer who specializes in Social Security disability

Filing for Social Security Disability Insurance (SSDI)

You can file online at the Social Security disability website, in person, or over the telephone at 800-772-1213. It can take up to 2 years to have your case approved.

There are usually 3 steps (called levels) in the filing process:

  1. Initial Level — You submit your application (or case), and the Social Security Administration (SSA) evaluates it.
  2. Reconsideration Level — If your case is denied at the Initial Level, you have 60 days to appeal. You can give more proof, and SSA reviews your medical information again.
  3. Hearing Level — If your case is denied at the Reconsideration Level, you have 60 days to Request a Hearing in front of a judge. You have a chance to explain how your symptoms affect your daily life, and how your treatments work (or don’t work) for you. The judge can ask questions to better understand your situation.

Of the people who get approved for Social Security disability, 65% (more than 6 in 10) have to go all the way to the Hearing Level to get approved.

What if I’m denied?

If you’re denied at the Hearing Level, you have the right to file an appeal with the Appeals’ Council. They review your case file and the Hearing decision to find out if the judge made any errors in judging your claim. If the Appeals’ Council finds that the judge’s decision is proper, then you have the right to file a lawsuit in Federal District Court to appeal that denial.

What do I need to know if my long-term disability (LTD) or Social Security claim was approved and I got a large lump payment covering months or years of income?

You need to know:

  • The large lump payment can change the amount of taxes you owe in the year you get it. This can also affect your tax credits for that tax year. For example, if you have a plan through the Health Insurance Marketplace, you may have to pay back any tax credits you used to help pay the plan premiums.
  • Some LTD policies subtract the amount you get from Social Security and workers’ compensation. You may need to pay back some of your LTD insurance payments when you get a lump payment from Social Security (or workers’ compensation).

This is very complex, so we encourage you to get help from a trusted accountant or tax advisor.

Get support

Filing for disability can be an emotionally draining experience. It can be hard to stay positive if your case gets denied. Know that you are not alone. Reach out to friends and family for support during this difficult time. Visit our “Quality of life tips” web page to find out more about how to get support.

Here are thoughts from some people who have gone through the process:

“Having to prove I’m disabled forces me to focus on my worst days and my worst symptoms. Thankfully, my therapist is familiar with this common difficulty and helps me stay personally focused on the positive so I don’t fall into despair while trying to get the financial help I need to survive.” — M.E., person with IH

“By the very nature of the disability processes we need and rely on, we’re forced to continuously focus on what’s wrong in attempts to prove that we’re disabled — something we don’t want to be. It’s ironic that the very system we need and rely on can be a chronic, demoralizing, and traumatic catch-22.” — B.B., person with IH

“It’s brutal. Months if not years spent on filling out endless paperwork about how compromised you are, when you‘re trying to focus on staying positive and not get completely depressed about all of the losses.” — L.B., person with IH

Watch a video with Social Security Disability lawyer Anjel Burgess who discusses the emotional aspects of disability:

Look into other disability resources

Whether or not your disability income is approved, you can apply for other disability resources, such as:

  • Disability discharge of student loans, meaning you wouldn’t have to pay student loans that are discharged 
    • For loans from the Federal government, visit
    • For other loans, contact your loan administrator
  • ABLE accounts — if you became disabled before age 26, visit the ABLE National Resource Center 
  • Disability parking permits, usually available through your state’s Department of Driver Services or Department of Motor Vehicles

More resources about disability

Watch this video:

2018 June – “IH and Disability: What You Need to Know” – Anjel Burgess, a disability attorney, discusses her work advising clients, including idiopathic hypersomnia patients, on their rights and obligations with respect to long-term disability.


Disability law review by Anjel Burgess, Esq.

Published Feb. 26, 2021 |
Revised Feb. 1, 2024
Complete update Jan. 19, 2024