Financial, Legal, and Insurance Planning

If you are working when diagnosed with ALS, it can be difficult to decide when and how to tell your employer about your diagnosis. Your relationship with your employer and the type of work you are doing are important factors to consider, and it is important to understand your work-related benefits before leaving your position so that you know what questions you may need to ask.  

Disability insurance is a safety net offered by many employers as part of your employment benefits that can help support you financially in the event you cannot work because of a non-occupational injury or illness. Short term disability benefits will typically continue for a period around 3-6 months, and supplements between 40-70% of your salary. Conversely, long-term disability typically begins after the short-term policy has elapsed and can last for a certain number of years and can cover around 60% of a salary. Employer based disability insurance benefits differ, it is important to review your policy for specific information about your plan.  

Oregon state’s paid family and medical leave program, Paid Leave Oregon, is a new program in Oregon that allows employees to take paid time off when they need to care for themselves or their loved ones during qualifying life events, such as a serious health condition. Under this new benefit, employees can take up to 12 weeks of paid leave in a 52-week period. During this time, an employee’s job is protected, and a percentage of their wages are paid while they are on leave. These benefits are scheduled to start  September, 2023. 

Washington State’s Paid Family and Medical Leave program allows most employees to receive up to 12 weeks of paid leave for a serious health condition or to care for qualifying family members with a serious health condition. Benefits provide a percentage of employees gross wages- between $100 and $1000 per week, while the employee is on approved leave. In order to take advantage of this program, you must have worked 820 hours during the previous 12 months. 

The Family and Medical Leave Act (FMLA) entitles eligible employees of covered employers (all business with 50 or more employees at sites within 75 miles of on another) to take unpaid job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave. You can find more information about FMLA here: https://www.dol.gov/agencies/whd/fmla   

There are laws in place that provide some protection if you choose to continue working. The American with Disability Act (ADA) makes it unlawful to discriminate in employment against a qualified individual with a disability. You can find more information here: https://www.eeoc.gov/publications/ada-your-employment-rights-individual-disability  

Social Security Disability Income (SSDI) provides monthly income for people unable to work due to a disability. These are the funds you have been contributing to over the many years you have worked. If you meet the qualifications for work credits and eligibility, a diagnosis of ALS is presumed eligible for SSDI, even if you are under the age of 65. It is a federal program and the amount of money you receive each month depends on how much you earned and paid into Social Security over time. If you have worked at least five of the last 10 years and paid taxes for 40 quarters (ten years), or more, you will likely qualify.  

When you apply for SSDI, you also automatically apply for Medicare, which is a national health insurance program for seniors and some disabled people. If you qualify for SSDI, you will automatically receive Medicare disability benefits. The ALS Disability Insurance Access Act of 2019 eliminated the required five-month SSDI waiting period, therefore, if eligible for SSDI, benefits should be processed quickly with no waiting period. To find out if you qualify for SSDI, visit your local Social Security Administration Office, visit the Social Security website or call 1-800-772-1213. When you call, be sure to have on hand your social security number, address, birth certificate, names and addresses of hospitals and physicians, medications, marriage information, dependent children’s names, addresses and social security numbers, employers over the last 15 years, and income.  

If you do not qualify for SSDI due to lack of work credits, you may be able to qualify for Supplemental Security Income (SSI)/Medicaid. When you apply for SSDI, you are automatically screened for SSI benefits. SSI is a federal program that pays benefits to individuals with limited income and resources. Medicaid is also based on financial need and provides healthcare benefits to those that qualify.  

Medicaid is jointly funded by federal and state governments and here are strict eligibility requirements. It can be a complicated process with foms that must be filled out accurately and completely. There are rules you must follow and many steps you can take to maximize your ability to qualify for coverage including caps on income and assets. When done properly, it is a good way to qualify for benefits while retaining your family’s financial security. It is highly recommended that you consult an experienced estate planning and elder law attorney to help you with Medicaid planning since benefits vary from state to state.  

• The Oregon Health Plan (OHP) is Oregon’s Medicaid and Children’s Health Insurance program and provides health care coverage for Oregonians who meet specific financial requirements.  
• The Apple Health Program is Washington’s Medicaid insurance program and provides health care coverage for eligible Washington residents.  

Important Resources and Websites:  

• Social Security Website: The United States Social Security Administration | SSA  
• Medicare Website: Welcome to Medicare | Medicare  
• A person who is denied benefits from Social Security has appeal rights with strict time limitations. Call the Social Security Administration Office for questions. 

• If you have questions about how to apply for Social Security Disability or Medicare, The ALS Medicare Resource Line provides free individualized case management assistance for people living with ALS and their family members. Request assistance online, or call 1-844-244-1306. 

Estate planning is the process of detailing what you’d like to happen to everything you own and other personal matters after you pass away. It involves outlining your goals and objectives, organizing your financial affairs, ensuring you will be cared for appropriately, planning the distribution of your estate, and communicating your intentions. By planning appropriately, you can ensure that your wishes and values are honored and the people or things that are important to you are protected. Candid discussions between family members and caregivers early in the process are essential to easing the burden for the family down the road. Below are the essential elements you will want to have in place: 

• Last Will and Testament- This document goes into effect when you pass away and details what will happen to your assets. Ownership can pass to specific family members, friends or charitable organizations. 

• Living Trust- A legal document that allows you, or a trustee you appoint, to transfer ownership or title to your assets into a trust, but still manage those assets through your lifetime.  

• Durable Power of Attorney- A financial power of attorney appoints someone to serve as your “agent” or “attorney-in-fact” to manage your financial and legal affairs according to instructions you provide. For these reasons, it is important that you talk with your chosen agent ahead of time to make sure they’re up to the task. 

• Healthcare Power of Attorney- A Medical Power of Attorney is a legally binding document that allows you to appoint someone you trust to make medical care decisions for you in the event you are unable to do so on your own. This document can be created with or without a lawyer, however, seeking legal advice can help to ensure that it is carried out the way you intend. 

• Advance Directive- Also known as a living will, an Advance Directive specifies the medical treatments and interventions you want when it comes to medical treatments or end-of-life decisions. You can use this document to appoint someone, such as a family member as your health care representative to make health care decisions for you when you are unable to do so. Filling it out can give you the opportunity to think through and plan accordingly as ALS progresses and can provide you with peace of mind. You can also use our chapter’s resource manual, “End-of-Life Planning for ALS” to accompany your Advance Directive. You can make changes to this document at any time.  

-The Oregon Department of Health Advance Directive can be found here:   https://www.oregon.gov/oha/ph/about/pages/adac-forms.aspx  

 -The Washington State Medical Association Advance Directive can be found here: 

  file:///C:/Users/ALSoregon/Downloads/hcpnw-dpoahc-2page%20(2).pdf  

• POLST- In Oregon and Washington state, the Physician/Portable Orders for Life-Sustaining Treatment (POLST) form is a medical form your doctor fills out with you and is designed to turn your wishes for treatment near the end of life into medical orders. This form indicates what types of life-sustaining treatment you want or do not want in the case of a medical emergency. 

• Funeral Instructions- You will want to decide ahead of time how you want to plan for final disposition, or how your body is disposed of after death. In Oregon, there are four primary options: burial, cremation, alkaline hydrolysis (also called water or flameless cremation), or natural organic reduction (also known as human composting). You may make these arrangements yourself or hire a funeral director. More resources for funeral planning can be found on Oregon Funeral Resources and Education website and on the Washington Funeral Resources and Education website.                                                     

*If you are interested in learning more about donating to the Oregon Brain Bank through         Oregon Health Sciences University, you can find information here.  

*If you are interested in learning more about the University of Washington’s Willed Body         Program, you can find more information here.  

• Memorandum of Gift- a document that outlines how you want personal items distributed such as family photos, collectibles, artwork, jewelry, etc.  

Health Insurance- Health insurance covers services from doctors, hospitals, prescriptions, and diagnostic tests and can be complicated to navigate. Every year plan prices and benefits usually change. It’s important to determine what services are covered under your plan, and to make sure you receive all the benefits you are due. 

If you have specific questions about your coverage, contact your insurance company directly. Make notes of when you contact them, the name of the representative you talk with, and the answers they give you. 

Ask if your policy allows for a case manager who can be helpful in getting you the answers you need, and in dealing with other people within the insurance company on your behalf. 

Some things you need to know about your health insurance policy: 

• How much the monthly premium will cost. 
• Deductible: How much will you have to pay out of pocket before insurance kicks in? 

• Whether the plan covers durable medical equipment (DME), such as ventilators or wheelchairs and if so, is there a annual maximum on DME? 
• Networks: Are your current doctors in the plan’s network? 
• What prescription drug coverage benefits do you have? 
• Whether your plan includes home health coverage, including a home health aide. 
• Whether your plan covers hospice care. 

If you have any questions or would like access to free, unbiased, confidential insurance support- please contact Oregon state’s Senior Health Insurance Benefits Assistance (SHIBA) or Washington States’s Statewide Health Insurance Benefits Advisors (SHIBA) program.  

Life Insurance- Your life insurance policy may have benefits that you can take advantage of. A little-known benefit is the ability to turn your life insurance into cash for use now. Many policies offer an option to get an advance on the death benefit, often called a “living benefit” or “accelerated benefit” if you qualify based on a diagnosis. This benefit may be included in the policy when it is purchased, but usually are offered as riders or endorsements to new or existing policies. 

Another option is called a “viatical settlement”, whereby you sell your life insurance for a lump sum payout. If approved, the viatical settlement company may sell the policy to a third party. 

Some life insurance companies charge additional premiums to add accelerated benefits to a policy, while others offer the benefit at no extra cost, but do charge if/when the option is utilized. Contact your life insurance company and inquire if accelerated benefits are available.   

In addition to individual life insurance policies, most people have a group life policy through an employer. Before you transition from your job, research how to take the policy.   

Long Term Care Planning  

With ALS, long term care needs can vary from around the clock care to only requiring some assistance with activities of daily living. Oregon leads the nation in providing alternatives to the traditional nursing home-type care. The different types of long-term care options are nursing home care, adult foster care, residential care “assisted living”, and hired in-home care services.  

Health insurance and Medicare helps by covering hospital and physician care for illness or accidents, but few health insurance carriers cover long-term care expenses. If they do, it is usually only for skilled care services and is often limited to a limited number of days (generally only 100 days or less). Approximately 40% of long-term care expenses in Oregon are paid from personal or family funds. 

Long-term Care Insurance- Long-term care insurance can help cover some long-term care expenses for all levels of care including nursing homes, adult foster care, assisted living facilities and in-home care services. A long-term care policy can be very costly and is typically purchased directly from an insurance provider or as part of a life insurance plan. In most cases, long term care policies cover the costs related to a person’s care with a medical condition.  

Most policies require that the individual require assistance in at least two areas of Activities of Daily living (ie. Eating, dressing, bathing, transferring, etc.). Premiums for long term care insurance vary and typically increase with age and health status. Typically, individuals who do not have a long-term care insurance policy prior to the diagnosis of ALS are unlikely to purchase one after the diagnosis.  

If you have a Long-Term Care Insurance policy, it is important to review the policy details including qualifying factors, the policy benefits, and elimination period (required period you may have to pay before the policy kicks in). It may be helpful to bring this up with your ALS Multidisciplinary clinic coordinator and/or Care Services Coordinator. 

Despite the many financial changes that come with a diagnosis of ALS, the government requirement to pay taxes does not change. Below are some things to consider as you plan for your future. 

Deductions 

Medical costs, including transportation costs to and from appointments, prescription drug co-pays, the purchase or rental of durable medical equipment, alternative medical care, and mental health expenses. All these expenses, including medical expenses not related to ALS, like prescription eyeglasses and dental care, are all deductible.  

Keep in mind that the deductions only apply to your unreimbursed out-of-pocket expenses and payments you have already made, not unpaid bills. Unpaid bills can’t be deducted until they are paid. 

Employment Taxes for In-Home Caregivers 

Payroll taxes must be paid if in-home caregiving of any kind is utilized. If the in-home caregiver is hired through an agency, then the agency takes care of payroll taxes and you simply pay the agency. On the other hand, if you hire an in-home caregiver directly, your tax responsibility will depend on whether they are considered an independent contractor or a household employee.  

If the caregiver is considered an independent contractor, then you do not withhold taxes from their paycheck. You will need to file a 1099 tax form if, over the course of a year, you pay them more than $600.  

If the in-home caregiver is considered a household employee, then you will be responsible for withholding payroll taxes from their paycheck and will need to issue them a W-2 at the end of the year.  

Important Tax Considerations 

If you have not earned any taxable income during the tax year, you most likely will not need to file a tax return, nor will you be required to pay any income tax. If you are experiencing a financial hardship due to ALS, then you can apply to be “currently not collectible by the IRS. This will not eliminate your tax debt, but it does mean that the IRS won’t penalize you for not paying your taxes.  

If you receive an accelerated benefits rider from your life insurance policy, then you will want to check with your tax advisor or accountant to see if the payout is considered taxable income. In most instances, this benefit isn’t taxable, but there are exceptions. 

Survivors of a loved one who has passed away will still be required to file a tax return on their behalf for any income earned before their death. 

Any inheritance left to survivors may subject to state and federal taxes. 

It is highly recommended that you seek the professional advice of an accountant, tax advisor or an estate planning attorney to determine what your tax burdens might be.