Legal Concerns

Beth Sufian is an attorney practicing in Houston, Texas. Living with CF herself, she is a strong supporter of the rights of people with cystic fibrosis and has dedicated her professional career to advocating for all those with CF. You can reach her at bethsufian@aol.com

Insurance Issues for Youth with Cystic Fibrosis During the Transition

Individuals with Cystic Fibrosis and their families face many challenges especially when the individual is a child transitioning to adult care. The cost of health insurance to pay for healthcare and the cost of co-pays for prescription drugs are two issues that have special importance for a young person with CF during the transition. Issues of government benefits may play an important role in the individuals ability to access needed medical care. Below is a brief discussion of some issues that may assist families planning for the transition of their child with CF.

General Considerations

When a child reaches 18 years of age or completes high school a parent's insurance policy may not provide for continuation of coverage. The insurance policy may have a limiting age for coverage of a young adult on their parent's policy. Each insurance policy has their own guidelines regarding coverage for a young adult on a parent's policy. Typically the policy provides coverage for a child until a certain age. If the child is a full time student at a college the insurance policy usually allows coverage to continue until college is completed. A young adult with CF who is not a full time college student or who is not pursuing additional education after graduating from high school will be faced with the possibility of no insurance coverage. There are a variety of options for the child to continue to be covered on the insurance plan or to obtain other coverage. No matter what option is appropriate it is important for parents and young adults to understand the possibilities for continuation of coverage and the conditions for such an extension of coverage. Planning for the time when coverage may lapse is crucial.

COBRA Extension of Benefits

According to the Consolidated Omnibus Reconciliation Act (COBRA), one of the qualifying events that will allow an individual to extend benefits, is when a child reaches a limiting age according to the policy. In such a situation the individual can extend coverage for 36 months. COBRA only applies to employers with 20 or more employees. In addition, the policyholder will have to pay the premiums for the child's coverage during the 36 month period. However, for the child who does not qualify for another extension of benefits, COBRA will provide much needed coverage for 36 months. During that time the family should be taking steps to secure other coverage for their child.

State Insurance Code Extension of Benefits

A child who reaches a limiting age on their parent's insurance policy may qualify for an extension of benefits according to a state insurance law. Most states have insurance laws that allow an extension of coverage for a child who reaches a limiting age on the policy but is unable to support themselves because of a physical or mental disability. The states that do not have such a provision include: Alabama, Alaska, Delaware, District of Columbia, Kansas, Maine, Oklahoma,Oregon and Rhode Island. California does have such a law which can be found at California Insurance Code Section 10277 or 10278.

In the states that provide such an extension of coverage, such as California, coverage will continue until the child is able to support themselves. If the employer was paying the premiums for the insurance policy the employer will continue to pay the premiums while the child is covered as a child incapable of self-support because of a disability. The policyholder obtains a form from the insurance company that is completed by the treating physician. The form is usually only 1 page. The treating physician certifies that the child is not able to support himself due to a certain physical or mental condition. The policyholder returns the form to the insurance company and the coverage is continued.

The policyholder should try to obtain the insurance form a few months before the child reaches the limiting age on the policy just in case there is a delay in obtaining the form or a delay in having the physician complete the form. The insurance company can request that a certification form be filed once a year and can also request information on any money the child has made working. If the child has not made enough money to support themselves the coverage should continue.

College Health Insurance Policy

Some young adults may be able to obtain insurance coverage because they are a student at a college or university. Such an insurance policy will require that the young adult be enrolled as a student at the school. Each policy provided will be different. While some policies offered by colleges and universities provide good coverage other policies offer very limited coverage. Therefore, the young adult should make sure they understand exactly what is covered by the policy. For a young adult with no other insurance options, a policy sponsored by a college or university may provide much need coverage for necessary medical treatment.

Small Group Employer

The young adult who wants to start their own business will be able to purchase a group policy if there are two people employed in the operation of the business. According to HIPAA, a small business that employs 2 or more employees must be given the opportunity to purchase a group health insurance policy by any insurance company that sells group policies. Therefore, the young adult who starts a business repairing computers and also employs one other person will be able to purchase a group policy. The small business must be a legitimate business and the two employees must be paid for the work done in furtherance of the business.

A person can purchase a group policy by either calling an independent agent who will give a variety of options the business can purchase. The person can also contact a specific insurance company to purchase a group policy. There are no limits on the premiums that can be charged for the purchase of the policy. If there are only 2 employs employed by the business both employees must be covered by the policy.

In some states, state law provides that a business that employs one person must be allowed to purchase a group policy. For example in Florida, a business made up of one individual can purchase an insurance policy form any insurance company that sells group polices in Florida. Therefore, a young adult with mental healthcare needs who has his own business but employs no one else could purchase a group policy in Florida.

SSI Benefits and Medicaid Coverage

For the young adult who is unable to work due to his medical condition and who does not have coverage under a parent's insurance policy, qualification for SSI benefits may provide the answer. Once an individual turns 18, SSI benefit qualification is based on the young adult's income. Therefore, a child who had been denied SSI coverage because his parents income did not meet the SSI guidelines may meet the income guidelines once the child turns 18. If the young adult lives with one or both parents he should have a written agreement to contribute to household expenses once his SSI benefits begin. The young adult should also have a written agreement to reimburse his parents for money they spent to support him while the SSI application was pending. If both such agreements are in place the parents income should not be considered income of the young adult.

In addition to meeting income guidelines, the young adult must also meet medical guidelines in order to qualify for SSI benefits and must not be engaged in substantial work activity which for purpose of SSI means not making more than the SSI benefit amount after certain deductions for medical expenses and other items are taken into account.

SSI Benefit Review

If a child has been receiving SSI prior to turning 18 the child's benefit status will be reviewed when the child turns 18. If benefits are terminated after the review, the young adult will have 10 days to appeal the denial. If an appeal is filed within 10 days the young adult will continue to receive benefits while the appeal is pending.

State Program of Insurance for Individuals with Special Health Care Needs

There are a variety of states that have programs that provide insurance coverage for young adults with mental health problems. Qualification for each program depends on the specific state's guidelines for eligibility for the program. Most state insurance programs for insurance with special health case needs have higher income cut offs than the SSI program. In California, GHPP is a state program that may offer insurance to young adults with CF. Ask your CF Care Center social worker or nurse for more information about this program.

Nothing in the article above is meant to be legal advice about your specific situation. If you have questions contact your CF Care Center team who have recently received a new book, the Advocacy Manual: A Clinicians Guide to the Legal Rights of People with CF. The manual was written by Beth Sufian and James Passamano attorneys who assist individuals with CF and their families with legal matters and by Suzanne Pattee an attorney and Vice President at the CF Foundation. The Manual has extensive information on Social Security benefit, insurance coverage, education and employment legal protections