Having chronic kidney disease(CKD) has forced you to makemany changes in your life...some

of which have been harder than others.You may have wondered if you couldever return to a “normal” life. Theanswer for many people is “Definitelyyes!” As dialysis becomes routine or asyou recover from your transplant, andas your strength and health improve,you can return to the important thingsin your life, including going to school,working, and traveling for business andpleasure. If you do dialysis, choosing to learn to do it at home will make iteasier to schedule your dialysis aroundother activities.

DDeeffiinniitteellyy yyeess!!——GGoo ttoo sscchhoooollEducation develops the mind and social skills. It challenges and inspires.It also is a key factor in how muchmoney an individual will earn over hisor her lifetime. People with CKD, of allages, can definitely go to school—from kindergarten through college andgraduate school.

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HHeeaalltthh iinnssuurraanncceeffoorr ccoolllleeggee ssttuuddeennttsswwiitthh CCKKDDIf you are the parent of a college-agechild with CKD and have a health-insurance plan at work, ask how longthat plan will insure your child. Manyplans provide coverage for children upto their early to mid-20s (the specificage is set by state or plan) if they arefull-time college students. Part-timestudents may be covered, too, becauseemployer plans often will insure depend-ent children as long as they are disabled.Your child also may be able to get astudent health plan through his or hercollege or university.

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Going to school can be as important tochildren as going to work is for adults.Yet disabled children are twice as likelyto drop out of school as healthy children.They miss getting the education theyneed for success as an adult, and theymiss the socialization of being withother children, making friends, andtaking part in after-school activities. All public schools (and many privateschools) are not allowed to discriminateagainst a child who has a disability,including kidney disease. They arerequired to set up individualizededucational programs (IEPs) for thesechildren. IEPs may include fewer hoursin school so the child can go to dialysis,or regular breaks to visit the schoolnurse for medications or to performperitoneal dialysis.

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In addition to traditional sources ofinformation on financial aid for collegestudents, some kidney organizationsoffer scholarships and grants to helppeople of all ages with kidney diseasepay tuition and other expenses. Checkwith these organizations for moreinformation:

• National Kidney Foundation affiliates:wwwwww..kkiiddnneeyy..oorrgg, click NKF Affiliates

• American Kidney Fund:wwwwww..kkiiddnneeyyffuunndd..oorrgg

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to work—and provide income as youmove toward independence in theworkplace.

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If you receive income from SocialSecurity Disability Insurance (SSDI) orSupplemental Security Income (SSI),and you’re uncertain about the kind ofwork you’d like to do, contact yourlocal Vocational Rehabilitation (VR)agency. These agencies help peoplereturn to a job or retrain for a newone. They can help you decide whatwork interests you and provide moneyfor retraining for that work. They maypay your transportation to retrainingprograms. You will continue to receiveSSDI or SSI while you’re in an approvedVR program even if your health improvesand you are no longer disabled. State Vocational Rehabilitation officesare listed at wwwwww..jjaann..wwvvuu..eedduu, click The Small Business and Self-Employment Service (SBSES), thenResources for Small Business and Self-Employment, then State VocationalRehabilitation Offices. You also can goto wwwwww..ssoocciiaallsseeccuurriittyy..ggoovv//wwoorrkk, andclick Service Providers, or call SocialSecurity at 1-800-772-1213 and askhow to contact your state VR agency.

If you received a “Ticket to Work” (sentto people ages 18 through 64 whoreceive SSDI or SSI payments), you canuse it to get free job training or help

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• Kidney and Urology Foundation ofAmerica: wwwwww..kkiiddnneeyyuurroollooggyy..oorrgg,click Patients Resources, thenScholarships

• Transplant Recipients International:wwwwww..ttrriioowweebb..oorrgg, click Resources,then TRIO Scholarships

Talk with financial aid officers at stateand community colleges in your area.You, or your child, may be able toattend one of these schools for free orat reduced cost. If you are working ona rehabilitation plan through your stateVocational Rehabilitation office, youmay be able to get help with tuitionpayments. Finally, the federal govern-ment offers grants and low interestloans to help people pay for college.To learn more about these programs,go online to wwwwww..ssttuuddeennttaaiidd..eedd..ggoovvand click on Funding.

DDeeffiinniitteellyy yyeess!!——GGoo ttoo wwoorrkkWorking and being independent arestrong values for Americans. Workbrings in the money we need to supportourselves and our families, gives us achance to be with other people, andfosters a more positive outlook on life.People with kidney disease can definitelygo back to full- or part-time work,pursue different work, or get their firstjob. Several programs can help you get

finding a job from a public or privateemployment network (EN). If you are on dialysis and work you can keep Medicare indefinitely. As long as you are disabled, you can keepMedicare Part A for free and MedicarePart B if you pay the premium for eight and one-half years. Find stateemployment networks online atwwwwww..yyoouurrttiicckkeettttoowwoorrkk..ccoomm. ClickDirectory of ENs. For information on Ticket to Work, call your localSocial Security office or visitwwwwww..ssoocciiaallsseeccuurriittyy..ggoovv//wwoorrkk and click Ticket to Work.

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Social Security Disability Insurance(SSDI) and Supplemental SecurityIncome (SSI) programs help you takeyour first steps into the workplace. TheSSDI “trial work period” (TWP) lets youfind out if you are able to work withoutgiving up your disability payments.Your SSDI check will keep coming fornine months (which don’t have to be ina row), no matter how much moneyyou earn by working. If a job pays lessthan $620 (2006) a month, it doesn’tcount against the nine-month trial workperiod. After you use all nine TWPmonths, any month you make $860(2006) or more ($1,450 if the recipientis blind) you will not get your SSDIcheck. Those who get SSI benefits andwork can keep some SSI benefits while

working. How much depends on theSSI benefits they get and the amount ofincome they get from work. Someonewith the full SSI 2006 individual benefit($603) can keep the first $185 of earnedand unearned income from a job. Afterthis, they lose $1 of SSI cash benefitsfor every $2 they earn until their SSIcheck is gone. In 2005, this occurs at$1,243 a month.

Unmarried students who get SSI underage 22 can earn up to $1,460 amonth or $5,910 a year (2006) withoutlosing benefits.

If you work and are disabled, you mayhave expenses for work that peoplewithout disabilities don’t have. Forexample, you may need specializedwork-related equipment, medicalsupplies, or a wheelchair, or you mighthave to take a taxi to work instead ofusing public transportation. If the cost isrelated to your disability and is neededso you can work, you may be able tosubtract the cost of these things fromyour monthly earnings before SocialSecurity determines if you are stilleligible for disability benefits.

The SSI “Plan for Achieving Self-Support” (PASS) program helps youwrite a plan for supporting yourself,such as going to school or buying acar for work (if public transportation isnot available). Money to put your planinto action can be set aside withoutlowering your SSI income for up to 48

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months. The work incentive specialist at your local Social Security office can tell you more about these and other programs.

If you work, find out if your state offersa Medicaid “buy-in” program. Thisprogram might let you pay a premiumand get help from Medicaid with yourmedical costs—even if you earn morethan other people with disabilities whodon’t work. To find the phone numberfor your state’s Medicaid office, call 1-800-MEDICARE (1-800-633-4227).

DDeeffiinniitteellyy yyeess!!——TTrraavveell If you have had a transplant or are ondialysis, you don’t have to stay close to home for the rest of your life. Youdefinitely can send your child to camp,take a trip to the Grand Canyon, or goout of town on business. Traveling canlift your spirits and boost your sense ofwell-being.

You will have to do extra planningbefore you leave, especially if you are on dialysis. Start by talking withyour doctor. You’ll find your doctorsupportive as long as your health isstable. Your social worker is a sourceof valuable information to help youhave a healthy and worry-free trip.Check your health-insurance plan tofind out if dialysis away from home,called “transient” dialysis, will be paidfor. Generally, insurance providers

have the following policies for dialysisaway from home:

• Private insurance plans, such asthose provided by employers: Manywill pay for dialysis in the UnitedStates; some will pay for it outsidethe United States.

• Medicare Original and MedicareAdvantage: Will pay 80 percent ofdialysis costs in the United States;will not pay for dialysis outside theUnited States; may pay part of thecosts of your dialysis treatmentswhile traveling in the United States if your private health insurance does not pay, except for some non-standard plans in Massachusetts,Minnesota, and Wisconsin. Call theinsurance company and ask if yourpolicy covers routine dialysis whenyou travel inside or outside theUnited States.

• Medigap: Some policies may notpay for dialysis treatments you get in another state. Call the insurancecompany to ask if your policy coversroutine dialysis when you travel insideor outside the United States.To readthe publication, Choosing a MedigapPolicy, go to wwwwww..mmeeddiiccaarree..ggoovv, clickon Find a Medicare Publication, andthen type Medigap in the box shown.

• Managed care organizations(MCOs)/Health maintenanceorganizations (HMOs): Often onlypay for dialysis outside their primary

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service or geographic area in anemergency; routine dialysis is notconsidered an emergency. Call yourprovider and ask what coverage you have.

• Medicaid: Most programs will notpay for dialysis outside your stateunless the dialysis clinic is a providerwith your state Medicaid. Sometimesclinics in states that border oneanother have these arrangements.

• State kidney programs: Most will notpay for dialysis outside your state.

If you are on a kidney transplantwaiting list, talk with your transplantcoordinator about your travel plans. Let your coordinator know where youcan be reached if a kidney becomesavailable or ask to go “on hold” for thetime you will be away.

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If you receive hemodialysis treatmentsat a dialysis center (or if you cannotbring your home hemodialysis machinewith you), you will need to arrange for dialysis where you will be visiting.Make arrangements at least six weeksbefore your trip—sooner if you’regoing to a popular place or travelingduring the holidays.

To locate Medicare-certified dialysiscenters in another town, city, or state,go online to wwwwww..mmeeddiiccaarree..ggoovv. ClickCompare Dialysis Facilities In Your

Area and then type in the name or ZIPcode of the place you will be visiting tosee a list of centers in that area. Thesocial worker, nursing director, or otherstaff member at your center also canhelp you locate dialysis centers, but itusually will be up to you to contactthem and schedule dialysis.

Be flexible about travel dates becausespace in dialysis centers can be limited.Ask your dialysis center to send a copyof your medical records to the out-of-town center and take another copy withyou. Confirm your appointment as soonas you arrive at your destination. Askthe chosen center to explain all chargesand how they can be billed. You may have to pay a fee for the doctor.Ask what will be billed to Medicareand/or other insurance providers andwhat portion, if any, you will have topay yourself.

IIff yyoouu aarree oonn ppeerriittoonneeaall ddiiaallyyssiiss

With peritoneal dialysis (PD), you havemore freedom to travel because you dotreatments yourself or with a partner.You’ll want to make sure you have thesupplies you need on your trip. You can take what you need with you onshort trips. For longer trips, arrange for supplies to be delivered to you. PDsupplies are shipped worldwide everyday, so it should not be hard to schedulea delivery at your destination. Carry yoursupply company’s phone number withyou in case you need to contact them.

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Easter Seals Project ACTION has a list of accessible transportation servicesin the United States serving people with disabilities. The list includes toursand tour companies, airport and other private shuttles, taxi companies,and public transit services. Go towwwwww..pprroojjeeccttaaccttiioonn..oorrgg, click FreeResources, then National AccessibleTravelers Database, and then Search.Type in the name of the place you want to visit, and a list of availabletransportation services will appear.

You also can find travel agenciesspecializing in planning for people with disabilities. Several companiesspecialize in vacation and travelplanning specifically for people ondialysis, including cruises, internationaltravel, and wilderness trips. Camps areavailable for adults and children whoare on dialysis. Contact your localNational Kidney Foundation affiliate forinformation and a directory of camps.To locate your local affiliate, go towwwwww..kkiiddnneeyy,,oorrgg, click Who We Are,then Affiliate Offices. A U.S. map willappear on the screen. Click your state.Check with your health insurance planabout payment for the cost of dialysison these trips. Generally, Medicaredoes not pay for treatments outside theUnited States. Also, check with yourhealth insurance plan to see if it will payfor dialysis outside the United States.

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Just to be safe, get a copy of yourmedical records to take on the trip andask your doctor or social worker tohelp you locate a center that offers PDin the area you’ll be visiting. Call thatcenter and ask if you can use them, ifneeded, while you’re in the area. Youcan then rest easy, knowing who tocontact if you run short of supplies orhave an emergency.

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If you have to travel because of asudden illness or death in your family,you won’t have a lot of time to scheduledialysis or supply deliveries. But don’tlet that stop you from going. You mayhave to drive farther to a center, or go at a less desirable time, but youprobably can get the treatments youneed. Many centers make every effortto treat patients visiting because of anemergency. Your social worker canhelp you locate dialysis centers, securea copy of your medical records, andschedule treatments on short notice. TheNational Kidney Foundation can helppatients and families in a variety ofemergency situations. These servicesand programs vary across the country.Contact the National Kidney Foundationfor information at 1-800-622-9010 orwwwwww..kkiiddnneeyy..oorrgg or refer to p.xx for alist of NKF affiliates.

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“If you travel and need dialysistreatments, ask the social workerat your dialysis facility to sendyour Medicare and insuranceinformation to the dialysis unityou will use on your trip beforeyour arrival. ”

Douglas RobertsonDouglas Robertson

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