Chapter 7 - Financial, Legal & Medical Issues

GET YOUR AFFAIRS IN ORDER

ALS, with all of the equipment, medications, monitoring and daily support required, is expensive. It can easily deplete even a comfortable family’s resources. Financial worries often are a major stressor for family caregivers.

During the years in which ALS determines a family’s way of life, financial decisions take on new priorities. ALS adds the following to the normal family budget:

• home modifications
• medical bills
• therapies
• durable medical equipment such as wheelchairs
• supplies and maintenance such as wheelchair batteries or liquid nutrition
• home care assistance
• prescription drugs and supplements

Early in the disease, evaluate family income and expenses and project ahead five, then 10 years. Take into account that the person with ALS will likely have to stop working — it’s difficult to project when, as each timetable is individual. Often, the primary caregiver gives up his or her job soon after to devote full time to the caregiving role.

This chapter lists a variety of financial options. Many of them take a lot of research and questioning to understand; consider enlisting someone in your family or circle of volunteers (see Chapter 8) to help with this homework. Or, an elder law attorney or benefits counselor could clarify your position with regard to financial resources. At any rate, the more information available, the better prepared a family is to make decisions and seek out financial programs at the most beneficial times.

Finding Funds — Private Sources

Suzanne Mintz, writing in her 2007 book, A Family Caregiver Speaks Up, says, “One of the things that frustrates family caregivers more than others is the fact that they are left on their own to wade through a patchwork sea of disparate programs that may not be open to them or meet their needs. Everyone working in the field of caregiving agrees that our system of social supports is hopelessly fragmented and insufficient. Family caregivers need the mental acuity and passionate perseverance of a Sherlock Holmes to even solve one part of their supportneeds puzzle. Even medical and social service professionals have trouble finding what they need when caregiving turns personal.”

That’s the unfortunate picture: ALS is hard enough to deal with, but on top of that there’s a confused tangle of red tape. The information and resources listed here can help sort out some of that confusion.

In addition to looking into what major government programs and health insurance may provide, the person with ALS should consider these ways to maintain income or acquire other funds (see “Resources” for more details about each of these):

• Continue working part time, from home or as a consultant. The Americans with Disabilities Act doesn’t allow an employer with more than 15 employees to discriminate based on disability. An employer may be willing to modify job duties or conditions as long as an employee still is productive.


• Look into early retirement. This allows the employee to receive some income and to retain medical insurance. Under COBRA (the Consolidated Omnibus Budget Reconciliation Act), with proof of disability, a retiree is entitled to continued medical insurance coverage for up to 29 months or until the person qualifies for Medicare — at the retiree’s own expense. COBRA also applies to employees who resign or are fired.



“Keep all papers on out-of-pocket expenses. This includes home improvements, showers, special toilets, ramps, hand rails, lifts on vans, etc. All this is deductible for IRS and state tax over a certain amount. So keep that shoebox handy to keep your records of what you pay out. We did this for 20 years with my husband’s care and it never was questioned by IRS or the state.”

• Exercise economies in everyday life. Cut unnecessary expenditures and look into less expensive brands of products. Saving a few bucks a week can add up. Trade in the brand new car for one with a few years on it. Sometimes you can take the car back to the dealership and explain the situation, and the dealer or manufacturer will cancel the contract or lease. Buy in bulk or ask a friend to split a large order or pick up a sale item. Investigate lower-priced cable TV and cell phone service; tighten up little budgetary “leaks” where small amounts of money are being spent unnoticed.


• Take advantage of tax deductions related to ALS. As of 2007, if unreimbursed medical expenses, including transportation to doctor visits, exceed 7.5 percent of adjusted gross income, you qualify for deductions on Form 1040, Schedule A.

Also deductible are “impairment-related work expenses,” which are disability adaptations and services that enable a person to continue working (see IRS Publication 907). This can include special computer programs and technological adaptations, hired work assistants and, sometimes, personal assistance at home for getting dressed and ready for work. The standards for claiming impairment- related work costs are less stringent than for medical deductions. If the device or service is “helpful and appropriate,” the deduction often qualifies. Keep receipts!

People with disabilities may, under certain circumstances, receive a tax credit for child and dependent care expenses (see IRS Publication 503) or qualify for the Credit for the Elderly or Disabled (see IRS Publication 524).

By the way, if the person with ALS is no longer able to sign his or her name, the caregiver will have to do that. For official documents such as tax returns, you’ll need to show a power of attorney form that gives you authority to sign for your loved one.

• Get a reverse mortgage. People over 62 who own all or most of their home can borrow against that equity without having to pay it back. The homeowner retains title and pays property taxes, insurance, maintenance costs, low interest and some high upfront loan fees. The loan — from government or private sources — doesn’t have to be repaid until the last surviving owner vacates the home, at which point the home is sold to pay the bill.


• Borrow to modify the house. Those who need to make physical adaptations to their homes because of disability may be eligible for a Title I Home Improvement Loan insured by the U.S. Department of Housing and Urban Development (HUD). The loan can be used to remove architectural barriers, hazards or inconvenient features in the home.

  A home equity loan (second mortgage) can serve this purpose and also be used for ordinary expenses. Some families advise getting an equity line of credit or home equity loan for the maximum amount, just to have funds available. This provides funds but, of course, must be repaid. It’s best to apply for these loans while at least one spouse is still employed full time.

• Let friends pitch in. Friends, neighbors, co-workers, church members or civic club members who want to help someone with ALS can be put to work organizing a yard sale, concert, spaghetti dinner or other event to help cover a specific expense such as a wheelchair-accessible van or home modification.


• Raid retirement savings. Money put into an IRA, 401k or 403b plan, or other retirement account normally can’t be touched until the saver is 59.5 years old. People younger than that who need cash for ALS expenses may be able to borrow or take cash from the account. Often there’s a stiff financial penalty involved, but some plans make an exception for disability-related expenses.


• Use disability insurance. When unable to work, people with long-term disability insurance receive an income for life or for a specified time. The amount is usually a percentage of the person’s previous salary. Some employers provide disability insurance as part of a company benefits package.

  Be aware that some long-term disability policies will reduce the benefit if the person with ALS, his or her spouse, or children are receiving other benefits such as Social Security. Read the fine print!

• Move assets. In anticipation of eventually needing Medicaid or Social Security Disability Insurance benefits, diminish the assets of the person with ALS. They can be moved into a spouse’s name alone. Or, they can be distributed to heirs up to a certain limit per year. This is tricky. Be sure to check with an elder law attorney first. An elder law attorney specializes in issues related to the elderly or people with disabilities.


• Use life insurance. There are several ways in which a person with ALS may use life insurance settlements to help with expenses, including borrowing against the policy: Many insurers allow people to take up to 50 percent or so of the benefits upon confirmation of a terminal illness, and the proceeds aren’t taxable. Premiums must continue to be paid, and the beneficiary will only receive what’s left after the loan is repaid.

  Some life insurance policies have disability waivers, which suspend payment of premiums as long as the person is disabled but keep the policy in force. That policy can be used as collateral in a loan application.

• Another choice is the cash surrender value, in which the insured person terminates the policy and receives a cash settlement. However, this amount is much less than the full amount a beneficiary would receive. It’s also possible to sell a life insurance policy as a viatical settlement. Investors purchase the policy at less than the death benefit.

  Taking cash from a life insurance policy before death will lessen its eventual value; decide whether that loss to the beneficiary is a good tradeoff for cash to help cover ALS expenses.

• Check with your Area Agency on Aging or state department of social services to see whether your loved one can hire a family member as a caregiver and receive payment for his or her services.

“Resources,” lists other sources of financial support. Consult an elder law attorney or a trusted financial adviser acquainted with disability issues before making any major financial decisions.

Finding Funds — Government Sources

People with ALS and their caregivers have paid taxes to the state and federal governments for many years, and an ALS diagnosis means it’s time to claim some of the benefits those taxes support. First, the person with ALS must choose between continuing to earn an income and taking advantage of government programs, which define disability as inability to work.

Some federal programs require that applicants not earn any income, and in some cases, have only minimal assets. See “Resources,” for where to apply and where to read about these programs in detail.

Many federally funded programs are directed at the state level, and each state’s program is different. Some state programs are more advanced than the federal legislation, but many are below federal guidelines. The information here is general. To find out what public programs exist in your state, go to www.caregiver.org and click on “50-state searchable resource map.”

NOTE: Social Security, Medicare and other government programs described here may be changed by Congress at any time. Consult an adviser or the offices of these programs for the latest guidelines. Don’t sign up for any program before understanding the long-term implications. Other families in your MDA support group may be able to recommend a good adviser.

Social Security Disability Insurance Benefits (SSDI)

To qualify for this program administered by the Social Security Administration, a person must have a disabling condition that prevents working, and the condition should be expected to last at least 12 months. The person must be under 65 and have paid a qualifying amount into the Social Security system throughout the working years.

People with ALS who meet the qualifications are granted “presumptive” or automatic eligibility for SSDI benefits, meaning they should need nothing more than a doctor’s statement of diagnosis to prove qualification. The person will receive a monthly check indefinitely, or until able to work again. At age 65, disability benefits turn into Social Security retirement benefits. SSDI is available without regard to family assets or income.

Sign up for SSDI at any Social Security office as soon as the diagnosis of ALS is made or as soon as the person stops working. Benefits won’t begin until five months after disability status has been granted, and the approval process may take time. Bring employment and medical information, including W-2 forms, copies of doctors’ diagnoses, and their addresses and phone numbers for verification. It’s possible to apply for SSDI online or by phone. If the person you talk to doesn’t seem to understand or to be knowledgeable, go to the local Social Security office, or consult another adviser.

SSDI recipients with ALS can begin receiving Medicare Part A (with Part B optional) as soon as they get SSDI.

Supplemental Security Income (SSI)

SSI is a monthly benefit paid to adults of any age who are aged, disabled or blind and who have limited income and resources. People with ALS who have never been employed may be entitled to SSI. When applying, bring Social Security number, birth certificate or proof of age, as well as information about the diagnosis and your home and medical care.

People who receive SSI benefits are often eligible for food stamps and Medicaid too.

Social Security Income for Children

Benefits are paid to minor children when a parent who is eligible for Social Security becomes disabled or dies. The benefit depends on other family income; the child must be under 18 and unmarried; benefits may continue past age 18 for full-time students or those with disabilities.

NOTE: Some long-term care insurance policies state that Social Security or other income paid to youngsters can be subtracted from the income paid by the insurance to the parent.

Medicare

Part A

Medicare refers to health insurance administered by the federal government; it’s available to people over 65, or those under 65 with disabilities. A person with ALS qualifies for Medicare as soon as SSDI benefits begin.

The Medicare beneficiary pays no premiums for Part A, which helps cover:

• care in the hospital
• related services after leaving the hospital
• partial coverage of post-hospitalization hospice services
• respite care for caregivers of those in hospice
• medically necessary skilled nursing care at home or in a care facility

Certain deductibles and coinsurance amounts apply. It’s possible to buy into Part A if you’re over 65 but never paid Medicare taxes.

Part B

While Medicare Part A costs the consumer nothing, its coverage is generally limited to medically necessary hospital or hospice care. Many more services important to people with ALS are available under Medicare Part B, which requires payment of a tax-deductible monthly premium. Part B helps pay for:

• doctor visits
• outpatient care
• preventive care and diagnostic tests
• ambulance
• emergency room services
• lab services
• physical, occupational or speech-language therapy
• outpatient mental health care
• custodial care in nursing home
• canes and crutches
• commode chairs
• durable medical equipment
• orthotics
• walker or wheelchair

Parts A and B both pay toward home health care under certain circumstances. For details, go to www.medicare.gov/publications and enter “10116” into the search box.

Medicare Parts A and B generally pay 80 percent for health care and equipment, so most people also carry a Medigap or supplemental policy to pick up the rest. For conditions like ALS, Medicare coverage for home care, therapies and nursing homes is limited to a short period of time and skilled nursing care only. To get coverage for the ongoing services that people with ALS require, a doctor’s letter of medical necessity may have an impact.

Insurance systems are based on an “acute care” model, geared to the needs of those with a temporary illness or injury who are expected to improve. With either Medicare or private health insurance, it can be difficult to get care for a chronic condition such as ALS. However, families who’ve dealt with this situation have found a plethora of solutions.

Part C

Medicare has introduced Advantage Plans which allow a choice of HMOs, PPOs or other plans. These include Parts A and B of Medicare, and Part D is optional.

Part D

This newest Medicare benefit, which went into effect in 2006, is prescription drug coverage. It requires a separate application and enrollment, and sometimes charges a premium.

Programs for Medicare Beneficiaries with Low Incomes

Each state is required to offer a Qualified Medicare Beneficiary Program and a Specified Low-Income Medicare Beneficiary Program to help Medicare recipients with low incomes; these may help pay additional health care expenses.

Medigap Insurance

This term refers to private insurance policies that can supplement the coverage provided by Medicare.

Medicaid

Medicaid, also known as the Medical Assistance Program, is a federal program that’s administered separately by each state, that helps cover medical costs of people with low incomes. Those with higher incomes may be eligible if their medical expenses exceed a given percentage of their annual income. Medicaid benefits vary from state to state, but coverage for long-term care usually is more extensive than that provided by Medicare. Medicaid may cover in-home and nursing home care for an unlimited time period, and includes nonmedical as well as medical care. Medicaid guidelines and eligibility requirements vary from state to state.

Eligibility is based on three criteria: care needs, income and assets. Earned wages, Social Security, disability insurance, retirement, pension and alimony all count toward the income cap for Medicaid eligibility. Assets include bank accounts, brokerage accounts, stocks and bonds, loans, annuities, and any resource of value owned jointly by applicant and spouse. To learn the rules of your state’s Medicaid program, visit www.cms.hhs.gov/medicaid/statemap.asp and click on your state; or call your Medicaid agency. You also can call the Centers for Medicare & Medicaid Services (CMS) at (877) 267-2323.

Once you’re eligible for Medicaid, most states also cover physician, psychologist, rehabilitation, chiropractic, dental, laboratory and X-ray services, hospital visits, prescription drugs and prosthetic devices. When Medicaid initially assesses a person’s assets to check for qualification, that “snapshot” determines how much can be retained by the unaffected spouse. An expert can advise on the details in your state and what assets are counted in the calculation. Do not transfer assets to other family members before consulting an attorney or benefits expert, as there are very strict guidelines for this process.

Qualified Income Trust

There are a couple of ways to get around Medicaid’s income and asset limitations.

A Qualified Income Trust, also known as a Miller Trust, is an account in which you deposit enough income — earned, pension, Social Security, etc. — to reduce your qualifying income for Medicaid coverage of nursing home placement. In most states, as of 2007, the income cap is $1,737 per month, or three times the current Supplemental Security Income [SSI] benefit.

Placing funds into a QIT lets you qualify for Medicaid and receive benefits such as long-term care programs. The funds left in trust may be available to leave to the survivor.

Cash and Counseling

Another Medicaid program, called Cash and Counseling, gives cash instead of standard agency services to eligible individuals. The beneficiary then can decide how to spend the cash to cover disability-related expenses. It can be used to buy equipment, or pay for home care, or whatever makes the most sense for the individual. Beneficiaries receive counseling to determine the most effective use of their cash; hence the name of the program. At this writing, the program only is available in about 15 states on a trial basis, but soon may be expanded.

Medicaid State Waivers

Many states have waivers to the Medicaid program that cover services over and above regular Medicaid benefits. They may cover specific needs or provide enough care to allow the person to remain at home, or even pay family members to be caregivers.

Other Government Funding Sources

Alternative Financing Program

This federal/state program grants low-interest loans to people with disabilities, their relatives or advocates in order to purchase assistive technology or services. People who don’t qualify for traditional bank loans may find AFPs more receptive to their applications. (See “Resources.")

Title I Home Improvement Loan

Family and Medical Leave Act

Caregivers and people with ALS can take advantage of the Family and Medical Leave Act of 1993 to hold onto their jobs. An individual may be entitled to take up to 12 weeks of unpaid leave to care for a close family member without fear of losing his or her job.

Veterans Administration

ALS researchers have established that veterans of the Persian Gulf War in the early 1990s have a slightly higher risk of developing ALS when compared to other Americans of the same age. It’s one aspect of the phenomenon known as Gulf War syndrome (veterans of the Iraq War haven’t yet been studied for this effect). The reasons involve environmental exposure interacting with particular genetic factors; the exact mechanism is part of the mystery still surrounding the causes of ALS.

ALS developed as part of the Gulf War syndrome isn’t clinically any different from other types of ALS. The Veterans Administration offers a Gulf War registry examination and other benefits for veterans.

If your loved one with ALS is a military veteran, he or she should check with the Department of Veterans Affairs to find out about programs available to veterans with disabilities. Programs may provide those qualified with outpatient medical services, in-home respite care, durable medical equipment, day services for vets and caregivers, lower-cost prescriptions and special assistance for veterans of the Gulf War whose ALS may be service-related.

Independent Living Centers

Independent living centers (ILCs or CILs) exist in every sizeable city. They focus on enabling people with disabilities to live independently in the community and at home, and the staff usually knows about all types of resources for people with disabilities. Ask your local MDA office for information about these programs, or visit the National Council on Independent Living site, www.ncil.org/directory.html.

P&A and CAP

The Protection & Advocacy System (P&A) and the Client Assistance Program (CAP) are mandated by the federal government to help protect the legal rights of people with disabilities. P&A and CAP services vary from state to state. To find local offices, go to the National Disability Rights Network Web site, www.napas.org, and click on “Get Help in Your State.”

Help With Health Care & Equipment Costs

Private and government insurance plans cover a great deal of the medical expenses associated with ALS, but not everything. Become familiar with which policies cover what, and be prepared to appeal denials of coverage. (See “Resources.”)

Private Medical Insurance

Under federal regulations, an employer’s health care plan must include arrangements for continuing an employee’s coverage for at least some period of time after the employee leaves the job for reasons including disability. (See “COBRA.") The employer also may maintain short-term and long-term disability plans for employees. Check with the company’s human resources department.

Most group and private health insurance programs now are offered through health maintenance organizations (HMOs), preferred provider organizations (PPO) or some other type of managed care. Because managed care companies are committed to saving costs, they may present obstacles to complete care for people with serious conditions like ALS. They may be reluctant to refer a patient to a specialist outside the organization, unwilling to cover long-term therapies or deny other claims. All insurance organizations have appeals procedures. Ask for the company’s patient advocate, or your employer’s human resources department, in order to find out more about these. See “Coverage Denial,” for more ideas on dealing with denials.

Many medical insurance policies have a cap, or maximum amount, which means the policy only will cover the costs of ALS until a certain total has been spent.

Medigap or Supplemental Insurance

It’s important to hold onto group coverage through an employer to cover the things Medicare won’t cover; if the group policy expires, look into a Medigap or supplemental insurance policy. These can be purchased even after an ALS diagnosis. These policies don’t cover as many expenses as long-term care or private health insurance, but they’ll help.

Although experiences vary, some supplemental insurance policies that people with ALS have found satisfactory are:

• American Association of Retired Persons
• Blue Cross Blue Shield
• Aetna
• Humana

If the person with ALS has no prescription drug coverage, and isn’t enrolled in Medicare Part D, a local pharmacist should be able to explain which insurance would cover necessary drugs.

Long-term Care Insurance

Many people have this type of insurance policy, which covers medical and care expenses at home or in a nursing facility.

It’s also a good idea for a primary family caregiver to purchase this type of policy for himself or herself. The spouse or adult child with ALS isn’t going to be able to provide care if the caregiver becomes ill.

Coverage Denial

Even under the best insurance plans, specific claims sometimes are denied. When consumers feel the denial violates the policy, they can appeal the decision, often with good results. Some observers say that insurance companies deny a certain number of claims in the belief that people won’t bother to appeal.

Some tips for appealing a denial:

1. Get help. The doctor, hospital business office or employee benefits office may be willing to argue that an expense is medically necessary, and this can be a lot more powerful than statements from an individual policyholder. Health care staff at MDA clinics are used to providing these letters of medical necessity and usually know the right words for requesting coverage or appealing a denial.

   When the insurance denial says that some service, such as physical therapy, is only covered for a certain number of weeks, an effective letter from a physician or specialized therapist might point out some slight change that creates a new or ongoing need for the coverage: new caregivers who need training in transfers, ROM exercises, or positioning in bed and wheelchair; indications that therapy will provide increased functional independence, more safety in transfers and mobility, safer swallowing, improved speech, etc. A change in condition — the patient is much weaker and is having increased joint pain — can justify sending a PT to the home to instruct caregivers in more appropriate ROM and stretching exercises.

2. Be persistent. It may be necessary to go through several levels of appeals, but showing that you aren’t giving up can persuade the insurance company to settle the claim.


3. Use the right words. Be sure to cite a specific medical problem that the service addresses; stay away from terms like “cosmetic” or “self-esteem.” Never make the argument that a patient benefit will help the caregiver provide better care.


4. Ask your doctor to try again. Be sure that the letter of medical necessity states each specific medical problem for which the procedure or drug is needed.


5. Consult a lawyer. Many times the threat of a lawsuit (with lawyers copied on letters) gets the insurer’s attention and reverses a denial.


6. Use the case manager. The social worker who oversees your case at the MDA clinic or hospital plays the role of patient advocate and guides families through this process.

Hospice

Hospice care (which can take place in your home or in a facility) focuses on preserving quality of life for a terminally ill person, and provides caring services for the whole family. Hospice services can provide medical equipment, in-home nursing care, social services, respite care, bereavement counseling and other services. A doctor must refer a patient for hospice care. It’s a great relief for caregivers. (See “Hospice.”)

Hospice care is usually covered by Medicaid, private insurance and Medicare. Most hospice programs require a doctor’s statement that a person has six months or less to live, although that statement is just a “guesstimate,” not a fact, and people may live for years after having been referred to hospice. It’s possible to go on and off hospice several times, if the person’s condition changes. To find out more, contact a local hospice organization. Staff can visit your home and do an intake application to see what help they can give.

Prescription Drugs and Supplements

Several sources of help exist for purchasing prescribed drugs and nutritional supplements. See “Resources,” for details on:

• Discount cards and free drug programs
• Buying online from U.S. pharmacies
• Buying and ordering online from Canada
• Medicare Part D
• National Organization for Rare Disorders (NORD) medication assistance program, which helps people obtain Rilutek
• Suggestions from local pharmacists

Low-cost Sources for Equipment

Most durable medical equipment, such as wheelchairs and ventilators, is prescribed by doctors, and therapists consult on the proper fit and model. These usually are covered by insurance, often with a deductible paid by the consumer. Using a borrowed or secondhand item — always in consultation with a physical therapist — can save some cash. Most insurance companies will pay for only one wheelchair every five years. Save this benefit for the sophisticated, expensive power wheelchair needed in the later stages of the disease.

Consult with a therapist before buying any mobility equipment on your own, especially something like a scooter that requires some strength to operate, because ALS only may allow a few months of usage before weakness makes the equipment unusable. Other equipment, such as hospital beds, bath chairs or vehicles that accommodate wheelchairs, doesn’t have to be so carefully matched to the individual’s physical abilities.

There are many ways to find used or temporary equipment, and to lower costs. Here are a few:

• MDA loan closets have many donated pieces to lend.
• MDA provides financial assistance with repairs or modifications to all types of durable medical equipment.
• Rather than going through a local dealership for a wheelchair, CoughAssist or other device, go directly to the manufacturer. It’s possible to negotiate a discount, and most companies will handle billing the insurance company or Medicare. Local providers will come to the home to set up equipment such as ventilators and monitor them regularly.
• Study the health insurance policy or Medicare guidelines, and be sure to choose a device that fits their coverage criteria, or prepare to argue for the one that’s needed. Be aware that most insurers will buy a wheelchair only once every five years or so. Don’t waste this benefit on a low-cost scooter or used manual chair. Save it for a good power chair with all the bells and whistles.
• Friends, relatives, church members or support group members sometimes have items to discard or sell.
• Check MDA newsletters and notices at clinics, and ask MDA health care service coordinators about vendors who have good-quality secondhand equipment. Also ask occupational, physical, respiratory and speech therapists.
• Look at "for sale" ads on the bulletin boards, Web sites and newsletters of rehabilitation hospitals, independent living centers, state Rehabilitation Departments and other local disability organizations. Try skipslist.org or craigslist.org.
• Check ads in the classified pages of the daily newspapers or local "shoppers,” or even on supermarket bulletin boards.
• Pawn shops and secondhand stores sometimes have walkers, wheelchairs, hospital beds and the like.
• Search the Internet under “durable medical equipment” or “wheelchairs”; many Web sites, including eBay, list and picture secondhand canes, cushions, wheelchairs, vehicles, walkers and other devices.
• See “Resources,” for information about resources for buying and selling adapted vans. Check NMEDA for reputable sources of vehicles.
• The Technical Assistance Project maintains local centers that offer assistance in obtaining funding for technology devices; many have equipment lending, exchange or recycling programs. The project is supported by the federal Technology-Related Assistance for Individuals with Disabilities Act funded through the National Institute on Disability and Rehabilitation Research.
• Watch articles in MDA’s Quest and MDA/ALS Newsmagazine to compare products and get other ideas on cost savings. Ads in Quest sometimes offer a discount for Quest readers.
• The Alternative Financing Program grants low-interest loans for purchase of assistive technology or services. See “Resources.”

Vehicles

See “Resources,” for information on ways to finance an adapted van.

Organizing Financial Information & Making Decisions

Medical & Legal Records

Keep complete, detailed records of all medical events in the life of the person with ALS, including appointments, medications, treatments, tests, equipment and hospitalizations. This personal health record also should include names and contact information of the ALS clinic coordinator, nurse and doctor, insurance ID numbers, blood type, a list of medications and equipment, whom to call in an emergency, special care issues and other relevant documents. This will be helpful in speaking with new medical personnel, hired caregivers, hospital staff and insurance representatives. Bring this record along when your loved one has to go to the emergency room.

It’s also good to have all important legal papers related to your loved one’s care in one place for easy access. A notebook or box could contain: insurance policies, living will, DNR orders, will, names and contact information for doctors, property deeds and other legal documents. In addition, it could include a list of people to be contacted at various times in the disease, where to find other important papers and anything else related to final wishes (see Chapter 9).

Put original legal documents in a safe deposit box. Keep a set of copies in a handy file to take to the hospital or emergency room, and another to take in case of emergency or natural disaster (see “Emergency Preparation”).

Planning

ALS brings to the foreground many issues that most of us put off dealing with. Sometime early in the disease, the person with ALS and the family caregiver should begin to plan for later stages of ALS and issues that will be important after death. It’s helpful to start early sorting out the financial and insurance questions covered in this chapter. Although absolute decisions don’t have to be made about late-stage care, a discussion should begin; it will become harder to talk about when your loved one’s speech becomes affected by ALS.

One couple sent their children out for the evening with money for pizza and a movie. Together the two went over all the financial and legal decisions and information they needed to deal with. They grieved and cried at the thoughts these discussions brought up, but afterwards, having the paperwork done and the ordeal behind them allowed them to focus on day-to-day caregiving issues with greater confidence and calmness.

One early decision is when to transfer titles for property into the spouse’s or other relative’s name, rather than continuing joint ownership. This will simplify applying for government benefits, collecting insurance benefits and dealing with probate. Be sure safe deposit boxes can be accessed by the surviving caregiver alone.

Always consult an attorney or financial adviser to be sure you understand all the choices and implications; it will cost more upfront but can save thousands of dollars in the long run.

Guardianship of Children

Custody of minor children is usually awarded to the other parent or nearest relative. A single parent with ALS who wants someone else to take custody should get the legal documentation completed.

It’s also wise to set up trusts or life insurance for later support of the children. Look into special needs trusts if a child has a disability.

Power of Attorney

A durable power of attorney for health care confers on a close relative or friend the legal power to make medical decisions in the event the person with ALS becomes unable to communicate wishes. A general power of attorney can grant someone the authority to make legal, financial and other decisions for the person with ALS. These documents are available at most hospitals, from attorneys, in public libraries and online.

When people with ALS can no longer sign their names, caregivers can do it for them. For official documents such as tax returns or property deeds, a power of attorney form is needed in order to sign for a loved one.

Advance Directives & Living Wills

As ALS progresses, it will be necessary to discuss your loved one’s wishes regarding advanced medical intervention. When ready, make these wishes formal in a living will and a durable power of attorney. The person may wish to stop ventilatory support when quality of life seems too poor to continue. The person still can receive palliative care at home, in the hospital or in a hospice setting, which alleviates symptoms and maintains comfort. As difficult as it is to discuss such things, it’s better to have wishes out in the open while the person is able to communicate; be sure to inform the health care team of the decision. See “Stopping Ventilatory Support.”

A living will (or medical directive or health care proxy) specifies exactly what types of advanced medical intervention a person with ALS does and doesn’t want, should a medical emergency arise or should the person become permanently unconscious. It also can state the person’s wishes in case of advanced dementia or other specific crises. These may involve decisions about invasive ventilation or resuscitation. Once a living will is signed, it can always be changed, or overridden by the person with ALS. Having it in place eases family members’ uncertainties about unwanted medical intrusions.

While all those close to the person may want to express their wishes, the fact is that interventions or lack of them are ultimately up to the person with ALS (see Chapter 9). He or she should make sure that at least one close loved one knows exactly what they want and has power of attorney.

DNRs

Most people feel very strongly that they want to have some control over the manner of their deaths, if possible. A living will can include specific instructions about DNR (do not resuscitate) orders. These should explain what the medical condition is, and whether the person can speak, can breathe independently, has a feeding tube, and the location of other instructions. DNR details must fit the requirements of the state of residence. Check to see whether a doctor’s signature and/or notarization are required.

A living will or DNR should be very specific. It may have to be read in the hospital, or by emergency personnel coming to the home, usually in a time of crisis when everyone is upset. Generally, “being DNR” means not having any heroic, major interventions done; the hospital still will give comfort care which consists of oxygen, morphine and food. Be specific about what “heroic interventions” and comfort care are requested, and which are forbidden.

Among the life-sustaining procedures that may be applied are:

• CPR (chest compressions)
• defibrillation (shocking the heart)
• advanced cardiac life support medications
• artificial food and hydration
• antibiotics to treat an infection
• artificial ventilation
• pain medication

If the living will doesn’t state a preference about food or oxygen, the family can speak to the doctors about what they believe their loved one would have wanted. Doctors often will heed family members' wishes. But if there’s disagreement among family members, medical staff will side with intervention. That’s why the patient’s wishes should be stated in a legal DNR.

On the other hand, emergency medical personnel may not be allowed to honor a “verbal DNR” from a family member. Valid, signed documentation should be produced when the paramedics arrive. In case of confusion, the patient can have a pendant or Medic Alert bracelet attached to clothing that states DNR terms or asks for CPR (be sure the state considers these valid). Some EMTs are trained to look on the refrigerator for a packet containing health history, meds and advance directives, or a notice of where to find these things. If instructions aren’t clear and immediately visible, EMTs will do whatever they can to save the patient.

As long as the person with ALS can express wishes verbally, he or she can request that machines be turned off. But usually when this crisis stage is reached, the person is unable to speak or write. A living will can state under what circumstances the person wants lifesaving equipment turned off.

Wills & Estate Planning

1. Make sure the wills of both the person with ALS and the spouse are up to date and accurately reflect their wishes.
2. Review life insurance policies. Make sure the right beneficiaries are named.
3. Set up trusts, life insurance or special needs trusts to support surviving children.
4. If the person wishes to leave a gift to a charity, under some circumstances charitable gift annuities can provide income for the family and leave the remainder to the charity. (To find out about MDA’s charitable gift annuities, call the planned giving department at 800- 223-6011 or e-mail philanthropy@mdausa.org.)
5. Review all documents periodically with the person with ALS and make any requested changes.

RESOURCES

Back issues of MDA publications, such as Quest and the MDA/ALS Newsmagazine, can be found online at www.mda.org/publications, or by calling your local MDA office, (800) 572- 1717.

Finding Funds — Private Sources

“It’s All in the Plan — How to Start Long-Term Financial Planning,” MDA/ALS Newsmagazine, October 2007

Financial Aid for the Disabled and Their Families, by Gail Ann Schlachter and R. David Weber, Reference Service Press, 2006

Plan While You Can: Legal Solutions for Facing Disability, by Roger W. Anderson, 1stBooks, 2003

The Cost of Caring: Money Skills for Caregivers, by Anne M. Johnson and Ruth Rejnis, Wiley, 1998

Information and Referral
www.211.org

Modest Needs
(212) 463-7042
www.modestneeds.org
Offers self-sufficiency, back to work, and independent living/quality of life grants.

Ride for Life
(631) 444-1292
www.rideforlife.com
Offers respite grants and legal grants for people with ALS.

Working

A Consumer Guide to Handling Disputes with Your Employer or Private Health Plan, by the Kaiser Family Foundation and the Center for Consumers Health Choices at Consumers Union, 2005

Benefits Management for Working People with Disabilities: An Advocate’s Manual, by Edwin J. Lopez-Soto, Esq., and James R. Sheldon Jr., Esq., Greater Upstate Law Project, 2002

Retirement

COBRA (Consolidated Omnibus Budget Reconciliation Act)
(866) 4-USA-DOL
www.dol.gov/ebsa/faqs/faq_consumer_cobra.html
Federal law provides certain former employees, retirees, spouses, former spouses, and dependent children the right to temporary continuation of health coverage at group rates.

Tax Deductions

“Timely Tips To Help Limit Your Tax Liability,” MDA/ALS Newsmagazine, January 2008

“ALS Expenses Can Be Tax Deductible,” MDA/ALS Newsmagazine, January 2004

Internal Revenue Service
(800) 829-1040
www.irs.gov
Publication 501: Exemptions, Standard Deduction, and Filing Information
Publication 502: Medical and Dental Expenses
Publication 503: Child and Dependent Care Expenses
Publication 524: Credit for the Elderly or Disabled
Publication 525: Impairment-Related Work Expenses
Publication 529: Miscellaneous Deductions
Publication 596: Earned Income Credit
Publication 907: Tax Highlights for Persons with Disabilities
Publication 910: Guide to Free Tax Services
Publication 3966: Living and Working with Disabilities/Tax Benefits and Credits

Reverse Mortgage

“Reverse Mortgages: Money from Home,” MDA/ALS Newsmagazine, February 2006

AARP
(800) 209-8085
www.aarp.org/money/revmort

National Center for Home Equity Conversion
www.reverse.org

National Reverse Mortgage Lenders Association
(866) 264-4466
www.reversemortgage.org

U.S. Department of Housing and Urban Development
(800) 569-4287
www.hud.gov
Search “reverse mortgage” for selection of information.

Home Modification Loans

Section 8 Made Simple: Using the Housing Choice Voucher Program to Assist People with Disabilities, by Ann O’Hara and Emily Cooper, Technical Assistance Collaborative, 2003

“Affording Accessibility: Home Modifications”
United Spinal Association
(718) 803-3782
www.unitedspinal.org

Life Insurance

American Council of Life Insurers
(202) 624-2000
www.acli.com

Viatical and Life Settlements
viatical-expert.net/toc.htm

Viatical Association of America
(202) 367-1136

Also check with your state’s attorney general, office of consumer protection, insurance commissioner or department of insurance.

Finding Funds — Government Sources

National Council on Aging
BenefitsCheckUp
(202) 479-1200
www.benefitscheckup.org
Links to various federal and state benefit programs.

SSDI

“The Long and Winding Road: Applying for Social Security Benefits Now a Little Easier for People with ALS,” MDA/ALS Newsmagazine, June 2004

“Social Security Changes Rules to Benefit Applicants with ALS,” MDA/ALS Newsmagazine, September 2003

Nolo’s Guide to Social Security Disability: Getting & Keeping Your Benefits, by David A. Morton III, M.D., Nolo Press, 2006

Social Security Disability Insurance (SSDI)
(800) 772-1213
www.socialsecurity.gov or www.ssa.gov

SSI

Supplemental Security Income (SSI)
(800) 772-1213
www.socialsecurity.gov/ssi

Social Security Income for Children

Supplemental Security Income for Children
(800) 772-1213
www.socialsecurity.gov/ssi/text-child-ussi.htm

Medicare
“An Endless Fight for Essential Benefits,” MDA/ALS Newsmagazine, October-November 2005

“Medicare Covers Cough Device,” MDA/ALS Newsmagazine, September 2003

Center for Medicare Advocacy
“Medicare Basics: A Guide for Caregivers”
(202) 293-5760
www.medicareadvocacy.org

Centers for Medicare & Medicaid Services
(800) 633-4227
www.cms.hhs.gov

Medicare
(800) 633-4227
www.medicare.gov
www.mymedicare.gov

Medicare Rights Center
(800) 333-4114
www.medicarerights.org

State Health Insurance Assistance Program
www.shiptalk.org
Offers free one-on-one counseling and assistance to people with Medicare and their families.

Part D

Medicare Part D Appeals: An Advocate’s Manual
www.medicarerights.org

Medicare Rx-Connect
www.maprx.info

Medicaid

“Medicaid Planning: Look Before You Leap” MDA/ALS Newsmagazine, November/December 2007

Centers for Medicare & Medicaid Services
(877) 267-2323
www.cms.hhs.gov

Medicaid
(800) 633-4227
www.cms.hhs.gov
Or contact your state’s Medicaid office or department of health services.

Qualified Income Trust

“A Qualified Income Trust: Keep Your Medicaid Eligibility,” MDA/ALS Newsmagazine, April 2005

National Academy of Elder Law Attorneys
(520) 881-4005
www.naela.org

Cash and Counseling

“New Medicaid Program Gives Recipients Cash, Not Predetermined Services,” MDA/ALS Newsmagazine, December 2003

Cash & Counseling
(617) 552-2809
www.cashandcounseling.org

Other Government Funding Sources

Aging & Disability Resource Center
www.adrc-tae.org

DisabilityInfo.gov
(800) 333-4636
www.disabilityinfo.gov

Indian Health Services
www.ihs.gov/medicalprograms/eldercare
www.olderindians.org

Randy’s Manual
http://55jer.com/randysalsmanual.htm

Alternative Financing Program

“Paying for Assistive Technology: Make Alternative Financing Work for You,” MDA/ALS Newsmagazine, January 2007

“Funding Freedom: Tech Loans Provide Alternate Financing,” Quest, May/June 2006

RESNA (Rehabilitative Engineering and Assistive Technology Society of North America)
Alternative Financing Technical Assistance Project
(703) 524-6686
www.resna.org/AFTAP
National AT Technical Assistance Partnership
www.resna.org/taproject/at/stateprograms.html

Family and Medical Leave Act

U.S. Department of Labor
www.dol.gov/esa/whd/fmla

Veterans Administration

“Report Concludes Military Tie Deserves Further Study,” MDA/ALS Newsmagazine, January 2007

“‘Detox’ Enzyme DNA Links Genes,” MDA/ALS Newsmagazine, August 2006

“Gulf War Report Available Online,” MDA/ALS Newsmagazine, January 2005

GulfLink Medical Information
www.gulflink.osd.mil

National Gulf War Resource Center
(866) 531-7183
www.ngwrc.org

U.S. Department of Defense
www1.va.gov/gulfwar
Gulf War Veterans Helpline (800) 749-8387
Gulf War Veterans Hotline (800) 796-9699

U.S. Department of Veterans Affairs
Registry of military veterans with ALS
(877) 342-5257
www.durham.hsrd.research.va.gov/alsregistry.asp

Office of Geriatrics and Extended Care
(877) 222-8387
www.va.gov/geriatricsshg

Paralyzed Veterans of America
(800) 424-8200
www.pva.org

Independent Living Centers

Independent Living Research Utilization
Directory of Centers
(713) 520-0232
www.ilru.org/html/publications/directory

Independent Living USA
www.ilusa.com

Protection & Advocacy

Center for Patient Partnerships
(608) 265-2627
www.law.wisc.edu/patientadvocacy

National Disability Rights Network
www.napas.org

Help with Health Care & Equipment Costs

Private Medical Insurance

Health Insurance Manual: Options for People with a Chronic Disease or Disability, by Dorothy E. Northrop and Stephen Cooper, Demos Medical Publishing, 2007

Insurance Solutions: Plan Well, Live Better: A Workbook for People with a Chronic Disease or Disability, by Laura D. Cooper, Esq., Demos Medical Publishing, 2002

For information on assistance in acquiring health insurance or prescription meds:

County or State Department of Health and Human Services

Social service agencies, including Association of Jewish Families and Catholic Charities.

National Council on Aging
BenefitsCheckUp
www.benefitscheckup.org
Helps those over 55 find federal, state, and local public and private programs that may pay for some of their medical care and/or prescription costs. A companion site, www.benefitscheckuprx.org, provides information about prescription medical programs.

HealthInsurance.com
(800) 644-3491
www.healthinsurance.com
A resource for consumers and small businesses seeking affordable health insurance.

Medigap & Supplemental Insurance

“It’s All in the Plan — How to Start Long-Term Financial Planning,” MDA/ALS Newsmagazine, October 2007

Long-Term Care Insurance

Long-Term Care: How to Plan & Pay for It, by Joseph L. Matthews, attorney, Nolo, 2004

Offset of long-term care insurance benefits by government assistance to the family. See:
http://willymsrant.blogspot.com/2006/11/social-security-offset.html
www.erisaontheweb.com
www.disabilityinsuranceforums.com

Coverage Denial

“Insurance Claims: Don’t Take ‘No’ for an Answer,” MDA/ALS Newsmagazine, April 2006

“Resources for Fighting Insurance Denials,” MDA/ALS Newsmagazine, April 2006

A Consumer Guide to Handling Disputes with Your Employer or Private Health Plan, by Kaiser Family Foundation and the Center for Consumers Health Choices at Consumers Union, (650) 854-9400, www.kff.org

Center for Patient Partnerships
(608) 265-6267
www.law.wisc.edu/patientadvocacy

“Insurance Ombudsman”
www.money-zine.com

Legal Aid Society
Look in local phone book.

National Patient Advocate Foundation
(202) 347-8009
www.npaf.org

Patient Advocate Foundation
(800) 532-5274
www.patientadvocate.org

Hospice

See Chapter 8, “Resources”.

Prescription Drugs and Supplements

“Shopping for Health: Is There a Pill to Ease the Pain of High Drug Costs?” Quest, September-October 2003

Prescription Benefits — A Consumer’s Guide to Free and Discount Prescription Drugs, by Harry P. Thal, Benefits Publications, 2003

County or State Department of Health and Human Services, and local social service agencies

Health Canada
“Guidance Document on Commercial Importation and Exportation of Drugs in Dosage Form Under the Food and Drugs Act”
www.hc-sc.gc.ca/dhp-mps/compli-conform/gmp-bpf/docs/index_e.html

Medicare Prescription Drug Plan
www.healthdecisions.org/guide

Medicine Program
(800) 921-0072
www.themedicineprogram.com

National Association of Counties
(877) 321-2652
https://naco.advancerx.com
The Web site list counties that have prescription assistance programs.

National Center for Complementary and Alternative Medicine
(888) 644-6226
http://nccam.nih.gov

National Council on Aging
BenefitsCheckUp
www.benefitscheckuprx.org
Provides information about prescription programs for people over 55.

Partnership for Prescription Assistance
(888) 477-2669
www.pparx.org
The partnership is a clearinghouse of more than 475 public and private prescription assistance programs.

Medicare Rx-Connect
www.maprx.info
Information about Medicare Part D.

Volunteers in Health Care
“Are You Looking for Affordable Medications?”
“Comparative Chart of Pharmaceutical Manufacturers Drug Discount Cards”
(800) 222-6885
www.rxassist.org

Low-Cost Sources for Equipment

“Keep On Keepin’ On: Wheelchair Control Upgrades Keep You Moving,” MDA/ALS Newsmagazine, January 2008

“When Buying Used, How to Be a Savvy Shopper,” Quest, November-December 2007

“Paying for Assistive Tech,” MDA/ALS Newsmagazine, January 2007

“Used, But Not Used Up.” Quest, June 1999

Secondhand equipment:
www.craigslist.org
www.disability-resource.com
www.freecycle.org
www.skipslist.org

RESNA — Alternative Financing Technical Assistance Project
(703) 524-6686
www.resna.org/AFTAP/state

State Departments of Vocational Rehabilitation
www.jan.wvu.edu/sbses/vocrehab.htm

USA Tech Guide
www.usatechguide.org

U.S. Department of Veterans Affairs
www.va.gov/health

Vehicles

See these articles for information on extended-term financing, tech loans, rentals and reimbursement programs.

“In the Market for New Wheels? 10 Tips for Acquiring an Adapted Vehicle,” MDA/ALS Newsmagazine, February 2008

“Programs Make Vehicles Affordable,” MDA/ALS Newsmagazine, June-July 2006

”Show Me the Money: Financing Options Can Make Van Buyers Good to Go,” Quest, July-August 2006

National Mobility Equipment Dealers Association
(800) 833-0427
www.nmeda.org

Disabled Dealer Magazine
www.disableddealer.com

RESNA Alternative Financing Technical Assistance Project
(703) 524-6686
www.resna.org/AFTAP/state

Organizing Financial Information & Making Decisions

Medical and Legal Records

National Association of Professional Organizers
(856) 380-6828
www.napo.net

Personal Records Organizer
www.proorganizer.com

Planning — Legal Help

Disability at the Dawn of the 21st Century and the State of the States, ed. by David Braddock, AAMR, 2002

Legal Rights of the Catastrophically Ill and Injured: A Family Guide, by Joseph L. Romano, Esq., Attorney, 1998

American Bar Association
www.findlegalhelp.org
Consumer guide to finding free legal help (by state). Also check with county bar association.

Elder Law Answers
(866) 267-0947
www.elderlawanswers.com

LawHelp
http://lawhelp.org

National Academy of Elder Law Attorneys
(520) 881-4005
www.naela.org

Advance Directives, Living Wills and Power of Attorney

“Five Wishes to Make in Advance,” MDA/ALS Newsmagazine, June 2005

“Stay in Control by Making Advance Directives,” MDA/ALS Newsmagazine, April 2004

“Plan Ahead for Disability with a Power of Attorney,” MDA/ALS Newsmagazine, March 2004

Palliative Care in ALS: From Diagnosis to Bereavement, ed. by David Oliver, Gian Domenico Borasio and Declan Walsh, Oxford University Press, 2006

Who’s Right? Whose Right?, Seeking Answers and Dignity in the Debate over the Right to Die, ed. by Robert C. Horn III, DC Press, 2001

Aging with Dignity
“Five Wishes Living Will” document
(888) 594-74375
www.agingwithdignity.org

Caring Connections
Helpline (800) 658-8898
www.caringinfo.org
Advance care planning, caregiving, hospice and palliative care, pain, grief and loss, and financial issues. Advanced Directives for all states.

Get Palliative Care
(212) 201-2675
www.getpalliativecare.org
Includes a palliative care provider directory, a detailed description of palliative care, direct links to palliative care-related organizations and more.

Also see “Hospice” resources.

DNRs

At the Close of Day: A Person-Centered Guidebook on End-of-Life Care, by Lance Davis, M.D., and Albert Keller, D.Min., Streamline, 2005
www.atthecloseofday.com

Caring Connections
http://careprod.belmonsterexpress.com/stateaddownload

Family Doctor
http://familydoctor.org/003/xml

MDA ALS Caregiver’s Guide