Next Steps: Your Workplace, and The Benefits You’re Entitled To (this information is adapted from the websites of the Alzheimer’s Association, the US Department of Labor and the Social Security Administration)
Receiving a diagnosis while working
If you’ve been diagnosed with Young Onset (also known as Early Onset) Alzheimer’s while still employed, it is critical that you educate yourself about the benefits available to you through your employer and federal and state employment laws which provide another layer of benefits .
Employer Disability Insurance: Short and Long Term Disability
Many employers offer short and long term disability insurance. Short-term disability (STD) insurance is a benefit for temporary disability due to sickness or injury. It pays a percentage of your salary for a short period of time. Long-Term Disability Insurance (LTD) helps replace some of your income for an extended period when you cannot work at all or can only work part-time because of a disability. You usually must have been employed for a certain period of time before you qualify for benefits and the insurance plan must be in place before symptoms of Young Onset Alzheimer’s disease appear. Benefits paid out of an employer plan may be taxed as income. If you have purchased a personal disability policy on your own, then the benefits paid will be the amount specified in your policy. Personal disability policy benefits are not taxed as income.
Talking to your human resources administrator is critical to understanding and clarifying the disability benefits to which you are entitled. It may be helpful to have a spouse or friend be a part of the process. Below are questions to ask that can help ensure you maximize the disability benefits offered by your employer:
• What are my long and short term disability benefits?
• What is the percentage of my total salary that is provided through my company’s disability insurance? Can this change over time?
• What is the procedure to apply for disability benefits?
• When should I file my claim?
• At what point can I expect to begin receiving benefits? Is there a wait period?
• How long will the benefits last?
• Are there any factors that may change the benefit payment I receive?
• Should I take paid sick leave until that benefit is exhausted, before applying for long-term sick leave?
• What happens if my employment is terminated?
• Who is my company’s benefits administrator?
When researching your short and long term benefits, always read the employer’s benefits handbook. Be sure to keep a record of all communications with your employer and/or benefits administrator. It may be helpful to also contact your employer’s Employee Assistance Program (EAP), if they have one.
Family and Medical Leave Act
You may be able to use benefits offered under the Federal Family and Medical Leave Act (FMLA). The law covers employers with 50 or more employees. FMLA allows you to take off up to 12 weeks of unpaid leave each year for family and medical reasons with continuation of group health insurance coverage. Family and Medical Leave provides job security, but no compensation for lost wages while Short-Term Disability Insurance provides payment for lost wages while you are out. STD is primarily a monetary benefit that has little to do with job protection. There are scenarios where the STD and FMLA can run concurrently. Be sure to talk with your employer’s human resources department about your eligibility for FMLA, including any return-to-work requirements.
• Visit the Department of Labor website at DOL.gov and search for: FMLA
COBRA is a federal law that allows individuals to continue their health care coverage after leaving a job. COBRA refers to the Consolidated Omnibus Budget Reconciliation Act and is available to those who work in companies with 20 or more employees. Under COBRA, an employee may continue group plan coverage for up to 18, 29 or 36 months, depending on the circumstances, if he or she:
• Leaves the employer
• Has work hours reduced to the point that he or she no longer qualifies for the employee health plan
The COBRA-insured employee must pay the full cost of coverage, plus up to two percent to cover administrative costs.
• Talk with your employer’s human resources department about your eligibility for COBRA
• Visit the Department of Labor website at DOL.gov and search for: COBRA LINK
Health Insurance After Leaving Work
If you were diagnosed after you left your job, you may not have had the opportunity to take advantage of programs that continue your health insurance coverage such as COBRA.
Lack of health insurance for you and your family, and high out-of pocket expenses for medical care, can put a significant strain on your financial situation as well as access to the medical care you’ll need in the future. Some options for health insurance include Medicare (even if you are younger than 65) and health insurance plans under the Affordable Care Act.
Medicare is a federal health insurance program primarily for people 65 or older who are receiving Social Security retirement benefits. However it does offer insurance benefits for individuals who are younger than 65 and have received Social Security disability benefits for at least 24 months.
• Visit Medicare.gov for more information
Patient Protection and Affordable Care Act
People with Young Onset Alzheimer’s who don’t have access to employer-sponsored health insurance may be able to buy insurance through a federal or state exchange. Under the Patient Protection and Affordable Care Act, the federal government will now provide premium subsidies to low- and moderate income individuals to help them purchase insurance as well as subsidies to businesses that provide health insurance coverage to retirees aged 55 to 64. More important, insurance companies will be required to:
• Issue insurance to all individuals who want to purchase it, thus ending pre-existing condition exclusions
• Renew the policy to any enrolled individual wishing to renew;
• Maintain insurance for individuals who pay their premiums, thus ending the practice of rescinding the insurance coverage of high-cost individuals;
Visit https://www.healthcare.gov to learn more these health insurance plans.
You may be able to tap into financial resources from retirement plans, even if you have not yet reached retirement age. Retirement plans include Individual Retirement Accounts (IRAs), employee-sponsored pension plans, and annuities.
• You may be able to withdraw money from your IRA or employee-funded retirement plan before age 59 1/2 without paying the typical 10 percent early withdrawal penalty.
• Pension plans will typically pay benefits before retirement age to a worker defined as disabled under the plan’s guidelines.
• This money will usually be considered regular income, and taxes will have to be paid on the amount withdrawn.
• If withdrawals can be delayed until after you leave work, the income taxes due from the withdrawals will likely be less because you will probably fall into a lower income tax bracket.
Find out more about the benefits you’re entitled to with Young Onset Alzheimer’s: