The Cystic Fibrosis Foundation funds cutting-edge research to improve the quality of life for people with cystic fibrosis (CF) and to ultimately find a cure. The Foundation also supports a nationwide network of more than 115 CF Foundation care centers that provide high-quality, specialized care for those with the disease. Each center has a dedicated team of CF specialists including a social worker who may provide advice on financial assistance options. This page should provide you with information about financial assistance under federal and state programs. The social worker at your local CF Foundation-accredited care center center also should be able to make recommendations based on your individual situation.
Background
There is a range of public and voluntary assistance programs available in most communities to provide some amount of income, food, housing, health care and child welfare services. Unfortunately, because these programs differ greatly, there is no single source of information to learn what assistance is available and whether someone is eligible.
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Government Benefit Programs
The Old Age, Survivors, Disability and Hospital Insurance program authorized by the Social Security Act of 1935, as amended, is the nation’s largest and most comprehensive “social insurance” program. Social insurance programs also are described as entitlement programs because beneficiaries have a “right” to the benefits once they have met the eligibility conditions. A person becomes eligible for these programs through a period of employment covered by the Social Security system. Contributions (i.e., taxes) are paid by both the worker and the employer and are based upon wages earned. These contributions are then allocated to specific trust funds used to pay out benefits to eligible claimants.
Social Security (Old-age and Survivors Insurance) provides monthly cash benefits to retired workers, their dependents, and to survivors of insured workers. The program is administered by the Social Security Administration (SSA), a federal agency with about 1,300 offices across the country. To obtain more information, call the SSA at (800) 772-1213 from 7:00 a.m. to 7:00 p.m. EST, or visit www.ssa.gov.
Social Security Disability Insurance (SSDI) provides monthly cash benefits for disabled workers under age 65. The SSDI program insures against loss of income due to a worker’s physical or mental disability. Benefit amounts are related to the past earnings of the insured worker. The SSDI program is administered jointly by the SSA and state governments under contract to SSA that determine and periodically re-determine an applicant’s disability. For information contact the local SSA office or call (800) 772-1213 or visit www.ssa.gov.
Supplemental Security Income (SSI) is a federally administered income assistance program. SSI provides monthly cash payments according to uniform, nationwide eligibility requirements to financially needy elderly, blind and disabled persons. Many states also supplement the federal SSI benefit with cash grants provided from state revenues. To learn more about the SSI program contact your local Social Security Office or call: (800) 772-1213 or (410) 965-3988. Or write to:
Social Security Administration
Office of Disability
Room 454, Altmeyer Building
6401 Security Boulevard
Baltimore, Maryland 21235
Temporary Assistance for Needy Families (TANF) is a state-administered cash grant program for needy children. These children have been deprived of parental support or care because their father or mother is absent from the home continuously, is incapacitated, is deceased or is unemployed. The federal government shares the costs of the TANF program if the state agrees to follow certain federal requirements. Nevertheless, each state determines the conditions of eligibility and the benefits level. As a result, the TANF program varies widely from state to state. To learn more about the TANF program, contact the local office of your state human services department.
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Federal and State Assistance Programs
Medicare is a federal program that provides hospital and medical insurance coverage for people 65 years of age and over as well as for some disabled persons and some persons with certain medical conditions. There are several parts to the Medicare program: Hospital Insurance (Part A) is financed by the contributions (i.e., taxes) of workers and employers paid into the Social Security system. Medical Insurance (Part B) is financed by monthly premiums paid by eligible persons who choose to enroll. Medicare Prescription Drug Plans (Part D) are financed by premiums and federal taxes as well.
Medicare is administered by the Centers for Medicare and Medicaid Services (CMS), a division of the U.S. Department of Health and Human Services. Much of the day-to-day work, however, of administering the program is carried out by intermediaries who review claims and make payments.
Medicare Part D that provides the Medicare drug benefit went into effect on January 1, 2006. People with CF should choose a Part D plan that meets their medication needs and budget and are advised to also enroll in Medicare Part B, as it covers drugs such as TOBI® and Pulmozyme®, which are administered with a nebulizer or other medical equipment. Medicare Part D plans will not pay for drugs that are covered under Medicare Part B. Subsidies for those with low incomes are available for some Medicare recipients and for all dual eligibles (i.e., individuals who are eligible for both Medicare and Medicaid). Individuals with CF may request a low-income subsidy application by contacting Medicare at (800) MEDICARE or www.medicare.gov. They also may contact a local CF care center or the CF Legal Information Hotline at (800) 622-0385 or via e-mail at CFLegal@cff.org.
Medicaid is a state-administered program that provides medical assistance for those persons who are eligible for such programs as Supplemental Security Income and Temporary Assistance for Needy Families (TANF). The federal government pays approximately half the cost of Medicaid, with each state free to design and administer its own Medicaid program. This has resulted in a substantial variation in the benefits offered and the payments for different health-care services. To learn more about the Medicaid program, contact the local office of your state health and human services department.
State Children’s Health Insurance Program (SCHIP) is a program designed to extend Medicaid to children who do not meet SSI or TANF income guidelines, but who do not have sufficient resources to obtain health insurance. Under SCHIP, children younger than 18 years (or in some states, 19 years) may be eligible for Medicaid. For more information on the SCHIP program, visit www.insurekidsnow.gov or call (877) KIDS NOW.
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Nutrition Programs
The Food Stamps program is the nation’s basic food assistance program for low-income households. The program increases the food purchasing capacity of eligible low-income households to a point where they can buy a nutritionally adequate, low-cost diet. A household’s eligibility for the program, administered by the Food and Nutrition Service of the U.S. Department of Agriculture, is usually handled by the state or local welfare department.
Supplemental Food Program For Women, Infants and Children (WIC) provides food assistance and nutritional screening to low-income pregnant and postpartum women and their infants, as well as to low-income children up to the age of five. Participants in the program must have incomes at or below 185 percent of the federal poverty level and be nutritionally at risk. The federal government finances the WIC program; however, a state or local agency determines eligibility.
You also may find it helpful to contact your local public school system for information on these other programs:
- National School Lunch Program
- Child Care Food Program
- Special Milk Program For Children
- Summer Food Program For Children
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Other Programs and Tax Deductions
Children With Special Healthcare Needs (CSHCN): Formerly known as Crippled Children’s Services, and often called Children’s Medical Services, this type of state program provides medical assistance for individuals under the age of 21 who have special needs. Disability and income requirements must be met to be eligible for these programs. The benefits include direct health care services and/or assistance with medical bills. Some states have extended this coverage to individuals with CF who are over the age of 21. Contact your state health department for information about this program.
Tax Deductions: Medical expenses may be deductible if they exceed a specified percentage of the family’s income and are itemized on the federal tax return. In addition, the costs of prescribed or supplemental food also may be deducted.
For eligibility requirements, refer to Section 213 of the Internal Revenue Code of 1986. This deduction can be taken as part of medical deductions if the person has spent 7.5 percent of his/her income on medical bills. Similar deductions also may be available from your state. Contact your local IRS office or your personal tax advisor for the tax law in your state.
When seeking financial assistance, it is usually better to first contact the local branch of the federal agencies. This information is available in the blue section of your telephone book. You also may contact the federal government at www.usa.gov.
Federal Poverty Level
Many federal and state government benefit programs base eligibility on the individual’s income as a percentage of the federal poverty level or FPL. View the 2007 federal poverty levels.
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