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):

• 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.

• 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 1 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.

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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Resources:
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

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

Retirement
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.

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
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
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

Life insurance
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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