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Maine • Neurodegenerative
If you have Amyotrophic Lateral Sclerosis (ALS) in Maine, your main options for disability benefits are federal Social Security programs (SSI and SSDI), with no separate Maine cash disability program. Maine provides independent living, assistive technology, and housing supports, while MaineCare (Medicaid) may offer additional health and waiver services.
Social Security Disability Insurance (SSDI): To qualify, you must have worked and paid Social Security taxes for at least 10 years before becoming disabled. ALS (amyotrophic lateral sclerosis) is listed in the Social Security Administration’s Compassionate Allowances program, which accelerates the review process for severe disabilities like ALS[8].
Supplemental Security Income (SSI): If you have little or no work history and low income/resources, you may qualify for SSI. Your disability must prevent substantial work for at least 12 months or be terminal[1]. ALS is considered a qualifying condition for faster approval.
Children and Adults with Disabilities: Disabled children may qualify for benefits if a parent meets Social Security requirements. Adults disabled before age 22 may qualify for payments based on a parent’s work record[7]. All require medical documentation that ALS meets Social Security’s definition of disability.
Medicare and Medicaid: If approved for SSDI, you get Medicare after a 24-month waiting period. SSI recipients in Maine qualify for MaineCare (Medicaid) right away[1].
State-specific information is limited; start here: Maine does not have a state-administered disability cash benefit program for adults[1]. Instead, residents with ALS must apply for federal SSI or SSDI. For former state employees, the Maine Public Employees Retirement System (MainePERS) offers a Disability Retirement benefit if you have a medically diagnosable, permanent condition that prevents you from working[2].
Maine also provides services through the Division of Deafness, Independent Living Services (ILS), and the Disability Rights Center for advocacy, independent living supports, and accessibility advocacy[3]. MaineCare (Medicaid) may offer additional supports, including waiver programs for home and community-based services for people with severe disabilities, but these are administered through the state using federal Medicaid rules.
Housing: The Section 811 Project Rental Assistance (PRA) program offers integrated, affordable housing for extremely low-income people with disabilities, including ALS[5]. However, no state-specific cash disability benefit exists for the general public[1].
1. Prepare Your Application Collect medical records, work history, and proof of income. ALS is a Compassionate Allowance, so be sure to highlight your diagnosis[8].
2. Apply Online, by Phone, or In Person Apply for SSDI/SSI at ssa.gov/benefits/disability, by phone at 1-800-772-1213, or at your local SSA office[6].
3. Submit Medical Evidence Your doctors must document your ALS diagnosis, symptoms, and functional limitations. The SSA may contact your providers for more details[8].
4. Wait for a Decision ALS cases are often processed faster. If denied, you have 60 days to request reconsideration, then a hearing if needed[1].
5. Explore State Supports After federal approval, contact MaineCare (Medicaid) to enroll. For housing, ask your case manager about the Section 811 PRA program[5]. For advocacy or independent living support, reach out to Maine’s Independent Living Services or Disability Rights Center[3].
6. MainePERS Applicants State employees can apply for Disability Retirement through MainePERS with medical proof of a permanent, work-preventing condition[2].
7. Stay Organized Keep copies of all forms and correspondence. Report changes in work, income, or living situation promptly to avoid overpayments[1].
Social Security Disability Insurance (SSDI): Monthly cash benefit for people with a work history, based on earnings. ALS is a Compassionate Allowance, speeding up approval[8]. Supplemental Security Income (SSI): Needs-based monthly payment for those with limited income/resources; includes Medicaid (MaineCare) eligibility[1]. Medicare: Available after 24 months on SSDI[1].
Housing: Section 811 PRA provides affordable, integrated housing for extremely low-income people with disabilities, including ALS[5]. Medicaid Waivers: Offer home and community-based services for eligible individuals (see SSI/SSDI Work Incentives if you want to work)[4].
MainePERS Disability Retirement: For state employees with permanent disabilities, a monthly benefit if you can no longer work[2]. Independent Living Services (ILS): Helps people with significant disabilities live independently; services depend on funding availability[3]. MaineCITE: Offers assistive technology for children and adults with disabilities, including ALS[3]. Disability Rights Center: Provides advocacy, information, and training for people with disabilities[3]. Division of Deafness: For eligible Mainers, offers advocacy, assistive tech, and accessibility services[3].
MaineCare (Medicaid): No separate state-run cash disability program, but MaineCare provides health coverage for most people with ALS who qualify for SSI or meet income guidelines. Check for waiver programs that expand services beyond standard Medicaid[3]. Section 811 PRA: State partnerships with HUD for supportive housing, but availability is limited[5].
ABLE Accounts: These tax-advantaged savings accounts let people with disabilities save for disability-related expenses without affecting SSI or MaineCare (Medicaid) eligibility until balances reach $100,000. While Maine does not have its own ABLE program, residents can use any state’s ABLE plan. See our ABLE Accounts guide for details.
SSI Income Limits: To qualify for SSI in 2025, countable income must be below $943/month for an individual ($1,415 for a couple). Resource limits are $2,000 for an individual ($3,000 for a couple). These limits are set by the SSA, not Maine[1]. SSDI: Has no income or asset limits, but you must have sufficient work history[1].
Avoiding Overpayments: Be prompt and accurate when reporting changes in your income, living situation, or health status to the SSA and MaineCare. This helps prevent overpayments and penalties. See our guide on How to Report Changes for step-by-step instructions and tips.
ALS (amyotrophic lateral sclerosis) is in the Social Security Administration’s Compassionate Allowances program, which means your application for SSI or SSDI can be processed much faster than most disabilities—often in weeks instead of months[8].
If you are a Maine state or public school employee, you may be eligible for MainePERS Disability Retirement in addition to federal benefits—see the MainePERS website for details[2].
Yes. ALS is a Compassionate Allowance, so SSI and SSDI applications are often approved faster than other conditions. There is no separate state cash disability program in Maine[1][8].
SSDI is for people with a work history and pays more if you have higher earnings. SSI is for those with little or no work history and low income/resources. ALS is eligible for both, and SSI recipients also get MaineCare (Medicaid)[1].
Apply online at ssa.gov, by phone at 1-800-772-1213, or at a local SSA office. Gather all medical records showing your ALS diagnosis. ALS cases are processed quickly[6][8].
If you qualify for SSI, you will automatically be eligible for MaineCare. If you receive SSDI, you must wait 24 months for Medicare and may qualify for MaineCare depending on your income[1].
Yes, the Section 811 PRA program helps extremely low-income people with disabilities find affordable, supportive housing. There is a waitlist, so apply early[5].
You may apply for MainePERS Disability Retirement if your ALS prevents you from working. You will need medical documentation of your permanent disability[2].
Disclaimer: This guide is for informational purposes only and does not constitute legal, financial, or medical advice. Always consult the official agency or a qualified professional before applying for or changing benefits.
Maine offers Independent Living Services, assistive technology through MaineCITE, and advocacy through the Disability Rights Center. Services depend on funding and program eligibility[3].
Yes, but there are strict income limits for SSI—see our SSI & SSDI Work Incentives guide. SSDI has a trial work period. Always report work and income changes[4].
Appeal the decision. Many people are approved after one or more appeals. Keep all medical records and follow up promptly with the SSA[1].
Maine does not have its own ABLE program, but you can use any state’s ABLE account without affecting SSI or MaineCare eligibility up to $100,000 in savings.
