Financial, Legal, and Insurance Planning

Employment and ALS: Deciding when and how to disclose an ALS diagnosis to your employer can be challenging, especially if you're still actively working. Factors such as your relationship with your employer and the nature of your job play a crucial role in this decision. It's essential to be aware of your work-related benefits before contemplating leaving your position, ensuring that you have a clear understanding of the relevant questions you may need to address.

Short Term & Long Term Disability Insurance: Many employers provide disability insurance as a protective measure in your employment benefits package, offering financial assistance if you are unable to work due to a non-occupational injury or illness. Short-term disability benefits typically last for approximately 3-6 months, providing a financial supplement ranging from 40-70% of your salary. In contrast, long-term disability coverage typically begins once the short-term policy period ends, extending for a specific number of years and covering around 60% of your salary. The details of employer-based disability insurance benefits can vary, so it's crucial to carefully review your policy for specific information about your particular 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. 

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. 

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. Learn more here.

Social Security Disability Income (SSDI) gives you monthly financial support if you can't work due to a disability. These funds come from your contributions during your working years. If you have enough work credits and meet eligibility requirements, a diagnosis of ALS automatically qualifies you for SSDI, even if you're under 65. The amount you receive depends on your past earnings and Social Security contributions. If you've worked for at least five of the last 10 years and paid taxes for 40 quarters (ten years) or more, you likely qualify.

When you apply for SSDI, you're also applying for Medicare, a national health insurance program for seniors and some disabled individuals. The ALS Disability Insurance Access Act of 2019 removed the five-month waiting period for SSDI, so benefits should be processed quickly if you're eligible. To check eligibility, visit your local Social Security Administration Office, the Social Security website, or call 1-800-772-1213. Have your essential information on hand.

If you don't qualify for SSDI due to a lack of work credits, you might be eligible for Supplemental Security Income (SSI) and Medicaid. Applying for SSDI automatically screens you for SSI benefits. SSI is a federal program providing benefits to those with limited income and resources. Medicaid, based on financial need, offers healthcare benefits to qualifying individuals.

Medicaid is funded by both the federal and state governments, and it has strict rules for who can qualify. The application process involves detailed forms that need to be filled out accurately. To improve your chances of getting coverage, follow the rules and take specific steps, like staying within income and asset limits.

• Medicaid in Oregon is known as the Oregon Health Plan (OHP). The Oregon Health Plan is a state and federally funded program that provides health coverage to eligible low-income individuals and families in the state of Oregon. Here are some key aspects of Medicaid (Oregon Health Plan) in Oregon:
  • Eligibility for the Oregon Health Plan is based on factors such as income, household size, and other criteria. Different populations, including families, children, pregnant women, elderly individuals, and people with disabilities, may qualify.
  • Long-Term Care: Medicaid, through the Oregon Health Plan, plays a significant role in funding long-term care services for eligible individuals. This can include services provided in nursing homes, assisted living facilities, and home- and community-based care.
  • Individuals can apply for the Oregon Health Plan through the Oregon Health Authority's online portal or by submitting a paper application. The application process considers factors such as income, household size, and other eligibility criteria. Learn more here.
• Medicaid in Washington State is called Apple Health. Here are key points about Medicaid (Apple Health) in Washington:
  • Apple Health Programs: Washington's Medicaid program includes various Apple Health programs that cover different groups of individuals, such as children, pregnant women, adults, and people with disabilities.
  • Medicaid, through the Apple Health program, plays a crucial role in funding long-term care services for eligible individuals. This can include services provided in nursing homes, assisted living facilities, and home- and community-based care.
  • Application Process: Individuals can apply for Apple Health online through the Washington Healthplanfinder website or by submitting a paper application. The application process considers factors such as income, household size, and other eligibility criteria. Learn more here. 

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 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. The Washington State Medical Association Advance Directive can be found here.

Physician Orders for Life-Sustaining Treatment: 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.                                                     

Body and Brain Donation Resources: Learn more about donating to the Oregon Brain Bank through Oregon Health Sciences University here. Learn more about the University of Washington's Willed Body Program here.

Health insurance helps pay for services from doctors, hospitals, prescriptions, and tests. Understanding it can be tricky, and prices and benefits often change each year. To make the most of your plan, find out what it covers and make sure you get all the benefits you're entitled to.
If you have questions about your coverage, reach out directly to your insurance company. Keep track of your calls, noting when you contact them, the representative's name, and the information they provide.
See if your policy allows for a case manager. They can assist in getting the answers you need and help you navigate interactions with others in the insurance company.
Understanding the details of your health insurance policy is crucial to ensuring you make the most of your coverage.

Here are key aspects to be aware of:
Coverage Details: Know what medical services are covered, including doctor visits, hospital stays, prescription medications, preventive care, and diagnostic tests. Review the policy documents to understand the scope of coverage.
In-Network Providers: Identify the healthcare providers, doctors, hospitals, and clinics that are considered in-network. Using in-network providers can result in lower out-of-pocket costs.
Out-of-Network Coverage: Understand the coverage, if any, for services provided by out-of-network providers. These services often come with higher costs or may not be covered at all.
Deductibles, Copayments, and Coinsurance: be aware of your deductible (the amount you pay before insurance kicks in), copayments (fixed amounts for specific services), and coinsurance (your share of the costs after the deductible).
Annual Maximums and Limits: Know if your policy has annual maximums or limits on certain services. Some policies may have caps on specific types of treatments or medications.
Prescription Drug Coverage: Understand how prescription medications are covered. Check the formulary (list of covered drugs), copayments for different tiers of medications, and if there are any restrictions on certain drugs.
Preventive Services: Learn about preventive services covered at no additional cost. Many insurance plans provide free preventive screenings and vaccinations.
Renewal and Changes: Policies can change annually. Review any renewal or policy change notices to stay informed about alterations in coverage, costs, or provider networks.
Appeals Process: Be familiar with the appeals process if a claim is denied. Know how to challenge denials and the steps to take to resolve disputes with the insurance company.
Emergency Coverage: Understand how emergency medical services are covered, especially if you require care out of your plan's network or during travel.
Coverage for Specialized Care: If you have specific health needs, such as maternity care, mental health services, or chronic conditions, check how these services are covered under your policy.
Case Manager or Point of Contact: Inquire if your policy offers a case manager or a specific point of contact for questions and assistance with navigating the insurance process.
Grace Periods and Premiums: Know the grace period for premium payments and the consequences of missing payments. Understand how premiums are calculated and when they are due.
Network Referrals and Authorizations: Check if your plan requires referrals or authorizations for certain services or specialists. Failure to follow these procedures may result in reduced coverage.

Life Insurance Considerations: Your life insurance policy may offer benefits that you can utilize.
Group Life Insurance: Group life insurance policies offered through employers or organizations may be available without the need for a medical exam. However, these policies often have coverage limits, and the coverage may end if employment or membership terminates.
Accelerated Death Benefits: Some life insurance policies offer accelerated death benefits, allowing policyholders to receive a portion of the death benefit while alive if diagnosed with a terminal illness. Check if this option is available in the policy.
It's important to note that the availability of life insurance options can vary, and the specifics of each case are unique. Consulting with professionals who specialize in insurance for individuals with ALS can provide personalized guidance based on the individual's health, financial situation, and specific needs.

Long Term Care Planning
In the case of ALS, the extent of long-term care needs can range from constant assistance with daily activities to occasional support. Long-term care options in home care services, nursing facilities, adult foster care, residential care (assisted living), and continuing care retirement communities.
While health insurance and Medicare help to cover hospital and physician care for illnesses or accidents, they often do not extend to long-term care expenses. If covered, it's typically for skilled care services and may be limited to a short duration, often around 100 days or less. Personal or family funds account for approximately 40% of long-term care expenses in Oregon.

Long Term Care Insurance
Long-term care insurance offers financial assistance for various care needs, encompassing nursing homes, adult foster care, assisted living facilities, and in-home care services. Obtaining such a policy can be a significant investment, often acquired directly from an insurance provider or as part of a life insurance plan. Generally, these policies address costs related to a person's care during a medical condition.
Most policies mandate that individuals need assistance in at least two Activities of Daily Living (e.g., eating, dressing, bathing, transferring). Premiums for long-term care insurance fluctuate and typically rise with age and health status. Individuals without a long-term care insurance policy before an ALS diagnosis are unlikely to acquire one afterward.
For those with a Long-Term Care Insurance policy, a thorough review of the policy is essential, including qualifying factors, benefits, and the elimination period (the required waiting period before the policy takes effect). Discussing this with your ALS Multidisciplinary clinic coordinator and/or Care Services Coordinator can provide valuable insights.

In the United States, medical tax deductions allow individuals to reduce their taxable income by deducting certain qualified medical expenses incurred during the tax year. However, it's important to note that not all medical expenses are eligible for deduction, and there are specific rules and limitations associated with this tax benefit. Here are key points to understand:
Deductible medical expenses generally include costs related to the diagnosis, treatment, mitigation, or prevention of disease or injury. This encompasses a wide range of expenses, such as doctor visits, prescription medications, hospital stays, surgeries, dental and vision care, mental health services, and certain medical equipment.

Given the complexity of tax laws, consulting with a tax professional or using tax preparation software can help ensure that you identify and maximize eligible medical deductions.

Learn more about medical dental expenses from the IRS.