Planning for job accommodations and disability income
for people with idiopathic hypersomnia, narcolepsy type 1 or 2, or Kleine-Levin syndrome
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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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).
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.
A reasonable accommodation is one that:
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.
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:
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.
Here are examples of accommodations that may help you:
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.
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.
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.”
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.
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.
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:
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.
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 Aflac.com. 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.
Types of LTD policies:
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.
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 isn’t regulated by ERISA (Employee Retirement Income Security Act), which governs most employer-funded group insurance plans.
To learn more, visit NOLO’s web page “Differences Between ERISA and Individual Long-Term Disability Plans.”
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:
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.
It depends on your financial situation.
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:
To find out how much your benefit amount would be, visit ssa.gov’s my Social Security.
For more information, visit the SSA web page on Disability Benefits: How You Qualify.
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:
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:
For more information, visit the SSA web page on Supplemental Security Income.
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.
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:
The problems of waiting to file are:
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.
If you have applied for STD or LTD, the insurer may ask for an IME, which looks at:
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.
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:
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:
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:
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.
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.
You need to know:
This is very complex, so we encourage you to get help from a trusted accountant or tax advisor.
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:
2021 January – Anjel Burgess, Esq., HF Board Member – “Your Best Self: New Ways of Thinking About Disability”
Whether or not your disability income is approved, you can apply for other disability resources, such as:
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
2021 January – Anjel Burgess, Esq., HF Board Member – “Your Best Self: New Ways of Thinking About Disability”
Your Best Self: New Ways of Thinking About Disability – a presentation by Anjel Burgess, Esq. for the Hypersomnia Foundation’s virtual hypersomnia education event – held Saturday, January 30, 2021.
Anjel Burgess, Esq., of Burgess & Christensen in Atlanta, is a prominent disability attorney and HF Board member and has represented numerous people with IH who are applying for disability. She shares her observations of the emotional aspects of that journey, and how to manage those hurdles, whether or not you expect to apply for disability benefits.
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.
Bio: Attorney Anjel Burgess boasts impressive academic credentials and has developed a wealth of knowledge in the area of disability law. Attorney Anjel Burgess received her BA from North Carolina State University, an MA from the University of South Florida and her JD from Georgia State University. Prior to joining Burgess & Christensen, Attorney Burgess practiced civil litigation with an emphasis on insurance defense. Known for her excellence in representation, Attorney Burgess specializes in the areas of Social Security Disability Law for adults and children, Veterans Disability and Guardianships.
Attorney Burgess has been the featured speaker for several organizations, support groups, and the local bar association. She serves on the Board of Directors for PLAN of Georgia, an organization devoted to optimizing life for adults with mental illness and developmental disabilities. She is also a member of the Georgia & Cobb County Bar Associations, the National Organization of Social Security Claimant’s Representatives (NOSSCR) and the National Organization of Veterans’ Advocates (NOVA).