Planning Financially for a Child with Epilepsy

If you have a child with a seizure disorder, it's important to consider specific issues, take certain steps, and have particular paperwork in place.

Talking with an Employer

Your child's seizure disorder may mean additional time off work for medical tests and visits. Your employer may question why you are gone so frequently. You may want to consider talking with your employer about your child's disorder. Also, certain programs, such as the Family and Medical Leave Act, only apply if your employer has been informed about your family's circumstances.

Family and Medical Leave Act

The Family and Medical Leave Act requires employers with 50 or more workers to provide up to 12 weeks of unpaid leave to eligible employees who are coping with certain family or medical situations. If you take this leave to care for a family member during a serious illness, you can take the leave in small increments or altogether.

To be eligible for the leave, an employee must:

• have worked for a covered employer (typically, a "covered" employer means a private-sector employer; most government workers are not eligible for the Family and Medical Leave Act)
• have worked for a total of 12 months
• have worked more than 1,250 hours during the past 12 months. Again, to be covered by the Act, you need to tell your employer about your child's seizure disorder (or that of you or your spouse).

Keeping Records

Many companies don't mind giving you time off until your child's health is stable. Still, it's a good idea to keep careful records of all talks with your boss or people in the benefits office. Also, keep copies of your performance review. This information will come in handy if you ever feel you have been treated unfairly at work.

Health Care

• If you are changing jobs, make sure your child (and your whole family) will have continuous health care coverage.
• If you have a child who isn't covered under a health care plan, look into your state's Children's Health Insurance Program (CHIP). CHIP helps children, age 18 and younger, without health insurance. It was designed for children whose parents have incomes too high to qualify for Medicaid but too low to afford private health insurance. Each state runs its own CHIP and determines eligibility.
• Call (877) KIDS-NOW or (877) 543-7669 toll free or visit www.insurekidsnow.gov.

Life Insurance

Of course, you want to be there to watch your child turn into an adult. But, life is uncertain. That's why life insurance is important. The money from a life insurance policy can go a long way in making sure the dreams you have for your child can be realized, even if you're not around.

If your employer provides your only life insurance coverage, consider a private policy. You probably will need more life insurance than the amount offered by your employer.

Wills

Your will directs how--and to whom--your assets will be distributed. You also use your will to name a guardian for your minor children. If you die without a will, your state will determine who will look after your children. A lawyer specializing in estates should help you write your will.

Special-Needs Trust

A special-needs or supplementary-needs trust offers a way of safeguarding your child's eligibility for benefits while providing for additional needs not covered by the government.

A special-needs trust allows a trustee to pay for items and services beyond the bare necessities the government provides. For example, if your child's television were to break, the trustee could buy a new one. A special-needs trust can pay for everything from baseball games and movies to private rehabilitation.

To create a special-needs trust, take these steps:

• Review any paperwork where your child is listed as a beneficiary. This could include life insurance policies, retirement accounts, and savings account.
• Change the beneficiary from your child's name to the special-needs trust. This way, the trust inherits the assets and will not be counted as income when a determination is made whether your child is eligible for government benefits.
• Work with a qualified lawyer. This is a complicated area of the law and you will need an expert to draft the trust correctly.