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Washington • Rare/Genetic
People in Washington with Ehlers-Danlos Syndrome (EDS) can access federal and state disability benefits, including Social Security (SSI/SSDI), Medicaid (Apple Health), and state supplements. This guide explains eligibility, how to apply, and unique state programs for WA residents with rare/generic disabilities, with authoritative official sources and actionable steps.
To qualify for federal disability benefits with Ehlers-Danlos Syndrome (EDS), your symptoms must prevent you from working for at least 12 months or be expected to result in death. For SSDI, you need a certain number of work credits based on your age—most adults need 40 credits, with 20 earned in the last 10 years[1]. Children and adults without enough work history may qualify for SSI if their income and resources are very low[3]. The Social Security Administration (SSA) uses a strict medical review process. EDS must cause severe functional limitations (like chronic pain, joint dislocations, or heart complications) that meet or equal a listed impairment (rare/genetic disorders are often evaluated under “body systems” listings). Even with a diagnosis, you must show how EDS affects your daily life and ability to work. SSI has strict income and asset limits: as of 2025, your monthly income must generally be below $967 for individuals and $1,450 for couples, and you cannot have more than $2,000 in countable resources ($3,000 for couples)[3]. Social Security also has ‘substantial gainful activity’ (SGA) rules—if you earn above $1,550/month (non-blind) or $2,590/month (blind), you are usually not eligible[1].
In Washington, eligibility for state programs starts with federal disability approval, but there are extra supports. SSI recipients automatically qualify for Medicaid (Apple Health), which covers a wide range of healthcare needs for people with disabilities[5]. Washington also adds a State Supplement Payment (SSP) on top of your federal SSI benefit to help with the high cost of living, though the exact amount varies based on living situation and county[3]. If you are waiting for federal SSI approval (which can take 7 months or longer), you may be eligible for Aged, Blind, and Disabled (ABD) cash assistance—a temporary bridge for low-income, disabled Washingtonians[2]. Note: Until October 2025, ABD recipients must pay back benefits once SSI is approved, but this requirement is set to end soon[2]. To access Medicaid waivers for home and community-based services (HCBS) in WA, you must meet both SSI-level disability and financial criteria. Applying for any of these programs requires medical documentation that shows how EDS limits your ability to work and live independently.
Step 1: Collect Medical Evidence Gather all medical records, doctor’s notes, test results, and treatment history that show your EDS diagnosis and its impact. Include records from specialists (e.g., genetics, cardiology, rheumatology, physical therapy).
Step 2: Apply for SSI/SSDI Start your application online at the Social Security website, by phone (1-800-772-1213), or in person at a local SSA office[6]. Be ready to describe your symptoms, treatments, and limitations in detail. You can request a “Quick Disability Determination” if your condition is exceptionally severe.
Step 3: Work with Washington’s Disability Determination Services (DDS) The WA DDS (part of DSHS) will review your medical evidence and may request additional exams or records. Be responsive to their requests to avoid delays[6].
Step 4: Apply for State Programs While waiting for federal approval, apply for ABD cash assistance and Apple Health (Medicaid) through Washington DSHS—these can provide immediate help with food, medical care, and cash support[6].
Step 5: Appeal if Denied If your claim is denied, you have 60 days to appeal. Consider getting help from a disability lawyer or nonprofit advocate.
Step 6: Report Changes Promptly Once approved, report any changes in your income, living situation, or health to Social Security and DSHS to avoid overpayments or loss of benefits.
Step 7: Explore Medicaid Waivers If you need home care or community-based services, ask DSHS about HCBS waivers for people with disabilities[5].
Supplemental Security Income (SSI): Provides monthly cash payments to low-income individuals with disabilities, including those with Ehlers-Danlos Syndrome, who have limited income and resources[3]. SSI recipients are also eligible for Medicaid in most states, including Washington (Apple Health)[5].
Social Security Disability Insurance (SSDI): Pays benefits to people who have worked and paid Social Security taxes long enough to earn sufficient work credits and are now unable to work due to a severe medical condition[1]. SSDI recipients may be eligible for Medicare after a 24-month waiting period.
Medicare and Medicaid: Medicare provides health insurance for people who are 65 or older or who have received SSDI for 24 months. Medicaid (Apple Health) provides health coverage for low-income individuals, including those on SSI and those who qualify through other pathways[5].
ABLE Accounts: Federal law allows the creation of tax-advantaged savings accounts for people with disabilities, which do not count against SSI resource limits.
Washington State Supplement Program (SSP): Adds extra cash to the federal SSI payment for eligible residents[3]. The amount depends on your living arrangement and county.
Aged, Blind, and Disabled (ABD) Cash Assistance: Provides temporary financial help for low-income Washingtonians (including those with EDS) who are waiting for SSI approval[2]. Note: Until October 2025, you may be required to pay back ABD benefits once you receive SSI; this will end after October 2025[2].
Apple Health (Medicaid): SSI recipients in Washington automatically qualify for Apple Health, which covers doctor visits, hospital care, prescriptions, therapies, and more[5]. Others may qualify based on income or disability status.
Medicaid Waivers (HCBS): Washington offers waivers that allow people with disabilities to receive services in their home or community instead of a nursing home. Eligibility is based on both medical need and income/resource limits[5].
Paid Family and Medical Leave: Provides up to 12 weeks of paid leave (partial wage replacement) for eligible workers with serious health conditions, including EDS, or those caring for a family member with a serious health condition[4]. The program is funded by payroll deductions.
Washington ABLE Accounts: You can open an ABLE account to save money for disability-related expenses without affecting SSI eligibility. These accounts are available to anyone who became disabled before age 26 and are designed to help manage extra costs related to Ehlers-Danlos Syndrome.
SSI Income and Asset Limits (2025): For SSI, your income must generally be below $967/month (individual) or $1,450/month (couple), and you cannot have more than $2,000 in countable resources ($3,000 for couples)[3]. ABD Cash Assistance: ABD has its own income limits, set lower than SSI, and is only available to those with very limited income and resources[2]. Medicaid (Apple Health): Income limits vary by program; SSI recipients automatically qualify, others may qualify under expanded Medicaid rules[5].
Reporting Rules: You must notify Social Security and Washington DSHS promptly if your income, resources, living situation, or medical condition changes[5]. Failure to report can lead to overpayments, which you may have to pay back. Overpayments: If you receive too much money, you may get a notice to repay. You can request a waiver, set up a payment plan, or appeal if you believe the overpayment is not your fault. Keep detailed records and report changes as soon as possible to avoid problems.
Washington will no longer require ABD recipients to repay benefits from October 2025 onward—but until then, you may need to pay back ABD if you receive SSI later[2]. Keep records and report changes promptly to avoid overpayments or losing benefits.
Because Ehlers-Danlos Syndrome can affect many body systems, collect detailed medical records—especially from geneticists, cardiologists, and physical therapists. Clearly describe how EDS limits your daily activities and ability to work, not just your diagnosis.
If you are employed in Washington, you may be eligible for Paid Family and Medical Leave for up to 12 weeks (partial wage replacement) if you need time off for EDS-related care[4]. Check with your employer or the Washington Employment Security Department for details.
You may be eligible for both if your work history and income/resource limits allow. SSDI is for people with enough work credits, while SSI is for those with low income and resources[1][3]. Each has its own rules, but you cannot collect full benefits from both at the same time.
The process can take 3–5 months for an initial decision and much longer if you have to appeal. ABD cash assistance can help bridge the gap while you wait[2][6].
Report any changes in your symptoms, treatments, or ability to work to Social Security and DSHS right away. This helps ensure your benefit level is correct and prevents overpayments[3][5].
Until October 2025, you may need to repay ABD cash assistance if you start receiving SSI, but this requirement is set to end in October 2025[2].
Yes—SSI and SSDI have work incentives and allow you to earn some income without losing benefits immediately. However, earning above $1,550/month (non-blind) in 2025 usually means you are not eligible for SSDI[1][3]. SSI also has strict income limits.
SSP is extra cash added to your federal SSI payment to help with Washington’s high cost of living. The amount depends on your living situation and is paid automatically to qualifying SSI recipients[3].
Disclaimer: This guide is for informational purposes only and is not legal, financial, or medical advice. Official agency decisions govern eligibility and benefit payments. Always verify details directly with government agencies.
Low-Income Assistance: Additional support may include SNAP (food assistance), rental assistance, and energy assistance for those who qualify.
Washington offers Medicaid waivers for home and community-based services (HCBS) to people with disabilities, including those with rare or genetic conditions, if they meet both medical and financial criteria[5].
Yes, if your disability began before age 26, you may open an ABLE account under federal and state rules. This allows you to save for disability-related expenses without affecting SSI eligibility.
A lawyer or advocate is not required, but can be very helpful, especially if your case is denied or complicated by EDS's variable symptoms and rarity.
You have the right to appeal. Gather more evidence, get doctor support, and consider working with a disability lawyer. Most people are approved at the appeal stage, not the first try.
