Adapting: Financial Planning for a Life with Multiple Sclerosis

Adapting:FINANCIAL PLANNING FOR A LIFE WITH

MULTIPLE SCLEROSIS

Adapting:

Adapting:FINANCIAL PLANNING FOR A LIFE WITH

MULTIPLE SCLEROSIS

Adapting:

Note: The content areas in thismaterial are believed to be currentas of this printing, but, over time,legislative and regulatory changes,as well as new developments, maydate this material. This booklet ismeant to provide general financialinformation; it is not meant to substitute for, or to supersede, professional or legal advice.

© 2003 National Endowment forFinancial Education®.All rights reserved.

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

Chapter 1: Where I Am Today . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

Getting Organized . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6Reaching Out for Help . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8Locating Important Papers and Telephone Numbers . . . . . . . . . . . . . . . . . . . . . . . . . . . 9Taking a Financial Inventory . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11Using a Health-Expense Spreadsheet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12Prioritizing Your Bills . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13Reviewing Your Health-Care Plan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

Co-Payment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14Deductible . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14Co-Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15Covered Expenses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15Pre-Existing Condition Exclusion Period . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15Lifetime Maximums . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16Prescription Drugs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

Applying for VA Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18

Chapter 2: Moving Forward After Initial Diagnosis . . . . . . . . . . . . . . . . . . . 20

Helpful Organizations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20Employment Issues—Current Employer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21

Continuing to Work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22Deciding Whether to Tell an Employer About MS . . . . . . . . . . . . . . . . . . . . . . . . . . 23Leaving Work Temporarily . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23Understanding the Americans with Disabilities Act . . . . . . . . . . . . . . . . . . . . . . . . . . 25

Employment Issues—Changing Jobs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28Looking for a New Job . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28Job Changes and Health Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29Options for Bridging the Gap Between Health-Care Plans . . . . . . . . . . . . . . . . . . . . . 30Other Useful Job Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31

Considering Self-Employment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32Life Without a Health-Care Plan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34Hiring Home Help . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34Adapting Your Home . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38

Managing Costs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38Tips for Renters . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39

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TA B L E O F CO N T E N T S

Chapter 3: Taking Control of Finances . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42

Developing a Spending Plan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42Coping with Debt . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47Looking at Investments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47Hiring a Financial Professional . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48

Interviewing Financial Professionals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48Setting Aside Money for Unexpected Expenses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49Savings and Government Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50

Chapter 4: If MS Progresses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52

Leaving Work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52Taking Advantage of Leave and Flextime . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52Using Family and Medical Leave . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53Exploring Disability Insurance Policies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53

Applying for Government Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54Social Security Disability Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54Supplemental Security Income . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55Applying for SSDI, SSI Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 56

Returning to Work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57Tapping into Other Sources of Income . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 58Continuing to Care for Yourself and Your Family . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 60

Chapter 5: Handling Estate Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62

Life Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62Estate-Planning Paperwork . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63

Will . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63Beneficiaries . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63Durable Power of Attorney . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63Health-Care Proxy and Living Will . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 64Special-Needs Trust . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66

Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 68

Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72

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Multiple sclerosis (MS) is acomplex and unpredictabledisease that affects approxi-mately 400,000 people in the

United States. If you or a loved one has MS,you know there are good and bad days,because MS is not a “one-size-fits-all”condition. You will find your own way of adapting, whether through the rightmedications, diet and exercise, or copingskills you will learn.

Another part of navigating MS is managingyour money and planning wisely for thefuture. Just as your MS symptoms are notexactly like someone else’s symptoms, yourfinancial situation also is unique. Now morethan ever, you will need to take a clear lookat your income, assets, debts, benefits, andother resources.

At first glance, getting a good handle on yourfinances may seem overwhelming. If you giveyourself some time and have a little patience,however, you can accomplish this step.

To make the process easier, the NationalEndowment for Financial Education®

(NEFE®), the National Multiple SclerosisSociety (NMSS), and the Paralyzed Veteransof America (PVA) have produced Adapting:Financial Planning for a Life with MultipleSclerosis. The goal of the booklet is to helpyou meet the financial challenges that canaccompany MS, so you can focus on livingyour life to its fullest.

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I N T R O D U C T I O N

“When we are no longer able to change a situation,we are challenged to change ourselves.”

—Victor Frankl, psychotherapist, author, and Holocaust survivor

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Being diagnosed with multiplesclerosis (MS) is a major event—and you may think you need tomake major changes in your life

right away. This can be especially true if youare going through a flare-up, or exacerbation,of your MS symptoms.

As difficult as this is, don’t panic. Dependingon your symptoms, you may need to dosome adapting, but you probably don’t haveto make major lifestyle changes immediately.If you have a job, don’t resign. If you own a home with stairs, don’t sell it yet. Instead,try to keep in mind that the majority of people with MS do not become severely disabled.

Getting OrganizedStart by devoting some time to exploring,learning, and recording. First, find out as much as you can about MS. Both theNational Multiple Sclerosis Society (NMSS)and the Paralyzed Veterans of America (PVA)offer helpful Web sites and useful publicationson a variety of MS-related topics. Visitwww.nationalmssociety.org, www.pva.org,and check the Resources section at the backof this booklet to get started.

Next, keep track of your MS symptoms. An “MS journal” may be helpful. Documentthe ups and downs of your disease—whathelps and what doesn’t. Then, plan how youwill use this information when you talk toyour doctor or employer, file an insuranceclaim, apply for Social Security or otherdisability benefits, and take other steps toadvocate for yourself.

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WH E R E I AM TO D AY

Chapter 1“When I was first diagnosed with MS, I asked ‘Am I going to die?’The doctor said that, yes, someday I would die—but not fromMS. That was more than 25 years ago. Since then, I’ve had myups and downs, but I’m still around, I still love life, and I’vealways managed to find a way to pay for the things I need.”

—Leslie, diagnosed in 1978

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Record details regularly about your symptoms and treatment to help develop a clearer picture ofyour MS. This information can provide the basis for a conversation with your doctor, employer,or insurance company. It also can help support your requests for any changes to your environment,medications, or work schedule that may become necessary.

• Are there certain times of the day when I routinely become tired?________________________

__________________________________________________________________________

• Does a short nap renew my energy? ______________________________________________

__________________________________________________________________________

• What exhausts me most—physical or mental activities? ______________________________

__________________________________________________________________________

• How am I reacting to medications? Are there any side effects?__________________________

__________________________________________________________________________

• Have there been any changes in medications or dosage? ______________________________

__________________________________________________________________________

• What type of exercise seems to work best for me?____________________________________

__________________________________________________________________________

• What activities are difficult for me to perform? ______________________________________

__________________________________________________________________________

• What adaptations have helped me perform activities more easily?________________________

__________________________________________________________________________

• How well am I moving around inside my home and at work?__________________________

__________________________________________________________________________

• Am I struggling with depression, sexual problems, or sleep deprivation?__________________

__________________________________________________________________________

• Have I experienced muscle stiffness or spasms?______________________________________

__________________________________________________________________________

• How do I react to certain air temperatures or other weather conditions?__________________

__________________________________________________________________________

• Have I recently experienced a new symptom? ______________________________________

________________________________________________________________________

My MS Journal

Reaching Out for HelpFatigue is the most common MS symptom.This is especially cruel given that youprobably are juggling more tasks now thanever before. While you may be dealing withneurologists, clinics, insurance forms, andbenefits issues, you also may be a parent,spouse, employee, and homeowner.

Try not to let all of these responsibilitiesoverwhelm you. Allow family and friends tohelp—in fact, they may need to help. This istheir way of fighting MS on your behalf. Tryto find ways they can take on certain tasks,such as organizing your bills or runningerrands. Develop a network of friends andloved ones you can call on from time totime. That way, no one person will take ontoo many tasks.

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CH A P T E R 1

“When my mom was diag-nosed with MS almost 30years ago, it was a timewhen most parents didn’ttalk about diseases withtheir kids. All I knew wasthat my mom wasn’t likeother moms. One day shemight go hiking with us; the next day she might spendin bed. Sometimes I worriedthat I caused her to be sick—and there were times when I resented her for being sick.I think that if I had beentold about the MS sooner, I could have understood whatwas happening, and I couldhave helped her more.”

—Evan, son of Margaret, diagnosed in 1975

Locating Important Papersand Telephone NumbersImportant papers include the following:

❏ Birth certificate

❏ Checking and savings account information

❏ Durable power of attorney document

❏ Employee benefits information

❏ Insurance policies (life, health, disability,and long-term care)

❏ Investment account information

❏ Loans, including credit card statements

❏ Marriage certificate

❏ Military records

❏ Mortgage/deed of trust

❏ Social Security card

❏ Tax returns

❏ Titles (auto, house, etc.)

❏ Will

Finding these papers can be one of the tasksgiven to a partner or trusted friend. Ask thisperson to make copies and put them inlabeled file folders that you can get to easily.Reviewing your important papers may helpto identify resources and assets that can helpyou pay for the management of your MS.

In addition, use the worksheet above to listthe names and phone numbers of professionalswho can help you with financial questions.These professionals may include youraccountant, insurance agent, caseworker,financial planner, and lawyer.

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CH A P T E R 1

Advisor’s Name Phone Number

Accountant/tax preparer

Caseworker

Financial planner

Insurance agent

Lawyer

Other

My Professional Advisors

“My friends kept asking me how they could help, so I decidedto make a list of things that are difficult for me to do andwould be expensive if I had to hire someone to do them.Now, I show the list to my friends when they offer theirhelp, and they can choose one or two items from it.”

—Vivian, diagnosed in 2001

Taking a FinancialInventoryReview your MS journal to see if yoursymptoms may lead to additional expenses.For example, you may need to pay forregular massages to lessen muscle stiffness,or buy an air conditioner to keep your homecool because of sensitivity to heat. Thespending plan worksheets, found in Chapter3, also can help you estimate your monthlyincome and expenses.

Next, write down an estimated value ofeverything you own and the dollar amountof your debts. You’ll need this informationas you plan for future expenses or apply forany benefits that are based on financial need.As you do this estimate, take into considera-tion the IRS’s definitions of value (go towww.irs.gov) and consider obtaining aprofessional appraisal of valuable assets, such as your home, artwork, jewelry, orother collectibles. Your accountant or other financial advisor can guide you.

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Using a Health-ExpenseSpreadsheetAnother step you or a loved one can take isto create a health-expense spreadsheet. Thespreadsheet should list items such as:

• Dates of doctor visits, hospital stays, or other treatments

• Charges for medical services, prescriptions,and medical supplies

• Portions of expenses covered by a health-care plan

• Amounts and dates that you paid for health-care services, and anyremaining balances

• Dates any deductibles were met, if applicable

Software programs can help you create aspreadsheet—and even do the math for you. If you do not own a computer, you cancreate a spreadsheet in a notebook or use theone provided on page 13. Remember to keepcopies of your supporting paperwork: doctorbills, health insurance statements, canceledchecks, and bank statements in labeled file folders.

Realize that mistakes can happen whenmedical claims are processed. Even thoughthese mistakes usually are unintentional,they can be costly. Check with your health-care plan to see if it will share savings resultingfrom any errors you find in medical bills.Take careful notes while in the hospital orreceiving treatment, and check the billagainst your notes.

If you find possible billing errors, first try toresolve them with the doctor’s or hospital’sbilling office. Next, get in touch with yourhealth insurance company.

If the matter remains unresolved, contactyour state’s consumer protection office orinsurance regulatory agency to file a complaint.Look in the blue pages of the phone book.Another source of help, if you are covered by Medicare, is the State Health InsuranceProgram (SHIP). To find a SHIP in yourstate, call the Eldercare Locator, a free publicservice of the U.S. Administration on Aging,at 1-800-677-1116.

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CH A P T E R 1

Prioritizing Your BillsMS and its related costs can strain yourfinances, but it is important to pay your billson time to maintain a good credit rating. If this is not possible, decide which bills arethe most important and pay them first. (Forexample, it is important to pay your healthinsurance bill so you do not lose coverage.)

You also can call the people and companiesto whom you owe money. Explain yoursituation and ask if you can have longer topay. Many companies have options that willgive you more time or may have specialprograms to help you pay your bills.

(For more suggestions about managing debt,see Chapter 3.)

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My Health-Expense Spreadsheet

Date of Service/ Amount/Date Paid Amount/Date Paid Date Deductible Date Out-of-PocketMedical Purchase Charges by Health-Care Plan by Me and/or Co-Insurance Met Limit Reached

Reviewing Your Health-Care PlanAs soon as possible, review your health-careplan, so you will know what the plan willcover, what is excluded, and what your out-of-pocket expenses may be. Having this information will help you plan foranticipated medical expenses and strengthenan appeal on a claim if you believe it wasdenied incorrectly.

Health-care plans can be difficult to read andunderstand, but there are people who canhelp you. Check the back of your health-carecard for phone numbers to call for informationabout your plan. If your health-care plan isprovided through an employer, someone inthe employee benefits department may beable to answer your questions.

When reviewing your plan, determine if it isa major-medical plan or a managed-care plan,such as a health maintenance organization(HMO), preferred provider organization(PPO), or point-of-service plan (POS). Payparticular attention to information about co-payments, co-insurance, deductibles, pre-existing condition exclusion periods, lifetimemaximums, and prescription drugs. Thesetopics are discussed in the following sections.

Co-PaymentMost managed-care plans require you to pay a small amount, called the co-paymentor co-pay, each time you visit a health-careprovider within the plan’s network. Theamount of the co-pay may change annually.If your plan also has a deductible, the co-paywill not count toward it. Major-medical plansand some major medical-type benefits undermanaged-care plans do not have a co-pay.

DeductibleA deductible is the amount you must payeach year before a major-medical plan paysany expenses. For example, if your health-care plan has a $500 deductible, you mustpay the first $500 of covered medical costsbefore the plan begins to kick in. (If thetreatment is not covered by the plan, the costfor that treatment will not count toward thedeductible.) Managed-care plans, such as aPPO, HMO, or POS, may have a deductibleif they permit care from out-of-networkproviders. Review your plan to determinewhich provisions apply to the provider youwant to use.

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CH A P T E R 1

Co-InsuranceCo-insurance is the portion of a health-careexpense that you pay in addition to thedeductible (when these provisions are part ofyour plan). A typical co-insurance provisionsays that after the deductible is paid, thehealth-care plan pays 80 percent of coveredcharges for a treatment. You pay the other 20percent. The percentage is your co-insuranceamount. Plans vary as to the amount theyexpect you to pay.

Most plans have a “stop-loss,” “breakpoint,”or “out-of-pocket” limit. This is the maximumamount you will have to pay per person, or per family, each year. For example, aninsurance company may have a stop-loss of $5,000. After you have paid $5,000 indeductible and co-insurance payments, theinsurance company will pay 100 percent ofcovered expenses for the rest of the year.Check your plan for details.

Covered ExpensesRegardless of the amount charged by aprovider, a plan will only cover certaintreatments for certain amounts. Make sureyou know what your plan considers a“covered expense,” and if your health-careprovider will accept the plan’s payment orwill bill you for any amounts not covered by the plan.

Pre-Existing Condition Exclusion PeriodA pre-existing condition is a medical problemyou had before you joined a health-care plan.With a pre-existing condition, you may haveto wait a period of time before the plan willcover that medical condition. This length oftime could be three months, six months, orone year. As a rule, a group health plancannot make you wait more than one yearunless you did not enroll in the plan whenfirst offered, in which case the waiting periodmay be as long as 18 months.

Under the Health Insurance Portability andAccountability Act (HIPAA) of 1996, youwill not have to meet a pre-existing conditionexclusion period under a new plan if:

• You have had medical coverage for 18months before changing to a new plan,

• You already have met a pre-existingcondition exclusion period under aprevious plan, and

• You have not been without health-carecoverage for more than 62 days in the last12 months.

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Lifetime MaximumsHealth-care plans usually limit how muchthey will pay for health care through a“lifetime maximum benefit.” When the limitis reached, the health-care plan no longerpays for medical care. There also may be alimit for a single illness, injury, or condition,or an annual limit on certain medical servicesor equipment.

CH A P T E R 1

“MS is affecting my body,but one thing I can do iscalm my mind. For me,meditation is vital. It hasadded a wonderful dimensionto my life—and it doesn’tcost a penny.”

—Marion, diagnosed in 1996

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Prescription DrugsDrugs for MS can be expensive. For example,the major drugs approved by the Food andDrug Administration (FDA) for relapsing-remitting MS can cost between $10,000 and$14,000 a year. Plus, you likely will requireother medications to manage the disease andits side effects. Even if your health-care planoffers prescription drug coverage, you mayhave to pay part of the cost of these medica-tions, so it’s important to plan for this expense.

Start by finding out whether the medicationsyou need are covered by your health-careplan. This information is available in theplan’s “formulary,” which is a list of drugsthe plan will cover. Many health-care planscover some or all of the drugs that have beenshown to modify or slow the course of MS.

If you are having difficulty paying for yourmedications, consider the following options:

• The companies that manufacture themajor disease-modifying drugs may offerprescription drug assistance programs.Each program has its own qualifications.Begin by reading Comparing the Disease-Modifying Drugs, published by NMSS.

• Information about other prescription drugassistance programs for people with limitedresources can be found on Medicare’sWeb site at www.medicare.gov, or go towww.phrma.org. Several states also haveprescription drug assistance programs.

• Talk to your doctor about prescribing aless expensive drug or helping you applyfor a prescription drug assistance program.

• Shop for the best price—and the bestpharmacy. Compare local prices with mailorder or online pharmacies, includingdelivery charges. If you decide to use amail order or online pharmacy, chooseone that requires a written prescriptionfrom your doctor. Be careful about usingforeign pharmacies, because of the impor-tance of ensuring that the product youorder is genuine, of the right strength,and uncontaminated.

• Order a copy of Free and Low CostPrescription Drugs. This 48-page bookletfrom the nonprofit Cost ContainmentResearch Institute lists nearly 1,200brand-name drugs available from drugcompanies at a large discount for thosewho qualify. The booklet costs about $5.For ordering information, visit theInstitute’s Web site at www.institutedc.org.

• If you are a veteran, you may qualify forDepartment of Veterans Affairs (VA)health benefits, which include prescriptiondrugs. You must enroll to receive benefits.For more information, see page 18.

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Applying for VA BenefitsIf you are a veteran discharged from activemilitary service under other than dishonorableconditions, you may qualify for medical careand services from the Department of VeteransAffairs (VA). Even if you have other health-care coverage, apply for VA benefits if you are a veteran to allow the VA to determine youreligibility. That way, if one program does notcover all of your health-care expenses, youmay be able to get coverage from another.

The VA health-care system is run by theVeterans Health Administration, which worksthrough a network of hospitals, clinics,nursing homes, and readjustment counselingcenters known as vet centers.

To enroll in the VA health-care system, youmust complete VA form 10-10EZ. You canobtain the form by visiting, calling, or writingany VA health-care facility or veterans benefitsoffice. You also can order the form by calling1-877-222-VETS (1-877-222-8387) orvisiting www.va.gov/vaforms. For generalinformation about VA health benefits, visitwww.va.gov and click Health.

When you apply, VA first will verify thatyou are eligible. Next you will be assigned apriority number (from 1 to 8; 1 is the highest-priority group). Several factors—such asdegree of disability, whether the disabilitywas service-related, whether you are eligiblefor Medicaid, and so on—are used todetermine your priority group number.

Tip: Contact PVA or another veteransservice organization for assistance in applyingfor VA benefits. These organizations can helpyou make your case for eligibility, which canbe especially important if your MS symptomsdid not appear until several years aftertermination of active military service.

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CH A P T E R 1

Also keep in mind that if your MS progresses,you may be entitled to additional benefits. If you feel that VA has not assigned you thecorrect priority number or has incorrectlydenied you benefits, appeal the decision.Again, PVA or another veterans serviceorganization can help you with the appeals process.

19

By now, you may have gathered theinformation and documents thatwere suggested in Chapter 1. Youalso may have set up a support

network of friends and family. But now what?You still may have unanswered questions,such as:

• Will I be able to keep my job?

• Will I be able to change jobs?

• Will I need to hire someone to help meat home?

• Will I be able to stay in my current home?

This chapter will help you answer thosequestions and find ways to view MS not as a wall to stop you, but as a hurdle to clear.

Helpful OrganizationsNMSS and PVA both offer a number of helpful publications, and each has a Web site (www.nationalmssociety.org andwww.pva.org). Many of their publicationscan be obtained through local chapters, areavailable online, or can be ordered for littleor no charge. The Resources section at theend of this booklet lists other useful publi-cations and Web sites.

In addition, the PVA and NMSS Web sitescan put you in touch with local chapters andsupport groups. This is an excellent way tolearn more about MS, tap into local resources,and share your experiences with others whohave the disease.

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MO V I N G FO R WA R D AF T E R IN I T I A L D I A G N O S I S

Chapter 2“Before I was diagnosed with MS, I was so busy with the detailsof just living my life. After my diagnosis, I learned a lot aboutmyself . . .who I was. . .what was truly important to me. . .how Icould make do with less. I’ve gained perspective I never hadbefore—I wish I could keep that but drop the MS.”

—Darius, diagnosed in 1990

Employment Issues—Current EmployerPeople with MS often continue to work longafter the illness manifests itself. Keeping ajob and maintaining a career aren’t alwayseasy tasks, of course. You will have to monitoryour symptoms and perhaps make specialadaptations to your workplace. You also must decide when and whether to tell your employer about your MS.

The following sections will help you work through these issues.

21

“My husband’s boss wasincredible after he learnedabout Stan’s MS. He providedeverything Stan needed toset up an office at home. We didn’t even have to ask for anything or bring up the Americans withDisabilities Act.”—Gillian, wife of Stan, diagnosed in 2001

Some people with MS remain productivelyemployed, while others with similar levelsof disability do not. According to NMSS,certain factors appear to be related to jobretention, including:

• Basic knowledge of MS

• Knowledge of employment rights

• Symptom management throughmedications and therapy

• Use of assistive devices and workplaceaccommodations

• Career planning based on expert advicerather than the well-meaning but oftenuninformed advice of family, friends, and co-workers

Continuing to WorkIf you and your doctor agree that you cankeep working, try to do so. For most people,work is about more than a paycheck andbenefits (such as health-care coverage). Workalso provides interaction with other people,a sense of accomplishment, and a source ofself-esteem.

Keep in mind that depression is a commonMS symptom. Depression certainly can bethe result of the chemical changes happeningin the brain because of MS. However, depres-sion also can occur when a person feelsisolated, or when the weight of living with a chronic disease becomes too great. A jobmay help fight these feelings.

Still, your MS symptoms may require changesin how you perform your job. For example,you may need to take more frequent breaks,reserve a parking space near your officebuilding, or change the way you do yourjob. These changes, called “reasonableaccommodations” under the Americans with Disabilities Act (ADA), are discussed in greater detail later in this chapter.

Tip: Avoid making important decisionsabout work—or anything else—if you are inthe middle of a serious flare-up. Symptomscan color your judgment. Wait until you feel better.

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CH A P T E R 2

What Makes the Difference?

Deciding Whether to Tell anEmployer About MSThe decision whether to tell an employerabout MS is a very personal one. You do nothave to disclose the specific diagnosis of MSunless you choose to do so, but there maybe reasons to consider telling your employerabout your symptoms or disability:

• Some MS symptoms, such as blurredvision or lack of balance, may bemistaken for drug or alcohol problems.

• You may need additional time off fordoctor visits or for recovering from flare-ups. Your employer will want to knowwhy you are absent so often.

• You may have difficulty in performingyour job because of MS symptoms. Inthis case, it may be a good idea to explainthe situation to your employer before heor she takes any disciplinary action.

• If you decide to apply for employer-paiddisability benefits, your employer mustknow about your MS.

• The laws that help protect you from jobdiscrimination, such as the ADA, generallyapply only if your employer knows thatyou have a disability.

If you do decide to tell your employer, spendsome time explaining your MS symptoms.(See “My MS Journal” in Chapter 1.) Forexample, if your symptoms are more cognitivethan physical, your employer may not under-stand why you can look well, but have troubleremembering instructions. Few peopleunderstand that MS also can involve these“invisible” symptoms.

In addition, keep records of talks with yourboss or people in the benefits office, andkeep copies of your performance reviews.This information will come in handy if you ever feel you are being treated unfairlyat work.

Leaving Work TemporarilyFlare-ups can make working impossible, atleast for a while, and you may need to leaveyour job temporarily. There are severalresources to help you cope with leaving—and then returning to—your job.

23

Sick Leave and Vacation

Your employer may allow you a number ofdays off—with pay—to recover from anillness. Sick leave is useful, but the time offusually is limited to about five to 10 daysper year. Also, if you miss work for severaldays, your employer may want to know thenature of the illness and when you expect toreturn. If you prefer not to disclose thediagnosis of MS, you can respond to theemployer in terms of the symptoms thathave necessitated an absence from work.

In addition to sick leave, consider using paidvacation days to cover a necessary absencefrom work to recover from a flare-up. Afteryour vacation days have been used, ask youremployer if you can take additional days ofpaid leave you may have accrued or unpaidleave (see below).

Family and Medical Leave Act

The Family and Medical Leave Act (FMLA)of 1993 requires employers with 50 or moreworkers, and all public/government employers,to provide up to 12 weeks of unpaid leave ayear to eligible employees coping with certainfamily or medical situations. You can takethe leave in small increments or all at onceto care for yourself or an immediate familymember, with the guarantee that you cankeep your job and your health-care benefits.Generally, the employer may decide whetherFMLA time can be taken in installments.

To be eligible for FMLA leave, an employee must:

• Have worked for an employer that iscovered by FMLA,

• Have worked at the company for a totalof 12 months, and

• Have worked at least 1,250 hours duringthe past 12 months.

Employers may require employees to providemedical certification supporting the need fora leave due to a serious health conditionaffecting the employee or an immediatefamily member. In addition, when intermit-tent leave is needed for medical treatment,the employee must try to schedule thetreatment so as not to unduly disrupt theemployer’s business.

Short-Term Disability Insurance

You may have disability insurance throughyour employer or on your own. The insurancemight pay you a benefit if you experienceeither a short-term or a long-term disabilitythat prevents you from working. Long-termdisability insurance is discussed in Chapter 4.

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CH A P T E R 2

Keep in mind that even though an exacer-bation is temporary, it can be disabling.Short-term disability insurance can help you through these times. With short-termdisability insurance, which usually is availableonly through an employer, you can qualifyfor benefits within a few days or weeks ofbecoming disabled. The benefits can stopafter a varied number of months, dependingon the policy. Typically, you will be paidabout 40 to 60 percent of your wages. Youmust report the benefit as taxable income if the employer paid the premiums for the insurance.

Understanding the Americanswith Disabilities ActThe Americans with Disabilities Act (ADA)of 1990 also may protect you from jobdiscrimination. In general, this law appliesto workers in companies that have 15 ormore employees. (Federal employees arecovered under the Rehabilitation Act of1973, which has been amended to make itsprotections similar to those provided underthe ADA.)

Under the ADA’s definition, you have adisability if you have substantial difficulty in performing a major life activity, such asseeing, walking, speaking, doing tasks withyour hands, learning, or working in a broadrange of jobs.

If this definition applies to you, youremployer is required to make a “reasonableaccommodation” to allow you to do yourjob. However, you must be qualified toperform the job, with or without reasonableaccommodation. In addition, your employeris not required to make any changes unlessyou request them.

There is no single definition of what is areasonable accommodation, but it generallycan be defined as a workplace adjustmentthat compensates for an employee’s limitations.The accommodation might be as simple asproviding a parking space close to youroffice. Other examples include a flexiblework schedule, a computer keyboard that iseasier for you to use, or room at your deskfor a special chair.

Employers are expected to tailor changesaccording to a person’s specific needs, butthe changes must not cause the employer“undue hardship.” Before requesting a change,do some research on what you need andprovide a cost estimate, if possible. (Manyaccommodations cost employers less than$500, according to the Job AccommodationNetwork.) In addition, consider talking toyour employer in terms of how the changewill enhance your productivity on the job,rather than presenting it as a legal obligation.

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CH A P T E R 2

Here are some other things to know aboutyour rights under the ADA:

• An employer cannot ask if you have adisability, or how severe it is, unless suchinquiry is job related and consistent withbusiness necessity.

• If you need an accommodation, anemployer cannot deduct the cost fromyour pay or ask you to pay for it. If theaccommodation would be an unduehardship for the employer, however, theemployer must give you the choice ofproviding it yourself or paying for a share of it.

• A prospective employer cannot ask you tohave a medical exam before offering you ajob. After offering you a job, the employercan ask you to have a medical exam if allemployees in that position are required to do so. Your medical records must bekept confidential.

• An employer must offer you the samehealth-care benefits offered to otheremployees, but employers are not requiredto offer extra benefits to cover yourparticular medical condition.

• An employer can ask if you are able toperform the essential duties of a job.

• If you have an obvious disability thatappears to interfere with performing job tasks, the employer can ask you todescribe or demonstrate how you wouldperform the tasks and whether you needa modification (or accommodation) tohelp you do them.

The Job Accommodation Network (JAN)can provide more information about jobaccommodations and working with adisability. JAN is a free service funded by the U.S. Department of Labor, Office ofDisability Employment Policy. You canreach JAN at 1-800-526-7234, or visitwww.jan.wvu.edu.

Disability and Business Technical AssistanceCenters, located across the United States,also provide information about reasonableaccommodation. The centers’ specialists cananswer most questions you or your employermay have about the ADA, and they canresearch more complex questions if necessary.Call 1-800-949-4232 or go to www.adata.org.

1. This is what I will tell (or not tell) my employer about my MS:__________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

2. These are the job accommodations, if any, I will ask for and their estimated costs: __________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

3. These are other steps I will take to manage my job: ____________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

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My Plan for Managing My Job

“I was able to get a job after being diagnosed with MS. My boss told me it didn’t matter that I couldn’t movequickly around the office; he needed someone to supportpeople over the telephone. He said he knew I would do a good job—and every day I try to do just that.”

—Candice, diagnosed in 1989

Employment Issues—Changing JobsAt some point, you may think about changingjobs. Perhaps you feel you no longer canperform your current job because of yourMS symptoms. Perhaps you see better oppor-tunities elsewhere. Maybe your employer iscutting jobs because of a sluggish economy.Job changes still are possible after you havebeen diagnosed with MS, but carefullyconsider your options before making a decision.

For example, if you generally are satisfiedwith your employer and benefits, considerasking if you can move into a different jobwithin the same company. This way, you can avoid changing your health-care plan,waiting periods, and so on. If you need tolook beyond your current employer, thefollowing sections detail some issues to keepin mind when job hunting.

Looking for a New JobHere are a few suggestions for job hunting:

• Focus on what you can do, not on whatyou can’t do. Make a list of job ideas andwrite your resume. You do not have tomention your MS in a job resume.

• Look for a job using the sameresources as people who do not have a disability. These include newspaperclassified ads, college career centers, state employment agencies, help-wantedsigns in businesses, and Internet sites (try www.usajobs.opm.gov orwww.careeronestop.org).

• Check sources that focus specifically onhelping people with disabilities find jobs.Here are two ideas:

1. The U.S. Department of Labor,Office of Disability EmploymentPolicy’s Web site lists employers thathave indicated an interest in hiringqualified individuals with disabilities.Go to www.dol.gov. Then click ODEPunder DOL Agencies and search forJob Links in the A—Z index.

2. State vocational rehabilitation (VR)agencies help people with disabilitiesdevelop job skills and find employment.Services vary by state, and you mustapply for them. (If you qualify forSocial Security benefits, it is likely thatyou will be referred to your state’s VRagency.) If you qualify for VR services,you may receive job counseling andtraining, transportation assistance, andspecial equipment you may need to findand keep a job. Look for a telephonenumber in the blue pages of the phonedirectory, or go to www.jan.wvu.edu.

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CH A P T E R 2

Click Employment Links, then StateVocational Rehabilitation Agencies fora state-by-state list. (Tip: If your firstrequest is turned down, appeal thedecision. Show how the assistance can help you get a job and remain self-sufficient.)

3. VA medical facilities or regionaloffices will know about vocationalrehabilitation services available to eligibleveterans who need job retraining.

• Decide if you will tell potentialemployers about your MS. You are notrequired legally to disclose your MS duringa job interview. This is a personal decision,but NMSS generally recommends thatyou leave medical information out of a job interview. However, if an accom-modation will be necessary, it you will needto mention the symptom or functionalcondition that requires the accommodation.In short, keep the job interview focusedon your experience and qualifications.Help the employer get to know you, notyour MS.

Job Changes and Health CareOne of the most important job benefits anemployer can offer is a health-care plan.Because MS is a lifelong condition, carefullyconsider the health benefits provided by anemployer before accepting a position. Or, ifyou currently work for a company that doesn’toffer a health-care plan, you may want to lookfor a new job that has health-care benefits.

In addition to COBRA, the Health InsurancePortability and Accountability Act of 1996(HIPAA), also known as the Kennedy-Kassenbaum Act, provides protection toindividuals with pre-existing condition whenmoving to a new health plan. HIPAA limitsexclusions for pre-existing conditions andprohibits discrimination against employeesand dependents based on their health status.This law guarantees that most workers withpre-existing conditions can move from theirformer group health plan to their newemployees plan without a break in coverageFor more information on HIPAA, go to:www.dol.gov/pwba.

Don’t ask to see the benefits package duringthe first interview, but when offered a job,ask to review the package before giving ananswer. When reviewing the health-careportion of the employer’s benefits package,pay particular attention to the:

• Waiting period

• Pre-existing condition exclusion period(described in Chapter 1)

• Plan benefits and your costs

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Waiting Period

Before switching to a new employer’s health-care plan, find out when the plan will coveryou. There could be a 60-day to 90-daywaiting period—or you could be covered the first day you report to work.

Try to avoid a gap in your medical coverage.Such a gap could mean facing a pre-existingcondition exclusion period. If you have towait to join a new employer’s health-careplan, try to bridge the gap with one of theoptions described on the right. If you havenot had any health care plan for over 62days prior to accepting this job, you may berequired to wait for 12 months before yourMS is covered.

Plan Benefits and Your Costs

When reviewing a health-care plan, considerthe following:

• Coverage for MS. Make sure the health-care plan will cover MS treatment and therapies.

• Type of plan. Some employers give you achoice between different types of health-care plans. Read about each type, andchoose the plan that is best for a chroniccondition as well as the routine medicalneeds of you and your family. Ask yourselfquestions such as, “Can I still go to mycurrent doctor/hospital? Am I satisfiedwith my choice of doctors and hospitals?Will I be able to get care from specialistswhen I need it?”

• Costs. If you are deciding between health-care plans, compare the costs of co-pays,prescription drugs, your share of thepremiums, and so on with the overallbenefits offered by the plan. Keep inmind that an inexpensive health-care plan may not be the least expensive in the long run.

Options for Bridging the GapBetween Health-Care PlansIf you are switching jobs and will have towait to join a new health-care plan, considerusing COBRA or another option to bridgethis gap.

COBRA

The Consolidated Omnibus BudgetReconciliation Act of 1985 (referred to asCOBRA) allows you to keep your previousemployer’s health-care plan for 18, 29, or 36months, depending on the circumstances, if a “qualifying” event occurs. This federallaw applies to employers with 20 or moreemployees.

Qualifying events for employees include the following:

• Your employment ends (voluntarily orinvoluntarily) for reasons other than gross misconduct.

• Your work hours are reduced to the pointyou no longer qualify for your employer’shealth-care plan.

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pay more for fewer benefits, but it maybe difficult to get an individual policyany other way. Make sure the convertedpolicy covers MS.

• If you are married and your spouse works,find out if you can join your spouse’shealth-care plan. If this happens becauseof your change in employment status,you will not be considered a late enrollee.

• Talk with an insurance agent about atemporary health-care plan. These plansexclude pre-existing conditions, but atleast you would be covered for otherhealth-care costs.

• Find out if your state has an insuranceprogram for hard-to-insure individuals.Contact your state’s insurance regula-tory agency.

Other Useful Job BenefitsAlthough health-care coverage is the mostimportant employer-paid benefit, two othervaluable benefits to look for are disabilityinsurance and life insurance.

Keep in mind that employer-sponsoreddisability plans may exclude pre-existingconditions that could lead to a futuredisability, so a new employer’s plan may ormay not cover you some period of time,because of your MS.

31

COBRA is helpful, but there is a catch. Youmust pay the full cost of coverage, at theemployer’s group rate, plus up to 2 percentto cover administrative fees. If that costseems steep, keep in mind how much moreexpensive it would be to pay for MS treat-ment without a health-care plan or with acostly individual plan. Most important,keeping your insurance coverage in forceenables you to avoid any pre-existingconditions waiting period under the newemployer’s plan as long as you met waiting-period requirements under prior coverage.

Other Options

If you are not eligible for COBRA or yourcoverage under COBRA runs out, considerthese options:

• Find out if you can convert yourcompany’s group policy to the insurancecompany’s plan for individuals. You will

Some employers also provide a certain amountof life insurance as an employee benefit.That amount may be sufficient for your needs,or you may want more coverage. Because ofMS, it is unlikely that you can buy individuallife insurance at standard rates. However,your employer’s plan may allow you to buyadditional group life insurance above theamount the company provides.

ConsideringSelf-EmploymentMany people with MS are successfully self-employed. In fact, it may be easier to rest or attend doctor appointments when you are self-employed than when you work foran employer.

Before quitting a job and taking this path,however, ask yourself some serious questions,such as:

• What will happen to my health-carecoverage, and how much will it cost toget coverage on my own?

• What other forms of insurance does myemployer provide that I will have to dowithout or secure on my own?

• Do I have the energy and stamina to startmy own business?

• Can I live without a steady paycheck?

• Can I afford to maintain and update thebusiness equipment I will need?

• Do I have the money necessary to start a business?

• Do I have a wide network of professionalswho can make referrals to my business?

The Small Business Administration (SBA)recommends having enough money set asideto pay for operating expenses for at least oneyear. Operating expenses include whateversalary you intend to pay yourself, loan pay-ments, and other costs, such as equipmentcosts or health-care premiums.

The SBA offers business counseling, training,and information services, including theService Corps of Retired Executives, BusinessInformation Centers, Small Business Develop-ment Centers, and Women’s Business Centers.For more information, visit the SBA Website at www.sba.gov or call the SmallBusiness Administration Answer Desk at 1-800-UASK-SBA (1-800-827-5722).

The Job Accommodation Network (JAN)also provides valuable tips and informationfor the would-be business owner. Visit itsWeb site at www.jan.wvu.edu and click the Small Business and Self-EmploymentService tab.

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33

1. I will use the following resources to look for a job: ____________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

2. I will tell potential employers the following information, if any, about my MS: ____________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

3. I will keep health-care coverage between jobs by doing the following: ____________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

4. I will explore self-employment possibilities by doing the following: ______________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

My Plan for Finding a New Job

Life Without a Health-Care PlanIf you do not already have a health-careplan, it may be difficult to buy privatecoverage after being diagnosed with MS.However, most states guarantee access tostate sponsored health-insurance coverageregardless of a pre-existing condition.

These state-sponsored plans, commonlyreferred to as “high-risk pools,” are designedto provide health-care coverage for individualswho have been turned down by privateplans. Check with your state’s insuranceregulatory agency. The cost of a state planmay be high, but at least you will havehealth-care coverage.

Hiring Home HelpThere may be times when your MS symptomsmake it difficult to take care of your homeor yourself. If you decide to hire help, thefollowing tips may be useful:

• Before hiring anyone, identify your needs.For example, do you need someone toprovide medical services, personal care,homemaking, or companionship? Thiswill determine whether you need a nurse,a health aide, a housekeeper, or a friend.

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“It took me a long time toaccept help. I’ve always beenproud of my independence.But the day came when I hadto admit that MS is a toughdisease and I couldn’t fightit alone.”

—Carol, diagnosed in 1963

• To help determine what kind of assistanceyou may need, use the “Help at Home:Needs Assessment” worksheet on page37, which is adapted from the NMSSpublication, Hiring Help at Home: TheBasic Facts. Another useful publication is PVA’s Manag-ing Personal Assistants: A Consumer Guide.

• Find out if your insurance or a programsuch as Medicaid, Medicare, or VA coversthe service. (See Chapter 4 for more infor-mation about Medicaid and Medicare.)Your state’s vocational rehabilitation agencymight know about programs to help payfor a personal assistant, especially if youneed an assistant in order to work. Insome communities, personal assistanceservices are provided by state or countyfunds. Also call your local chapter ofNMSS or PVA for information andsuggestions.

• You can go through an agency or hiresomeone on your own. To get a list ofrecommended agencies or individuals,call the social worker at your nearbyhospital, nursing home or rehabilitationfacility, a local NMSS or PVA chapter, oryour doctor. Another source of informationabout hiring in-home help is the U.S.Administration on Aging’s EldercareLocator. Call 1-800-677-1116 or go towww.eldercare.gov and click CaregiverInternet Resources.

• If you use an agency, you likely will berelieved of many of the bookkeeping andhiring responsibilities. In addition, if youare receiving Medicare benefits, knowthat Medicare requires skilled care to beprovided by a licensed, certified homehealth-care agency in order to be covered.However, it typically costs more to gothrough an agency than to hire someoneon your own, and you will not have asmuch control over duties and scheduling.

• If you are using an agency, find out if theagency works with Medicare, Medicaid,VA, or your insurance company (privateinsurance may have a home health-carebenefit). Also find out if the agency chargesa sliding fee depending on the level ofservices provided and your income.

• If the agency pays the personal assistantdirectly, you will not be responsible forpayroll taxes. However, if you pay theassistant out of your own funds and theamount exceeds $1,400 a year (for 2003),the assistant is considered your employee,and you must pay state and federalwithholding taxes and Social Securitytaxes. Consult an accountant or otherfinancial advisor to help you set up asystem for paying your assistant, keepingnecessary records, and filing any requiredtaxes. To learn more, visit the InternalRevenue Service (IRS) Web site atwww.irs.gov and search for Publication907, Tax Highlights for Persons withDisabilities, which includes tax informationrelated to household employees.

35

• Money is not the only way to pay forservices. For example, you might offerEnglish or computer lessons in return forservices. Be aware, however, that non-cashcompensation may be taxable. Consultyour tax advisor.

• If you decide to hire someone on yourown, consider conducting interviewsaway from home to protect your privacy.Ask a family member or friend to comewith you to protect your safety and togive you another person’s reaction to theapplicant. Ask applicants for referencesand how much they charge.

• Your home-care employee is likely to be a stranger. Do not be too trusting tooquickly. Know how much cash you havein the house and where it is kept. Keepyour checkbook, credit cards, and othervaluables under lock and key.

• If the assistant shops for you, use cash ordistribute one check at a time. Never giveout your credit card. Always ask for andread the receipts.

• List the duties to be performed in writingso there are no misunderstandings.

• Arrange for periodic, unannounced visitsby friends and relatives while youremployee is on duty.

• If your caregiver is a family member and you recognize that he or she needsassistance, contact the National FamilyCaregivers Association at 1-800-896-3650,or go to www.nfcacares.org.

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“Before I had MS, I was a jogger. Now I use a cane or walker,and I hire someone to help me at home. I’ve slowed down,but that gives me more time to notice the world aroundme. I keep telling myself ‘don’t give up, don’t give in.’”

—Beatriz, diagnosed in 1994

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Self Family Member Friend (Volunteer) Housekeeper/ Health Aide** Nurse/TherapistCompanion (Paid)

HousekeepingLaundry

Cleaning

Meals

Grocery shopping/errands

Bill paying/record keeping

Minor repairs/maintenance

CompanionshipReading

Writing

Hobbies

Travel

MedicalMedication, See **administering

Therapy (physical, See **occupational)

Personal CareBathing

Dressing

Feeding

Hair and nails

Bowel/bladderprogram

Exercise

Transfers

TransportationFor self

For children/others

Use this worksheet as a tool to help you andyour family identify your needs and howthey will be met. Be very specific regarding

Help at Home: Needs Assessment*

medical needs, because a trained personmust help you with some of them. Revisitthis worksheet as your needs change.

Needs Who Will Help?

* Adapted, in part, from “Help at Home: Needs Assessment” worksheet found in the NMSS publication, Hiring Help at Home: The Basic Facts.

** A health aide can provide medical services only under supervision of a nurse.

Nonprofit independent living centersacross the country provide a wide range of services and typically are staffed bypeople with disabilities.

Independent living centers often providecounseling and training in new skills thatcan help you to live as independently aspossible (for example, hiring home help or finding accessible, affordable housing).They also can assist with Social Securityappeals or help you assert your rightsunder the Americans with Disabilities Act.

To find an independent living center, callyour state’s vocational rehabilitation agency.You also can call the National Council onIndependent Living at 1-703-525-3406 or go to www.ncil.org. Click NationalDirectory of Centers for IndependentLiving and then click on your state.

IndependentLiving Centers

Adapting Your Home In addition to thinking through issuesdealing with employment and hiring help,you also may need to make some changes to your home.

Deciding if or how to adapt your home willdepend on your symptoms. For example, ifyour symptoms are mild, all you may need todo is get rid of clutter or rearrange furnitureso you can easily move around your house.If symptoms are more severe or frequent,ramps, wider doorways, lower countertops,or other changes may be necessary.

Reviewing your MS journal may help youdecide what changes are needed now. Also,the NMSS publication, At Home with MS,and the PVA book, Accessible Home Design,provide useful tips.

Managing CostsHere are some ideas for managing the costsof home adaptations:

• Choose a contractor carefully. Get bidsfrom three licensed contractors, compareprices, and check their references. Thecontractor may ask for a partial paymentto buy materials, but do not pay the finalbill until the work is completed to yoursatisfaction.

• Find volunteer groups that may do some ofthe work for free. Ask your hospital socialworker, insurance caseworker, or localNMSS or PVA chapter for suggestions.

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CH A P T E R 2

• Check into tax deductions. The costs tochange your home for medical necessitymay be deductible from your income whencalculating your taxes. Get a doctor’s letterto document medical necessity and checkwith your tax advisor.

• Contact your state’s housing and financeagency. Ask about eligibility requirementsfor funds that may be available to assist inretrofitting your home.

Tips for Renters• If you decide to move to an apartment,

look for one that has a sidewalk orelevator entrance instead of stairs, widerdoorways, bathrooms with grab bars, andappliances and light switches that areeasily accessible. Your local housingauthority or independent living centercan guide you to apartment complexesthat have these modifications.

• If you already live in an apartment unitthat is not adequately accessible, ask yourproperty manager if you can move into ahandicapped-accessible unit, or ask theapartment owner to modify your apartmentfor your disability. (Your state may requirethat a certain number of units in anapartment complex be accessible topeople with disabilities, although theserules usually apply to larger complexes,not to small mom-and-pop rental units.)If landlord modification of the apartmentis not possible, ask about ending yourlease or research regulations for modifyingthe apartment at your own expense.

• If your landlord is unwilling to workwith you, contact your local fair-housingagency. For more information about fairhousing, visit the Web site of the U.S.Department of Housing and UrbanDevelopment at www.hud.gov. ClickAbout HUD at left, and then FairHousing/Equal Opportunity at right.

39

“As luck would have it, my house has a lot of stairs. I didn’twant to sell my home, so I started to think of the stairs asa painful exercise program. My family reinforced the railingsso I could really depend on them to support me. I go downthem slowly, but I think my stairs have helped my mobility.”

—Annie, diagnosed in 1982

You’ve probably heard the term “assistivedevices.” Think of them as items that canhelp you do things more easily, from cookingand walking to reading and working. Anassistive device could include a wheelchairor a special computer screen, or it couldbe a cane or an easy-to-grip door handle.

Having the equipment you require canmake the difference between dependenceand independence. In many cases, it’s anecessity, not a luxury.

Here are some points to keep in mindwhen looking for help in paying for anassistive device:

• Know your needs. Talk to your doctor ortherapist. Become your own best advocatefor what you need.

• Private insurance, Medicare, Medicaid,and VA may pay for assistive devices if they are medical necessities. Ask your doctor to write a prescription forthese items.

Paying for Assistive Devices

40

CH A P T E R 2

• Call your state’s vocational rehabilitationagency. It may provide funding help ifthe device is needed for work.

• Check out state assistive technologyprojects. The project in your state mayoffer low-interest loans, equipmentexchanges, or equipment recycling. For more information, call theRehabilitation Engineering and AssistiveTechnology Society of North America(RESNA) at 1-703-524-6686, or go towww.resna.org. Click TechnicalAssistance Project and then the link for your state.

• Keep trying. Don’t be discouraged ifyour first request for funding is turneddown. Find out why and apply again.Ask someone who is experienced withfunding requests to help you apply.Good resources include a rehabilitationtherapist, independent living centers,other people with disabilities, and localchapters of NMSS and PVA.

41

1. I will look for home help in the following places:______________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

2. This is how I will pay for home help: ________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

3. I need the following adaptations to my home:__________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

4. This is how I will pay for these adaptations: ____________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

My Plan for Home Help and Home Adaptations

Taking control of your finances means:

• Knowing what you have and what you owe

• Making changes as necessary

• Making good choices with the moneyyou spend and save

Developing a Spending PlanThe best way to know how much moneyyou need to live on every month is to makea spending plan. Consider making severalcopies of the following worksheets so youcan use them throughout the year—orwhenever your financial situation changes.

TA K I N G CO N T R O L O F F I N A N C E S

Chapter 3“I find myself talking in terms of ‘our’ MS. Only my husbandwas diagnosed, but believe me, MS affects both people in amarriage. I want him to know that no matter where MS takesus, we’re in this together and we’ll manage the costs together.”

—Sara, wife of Wade, diagnosed in 1985

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43

Step 1: Identify Your Income

Sources Per Month

After- tax wages $

Tips or bonuses $

Chi ld suppor t $

Al imony/maintenance payment(s) $

Unemployment compensat ion $

Soc ia l Secur i ty or Supplementa l Secur i ty Income $

Ret i rement p lan(s) $

Pr ivate d i sab i l i ty insurance payments $

VA benef i t s $

Publ i c ass i s tance $

Food s tamps $

Interes t/ inves tment income $

Other $

$

$

$

$

Other $

Tota l Income: $

Estimate your monthly income.

Month ly Income Worksheet

44

CH A P T E R 3

Step 2: List Expenses

Sources Per Month

Mortgage or rent $

Ut i l i t ies (heat , e lec t r i c i ty, and water) $

Te lephone, ce l lphone, In ternet prov ider $

Grocer ies $

Transpor ta t ion (bus fare , car payment , gas , repa i r s) $

Insurance (cos t per month for car, home, hea l th , and l i fe insurance) $

Personal ass i s tance care $

Prescr ip t ion drugs , medica l supp l ies , and equipment $

Treatments or therap ies (massage, exerc i se c lasses , a l ternat ive t reatments , supp lements , e t c . ) $

Doctor/dent i s t b i l l s $

Home adaptat ions or improvements $

C lo th ing/uni forms $

Chi ld care/ch i ld suppor t payments $

Al imony/maintenance payments $

Loan/cred i t card payments $

Enter ta inment (movies , eat ing out , e t c . ) $

Misce l laneous (c lasses , g i f t s , vacat ions , pet care , e t c . ) $

Donat ions $

Taxes $

Sav ings/ret i rement p lan contr ibut ions* $

Other $

Tota l Expenses : $

List your monthly expenses. If you have beenkeeping an MS journal, review it beforecompleting this worksheet. If you have not

Month ly Expenses Worksheet

kept a journal, carefully track all of yourexpenses for a month or two before trying toaccurately list them.

* Think of saving money as a regular monthly expense. That way, you will be more likely to save.

Step 3: Compare Income and Expenses

Wri te down your to ta l month ly income ( f rom Step 1) . –$

Wri te down your to ta l month ly expenses ( f rom Step 2) . –$

Subtrac t expenses f rom income and l i s t amount here . –$

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46

CH A P T E R 3

Step 4: Set Priorities and Make Changes

If your expenses exceed your income, do notget discouraged. Here are some ideas to helpget spending under control:

• If you are having trouble paying for yourmedicine, review the suggestions inChapter 1.

• Make sure you apply for all availableprograms for which you may be eligible,including VA benefits, Medicare, Medicaid,food stamps, and state programs for low-income individuals.

• Find a doctor you like and stay with himor her. Frequently changing doctors wastestime and money.

• Ask your doctor to write prescriptions for items you may need, such as a brace,walker, or special bed. A prescriptionshows medical necessity, which makes it more likely that your insurance will pay for it.

• Sell unnecessary items that clutter your house.

• Put away the credit cards—and onlybring them out to pay for emergencies.

• Call your local housing authority or talkto your hospital social worker if you arehaving trouble paying your rent. Ask aboutSection 8 programs, in which you paypart of the rent based on your income,and the government pays the rest.

• Take advantage of tax deductions andcredits. If you do not make very muchmoney, you may be able to use theEarned Income Tax Credit. This creditwill reduce your taxes and may evenresult in a refund. You can claim thiscredit on IRS Form 1040.

• If you have a lot of medical expenses, youmay be able to deduct them from yourincome for tax purposes. Keep all of yourmedical bills, as well as receipts for otherexpenses related to MS. These couldinclude mileage driving to doctorappointments and the cost of modifyingyour house. Show this information toyour tax preparer when it is time to doyour taxes.

• Call the IRS or your local senior citizens’center to ask about free help in preparingyour taxes.

Coping with DebtDebt can limit your choices about healthcare, therapies, and even some of the smallthings that help make living with MS easier.If you have cut back on spending, but stillhave serious debt, consider the followingsuggestions:

• If you are in debt to a few businesses andin danger of missing payments, call andask if you can make smaller payments—at least for a while. Most businesses willbe more willing to work with you if youmake this call before you miss a payment.

• Organize your debts from the highestinterest rate to the lowest. Make at leastthe minimum payment due on all thedebts, but put any extra money towardthe debt with the highest interest rate.When that debt is paid off, move theextra payment onto the next debt withthe highest interest rate. In time, you willpay off your debts and save by avoidinginterest costs.

• If you owe money to many businesses, itmay be time for outside help. Nonprofitdebt-counseling groups, such as ConsumerCredit Counseling Service (CCCS) canhelp you set up a repayment plan. Thesegroups charge a low fee (or no fee) fortheir services. Call 1-800-388-2227 orvisit the National Foundation for CreditCounseling’s Web site at www.nfcc.org.

Avoid companies that focus only oncredit card debt. To get out of debtpermanently, you will need a plan that takesinto consideration all of your expenses.

• Consider bankruptcy as a last resort. Abankruptcy stays on your credit recordfor 7 to 10 years, depending on the typeof bankruptcy. If you are consideringbankruptcy, call a lawyer or legal aidclinic before taking any action.

Looking at InvestmentsYou may have money in a 401(k) or otherretirement plan, or have other investments.It is a good idea to periodically review whereyour money is invested. The challenge is tofind the right balance between the financialrisk you can tolerate and the need for yourmoney to grow.

If you currently are putting money into anemployer-provided retirement plan, try tocontinue doing so. This is one of the bestways to save for your future—and you getspecial tax breaks. In addition, employersoften match all or part of the money yousave in the plan. Put at least enough moneyinto the retirement plan to qualify formatching dollars from your employer.

47

Hiring a FinancialProfessionalIf you decide to hire a financial planner to review your finances, ask your supportgroup or local chapter of NMSS or PVA torefer you to professionals who have workedwith people diagnosed with MS. In addition,the following organizations can providenames of financial planners near you:

• American Institute of Certified PublicAccountants, Personal Financial PlanningDivision, www.cpapfs.org

• Financial Planning Association,www.fpanet.org

• National Association of PersonalFinancial Advisors, www.napfa.org

• Society of Financial Service Professionals,www.financialpro.org

Interviewing Financial ProfessionalsThere should be a good fit between you andyour financial advisor. Consider interviewingthree or four advisors, and ask them some ofthe following questions:

• What are your credentials and background?

• Have you ever worked with a client whohas MS?

• Are you familiar with medical plans,government and private disabilitybenefits, and life insurance?

• Are you familiar with the legal rights ofpeople with a disability like MS?

• How often will you review my finances?

• Do you recommend specific products?How do you decide how my moneyshould be allocated?

• How will you be paid (fee, commissionfrom the sale of financial products, feeplus commission)?

• Have you ever been disciplined by aregulatory group?

• Can you supply references?

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CH A P T E R 3

Setting Aside Money forUnexpected ExpensesMany financial experts advise putting asideenough money to cover your bills for threeto six months. This money can help if youlose your job or face other unexpected costs.Because you are dealing with a chronicdisease, try to save enough money to coversix months of expenses.

The money you set aside for unexpectedevents should be placed in an account that you can get to easily. Consider thefollowing options:

• Savings account. Savings accounts areeasy to open and offer quick access toyour money. While they pay only a smallamount of interest, savings accounts atbanks, savings and loans, and creditsunions are safe investments.

• Money market account. You often need$1,000 to $10,000 to open a moneymarket account. You may earn moreinterest on this type of account than witha savings account, but you may havelimited access to it. In addition, dependingon where you open a money marketaccount, it may not be insured by thefederal government. Be sure to ask.

• Roth IRA. Even though IRA stands forIndividual Retirement Account, you canuse a Roth IRA as a way to set moneyaside for emergencies. Unlike a regularIRA, you can withdraw the after-taxmoney you put into a Roth IRA withoutpaying a penalty or taxes. However,generally you cannot withdraw anyinterest the account earns until age 59-1/2

without paying a penalty. You are nottaxed on any of the money you withdrawfrom a Roth IRA provided that you with-draw the money after age 59-1/2, and theRoth IRA has been in existence for atleast five years. However, if you becomedisabled, and distributions are madebecause of your disability, you do nothave to meet the age 59-1/2 rule fordistributions of earnings to be income tax free.

To learn more about saving, investing, and personal finance, ask your librarian to recommend a couple of good books. Or, take a look at the following Web sites: Alliance for Investor Education,www.investoreducation.org; AmericanSavings Education Council, www.asec.org;Investment Company Institute, www.ici.org;or National Endowment for FinancialEducation, www.nefe.org.

49

Savings and Government BenefitsIf you receive government benefits that arebased on financial need, such as SupplementalSecurity Income or Medicaid, your savingscould affect your eligibility for thosebenefits. However, you may be able toparticipate in a savings program called Planfor Achieving Self-Support (PASS) and stillkeep your benefits.

CH A P T E R 3

PASS permits you to save money to reach a work goal. For example, you could savemoney to go to trade school or start a business,and the money you save for those reasonswill not reduce your SSI payment.

The Social Security Administration overseesthe PASS program and must approve yourplan. Work with your state’s vocationalrehabilitation agency if you think PASSmight apply to you. Or, call the SocialSecurity Administration at 1-800-772-1213to learn more. You also can find informationabout PASS on the SSA’s Web site atwww.socialsecurity.gov/work. Click

“Beneficiaries” and go to “Plans for Achieving Self-Support.”

To learn how saving money may affect VA benefits, call a veterans service organization, such as PVA.

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51

1. This is what I will do to cut back on my spending:______________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

2. This is what I will do to manage debt and build good credit: ____________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

3. I will save $___________ a month by doing the following:______________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

4. I will learn more about investing money by doing the following:__________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

My Plan to Take Control of My Finances

MSis an unpredictable disease.Your symptoms could stabi-lize for years. However, there

is a possibility that the disease will progress.This chapter offers suggestions for adaptingfinancially to your changing condition.

Leaving WorkIf you no longer can perform your jobbecause of MS, it may be time to leavework. However, it may be better to leavework gradually—just in case your conditionchanges for the better.

Taking Advantage of Leave and FlextimeFirst, talk to your employer about usingyour paid sick leave and vacation days.Then, ask if the employer will grant youadditional unpaid leave. Explore everyoption that will allow you to keep your job,while having the time off you need to carefor yourself. This could include flextime orworking from home.

Under the Americans with Disabilities Act,these options can be considered a form ofreasonable accommodation, which wasdiscussed in more detail in Chapter 2. Keepin mind, however, that the leave cannotcreate an undue burden on your employer,and the employer is not required to give youthis leave if another effective accommodationis available.

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I F MS PR O G R E S S E S

Chapter 4“I didn’t want to use a walker any more than I wanted to wearglasses in the third grade. Now I just think of it as the price Ihave to pay to see a movie or go to dinner with friends.”

—Jenna, diagnosed in 1983

Using Family and Medical LeaveAs detailed in Chapter 2, under the Familyand Medical Leave Act (FMLA), you may beable to take up to 12 weeks of unpaid leavea year to care for yourself or an immediatefamily member because of a serious illness.

If your symptoms improve, you have theassurance of being able to return to your jobunder the rules of FMLA. In addition, youcannot be taken off your employer’s health-care plan during the leave. This enables youto extend the length of time you are coveredunder your employer’s health-care plan. Ofcourse, you must continue to pay whateverportion of the health-care premium youwere paying prior to the leave.

Exploring Disability Insurance PoliciesDisability insurance helps replace part ofyour income if you become sick or are hurtand unable to work. You may have purchasedyour own disability insurance policy, orperhaps you are covered at work.

Depending on the plan, you may be entitledto long-term or short-term benefits. Short-term disability insurance covers the costs ofa temporary absence from work. If your MSprogresses to the point where you can nolonger work at your current job, you shouldtap into any long-term disability insurancethat you have.

In general, long-term disability insurancedoes not start paying benefits until you havebeen disabled for one to six months. Threemonths is a common waiting period. However,benefits often are paid over a long period oftime, usually ranging from several years tothe age of 65.

Benefits vary, but long-term disabilityinsurance policies provided by employerstypically pay about 60 to 70 percent of yourincome. The plan also may have a provisionrequiring you to apply for Social Securitydisability benefits. Receiving these benefitscould reduce the private plan’s payments.

If you have a disability insurance policy,learn how it works. Look for information onthe following:

• Definition of disability. How does thepolicy describe “disabled”? Do you fit thedescription?

• Monthly benefit amount. Benefits vary.If it is an employer plan, it is likely to paya percentage of your income. Read yourbenefits book to learn how “income” isdetermined. If you bought the policy, thebenefit will be the amount you chose.

• Benefit period. How long will the planpay a benefit?

• Waiting period. How long must youwait before you receive a check?

53

• Residual or partial disability. Thepolicy may allow you to return to workon a part-time basis and not lose yourentire benefit. Some policies may requireonly a loss of income to continue payingsome benefits, even if you return to workfull time.

• Coordination of benefits. If youremployer pays for your plan, yourdisability check may not always be a set percentage of your wages. This canhappen when you also are receivingincome from Social Security or anotherprogram. The amount you receive fromthose programs may be subtracted fromthe plan’s benefit amount. If you purchasedyour own disability policy, however, yourbenefit amount will not be reduced bywhat you receive from governmentprograms unless you have a rider attachedto your policy that provides additionalbenefits that stop if and when governmentbenefits begin.

• Taxes. If you paid the premium for yourdisability insurance, the benefit is incometax free. If your employer paid the premi-um, the benefit is taxable. In some cases,there is a blend of employer-paid premiumsand worker-paid premiums. For example,your employer may pay the premiums tocover 40 percent of your wages, but you“buy up” to cover another 20 percent. Inthis case, your total benefit would equal60 percent of your income. Of that 60percent, 40 percent would be taxable and20 percent would not be taxable.

Applying for Government ProgramsIn addition to applying for disability benefitsfrom a private disability insurance plan, besure to apply for disability benefits from theSocial Security Administration (SSA) if youbelieve you might be eligible. SSA has twoprograms that provide a monthly income:Social Security Disability Insurance (SSDI)and Supplemental Security Income (SSI).

To qualify for these programs, you mustmeet the government’s narrow definition of disability. Also keep in mind that if youretire and start receiving a Social Securityretirement benefit, you cannot receive anadditional disability benefit from SocialSecurity. Social Security disability benefitsare paid to people who are under age 65 and cannot work.

Social Security Disability InsuranceSSDI is for people who have worked, paidFederal Insurance Contributions Act (FICA)taxes, and then become disabled. If you earnless than $800 a month (as of 2003) due toyour disability, you may be eligible for benefits.(The threshold for individuals who arestatutorily blind is $1,330 a month in 2003.)

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CH A P T E R 4

The benefit amount paid under SSDI dependson the following factors:

• How much you earned

• The number of years you worked

• Your age

• When you became disabled

Note: It is a good idea to check your SocialSecurity records to make certain you getcredit for all of the jobs you have worked.To obtain a detailed statement of youremployment history, complete Form SSA-7050-F4, Request for Social SecurityEarnings Information. You can do thisonline at www.socialsecurity.gov or bycalling 1-800-772-1213.

SSA’s Web site also has a calculator to helpyou estimate your SSDI monthly benefit.You can find the calculator by clicking theSocial Security Disability Insurance link atwww.socialsecurity.gov/disability. Notethat your assets do not affect your benefitamount under SSDI. A percentage of yourSSDI benefits may be taxable, however,depending on your other income.

Once benefits are approved, they are paidretroactively to the later of the date ofapplication or the sixth month of disability.If you qualify for SSDI, you also may beeligible for Medicare, the federal government’shealth-care program. However, the wait tojoin Medicare is two years after you areeligible for SSDI benefits. Try to keep someother health insurance in force while you arewaiting. For example, use COBRA (discussedin Chapter 2) to keep your health insuranceplan from your job, join your spouse’s health-care plan, or talk to an insurance agentabout temporary insurance coverage thatmay be available.

As soon as you reach the age for full SocialSecurity retirement benefits (65 in 2003),you automatically qualify for Medicare.

Supplemental Security IncomeSSI is for people who are unable to workand have little income and few assets. Thereare no prior-work requirements.

If you qualify, SSI pays you a monthlyincome. As of 2003, the maximum monthlyamount was $552 for an individual and$829 for a couple. (This amount usuallyincreases each year.) Some states supplementthe federal payment. To find out the totaldollar amount for your state, call SSA at 1-800-772-1213. SSI benefits are not taxable.

55

If you qualify for SSI, you usually also qualifyfor Medicaid, the government health insuranceprogram for low-income individuals. SSAwill tell you if you need to apply separatelyfor Medicaid in your state. Also be awarethat some states have a medical spend-downprovision. With this provision, you may be able to qualify for Medicaid if you candocument that when you deduct your out-of-pocket health-care expenses from yourincome, the income falls below the eligibilitylimit for Medicaid. To learn more, go to theWeb site of the Centers for Medicare &Medicaid Services at www.cms.hhs.gov.

Applying for SSDI, SSI BenefitsWhen applying for SSDI or SSI, talk withothers who successfully have filed for thesebenefits. People at an MS support groupmay provide useful tips for filing anapplication.

One man, whose application was approvedon the first round, believed it helped that heprovided copies of medical records from allof his doctors and hospitals. When he foundthe government forms did not allow enoughspace for complete explanations, he typedhis information on the computer in smalltype, printed out the pages, and then cutand taped the answers on the form.

Here are a few other tips:

• Know that you must meet the SSA’sdefinition of disability before you canreceive benefits. According to SSA, youmust have a physical or mental conditionthat keeps you from working. The condi-tion must last for at least 12 months orbe expected to result in death. In addition,you must be unable to do any “substantialgainful activity.” This means you cannotwork at any job where you would earn atleast $800 a month before taxes (as of2003). The SSA will determine if youmeet this definition.

• Start the process as soon as you think you are eligible for benefits.It may take several months for SSA to reach a decision on your claim. Start by making an appointment to talk to someone at your local SSA office.Call 1-800-772-1213, or go to the SSAWeb site at www.socialsecurity.gov tofind the office closest to you. You also can apply for benefits online.

• Take steps to speed up the process.When you call SSA to make your appoint-ment, ask for a disability report form.Complete the form and give it to the SSAemployee who takes your application.Your doctor also can help by providingyou with medical information that clearlydescribes the impact MS has on yourability to work.

56

CH A P T E R 4

• Keep copies of everything you give tothe SSA in a file folder. Keep any lettersthe SSA sends to you. Also write downthe names of people you talk to, the date,and what they told you.

• Ask a friend or family member to gowith you when you apply. The rules forSocial Security programs can be confusing,so it’s helpful to have another personalong to listen and take notes.

• Insist that your right to apply forbenefits is respected. Don’t let anyonediscourage you from filing. Also, knowthat the SSA employee who takes yourapplication does not determine youreligibility. The decision is made atanother office.

• Use the appeals process. If your SocialSecurity application is turned down, youcan appeal, and you can hire a lawyer or alegal advocate to help you. Your SSAoffice can give you a list of legal advocateswho either do not charge for their help orwho charge a low fee. (Under federal law,the lawyer or legal advocate cannot chargemore than 25 percent of the retroactivebenefits you may receive from SSA.) It’s worth the time and effort to appeal,because eligibility for Social Securitybenefits, no matter how small the amount,often makes it easier to qualify for otherbenefits, including housing, transportation,education, job retraining, and food stamps.

One resource for hiring an attorney is the National Organization of SocialSecurity Claimants’ Representatives atwww.nosscr.org.

Returning to WorkMany people with disabilities want to returnto work, and Social Security provides anumber of ways in which individuals cantest their ability to work again while stillreceiving benefits. These employmentsupports provide help over a long period oftime to allow you to see if you can, indeed,go back to work and gradually become self-supporting again.

For example, if you are receiving SSDIbenefits, you have at least nine years to testyour ability to work. This includes full cashpayments during the first year, a 36-monthextended eligibility period, and a five-yearperiod in which SSA can start your cashbenefits again without a new application.You may continue to have Medicare coverageduring this time or even longer.

If you are receiving SSI benefits, SSA willconsider that your disability continues untilyou medically recover, even if you work. Ifyou cannot receive SSI checks because yourearnings are too high, eligibility for Medicaidmay continue. In many cases, if you loseyour job or are unable to continue working,you can begin receiving SSI checks withoutfiling a new application.

57

“My toughest time was whenI was filing for benefits. It took all of my energy.People in my support groupreally helped me get throughthe paperwork and thefrustration.”

—Kelly, diagnosed in 1979

In addition, the Ticket to Work Programhelps people on SSI and SSDI get back to work. The program provides access toemployment training, job-placement services,and other support services. The program willbe fully implemented nationwide by 2004.

To learn more about SSA’s employmentsupports, visit its Web site atwww.socialsecurity.gov/work or call 1-800-772-1213.

Tapping into OtherSources of Income Consider as many sources of income aspossible to pay for your MS care and otherbills. Here are some possibilities:

• Retirement plan. You may be able toborrow money from a retirement plan atwork. Or, if you are permanently disabled,you can withdraw money from a retire-ment plan without facing a penalty, butyou must pay income tax on the amountwithdrawn. Remember, people with MShave a near-normal life expectancy, so becareful about using the funds set aside for retirement.

• VA benefits. If you are veteran, makesure you enroll in the VA health-caresystem. You may receive benefits for yourdisability beyond those provided by SocialSecurity or private disability insurance.(See Chapter 2.)

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CH A P T E R 4

• Life insurance. Permanent insurancepolicies have a cash value. Examples arewhole life and universal life policies. Ifyou have one of these policies, you maybe able to use the cash value to get a loanfrom the insurance company. You alsomay be able to take some of the cashvalue out of the insurance policy. Term lifeinsurance does not have any cash value.

• Long-term care insurance. If you havethis type of policy, it pays nursing homecosts and also may pay the cost to hiresomeone to help you at home. If youhave long-term care insurance, ask yourinsurance agent to help you apply forbenefits. If you do not already have thistype of insurance, you will not be able tobuy a policy because of MS.

• Mortgage or credit disability insurance.This kind of insurance might pay yourmortgage or credit card bill if you are disabled.

• Personal property. A coin, stamp, ordoll collection, as well as other types ofpersonal property, might be worth a greatdeal of money.

• Real estate. If you own a home, considerrefinancing the mortgage at a lower interestrate. Or, if you can afford the payments,perhaps you could take out a secondmortgage to cover short-term medicalcosts. If you are 62 years old and own ahome, another option is to receive cashfrom the home’s equity using a reversemortgage. (Equity is the value of yourhouse minus the money you still owe onit.) A reverse mortgage is a loan againstyour home’s equity. The loan does nothave to be paid as long as you live in thehouse, but it can be expensive. Beforetaking out a reverse mortgage, talk toyour accountant or financial planner.Also, the AARP Web site provides helpfulinformation about reverse mortgages atwww.aarp.org (click Money and Work).

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“A lot of fear goes along with MS. It’s a real struggle to keepa positive attitude, especially when money is tight, but ifyou don’t, you’ve already lost to the disease.”

—Anthony, diagnosed in 1980

Continuing to Care forYourself and Your FamilyWellness is a concept that does not normallycome to mind when we think about MS. Weusually think in terms of curable or incurable.

MS belies this concept in many ways. It isindeed incurable at the present time; however,it is a complex condition that yields to manytreatments and therapies. Although they arenot cures, they can provide you with at leastsome control over your wellness.

Now more than ever, focus on caring foryourself and your family. Keep the followingin mind:

• Continue your medications.

• Talk openly with your doctor about MS-related symptoms, such as depression orsexual problems. Treatments may beavailable.

• Accomplish what you can—when youcan. You may have small bursts of energy.Use some of them just to have fun withyour loved ones.

• Find exercise routines that work for you.Look into such options as tai chi, aquatictherapy, yoga, or Pilates. Ask a friend orfamily member to join you. Exercisebuilds strength and flexibility—and fightsdepression.

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CH A P T E R 4

As you tap into resources to pay for yourcare, keep in mind the needs of your familyas well. For example, some governmentprograms, such as Medicare, may coveryou, but not your spouse and children. Onthe other hand, if you qualify for Medicaiddue to financial need, your spouse andchildren also may qualify. Or, if you receiveassistance from VA, your family may beeligible for some benefits.

If your family was covered under your planat work and you don’t return to the job,you can use COBRA to keep the family’scoverage in force for 18, 29, or 36 months,depending on the circumstances. Then, youmay need to buy a new policy for your family.

The bottom line: As you plan financially foryourself and your family, take advantageof every benefit that’s available.

“I’ve found that taking care ofothers keeps me from thinkingabout MS all day. It’s just tooeasy to let MS take completecontrol of your life.”

—Lydia, diagnosed in 1976

Family Considerations

• Contribute where you can. Many nonprofitgroups would appreciate your help, evenif it’s only for an hour or two at a time.Volunteering can give you a break fromthinking about MS.

• Keep your mind active. Read to yourchildren. Do crossword puzzles. Take aclass. Mental activities keep the mindflexible and fight cognitive problems.

• Use mobility devices if they help. Isolationcan easily lead to depression. Get out ofthe house when possible, join familyoutings, and interact with others.

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1. My plan for tapping into disability insurance benefits that I have at work or on my own:

______________________________________________________________________________

______________________________________________________________________________

2. My plan for applying for Social Security benefits: ______________________________________

______________________________________________________________________________

______________________________________________________________________________

3. My plan for finding other sources of income and financial assistance:______________________

______________________________________________________________________________

______________________________________________________________________________

My Plan to Tap intoOther Sources of Income

• Discover coping techniques. Meditation,prayer, or biofeedback can calm the mindand decrease the fear that comes with MS.

• Take advantage of every resource availableto you. For example, a wealth of ideas isavailable from NMSS and PVA, includinga PVA publication Multiple Sclerosis: A Self-Care Guide to Wellness.

MS is what you have—not who you are.Take the time to discover your true valueand worth.

MSis not a fatal disease.However, mortality is a factfor all of us—and loved

ones will be left behind. This is why estateplanning is a good idea for everyone.

Make it a matter of routine to revisit yourlife insurance and estate planning needsperiodically. Addressing these issues showsthat you care about your loved ones’ future.

Life InsuranceLife insurance—especially for couples orparents—is important. However, you maywonder how much life insurance is enough.The answer varies, depending on suchfactors as:

• Are you single or do you have a spouse or partner?

• Does your spouse or partner work, and ishe or she self-supporting?

• Do you have any dependent children?

• Do any of your children have special needs,such as learning disabilities or serioushealth conditions?

• Do you have elderly parents who rely onyou for financial support?

• How much money have you set aside inrelatively safe investments?

Because of MS, you will not be able to buylife insurance at standard rates. However, youremployer may allow you to buy additionallife insurance above the amount the companyprovides. If you change jobs, try to convertyour group life insurance policy into anindividual policy.

A financial planner or insurance agent cananswer your life insurance questions. Otherresources about life insurance include:

• Consumer Federation of America,www.consumerfed.org. Click Financeand then Insurance.

• Insurance Information Institute,www.iii.org

• National Association of InsuranceCommissioners. Call 1-816-842-3600 orgo to www.naic.org. Click Consumers,then Consumer Publications, and selectLife Insurance Buyer’s Guide.

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Chapter 5“It’s been a rocky road at times, but finally I got back to justliving my life, focusing on my abilities instead of my ‘disability,’and thinking about my family’s future.”

—Jeff, diagnosed in 1980

Estate Planning PaperworkEstate planning means having certain paper-work in place, including a will, durable powerof attorney, health-care proxy, and otherdocuments. To draw up these documentsproperly, you may want to work with alawyer. Your state bar association, legal aidsociety, or state attorney general’s office canhelp you find the right person and paperworkto plan your estate. If you use a softwarepackage to develop a will, it still is a goodidea to have a lawyer review the paperwork.

When hiring a lawyer, interview severalbefore making a decision. Ask if the lawyerhas experience in working with people withdisabilities and experience in estate planning.Find out what the lawyer charges and whatyou can do to keep your costs down. TheAmerican Bar Association has informationon hiring and working with lawyers. Visit www.abanet.org. Click General Public Resources.

If you can’t afford to hire a lawyer, you mayqualify for legal aid. Many law schools alsooffer free or low-cost legal services.

WillYou should have a will, and if you aremarried, your spouse should have one, too.Your will directs how and to whom yourmoney, property, and other assets should bedistributed at your death. You also use a willto nominate a guardian for your minorchildren. If you die without a will, state lawwill dictate how your assets are distributedand who will look after your children.

BeneficiariesFor some assets, such as life insurance orretirement plans, you name a beneficiary toreceive the asset at your death. Make sureyour beneficiary designations are up-to-dateand match the wishes you have stated inyour will. If there is a conflict, a beneficiarydesignation will override a will.

Durable Power of AttorneyAll adults should have a durable power ofattorney. This legal document allows you to name the person who will handle yourfinances if you are unable to handle themyourself. This could include paying yourbills or signing your name on financialtransactions on your behalf.

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CH A P T E R 5

Health-Care Proxy and Living WillA health-care proxy allows you to name aperson who will make decisions about yourhealth care if you are unable to make themyourself. A living will allows you to specifythe types of medical treatment you want or donot want if you are unable to communicatethese choices. All adults should have a health-care proxy and living will. To learn moreabout these documents, ask your financialadvisor, attorney, or a librarian. You also cando an Internet search by going to your searchengine and typing, “advance care directives.”

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1. This is my plan for making sure I have adequate life insurance:

______________________________________________________________________________

______________________________________________________________________________

2. I have the following documents in place:

Will: Yes _____ No _____

Beneficiary designations: Yes _____ No _____

Power of attorney: Yes _____ No _____

Health-care proxy: Yes _____ No _____

Living will: Yes _____ No _____

Special-needs trust: Yes _____ No _____

My Plan for Handling Estate Issues

Special-Needs TrustIf you receive an inheritance, it could reduceor stop benefits you may be receiving fromMedicaid, SSI, or a VA pension. That isbecause these benefits are paid based on yourfinancial need. (SSDI and VA compensationbenefits are not paid based on financial need and, therefore, are not affected by aninheritance.)

With planning, however, your loved onesmay be able to leave you an inheritance thatwill supplement the government assistanceyou receive, not replace it. A special-needs

trust can be established to provide funds for quality-of-life items—such as therapy,classes, or a computer—that are not coveredelsewhere. You also may be able to use yourown income to set up a similar type of trust,called an income cap trust, in order to meetMedicaid income limits. Check with yourstate’s Medicaid agency at www.cms.hhs.govto learn more.

Setting up a special-needs trust requirescareful planning. Work with a lawyer who isknowledgeable about estate planning andthe rules governing assistance programs forwhich you may qualify now or in the future.

This booklet has covered manytopics—from assessing yourcurrent health-care coverage toestate planning. We hope that

you have found the booklet useful and willrefer to it often as you adapt to the changesthat accompany MS. It is the sincere wish ofNMSS, PVA, and NEFE that this bookletwill help you access the resources that willallow you to manage MS and live well.

Living life to the fullest is the best way to fight MS.

CO N C L U S I O N

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RESOURCES UPDATE — JULY 2010 DISABILITY INFORMATION (GENERAL)

• National Council on Independent Living 877-525-3400 or 202-207-0334 www.ncil.org

• National Multiple Sclerosis Society 800-344-4867 www.nationalmssociety.org. Click Home > Government Affairs & Advocacy > Government Programs > Social Security Disability

• Paralyzed Veterans of America (PVA) 800-555-9140 www.pva.org

• www.disability.gov

• www.govbenefits.gov 800-333-4636

• U.S. Department of Veterans Affairs 800-827-1000 www.va.gov

EMPLOYMENT

• A Guide for People with Disabilities Seeking Employment, published by three federal agencies: Equal Employment Opportunity Commission, Social Security Administration and U.S. Department of Justice. http://www.ada.gov/workta.htm.

• Disclosure: The Basic Facts (Fact Sheet) National MS Society 800-344-4867 www.nationalmssociety.org/brochuresbytitle

• Job Accommodation Network (JAN) 800-526-7234 http://askjan.org.

• Should I Work? Information for Employees (brochure) National MS Society 800-344-4867 www.nationalmssociety.org/brochuresbytitle

• U.S. Department of Labor Office of Disability Employment Policy www.dol.gov. Click A to Z and search for employment and job information.

• U.S. Equal Employment Opportunity Commission (EEOC) 800-669-4000 www.eeoc.gov.

• U.S. Small Business Administration (SBA) 800-827-5722 www.sba.gov

• Win-Win Approach to Reasonable Accommodations (booklet). National MS Society 800-344-4867 www.nationalmssociety.org/brochuresbytitle

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RESOURCES UPDATE — JULY 2010 GOVERNMENT PROGRAMS/DISABILITY LAWS • ADA and People with MS (booklet)

National MS Society 800-344-4867 www.nationalmssociety.org/brochuresbytitle

• Americans with Disabilities Act: Your Personal Guide to the Law, published by the PVA. www.pva.org. Click Publications > Advocacy and Accessibility > Americans with Disabilities Act: Your Personal Guide to the Law.

• National Network of ADA Centers 800-949-4232 www.adata.org

• Federal Benefits for Veterans, Dependents & Survivors (2010 Edition). Available on U.S. Department of Veterans Affairs website: www1.va.gov/opa/publications/benefits_book.asp

• Medicare and Medicaid information 800-633-4227 www.cms.hhs.gov

• Medicare Information 800-633-4227 www.medicare.gov

• Social Security benefits 800-772-1213 www.ssa.gov

• Veterans Administration benefits 800-827-1000 www.va.gov. Scroll over “Veteran Services” Select topic area.

• Vocational Rehabilitation agencies. Look for phone number in blue pages of the phone directory, or go to www.askjan.org. Click Publications and Resources > Resources/Federal > Federal, State and Local Resources > Vocational Rehabilitation Agencies.

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RESOURCES UPDATE — JULY 2010 HEALTH CARE COVERAGE • The Disease-Modifying Drugs (brochure)

National MS Society 800-344-4867 www.nationalmssociety.org/brochuresbytitle

• A Guide To Managed Care, For People with Spinal Cord Injury or Disease (Second Edition), published by PVA. 888-860-7244 www.pva.org PVA Distribution Center P.O. Box 753, Waldorf, MD 20604-0753

• The Keys to Managed Care: A Guide for People with Physical Disabilities; published by PVA. 888-860-7244 www.pva.org PVA Distribution Center P.O. Box 753, Waldorf, MD 20604-0753

• VA Health Benefits for People with MS 877-222-8387 www.va.gov/ms

HOME HELP • Hiring Help at Home: The Basic Facts (fact sheet).

National MS Society 800-344-4867 www.nationalmssociety.org/brochuresbytitle

• Managing Personal Assistants: A Consumer Guide, published by PVA. 888-860-7244 www.pva.org PVA Distribution Center P.O. Box 753, Waldorf, MD 20604-0753.

• National Family Caregivers Association 800-896-3650 www.nfcacares.org

• Tax Highlights for Persons with Disabilities (IRS Publication 907). 800-829-1040 www.irs.gov

• Living and Working with Disabilities (IRS Publication 3966). 800-829-1040 www.irs.gov

• Eldercare Locator, a public service of the Administration on Aging, U.S. Department of Health & Human Services. 800-677-1116 www.eldercare.gov

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RESOURCES UPDATE — JULY 2010

HOUSING • Accessible Home Design: Architectural

Solutions for the Wheelchair User (Second Edition), published by PVA. 888-860-7244 www.pva.org PVA Distribution Center P.O. Box 753, Waldorf, MD 20604-0753.

• At Home with MS: Adapting Your Environment, (booklet) National MS Society 800-344-4867 www.nationalmssociety.org/brochuresbytitle

• U.S. Department of Housing and Urban Development (HUD) 202-708-1112 www.hud.gov

PERSONAL FINANCE • Alliance for Investor Education

www.investoreducation.org

• American Institute of Certified Public Accountants 888-777-7077 www.aicpa.org

• American Savings Education Council 202-659-0670 www.choosetosave.org/asec

• Financial Planning Association 800-322-4237 www.fpanet.org

• Investment Company Institute 202-326-5800 www.ici.org

• National Association of Personal Financial Advisors 847-483-5400 www.napfa.org

• National Endowment for Financial Education 303-741-6333 www.nefe.org

• National Foundation for Credit Counseling 800-388-2227 www.nfcc.org

• Society of Financial Service Professionals 610-526-2500 www.financialpro.org

Adapting: Financial Planning for a Life with Multiple Sclerosis was written andprepared as a public service project by theDenver-based National Endowment forFinancial Education® (NEFE®); William L.Anthes, Ph.D., President; Brent A. Neiser,CFP®, Director of Collaborative Programs;and Jeannette Herreria, Project Manager ofCollaborative Programs.

NEFE is an independent nonprofit founda-tion committed to educating Americansabout personal finance and empoweringthem to make positive, sound decisions toreach their financial goals. The NationalEndowment for Financial Education, NEFE,and the NEFE logo are federally registeredservice marks of the National Endowmentfor Financial Education. For more informationabout NEFE, visit www.nefe.org.

The National Multiple Sclerosis Society(NMSS) supports more MS research andserves more people with MS than any otherMS organization in the world. NMSSpartners with the health-care community topromote quality care and is the only MSorganization in the United States that meetsthe standards of all major agencies that ratenot-for-profit groups. Through NMSS’s 50-state network of chapters, assistance isprovided to more than a million peopleannually. For more information aboutNMSS, visit www.nationalmssociety.org.

The Paralyzed Veterans of America (PVA), a congressionally chartered veterans serviceorganization, works to improve the qualityof life for individuals with spinal cord injuryand disease through research, education, and advocacy for health care, civil rights,and opportunities for its members and allAmericans with spinal-cord dysfunction. For more information about PVA, visitwww.pva.org.

NEFE, NMSS, and PVA would like toextend special thanks to the individuals andsupport groups whose insights about life withMS helped to make this publication possible.

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