CF and the Law: Your Legal Rights

Beth Sufian, an adult with CF

Spring 1996

Editor's Note: Beth Sufian, an attorney in Houston, Texas, specializes in the representation of people with disabilities. Beth has assisted hundreds of people with cystic fibrosis and their families across the country with various legal matters such as Social Security benefits, employment discrimination and insurance problems. Beth is 30 years old and has cystic fibrosis, so she is keenly aware of the importance of knowing one's rights. She will be a featured speaker at the CFRI Conference, August 2, 3 and 4, 1996). The following article will briefly introduce some of the issues she will be discussing in her talk. Her conference talk will be sponsored by American Biosystems, Inc., maker of the ThAIRapy Vest.

There are a variety of federal laws that protect people with cystic fibrosis and their families. A federal law applies to anyone regardless of the state in which one lives. In addition, many states have laws that provide additional protection for consumers with regards to health insurance benefits. There are two federal laws that provide assistance for people with CF who can no longer work. Although many adults with cystic fibrosis can work full time in a wide variety of jobs and careers, there are times when a person becomes unable to work because of the symptoms of the disease or the need for additional time to take care of oneself. The federal government provides for monthly benefit payments under two programs for those who can no longer work.

Social Security Disability Insurance Benefits (SSDI)

For those who have worked long enough to be insured under Social Security, Social Security Disability Insurance Benefits (SSDI) are available. The years of work credit needed for disability benefits depends on your age when you become disabled. Your monthly benefit will depend on how much money you have paid into the system for social security taxes. The longer you have worked and the higher your salary, the higher your SSDI monthly benefit. If you qualify for SSDI, you will qualify for Medicare coverage 24 months after the month you became entitled to SSDI benefits.

Supplemental Security Income (SSI)

The second federal program available to people who can no longer engage in substantial work activity is Supplemental Security Income (SSI). SSI is available to both disabled children and adults who have limited financial resources. SSI is an entitlement program and qualification for the program depends on your income (a family of one must have no more than $2,000 combined in savings or checking accounts and $1500 in an account set aside for burial expenses). If you apply for SSDI, your application will automatically be screened to see if you are eligible for SSI. In most states, Social Security's decision that you are eligible for SSI also makes you eligible for Medicaid coverage. Medicaid coverage will begin when you become eligible for SSI, and there is not a waiting period as with Medicare and SSDI.

Family Medical And Leave Act (FMLA) and Americans with Disabilities Act (ADA)

People with CF who can work are protected from discrimination and provided with additional leave time under two federal laws that protect people with disabilities in the employment arena.

Family Medical And Leave Act (FMLA)

To be covered by the Family Medical And Leave Act (FMLA) an employee must meet the following criteria:

Work for an employer who has 50 or more employees Have been employed for at least one year prior to requesting leave Have worked at least 1,250 hours during the preceding 12 months prior to requesting leave

The employee will be allowed 12 weeks unpaid leave a year if the employee has a serious health condition that makes the employee unable to perform the functions of his or her position. A serious health condition is an illness, injury, impairment or physical or mental condition involving inpatient care in a hospital, hospice or residential care facility or continuing treatment by a health care provider. Most people with CF will qualify as someone with a serious health condition if they are receiving treatment from a physician or if they are in the hospital for a tune-up, IV treatments or surgery. Therefore, if a person with CF has used all of his allotted sick time, he could take FMLA leave if he needs to go to the hospital to have a tune-up or receive IV treatment at home.

A family member will also be able to take FMLA leave to care for a son, daughter or spouse. FMLA leave is often a blessing to parents and spouses who have used up their vacation and sick time but need additional time off to assist their family member with CF.

Americans with Disabilities Act (ADA)

The Americans with Disabilities Act (ADA) prohibits discrimination against a qualified individual with a disability in regard to all terms, conditions, and privileges of employment. In addition, an employer must make reasonable accommodations for the employee with a disability unless doing so would be an undue hardship. The ADA also prohibits discrimination based on a relationship or association with an individual with a disability. Therefore, the ADA prohibits discrimination against employees simply because they associate with or have a family member who has CF.


There are numerous laws that protect people with regards to health insurance benefits. Many of the laws are state laws. However, the Comprehensive Omnibus Budget Reconciliation Act (COBRA) is a federal law that provides for the extension of health insurance benefits in the following situations:

The death of the covered employee The termination or reduction of hours of the covered employee The divorce or legal separation of the covered employee from their spouse The covered employee becomes entitled to SSDI benefits A dependent child ceases to be a dependent child under the plan

The above laws and others will be discussed in detail at the CFRI Conference in August 1996.

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