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New York • Rare/Genetic
If you or a loved one has Fragile X Syndrome in New York, you may qualify for federal and state disability benefits, Medicaid, local service waivers, and more. This guide explains your options, eligibility, and how to apply for the support you need.
To get SSI or SSDI, you must meet Social Security Administration rules. SSI helps those with limited income and resources, including children and adults with severe disabilities. SSDI pays benefits to adults who have worked and paid Social Security taxes. Your impairment must be severe, last at least one year, and prevent significant work. For children, SSI looks at family income and assets.
New York does not have a state disability insurance program like some other states. If you have Fragile X Syndrome and need support, focus on SSI, SSDI, and New York’s Medicaid waiver programs. To qualify for a Medicaid waiver (such as the Traditional HCBS Waiver or TTLD Waiver), you must have a developmental disability, need a level of care typically provided in a facility, and often, meet certain income limits. NYS Office for People With Developmental Disabilities (OPWDD) manages waiver services and can provide guidance on local programs.
Start by applying for SSI or SSDI at your local Social Security office or online. For New York Medicaid and disability waivers, contact OPWDD. Gather medical records, proof of diagnosis, and financial information. Apply early—some programs have waiting lists. If denied, ask for an appeal.
SSI/SSDI Application Steps:
New York Medicaid Waiver Steps:
ABLE Account Steps:
SSI provides monthly cash assistance to people with limited income and resources, including children and adults with Fragile X Syndrome. SSDI pays benefits to adults who have worked and paid Social Security taxes. Medicare provides health coverage to SSDI recipients after a 24-month waiting period. ABLE accounts let you save for disability expenses without losing SSI or Medicaid.
New York offers Medicaid, including Home- and Community-Based Services (HCBS) waivers for people with developmental disabilities. These waivers cover respite care, day programs, residential supports, and other services outside of institutions. OPWDD coordinates these services and can help you apply. New York State Supplement Program (SSP) adds to SSI payments for some recipients. There are also local resources, such as nonprofit organizations and county offices, that help with applications and advocacy.
A New York ABLE account is a tax-advantaged savings account for people with disabilities that started before age 26. You can save up to $18,000 per year (2025 limit) without affecting SSI or Medicaid eligibility. ABLE accounts can be used for qualified disability expenses, like education, housing, and health care.
SSI has strict income and asset limits. In 2025, you generally must have less than $2,000 in countable resources (or $3,000 for couples) and very limited income. New York’s Medicaid programs and waivers may have higher income limits, especially for children. Always report changes in income or living situation.
If you get SSI, SSDI, or Medicaid, you must report changes in income, assets, or living situation to avoid overpayments. Overpayments can lead to reduced benefits or repayment obligations. If you get a notice, respond right away. See our guide on Avoiding Overpayments & Reporting Changes for more.
Find your nearest Social Security Administration office for in-person help with SSI, SSDI, and appeals.
Yes, children with Fragile X Syndrome may qualify for SSI if family income and resources are within program limits. The child must have a documented severe impairment. Apply through Social Security, and provide medical evidence of the diagnosis and impact on daily functioning.
SSI is for people with limited income and resources, regardless of work history. SSDI is for adults who have worked and paid into Social Security. Benefits and eligibility rules differ—check our **SSI vs SSDI** guide for details.
Yes, New York offers Medicaid waivers (HCBS) for people with developmental disabilities, including Fragile X Syndrome. These waivers provide services like respite, day programs, and in-home supports. Contact OPWDD to apply.
A New York ABLE account is a savings plan for people with disabilities that began before age 26. Earnings grow tax-free, and you can spend on qualified disability expenses without losing benefits.
Apply online through the NY State of Health, by phone, or in person. You may also apply through OPWDD if you need waiver services. Provide medical and financial documentation.
OPWDD offers case management, residential supports, day programs, respite care, and family support services for eligible individuals with developmental disabilities.
Disclaimer: This guide is for informational purposes only. Consult official agencies and professionals for benefits and legal advice specific to your situation.
Yes, both programs have work incentives allowing you to try working without losing benefits right away. See our **SSI & SSDI Work Incentives** guide for details.
You have the right to appeal. Gather more evidence, consider getting help from a benefits counselor or attorney, and file your appeal quickly.
SSP is a state payment that adds to federal SSI for some recipients in New York. Eligibility depends on living situation and income.
Contact OPWDD, local Arc chapters, or other disability advocacy groups. Social workers and school districts can also help connect you to resources.
