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New York • Rare/Genetic
People with Cystic Fibrosis in New York can get help through federal and state programs. These include SSI, SSDI, Medicaid waivers, and ABLE accounts. This guide explains eligibility, how to apply, and where to find support.
People with Cystic Fibrosis may qualify for federal disability programs like SSI and SSDI. SSI helps those with low income and few resources. SSDI is for people who have worked and paid into Social Security. Both programs look at medical records and how the condition affects daily life. The Social Security Administration uses a Blue Book listing for Cystic Fibrosis (Listing 3.04) to decide if someone is eligible. Most people with Cystic Fibrosis meet the criteria if their condition is severe enough to limit their ability to work or do daily tasks.
To qualify, you must provide medical proof, such as doctor reports, test results, and treatment history. The SSA reviews your case and decides if you meet the rules for disability. If you do, you can get monthly payments and access to Medicaid or Medicare.
Source: SSA Blue Book Listing 3.04
Source: SSA Disability Benefits
New York State offers extra help for people with Cystic Fibrosis through Medicaid waivers and other programs. The Medicaid Home and Community-Based Services (HCBS) waiver helps people get care at home or in the community instead of in a nursing home. To qualify, you must be eligible for Medicaid and need a level of care that would require nursing home placement. The waiver can cover things like home health aides, medical supplies, and therapies.
New York also has programs for children with Cystic Fibrosis, such as the Children's Health Insurance Program (CHIP) and early intervention services. Adults may qualify for vocational rehabilitation services to help with job training and employment.
Source: Social Security Apply for Benefits
Source: SSA Disability Programs
Source: New York State Medicaid Waivers
Source: New York State Early Intervention
ABLE accounts let people with Cystic Fibrosis save money without losing SSI or Medicaid benefits. You can use the account for things like medical care, housing, education, and transportation. New York offers the NY ABLE program. To open an account, visit the NY ABLE website or call the customer service line.
SSI has strict income and resource limits. In 2025, the federal SSI payment is $967 per month for an individual. The resource limit is $2,000 for an individual and $3,000 for a couple. SSDI does not have income limits, but there are rules about how much you can earn while working. Medicaid and waiver programs also have income and resource limits that vary by program.
If your income, resources, or living situation changes, you must report it to avoid overpayments. Overpayments can happen if you get more benefits than you are entitled to. To avoid this, report changes as soon as possible. If you get an overpayment notice, contact the agency to set up a repayment plan.
Contact your local Department of Social Services or call the Social Security Administration for help with your application.
Cystic Fibrosis is a rare genetic disease that affects the lungs and digestive system. It causes thick mucus to build up in the body, leading to breathing problems and other health issues.
Yes, people with Cystic Fibrosis can qualify for SSI, SSDI, and Medicaid waivers in New York if their condition meets the program rules and limits their ability to work or do daily tasks.
Contact your local Department of Social Services to apply for Medicaid waivers. You will need to provide proof of income, resources, and medical need for home or community-based care.
An ABLE account is a tax-advantaged savings account for people with disabilities. It lets you save money without losing SSI or Medicaid benefits. You can use the funds for things like medical care, housing, and education.
SSI is for people with low income and few resources who are disabled, blind, or age 65 or older. SSDI is for people who have worked and paid into Social Security and are now disabled. Both programs provide monthly payments.
If your income, resources, or living situation changes, report it to the agency that pays your benefits. This helps avoid overpayments and keeps your benefits accurate.
Disclaimer: This guide is for informational purposes only. Always check with official agencies for the most up-to-date information and eligibility rules.
Work incentives help people with disabilities keep benefits while working. Examples include the Ticket to Work program, work expense deductions, and trial work periods. These programs help you earn income without losing benefits.
Yes, children with Cystic Fibrosis can get help through Medicaid, CHIP, and early intervention services. These programs provide health coverage, therapy, and family support.
The Medicaid HCBS waiver helps people with Cystic Fibrosis get care at home or in the community instead of in a nursing home. It covers things like home health aides, medical supplies, and therapies.
Use the SSI Income Estimator tool on the Social Security website. Enter your income and resources to see if you qualify for SSI based on the program rules.
