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The hardest requests forassistance that I receivefrom IBD patients are theones to which I have torespond that it is too late—too late to find insur-ance for a grown child whono longer is eligible underher parents’ health insur-ance plan; too late to takeFamily & Medical Leave toavoid loss of a job; too lateto get a school to accommo-date a child with a disabili-ty because there was no sec-tion 504 plan in place.

Patients, caregivers, and parents ofschool-aged children with IBDshould think of all the things thatcan and will happen before they do

in order to avail themselves of themaximum protection afforded by law.Of course, not everything an IBDpatient deals with can be plannedfor, but certain things can. Whenplanning is possible, you shouldmake every effort to ensure that youwon’t be blindsided.

When Your Child with IBD isToo Old to Be On Your HealthInsurance Plan

All health insurance plans that allow coverage of dependents termi-nate coverage when the dependentreaches a certain age. Typically, the age is in the early 20s, but insome cases, it is tied to the timewhen your child is a full-time stu-dent. If you don’t know how longyour child can remain on your plan,my first advice is to find out. Then,plan for it.

If your child is going from school to ajob in which she has full healthinsurance coverage effective immedi-ately, then you needn’t make otherarrangements. However, that isbecoming less and less the norm.Chances are there will be a waitingperiod during which your child’s newinsurance will not cover her pre-existing IBD, or perhaps your childwill not be well enough to be a full-time student. Indeed, perhaps yourhealth care plan will not cover yourchild over age 18 even if she is inschool. If you wait, there will be agap in coverage. Not only can that beexpensive because of the cost ofmedical care, but it can allow a newinsurer to invoke a pre-existing con-dition exclusion that otherwisewould be prohibited.

The Importance ofPlanningJennifer C. Jaff

Continued on p34

Under federal law, if you go from oneemployer-based group health plan toanother, there cannot be a pre-exist-ing condition exclusion. However,that applies only if you do not have abreak in coverage of more than 63days. That means there cannot bemore than 63 days from the timeyour child’s coverage under yourplan ends and the time when hernew plan begins. How to fill the gap?COBRA.

Although most of us think of COBRAas a bridge from one employer-basedhealth insurance plan to another, italso applies when your childbecomes too old to be covered underyour plan. COBRA allows you (oryour child) to continue your insur-ance for your child for 18 months (orlonger if she is disabled at the timeshe becomes eligible for COBRA).You or your child will have to pay thepremium, but that will be far lessexpensive than an unplanned hospi-

talization if you allow the insuranceto lapse.

So your first line of defense isCOBRA. Even if your child has a planavailable at school, you will find thatthose plans generally offer lessexpansive coverage than what isavailable through your employer-based group plan. You may choose touse COBRA for as long as the lawallows, even if there is an optionoffered to students. The only timeyou won’t have the option to chooseCOBRA over an alternative is whenyour child moves into a job that alsooffers health insurance. Typically,insurers see employer-based grouphealth insurance as primary, and youcannot have two primary insurers atonce. Thus, if your child takes a jobthat offers health insurance, typically,you must let the COBRA lapse.There are two exceptions to thisgeneral rule. First, I always overlapfor a month, keeping my COBRA

until I know for sure that my newinsurance is in place. This is not aproblem unless you try to file a claimunder your COBRA policy that theother insurance would have paid,and your COBRA insurer finds outthat there is other coverage. The rea-son I keep my COBRA is so I can filea claim under my new policy andensure that it is paid before I let goof my COBRA coverage. I don’t runinto a problem because, once mynew policy kicks in, even though Ipay the COBRA premium for anothermonth, I don’t use it unless the newpolicy turns out not to cover what Ineed.

Second, if your child is not goingfrom one employer-based groupinsurance to another with fewer than63 days’ break in coverage, yourchild’s new insurance may not coverher pre-existing IBD for six monthsto a year. In that case, I suggest thatyou hold on to your COBRA policy

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The Importance of Planning

High-risk pools are not the answer for everyone. First,not all states have them. Second, the quality of theplans varies from state to state.

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and use it for IBD-related claims.Your COBRA policy becomes second-ary; you can use it only when yourprimary insurance does not coversomething. Indeed, it may take a bitof a fight to retain both policies sinceboth are employer-based and, thus,typically primary insurance.However, most likely, this fight won’tarise because you will be dealingwith two different insurers. Althoughthis is an expensive option becauseit means paying two premiums, it isfar less expensive than a week’s stayin a hospital for Crohn’s-related med-ical care.

If your child will not have the optionof a new employer-based healthinsurance plan, it is even moreimportant to know what alternativesexist. The answers will differ fromone state to the next, so the best Ican do here is to give you an outlineof what to look for.

First, many states have high-riskpools. If you have a copy of KnowYour Rights: A Handbook forPatients with Chronic Illness, seeAppendix E for a list of high-riskpools and contact information foreach state’s pool. Or you can start bycalling your state’s InsuranceDepartment. Most high-risk pools areadministered by the State InsuranceDepartment, so they should be ableto tell you where to obtain moreinformation on your State’s plan. Ifyou have Internet access and searchfor “high-risk pools,” you will findlists of available pools in the variousstates.

High-risk pools are not the answerfor everyone. First, not all stateshave them. Second, the quality ofthese plans varies from state tostate. Believe it or not, althoughthese plans are designed for people

with chronic illnesses, some of themhave a six- or 12-month pre-existingcondition exclusion. Some are veryexpensive, and some do not providevery good coverage. Pay particularattention to prescription drug bene-fits, which often are limited. The factthat your state has a high-risk pooldoes not necessarily mean thatyou’ve found a workable solution.You have to investigate your state’splan in order to determine whetherit will be of value to your child.

The other option is a “guaranteedissue” policy. Insurance companiesissue these policies because somestates require them to do so if theywish to do business in those states.If you live in one of these states,your State Insurance Departmentshould be able to provide a list ofinsurers that have guaranteed issuepolicies. However, the only “guaran-tee” is that there is a plan; there isno guarantee that it is affordable orprovides good coverage. Like high-risk pools, guaranteed issue policiescan be very expensive and/or notprovide very good coverage. Again,you must research what is availablein your state.

As you can see, all of this takes a lotof research and a lot of time. Oneexcellent source that I use a lot iswww.healthinsuranceinfo.net, aGeorgetown University Web site thathas a summary of what is available ineach state. You can choose your stateand easily determine whether thereis a high-risk pool or guaranteedissue plan; however, you still willhave to track down the details of theavailable plans on your own.Planning for the inevitable will allowyou the time to do all the necessaryresearch and find the best solutionfor your family.

Planning For Work Absences

Another area where planning is criti-cal is in the context of work.Whether you are a working patientor a working caregiver of an IBDpatient, you can count on someabsences during the year. Absencescan run from a surgery and recupera-tion period to a two-day absenceevery eight weeks for Remicade®infusions. Regardless of the length orfrequency of absences, under theAmericans with Disabilities Act, youcan be fired for absenteeism, even ifyou are absent due to a chronic ill-ness. How can you avoid being fired?The answer is to take leave underthe Family & Medical Leave Act(FMLA).

The FMLA provides up to 12 weeksof unpaid leave time in a 12-monthperiod for employers with 50 ormore employees. Some states haveless restrictive laws, providing FMLAleave for smaller employers and/orfor longer periods of time. The catch,though, is that you have to requestFMLA leave in advance; you can’twait until it looks like you are aboutto get fired because you have misseda lot of work. Once you have FMLAleave, you cannot be fired for usingit. This is the only protection againstjob termination due to absenteeismof which I am aware.

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Every person who might need FMLAleave should apply for it at the begin-ning of every year. Some employerswill ask you to fill out a form; for oth-ers, you just submit a writtenrequest in the form of a brief note.You also must provide a medical cer-tification, but you do not have toprovide detailed medical records.Your employer has the right to selectwhich of several ways the companywill count the 12-month period—itcan be the calendar year, the fiscalyear, or a rolling 12-month periodestablished by the employer. Youshould be very aware of how youremployer counts the relevant 12months.

In addition, your employer may makeyou use your paid sick and vacationleave during an FMLA leave. In gen-eral, FMLA leave is unpaid. However,your employer is not required to giveyou 12 weeks of FMLA leave and anadditional two weeks’ vacation time.Your employer can require that youapply your paid vacation and sicktime to your FMLA leave.

You do not have to wait for a crisisbefore asking (in writing) for FMLAleave. You can do so at the beginningof the year on the basis that youhave a chronic illness and, thus,some absences can be anticipatedeach year. You may or may not useup your 12 weeks of leave every year.You lose nothing by not using up allof your time.

FMLA leave ensures that you cannotbe fired as long as you do not use upmore than 12 weeks of leave time. Ifyou plan in advance, you can protectyour job; if you don’t, you can befired for absenteeism. Planning is thekey.

Section 504 Plans for School-Aged Students with IBD

Finally, all too often, I get calls fromparents whose child has made it tofinal exams, but the child has a flareduring exams and the school refusesaccommodation because it was not sought earlier in the year.Designing a section 504 plan at thebeginning of every school year canprotect against this sort of last-minute crisis.

Section 504 of the federalRehabilitation Act addresses dispari-ties in education faced by childrenwith physical disabilities. The stan-dard for determining if a child is dis-abled is the same as the test underthe Americans with Disabilities Act.Although the courts are by no meansunanimous, most children with IBDwill be found to be substantiallyimpaired in the major life activity ofdisposing of bodily waste, whichwould render them disabled in theeyes of the law.

Although most children with IBD willnot need special education services,they may need accommodation dueto their disability. For example, theymight need “stop the clock testing,”which means that the clock stopswhen the student goes to the bath-room, and starts again when the stu-dent returns to continue work on theexam. These sorts of accommoda-tions are negotiated and put in writ-ing in the form of a section 504 plan.

Two CCFA member families recentlyapproached me about creating a“template” section 504 plan for chil-dren with IBD. I worked on the tem-plate with those two families, alongwith a social worker at the IBDCenter at Boston’s Children’sHospital and two psychologists atNYU who are experts in chronic dis-ease. The template is available upon

request from either CCFA orAdvocacy for Patients. If you wouldlike it, please email me atpatient_advocate@sbcglobal.net andI will send it to you. Please note thatit is intended to cover the universeof issues that might face childrenwith IBD. No one student shouldneed the entire template as his orher actual section 504 Plan.

Once Again

Whether you’re concerned about agap in insurance coverage for yourchild or yourself, an extended leavefrom work, or that your child getsthe best education possible, the bestadvice remains the same: planahead. Resolving many of theseissues will take persistence andpatience, no matter how early youstart, but the more time you allowfor the process, the greater yourchance of reaching an acceptableresolution. More information on all ofthese topics and more, is available inKnow Your Rights: A Handbook forPatients with Chronic Illness, avail-able at www.ccfa.org/store.

Jennifer C. Jaff is a lawyer inHartford, Connecticut and the founder

and Executive Director of Advocacy forPatients with Chronic Illness, Inc.,which provides free information,advice and advocacy services to

patients with chronic diseases, includ-ing IBD. She also is a patient with

Crohn’s disease.

The Importance of Planning

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