Amyotrophic Lateral Sclerosis (ALS): Financial Planning and Long-term Support
ALS is costly and devastating not only for people diagnosed with ALS, but for those who love them. Ability Central shares long-term financial and mental health support options for people with ALS.
By Ability Central
23 January, 2024
Amyotrophic lateral sclerosis (ALS) is a disease with massive financial, mental, and physical costs. Because of the disease’s rapid progression, people recently diagnosed with ALS must make long-term decisions for themselves and their families as soon as possible.
In this article, Ability Central answers your questions about long-term care for ALS, including:
- How quickly does amyotrophic lateral sclerosis (ALS) advance after diagnosis?
- What is the average financial cost of treating ALS?
- Does the Americans with Disabilities Act (ADA) cover ALS?
- Do people with ALS qualify for Social Security benefits?
- What other financial assistance does the US government offer people with ALS?
- What are the communication challenges that accompany ALS?
- Where can I get mental health assistance for ALS?
- Where can I find ALS support groups?
- Where can I get more information about ALS?
How quickly does amyotrophic lateral sclerosis (ALS) advance after diagnosis?
One of the most devastating things about ALS is how quickly the disease progresses.
The average life expectancy for someone with ALS is 3 to 5 years after diagnosis. 30% of people with ALS live for five years or more, and another 10-20% survive for ten years or more. However, many people with ALS find themselves fully dependent on caregivers in a fraction of that time.
In the rarest cases, some people with ALS go on to live for years or decades after diagnosis. For example, astrophysicist Stephen Hawking lived with ALS for 55 years before passing away at the age of 76.
However, most people with ALS—like Hawking—eventually lose the ability to speak, use their hands, or use other methods of communication. To that end, it is critical for people recently diagnosed with ALS to create a long-term care plan as soon as possible. Steps you and your loved ones take today can make decisions much easier in the future.
To learn more about the stages of ALS, see Symptoms and Stages of Amyotrophic Lateral Sclerosis (ALS).
What is the average financial cost of treating ALS?
The medical costs for ALS can be astronomical. In 2014, the American ALS Association estimated that the average annual cost of ALS treatment is $143,000 per patient, adding up to an average total lifetime cost of $1.4 million.
In the US alone, the total cost of ALS care reaches a staggering $250 million per year. On average, insurance covers about 85% of those costs, but when we consider the indirect costs of ALS—like job or income loss—it’s understandable why so many families struggle to cover the cost of ALS treatment.
Hospital stays for ALS patients average $381 per day. Home health care averages $22 per hour, or upwards of $669,000 for in-home care over the course of the disease. As the disease progresses and 24-hour care becomes necessary, the average cost of an ALS patient’s medical care can go up to $200,000 per year.
ALS medications also incur a huge cost for families. Of the limited medications used for ALS treatment, monthly prescription costs can range from $700 to $1,600 per month. More complex treatments, like gene therapy injections or medications that help slow the loss of physical function, can cost as much as $145,000 or more per treatment.
To learn more about ALS treatment costs, see this resource from the American Life Fund.
Given these numbers, it is essential for people recently diagnosed with ALS to create a long-term plan for care and finances.
Does the Americans with Disabilities Act (ADA) cover ALS?
Some people with ALS choose to continue working as long as possible.
The Americans with Disabilities Act (ADA) protects individuals who are disabled from discrimination in places like school, the workplace, or public transportation. For people diagnosed with Lou Gehrig’s disease, the ADA protects the right to certain accommodations when the condition becomes debilitating.
Organizations like the Job Accommodations Network (JAN) offer excellent recommendations on accommodations to request, as well as resources to best handle important conversations with employers or instructors.
To learn more about ADA guidelines, see the government website.
Do people with ALS qualify for social security disability benefits?
Because ALS is considered an “exceptionally debilitating illness,” it is included on the Social Security Administration (SSA)’s list of Compassionate Allowance Conditions.
Most applications for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) take several months to process, followed by a five-month waiting period before funds become available.
However, someone with a compassionate allowance condition like ALS qualifies for expedited application processing. The ALS Disability Insurance Access Act of 2019 also eliminated the five-month waiting period for people with ALS approved for benefits after June 2020.
Taken together, these protections mean that someone diagnosed with ALS today may be able to access critical Social Security funding in days or weeks. Every second counts for people with ALS and their families. Faster access to funding can make a huge impact, giving someone with ALS more time to spend with loved ones rather than time spent worrying about medical costs.
What other financial assistance does the US government offer people with ALS?
The US government has multiple insurance and financial assistance options for those who qualify. They include:
- Medicaid pays for medical care for people with very low incomes.
- Medicare is a federal health insurance program for people 65 or older who receive Social Security retirement benefits or are younger than 65 and have received Social Security disability benefits for at least 24 months.
- Medigap insurance supplements the person's Medicare coverage.
- Veteran’s Affairs (VA) provides health care benefits for veterans who have actively served in the military.
What are the communication challenges that accompany ALS?
Most people living with ALS will experience difficulties with speech, and some will ultimately lose the ability to speak and use their hands.
Augmentative and alternative communication (AAC) devices (also called speech-generating devices or SGDs) use sign language, symbol or picture boards, and electronic devices with synthesized speech.
As the disease progresses, caregivers and people with ALS must work together to decide when to seek help with communication.
Where can I get mental health assistance for ALS?
People with Lou Gehrig’s disease may also experience mental health issues, including:
- Anxiety and depression
- Behavioral variant frontotemporal dementia (bvFTD)
- Pseudobulbar affect (PBA)
The ALS Association has individual chapters that work closely with providers in their local communities to ensure all people with ALS receive the health care and support services they need. Their multidisciplinary care model allows ALS patients to receive care from each discipline during a single visit.
If you’re not sure where to start, Ability Central’s Service Locator tool offers a searchable database of nonprofits specializing in ALS. An organization near you can help connect you with support groups and mental health resources in your area.
Where can I find ALS support groups?
ALS support groups help patients and caregivers connect with others who understand their daily challenges. They can give people with ALS and their loved ones a new perspective and make the journey less isolating.
You can connect with support groups through any of the following:
- ALS Forums is a volunteer-driven support group launched in 2003. The members are affected by ALS and share their experiences to help others better deal with this disease.
- I AM ALS offers weekly virtual support groups for people living with and impacted by ALS.
- The ALS Hope Foundation hosts weekly Zoom support groups led by Mary Holt-Paolone, MSRN, Mental Health Specialist at the MDA/ALS Center of Hope at Temple University.
- The ALS Association offers a searchable list of support groups by state.
Where can I get more information about ALS?
Ability Central has multiple resources to learn more about ALS, including: