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Pennsylvania • Rare/Genetic
People with Ehlers-Danlos Syndrome in Pennsylvania can qualify for federal and state disability benefits, including SSI, SSDI, Medicaid waivers, and ABLE accounts. This guide explains eligibility, how to apply, and what support is available.
To qualify for federal disability benefits in Pennsylvania, your Ehlers-Danlos Syndrome must meet the Social Security Administration's (SSA) definition of disability. This means your condition must prevent you from doing substantial work and is expected to last at least one year or result in death. You must also meet the SSA's medical criteria for disability, which includes having a severe impairment that limits your ability to work and earn a living. For Social Security Disability Insurance (SSDI), you need a work history and enough work credits. For Supplemental Security Income (SSI), you must have limited income and resources, regardless of work history. Both programs require proof of your disability and its impact on your daily life and work ability [1].
In Pennsylvania, eligibility for disability benefits is determined by the state's Disability Determination Services (DDS) on behalf of the SSA. DDS reviews your medical records, work history, and other evidence to decide if you qualify for SSDI or SSI. For state programs like Medicaid waivers or Medical Assistance for Workers with Disabilities (MAWD), you must meet additional state-specific requirements, such as income limits and proof of disability. MAWD, for example, is for working individuals ages 16–64 with chronic conditions, income under 250% of the federal poverty level, and less than $10,000 in resources. Pennsylvania also offers home and community-based services (HCBS) waivers for people with disabilities who need long-term care support [1][3][5].
ABLE accounts allow people with disabilities to save money without losing eligibility for benefits like SSI or Medicaid. In Pennsylvania, you can open an ABLE account if your disability began before age 26 (this will increase to age 46 starting in 2026). Funds in an ABLE account can be used for qualified disability expenses, such as medical care, housing, and education. Withdrawals for these expenses are tax-free [4].
For SSI, your income and resources must be below strict limits set by the SSA. For MAWD in Pennsylvania, your income must be under 250% of the federal poverty level, and you must have less than $10,000 in resources. These limits can change, so check with your local County Assistance Office for the most current information [3].
You must report any changes in your income, work status, or medical condition to avoid overpayments. If you receive too much in benefits, you may have to pay it back. Always keep records of your reports and any correspondence with the SSA or state agencies [1][3].
Contact your local County Assistance Office or call the PA Department of Human Services for help with your application. They can guide you through the process and answer your questions.
Yes, if your Ehlers-Danlos Syndrome severely limits your ability to work and meets the SSA's medical criteria for disability. You must provide medical evidence and show that your condition is expected to last at least one year or result in death [1][6].
You will need medical records, proof of income, work history, identification, and any other documents that show how your Ehlers-Danlos Syndrome affects your daily life and ability to work. The SSA or state agency may request additional evidence [1][3].
The process can take several months, depending on how quickly the Disability Determination Services receives your medical records and other evidence. You may be asked to provide more information during the review [1].
Yes, there are work incentives for people with disabilities. You can earn some income without losing benefits, but there are limits. Check with the SSA or your local County Assistance Office for details [1][3].
SSI is for people with limited income and resources, regardless of work history. SSDI is for people who have worked and paid Social Security taxes. Both programs require proof of disability and its impact on your ability to work [1][6].
Disclaimer: This guide is for informational purposes only. Always check with official agencies for the most current rules and eligibility requirements.
You can apply for Medicaid through the Pennsylvania Department of Human Services or your local County Assistance Office. You will need to provide proof of income, disability, and other required documents [3][5].
An ABLE account is a tax-advantaged savings account for people with disabilities. It lets you save money without losing eligibility for benefits like SSI or Medicaid. Funds can be used for qualified disability expenses [4].
Yes, Pennsylvania offers programs like MAWD and Medicaid waivers for people with disabilities. These programs provide health coverage and support services for those who meet income and disability criteria [3][5].
If your application is denied, you can appeal the decision. The SSA will provide instructions on how to appeal. You may want to seek help from a disability advocate or attorney [1].
You must report any changes in your income, work status, or medical condition to the SSA or state agency. Keep records of your reports and any correspondence to avoid overpayments or loss of benefits [1][3].
