Finding Funds: Government Sources 
Finding Funds: Private Sources 
Help with Health Care and Equipment Costs 
Organizing Financial Information and Making Decisions 
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:
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 (see below) 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.
There are so many benefits, both financial and assistance-oriented, to which individuals are entitled. These include community-based programs, state or federal assistance programs, as well as retirement and insurance programs.
One of the issues with having so many benefits available is that it’s difficult to track them and find out which ones are appropriate for the situation. This is where a benefits counselor can help. The term “benefits counselor” can be applied to either a paid staff person for an agency or a trained volunteer. In simple terms, a benefits counselor is someone who reviews existing information about your financial situation and makes suggestions about benefits for which someone may be eligible, or managing existing benefits.
Generally, benefits counselors work with individuals age 60 and older. If someone has a disability, they also are entitled to receive benefits counseling information. Many work with or volunteer for agencies like the Area Agencies on Aging (AAA) . With the AAA, there are stringent criteria for benefits counselors and certification levels are available. The various certification levels designate the types of cases for which someone can receive assistance.
Individuals receive free assistance from a benefits counselor. It is not attorney representation, however. Individuals who need legal representation still may receive a benefits counselor; however, the counselor will not be able to represent them in court.
How can they help?
It can be confusing to figure out eligibility requirements, how to apply, what types of documentation are needed and many other issues that arise when looking at benefit programs. Throw in supplemental insurance policies, and you have a recipe for confusion.
Trained benefits counselors can sort through the “confusion” to help develop a cohesive benefits plan. The benefits counselor serves a valuable role in discovering possible avenues for benefits that give families alternatives that may not have been known before.
The types of information that benefits counselors can examine include (but may not be limited to): insurance benefits; Social Security benefits; Social Security Disability benefits; Medicare (including the new prescription benefit section, Part D); prescription assistance programs (for individuals not eligible for Medicare); income tax benefits and credits; retirement benefits; veterans benefits; community- based benefits; state program benefits, including home care alternatives; advocacy with agencies, if needed; and referrals to community-based organizations or government agencies.
Make sure you have documentation available when you speak to a benefits counselor. Things to consider taking with you include: recent statements from your insurance company; recent bank account statements; medications you are currently taking (for Medicare Rx or other prescription benefit programs); retirement statements concerning benefits you are already receiving; Social Security statements and card (if available); disability benefits currently receiving; and any other state, federal or community program where you are currently enrolled.
What if you’ve applied for services and have been denied, yet you still feel that you qualify? A benefits counselor can examine your case individually and try to advocate on your behalf. Advocacy does not guarantee services, however.
Advocates may be able to sort through the requirements and find out if there has been miscommunication, missing documentation, or other communication barriers that prevent you from receiving specific benefits. If you still are denied benefits, at least you will feel like you have received the total attention of the “system.”
Where do they work?
You can search for a certified benefits counselor through local Area Agencies on Aging (AAAs). Other organizations include your local human service offices, county welfare offices, and community-based organizations that serve the elderly and/or disabled.
Another method to find a benefits counselor is by calling an Information and Referral helpline. In more than 46 percent of the United States, you can dial 2-1-1 and reach a trained professional who can identify organizations in your community where benefits counselors work. If your area does not have access to 2-1-1, usually there is one point of entry into the human service system. Some places call it a helpline, while others call it information and referral. To find out if your community has access to 2-1-1, you can look online at 211.org . The nationwide status map also can give insight into where to call if your area is not served by 2-1-1.
Learning about available benefits can be challenging. It’s important to have a trained professional review your situation and point out avenues you may not have considered investigating.
(Excerpted with permission from Today’s Caregiver .)
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Social Security Disability Insurance (SSDI) 
Supplemental Security Income (SSI) 
Social Security income for children 
Medigap insurance 
Other government funding 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 at the end of this section, 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 caregiver.org and click on “Family Care Navigator.”
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.
National Council on Aging BenefitsCheckUp , (202) 479-1200. Links to various federal and state benefit programs.
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 (see right) as soon as they get SSDI.
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
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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.
Supplemental Security Income (SSI) , (800) 772-1213
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.
Supplemental Security Income for Children , (800) 772-1213
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"You can benefit from Medicare for hospice services, and payment for rental equipment, medications for pain and symptom control, visits by a registered nurse, home health aide, social worker, volunteers, etc., indefinitely as long as the person continues to decline over time. Not only does it make good sense financially, but also in terms of support for you and your family.”
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:
Certain deductibles and coinsurance amounts apply. It’s possible to buy into Part A if you’re over 65 but never paid Medicare taxes.
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 monthly premium. Part B helps pay for:
Parts A and B both pay toward home health care under certain circumstances. For details, go to 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 (see Help with health care and equipment costs ). 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 (see Help with health care and equipment costs ) 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 (see Help with health care and equipment costs ).
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.
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.
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
Centers for Medicare & Medicaid Services , (800) 633-4227
Medicare , (800) 633-4227
Medicare Rights Center , (800) 333-4114
State Health Insurance Assistance Program  (Offers free one-on-one counseling and assistance to people with Medicare and their families.)
Medicare Part D Appeals: An Advocate’s Manual 
Medicare Rx-Connect 
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This term refers to private insurance policies that can supplement the coverage provided by Medicare.
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 medicaid.gov and select 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, many 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.
Medicaid Planning: Look Before You Leap , MDA/ALS Newsmagazine, November-December 2007
Centers for Medicare & Medicaid Services , (877) 267-2323
Medicaid , (800) 633-4227 (Or contact your state’s Medicaid office or department of health services.
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.
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.
A Qualified Income Trust: Keep Your Medicaid Eligibility , MDA/ALS Newsmagazine, April 2005
National Academy of Elder Law Attorneys , (520) 881-4005
"Every two years I had to fight our insurance all over again. I did my homework, research and wrote the most factual letters with the laws for disabled people, the most compelling letters I could, and sent them to everyone that had anything to do with my husband’s case. Our doctor called our insurance company and wrote letters and threatened to take it to the newspapers.
Every year, like a Cecil B. DeMille drama, the insurance would take it to the 12th hour and then inform us, ‘OK, for another two years your husband will get 16 hours of in-home RN or LVN vent-knowledgeable care.’
We were so grateful to the wonderful nurses that came into our lives for seven years. I am most grateful to the two liaisons that fought for [my husband] and also grateful to our doctor."
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.
New Medicaid Program Gives Recipients Cash, Not Predetermined Services , MDA/ALS Newsmagazine, December 2003
Cash & Counseling , (617) 552-2809
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.
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.
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
National AT Technical Assistance Partnership 
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.
U.S. Department of Labor 
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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 suspected 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.
Report Concludes Military Tie Deserves Further Study , MDA/ALS Newsmagazine, January 2007
‘Detox’ Enzyme DNA Links Genes, Environment, ALS , MDA/ALS Newsmagazine, August 2006
Gulf War Report Available Online , MDA/ALS Newsmagazine, January 2005
GulfLink Medical Information 
National Gulf War Resource Center , (866) 531-7183
U.S. Department of Defense 
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
Office of Geriatrics and Extended Care , (877) 222-8387
Paralyzed Veterans of America , (800) 424-8200
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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.
Independent Living Research Utilization Directory of Centers , (713) 520-0232
Independent Living USA 
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 website and click on “Get Help in Your State.”
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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 support needs 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):
“I pulled all the equity out of my house, we have practically depleted his 401k, have $80,000 in credit card debt and he is still alive and thriving. Believe me, I would do it all again. I am running out of resources. I thought of selling the house but it is worth about what I owe.”
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.
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.
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!
|“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.”|
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.
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.
Below are 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.
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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 2010-2012, by Gail Ann Schlachter and R. David Weber, Reference Service Press , 2010
Plan While You Can: Legal Solutions for Facing Disability, by Roger W. Anderson, AuthorHouse , 2003
The Cost of Caring: Money Skills for Caregivers, by Anne M. Johnson and Ruth Rejnis, Wiley , 1998
Information and Referral, 211.org 
Modest Needs , (212) 463-7042. Offers self-sufficiency, back to work, and independent living/quality of life grants
Ride for Life , respite grants and legal grants for people with ALS
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
COBRA (Consolidated Omnibus Budget Reconciliation Act) , (866) 4-USA-DOL. Federal law provides certain former employees, retirees, spouses, former spouses and dependent children the right to temporary continuation of health coverage at group rates.
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
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 Mortgages: Money from Home , MDA/ALS Newsmagazine, February 2006
AARP , (800) 209-8085
National Center for Home Equity Conversion , (800) 976-6211
National Reverse Mortgage Lenders Association , (866) 264-4466
U.S. Department of Housing and Urban Development , (800) 569-4287. Search “reverse mortgage” for selection of information.
Home modification loans
InfoQuest Spring 2011: Assistive Tech and Home Modification Funding , Quest, April-June 2011
Section 8 Made Simple, by Ann O’Hara and Emily Cooper, Technical Assistance Collaborative , 2003
American Council of Life Insurers , (202) 624-2000
Viatical and Life Settlements Consumer Info 
Viatical and Life Settlement Association of America, (202) 367-1136
Also check with your state’s attorney general, office of consumer protection, insurance commissioner or department of insurance.
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Private medical insurance 
Medigap and supplemental insurance 
Long-term care insurance 
Coverage denial 
Prescription drugs and supplements 
Low-cost sources for equipment 
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.
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.
Health Insurance Resources: A Guide for People with Chronic Disease and Disability, 2nd ed., by Dorothy Northrop, Stephen Cooper and Kimberly Calder, Demos Medical Publishing , 2006
Insurance Solutions: Plan Well, Live Better, by Laura 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 and social service agencies, including Association of Jewish Families and Catholic Charities.
National Council on Aging, 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.
HealthInsurance.com , (800) 644-3491. A resource for consumers and small businesses seeking affordable health insurance.
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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:
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.
It’s All in the Plan — How to start long-term financial planning , MDA/ALS Newsmagazine, October 2007
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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.
Long-Term Care: How to Plan & Pay for It, by Joseph L. Matthews, attorney, Nolo , 2004
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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.
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.
Insurance Claims: Don’t Take ‘No’ for an Answer , 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, 2005
Center for Patient Partnerships , (608) 265-6267
Insurance Ombudsman, money-zine.com 
Legal Aid Society. Look in local phone book.
National Patient Advocate Foundation , (202) 347-8009
Patient Advocate Foundation , (800) 532-5274
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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.
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.
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Several sources of help exist for purchasing prescribed drugs and nutritional supplements. See “Resources,” below for details on:
Playing the Money Game , Quest, May-June 2008
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
Guidance Document on Commercial Importation and Exportation of Drugs in Dosage Form Under the Food and Drugs Act , Health Canada, 2010
Medicare Prescription Drug Coverage 
Medicine Program , patient advocacy organization
National Association of Counties , (877) 321-2652. Website lists counties that have prescription assistance programs.
National Center for Complementary and Alternative Medicine , (888) 644-6226
National Council on Aging, BenefitsCheckUp . Provides information about prescription programs for people over 55.
Partnership for Prescription Assistance , (888) 477-2669. Clearinghouse of more than 475 public and private prescription assistance programs.
Medicare Rx-Connect . Information about Medicare Part D.
RXAssist . Directory of patient assistance programs
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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:
Use It and Pass It Along , Quest January-February 2008
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
RESNA — Alternative Financing Technical Assistance Project , (703) 524-6686
State Departments of Vocational Rehabilitation 
USA Tech Guide . Guide to wheelchairs, mobility scooters and assistive technology choices.
U.S. Department of Veterans Affairs 
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See these articles for information on extended-term financing, tech loans, rentals and reimbursement programs.
Accessible Vehicles Q&A , Quest, July-September 2009
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
Disabled Dealer Magazine 
National Mobility Equipment Dealers Association  (800) 833-0427
RESNA — Alternative Financing Technical Assistance Project , (703) 524-6686
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|Medical and legal records 
Guardianship of children 
Power of attorney 
Advance directives and living wills 
Wills and estate planning 
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 ).
|"I organized my papers with a small group of trusted friends. It sounds like a lot of stuff to put together but we did it, had our little meeting to talk things out. Everyone felt good after that meeting that they know exactly what to do whenever something might happen. I feel more at ease, too, that I know everything has been made easy for those I leave to deal with things when I can't do them for myself."|
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.
Disability at the Dawn of the 21st Century and the State of the States , ed. by David Braddock, AAMR , 2002
American Bar Association . Consumer guide to finding free legal help (by state). Also check with county bar association.
Elder Law Answers , (866) 267-0947
LawHelp . List of free legal aid programs by state for low - and mid-income individuals.
National Academy of Elder Law Attorneys , (520) 881-4005
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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.
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.
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"It's important to have an attorney who specializes in Medicare, Medicaid and your state programs review your decisions. They can help you avoid pitfalls. It's important to have second and third choices for power of attorney, executors, and guardians for children in case your first choice can't do the job when the time comes. Your main caregiver may be too burned out after your passing to take on being executor, for example."
"I can't stress too much how helpful it was that we had our discussions before a crisis and that we listened to one another rather than what a bunch of preprinted attorney forms indicated was best."
"We made a 4x6 card for [my husband] that included his name, date of birth and photo. We wrote wife's, best friend's and doctor's phone numbers. Disability: ALS 'Lou Gehrig's Disease.' In red we wrote: 'No chemical or mechanical resuscitation. No intubation or ventilation, nasal canula, O2 only. Heimlich or cricothyrotomy only for temporary obstruction.' We then had it signed by his physician, notarized and laminated. There were copies in the van, wheelchair, friend's wallet, purse, etc. The EMS system was also made aware."
"[My husband] had a living will, giving me medical power of attorney when he could no longer make decisions. He did stipulate in writing how far he wished his care to go, which was notarized and witnessed by our attorney. This also protected me from prying family members who didn't like his course of treatment. His wishes were clear, concise and followed to the letter."
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.
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
"Five Wishes Living Will" document, Aging with Dignity , (888) 594-7437
Caring Connections . Helpline (800) 658-8898. Advance care planning, caregiving, hospice and palliative care, pain, grief and loss, and financial issues. Advanced Directives for all states.
Get Palliative Care . Includes a palliative care provider directory, a detailed description of palliative care, direct links to palliative care-related organizations and more.
Also see Chapter 8: Hospice .
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:
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.
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
Caring Connections , Helpline (800) 658-8898
Family Doctor.org , Advance directives and DNR orders. Information site produced by the American Academy of Family Physicians.
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by Lawrence H. Phillips II, M.D.
Recognizing that respiratory failure and/or inability to take in adequate nutrition is frequently the cause of death in cases of ALS, I hereby wish to state in advance my preference regarding invasive mechanical ventilation and feeding gastrostomy tube placement. It is my desire that these preferences guide the decision making of my family and my physician(s) in the event that I am unable to participate in a meaningful way in discussions regarding my health care. I understand that none of the choices made here will be put into effect without my
agreement as long as I retain the capacity for decision making and the ability to communicate, in some form, those decisions.
(Choose one of the following three main options):
If invasive mechanical ventilation is used and it becomes evident that long-term mechanical ventilation is required, then (choose none, one, or more of the following):
(Choose one of the following two main options):
In all cases where I choose not to start or to discontinue mechanical ventilation or nutrition via gastrostomy tube, I instruct my physician to provide me with adequate medication to relieve anxiety and discomfort that may occur during the final course of my disease.
(Used with permission of the Journal of Clinical Neuromuscular Disease . 3(3):116-121, March 2002)