Topics include:

Private medical insurance Medigap and supplemental insurance Long-term care insurance Coverage denial

Hospice Prescription drugs and supplements Low-cost sources for equipment Vehicles

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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.

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.

Resources:
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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Medigap and 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.

Resources:
It’s All in the Plan — How to start long-term financial planning, MDA/ALS Newsmagazine, October 2007

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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.

Resources:
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:
Disabilityinsuranceforums.com
ERISA on the Web. ERISA and disability benefits law blog.

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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:

• 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.

• 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.

• 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.

• 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.

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

• 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.

Resources:
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

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.

Resources:
See Chapter 8, Long-Term Care: Resources.
Not Gloom and Doom: Demystifying Hospice, MDA/ALS Newsmagazine, January-February 2010

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Prescription drugs and supplements

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

Resources:
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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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's Equipment Program has many donated pieces to lend.

• MDA helps cover maintenance and repairs of a wheelchair, leg braces or communication device.

• 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, websites and newsletters of rehabilitation hospitals, independent living centers, state Rehabilitation Departments and other local disability organizations. Try 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 websites, including eBay, list and picture secondhand canes, cushions, wheelchairs, vehicles, walkers and other devices.

• See Vehicles, 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 Chapter 7 — Finding Funds: Government Sources.

Resources:
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

Secondhand equipment:
craigslist.org
Disability-resource.com
Freecycle.org

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Vehicles

Resources:
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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