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New York • Rare/Genetic
People with Rett Syndrome in New York can get help from federal and state programs. These include SSI, SSDI, Medicaid waivers, and ABLE accounts. This guide explains eligibility, how to apply, and where to get support.
Rett Syndrome is a rare genetic disorder that affects girls and women. It causes severe physical and cognitive disabilities. Most people with Rett Syndrome qualify for federal disability benefits like SSI and SSDI. To get SSI, you must have low income and limited resources. SSDI is for people who worked and paid Social Security taxes. Both programs require medical proof of disability. The Social Security Administration (SSA) uses a list of qualifying conditions. Rett Syndrome is on this list, so most applicants are approved if they meet the medical criteria [1].
Children with Rett Syndrome may also get SSI if their family meets income rules. Adults with Rett Syndrome who never worked may get SSI if they meet the rules. People with Rett Syndrome who worked may get SSDI if they have enough work credits [1].
In New York, people with Rett Syndrome can get extra help through state programs. The main program is Medicaid, which pays for health care, therapies, and home care. New York also offers Medicaid waivers for people with developmental disabilities. These waivers help pay for services like respite care, home modifications, and assistive technology. To get a waiver, you must be eligible for Medicaid and have a developmental disability. Rett Syndrome is considered a developmental disability in New York. You can apply for waivers through the New York State Office for People With Developmental Disabilities (OPWDD) [2].
New York also has an ABLE account program. This lets families save money for disability-related expenses without losing SSI or Medicaid benefits. To open an ABLE account, you must have a qualifying disability that started before age 26 [3].
Federal programs for people with Rett Syndrome include SSI, SSDI, and Medicare. SSI gives monthly cash payments to people with low income and limited resources. SSDI gives monthly cash payments to people who worked and paid Social Security taxes. Medicare is health insurance for people with disabilities. Children with Rett Syndrome may get SSI if their family meets income rules. Adults with Rett Syndrome may get SSI or SSDI, depending on their work history. All federal programs require medical proof of disability [1].
New York state programs for people with Rett Syndrome include Medicaid, Medicaid waivers, and ABLE accounts. Medicaid pays for health care, therapies, and home care. Medicaid waivers help pay for extra services like respite care, home modifications, and assistive technology. To get a waiver, you must be eligible for Medicaid and have a developmental disability. Rett Syndrome is considered a developmental disability in New York. You can apply for waivers through OPWDD. New York also has an ABLE account program. This lets families save money for disability-related expenses without losing SSI or Medicaid benefits. To open an ABLE account, you must have a qualifying disability that started before age 26 [2][3].
New York has an ABLE account program for people with disabilities. ABLE accounts let families save money for disability-related expenses without losing SSI or Medicaid benefits. You can open an account online at NYABLE.org. To qualify, you must have a qualifying disability that started before age 26. You can use the account for things like medical care, education, housing, and transportation. The account grows tax-free, and withdrawals for qualified expenses are tax-free [3].
For SSI, the income limit in 2025 is $943 per month for an individual and $1,415 for a couple. For SSDI, there is no income limit, but you must have enough work credits. For Medicaid, the income limit in New York is higher, but it depends on your situation. For ABLE accounts, you can save up to $17,000 per year, and the total account balance cannot exceed $100,000 without risking SSI benefits [1][3].
If you get too much money from SSI or Medicaid, you may have to pay it back. This is called an overpayment. To avoid overpayments, report any changes in income, resources, or living situation to Social Security and Medicaid. You can report changes online, by phone, or in person. If you get an overpayment notice, call the agency right away to set up a payment plan or ask for a waiver [4].
Contact your local Social Security office or OPWDD for help with applications. They can answer questions and guide you through the process.
Rett Syndrome is a rare genetic disorder that affects girls and women. It causes severe physical and cognitive disabilities. Most people with Rett Syndrome need lifelong care and support.
Yes, Rett Syndrome is on the Social Security Administration's list of qualifying conditions. Most people with Rett Syndrome qualify for SSI or SSDI if they meet the medical criteria.
You can apply for SSI/SSDI online at SSA.gov, by phone, or in person at a Social Security office. You will need to provide medical records, proof of income, and proof of citizenship or legal status.
A Medicaid waiver is a program that helps pay for extra services like respite care, home modifications, and assistive technology. To get a waiver, you must be eligible for Medicaid and have a developmental disability.
You can apply for a Medicaid waiver through the New York State Office for People With Developmental Disabilities (OPWDD). You will need to provide medical records and proof of disability. OPWDD will review your case and assign a case manager.
An ABLE account is a savings account for people with disabilities. You can save money for disability-related expenses without losing SSI or Medicaid benefits. To open an account, you must have a qualifying disability that started before age 26.
Disclaimer: This guide is for informational purposes only. Always check with official agencies for the most up-to-date rules and eligibility.
You can open an ABLE account online at NYABLE.org. You will need to provide proof of disability and identification. The account grows tax-free, and withdrawals for qualified expenses are tax-free.
Medicaid waivers can cover services like respite care, home modifications, assistive technology, and therapies. The exact services depend on your needs and the waiver program.
Yes, you can work and still get disability benefits. Social Security has work incentives that let you keep benefits while you try to work. You can learn more about work incentives on the SSA website.
You can report changes to your benefits online, by phone, or in person. Report any changes in income, resources, or living situation to Social Security and Medicaid. This helps avoid overpayments.
