Legal and Disability Rights for People with hEDS

Living with hypermobile Ehlers-Danlos syndrome (hEDS) can mean navigating unpredictable physical symptoms—joint instability, chronic pain, fatigue, and more—as well as a complex and often unaccommodating legal landscape. Many individuals with hEDS face significant challenges when trying to access disability benefits, health coverage, or legal accommodations, not because the condition is rare, but because it is misunderstood, lacks a genetic test, and often presents invisibly. Although legal protections exist, patients frequently report systemic barriers, including disbelief, inconsistent access to resources, and long waits for recognition and support. This article outlines the legal rights, disability benefits, and documentation strategies relevant to people with hEDS, with an emphasis on U.S. federal and state law and a brief international comparison.

Legal and Disability Benefits in the United States

Federal Disability Benefits: SSI and SSDI

The U.S. Social Security Administration (SSA) oversees two primary disability programs.

• Supplemental Security Income (SSI)

  • For people with low income and limited assets

  • In 2025, individuals must have countable resources under $2,000

  • Often includes automatic Medicaid eligibility (though this can vary by state)

  • Understanding SSI: A comprehensive guide covering everything from eligibility rules to appeals and help with applications. 

• Social Security Disability Insurance (SSDI)

  • For people with a qualifying work history who have paid into Social Security

  • Not income-restricted

  • Requires proof that a person is unable to engage in substantial gainful activity (SGA), defined in 2025 as earning less than $1,550/month for non-blind individuals

  • SSDI Fact Sheet: A reader-friendly overview of SSDI rules and processes

Applying with hEDS

• hEDS is not listed in the SSA’s Blue Book of recognized conditions.

• Approval is based on the functional impact of symptoms, not diagnosis alone.

• Most successful cases use a “medical-vocational allowance” approach, showing that symptoms and comorbidities (e.g., pain, fatigue, dysautonomia) interfere with daily life and employment.

Common Experiences of People with hEDS in Disability Systems

• Many individuals report long delays in diagnosis, with symptoms dismissed or misunderstood as psychological.

• Fatigue, joint instability, and pain often go unrecognized as disabling because they may not appear on standard tests.

• Medical documentation is frequently undervalued or rejected by reviewers unfamiliar with hEDS.

• Appeals are common, with many people being denied on initial application and only approved after one or more appeals.

• Inconsistencies between providers, agencies, and states lead to confusion and unequal access to benefits.

• Patients of color, low-income individuals, and non-native English speakers may experience additional layers of discrimination and systemic bias.

What Is Needed for SSI/SSDI Applications

Strong documentation, including the following, improves the likelihood of approval

• A diagnosis made using the 2017 hEDS criteria (including joint hypermobility and exclusion of other diagnoses)

• Medical records detailing pain, fatigue, dysautonomia, gastrointestinal symptoms, and psychiatric effects

• Notes describing limitations in walking, sitting, lifting, typing, or concentrating

• Records of treatments tried (physical therapy, medications, assistive devices)

• Statements from doctors explaining how hEDS limits ability to work or complete daily tasks

• For children: school records, IEPs (Individualized Education Plans for students with disabilities who qualify for special education services), and therapist evaluations

Appeals and Advocacy

• Most initial disability applications for hEDS are denied, but appeals often succeed.

• Estimates from disability law groups and patient advocacy sources suggest that approximately 60–70% of initial SSI and SSDI applications are denied for hEDS and similar invisible or poorly understood conditions.

• Of those who appeal, more than half are ultimately approved, especially after a hearing before an Administrative Law Judge.

• Legal representation significantly increases approval rates: nearly 80% of applicants with legal help at a hearing are awarded benefits, compared to lower rates for those who go it alone.

• An estimated 50–60% of people with hEDS who apply for disability end up filing an appeal, and around 30–40% hire an attorney or advocate during the process.

Having someone help with the paperwork—such as a social worker, legal aid organization, disability advocate, or attorney—can greatly improve clarity, accuracy, and completeness of the application. These professionals can help translate symptoms into SSA language, gather the right types of medical documentation, and represent the applicant in appeals. Many attorneys work on contingency, meaning they are only paid if the claim is successful.

State-Level Differences

• SSI and SSDI eligibility criteria are federal and do not vary by state

• Some states provide

  • Supplemental payments to SSI recipients

  • Automatic Medicaid eligibility for SSI recipients (in most but not all states)

• States do not have disability benefit programs of their own independent from SSI/SSDI

• Access to services, wait times, and Medicaid benefits can differ significantly by region

Housing Rights

• Under the Fair Housing Act and Section 504 of the Rehabilitation Act, people with hEDS may request reasonable accommodations from landlords or housing authorities

• These accommodations may include:

  • First-floor housing for those with mobility issues

  • Grab bars or ramps

  • Permission for service or emotional support animals, even in no-pet housing

• Landlords may not charge extra fees for these accommodations

Workplace Protections

• The Americans with Disabilities Act (ADA) protects individuals with hEDS in the workplace.

• Employers must provide reasonable accommodations, such as

  • Ergonomic workstations or adjustable chairs

  • Flexible hours, breaks, or telework options

  • Modified job duties or equipment

  • Reserved parking or remote access

• Workers must request accommodations and provide documentation; employers must engage in an interactive process to find solutions.

School-Based Rights

• K–12 Education

  • Section 504 and IDEA protect students with disabilities

    • Section 504 requires schools to provide reasonable accommodations to ensure students with disabilities have equal access to learning.

    • Individuals with Disabilities Education Act (IDEA), is a U.S. federal law that ensures students with disabilities receive a free appropriate public education in the least restrictive environment.

  • Students with hEDS may qualify for

    • Modified PE requirements

    • Use of mobility aids

    • Extra time on assignments or tests

    • Rest breaks and elevator passes

    • Attendance flexibility

• College and University

  • Section 504 and the ADA still apply

  • Students must request accommodations from disability services and submit medical documentation

  • Common accommodations include:

    • Reduced course loads

    • Recorded lectures or note-taking support

    • Flexible deadlines or attendance

Health Insurance and Medical Coverage

• People approved for SSI receive Medicaid (in most states)

• People on SSDI qualify for Medicare after 24 months

• Medicaid often provides better coverage for physical therapy, durable medical equipment, and home health services

• Private insurance may limit coverage for therapies and specialists often needed in hEDS

• Insurance companies frequently deny claims for services seen as “alternative,” including complex rehabilitation, necessitating appeal letters and documentation

International Comparison

• United Kingdom: Benefits are based on how much a condition impacts function, not diagnosis. Universal healthcare reduces financial barriers.

• Canada and Australia: Function-based assessments and national disability support systems improve access to care and reduce regional disparities.

• European Union: Stronger integration of disability rights under human rights frameworks, with fewer insurance-related barriers

In contrast, U.S. access is highly fragmented, dependent on employment, geography, and documentation quality.

Immigration Status and Access to Disability Benefits and Legal Protections

In the United States, immigration status significantly affects access to disability-related benefits, though many legal protections apply regardless of documentation. All individuals—regardless of citizenship or immigration status—are protected under key civil rights laws, including the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and the Individuals with Disabilities Education Act (IDEA). This means undocumented and non-citizen individuals can access school-based services, request workplace or housing accommodations, and receive protection from discrimination based on disability.

However, access to federal disability benefits such as Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) is far more restricted. These programs typically require the applicant to be a U.S. citizen or to fall into a narrow category of lawfully present non-citizens, such as lawful permanent residents (green card holders) with a long work history, refugees, or asylees.

Health insurance programs such as Medicaid and Medicare also depend heavily on immigration status and vary by state. Some states provide Medicaid to all children, regardless of immigration status, or offer emergency-only coverage to undocumented individuals. Medicare is limited to those with lawful status and qualifying work history.

For lawfully present non-citizens, eligibility often depends on how long they’ve been in the U.S. and what type of visa or protection they have. Undocumented adults generally cannot access federal benefit programs but still retain legal rights under education and anti-discrimination laws.

Validated Tools for Documenting Disability in hEDS

Many validated tools used to document disability in hypermobile Ehlers-Danlos syndrome (hEDS) are designed for patients to complete themselves, often in coordination with healthcare providers. These tools can play a key role in disability benefit applications, workplace accommodations, and clinical documentation by providing structured, credible evidence of how hEDS affects daily life.

While patients can complete most questionnaires themselves, they are most effective when reviewed and interpreted with a healthcare provider who can incorporate the results into formal records. These tools can be submitted as part of applications for disability benefits or accommodations, and they are especially helpful in illustrating invisible or fluctuating symptoms in a standardized format.

Summary

People with hypermobile Ehlers-Danlos syndrome often face serious challenges in accessing the disability-related benefits and protections they are legally entitled to. While federal laws like the ADA, Section 504, and IDEA provide strong civil rights protections, real-world implementation is inconsistent and often dependent on patient advocacy and physician support. The absence of a confirmatory genetic test for hEDS, combined with systemic biases and medical misunderstandings, leads many patients to experience denial, delay, and frustration.

State programs do not provide their own separate disability benefits outside of the federal SSI and SSDI framework, but access to Medicaid and support services may vary by location. International systems generally take a more streamlined, function-based approach and often include universal healthcare, which lowers barriers to care.

For individuals with hEDS, success in navigating these systems depends heavily on comprehensive documentation, informed healthcare providers, persistent self-advocacy, and connection to knowledgeable support organizations. Having professional help—whether from legal aid, disability advocates, or experienced attorneys—can make a meaningful difference in gaining access to benefits and enforcing legal rights.