Chapter 38

And …

Many people allow illness to disfigure their lives more than it should.… There is always a margin within which life can be lived with meaning and even with a certain measure of joy.

—Norman Cousins, Anatomy of an Illness

 

This chapter addresses important matters that do not readily fit into other chapters.

Section 1. Medical Identification

If you have an allergy that may be life threatening or if you just want to convey information about your condition in the event of an emergency that renders you unable to communicate, there are several alternatives to consider:

• Medic Alert Foundation, 2323 Colorado Avenue, Turlock, CA 95380 (800-432-5378), provides wearable necklaces and bracelets with tags that are engraved with your most critical medical conditions and personal ID number, along with a phone number for their emergency response center. The tag alerts an emergency team to call to access your medical record. Medic Alert can even provide the caller with the name and phone number of a family member to contact. Cost is $35 plus $15 a year.

• Save-a-Life, 382 Boston Turnpike, Suite 202, Shrewsbury, MA (800-755-6648 or 508-845-1396), provides business-size medical cards that include a microfilmed medical history. The card is viewed by the physician through a machine or low-powered microscope. In case facilities to read the information aren’t available, Save-a-Life will fax the attending physician’s report. The cost is $21 for two years.

Section 2. Lying

Some people who have been diagnosed with a life-challenging condition adopt the attitude “I can cheat or lie as I please. I won’t be here when they catch it.” As a practical matter, I strongly caution against this attitude. The odds are you will end up spending a great deal of money and precious Life Units fixing things. Even worse, in some situations such as applications for health or life insurance, if you complete the application dishonestly, you may find that the insurance company contests the existence of the policy just when you need it.

As Jacques Chambers, a nationally known expert on benefits for people with life-challenging conditions says, “I neither condone nor recommend deception to my clients. My job is to reduce stress, and if someone lies on an application, I don’t think their stress has been reduced very much.”

Section 3. Student Loans

Student loans are forgiven when you leave work and go on disability.

Caution. If you change the terms of the loan, such as the amount of your periodic payments, it is considered a new loan and not forgiven if you were disabled at the time the change was made.

Section 4. Pets

Pets can be good for your emotional/physical health. However, they can pose a risk of infection to people with a lowered immune system, whether the lowered level of immunity is temporary such as during chemotherapy or more permanent as with HIV disease.

Anyone with a compromised immune system should

• avoid contact with animals that have diarrhea.

• avoid contact with pets’ feces.

• be sure that litter boxes are emptied (not just sifted) daily.

• wash hands with soap and water after handling pets, especially after cleaning their litter boxes or living areas and before eating.

• have pet birds checked by a veterinarian for psittacosis.

• have any sick pet checked promptly by a veterinarian. Neither sick pets nor their excretions should be handled by a person with a reduced immune system.

• avoid contact with reptiles such as snakes, lizards, and turtles.

If you need help with pets, and friends or family can’t take over the necessary chores, there are organizations around the country that assist with dog walking, changing litter, providing foster care for the animal in case the owner goes into the hospital, and even planning for the animal’s welfare in case the owner dies. Since the groups are local, their services and client bases vary. If a group exists in your area, it can be located through your local Humane Society, or perhaps you can find assistance through your GuardianOrg or support group.

Section 5. Transportation to and from Physicians or Treatment Centers

If transportation is a problem, there are services that provide transportation to and from your medical appointments. Contact your local GuardianOrg or social worker. You can also call the Eldercare Locator at 800-677-6116. Perhaps your physician and/or the facility in which you will be treated also provide transportation.

Section 6. Parking Spots for the Disabled

Parking spots are not just for people with a visible handicap or who have lost the ability to walk. They are also for people who may not be able to walk long distances. In most areas, you do not need to be a driver or a registered owner of a vehicle to get a permit.

Contact your state Department of Motor Vehicles to determine

• eligibility requirements.

• what you need to verify eligibility.

• how often you have to prove eligibility or otherwise renew the permit.

• the cost of the permit.

Tip. If you do not appear to be physically handicapped, prepare an answer in case an obnoxious person questions why you park in a reserved parking place. Your response, if any, should be whatever is comfortable for you.

Section 7. Other Legal Rights

7.1 Public Accommodations

Under the ADA, protection against discrimination in public accommodations extends to “the goods, services, facilities, privileges, advantages, and accommodations of any place of public accommodation.” The term public accommodation is broadly defined to include

• professional offices of health care providers, hospitals, or other service establishments.

• places of lodging.

• restaurants, bars, or other establishments serving food or drink.

• places of exhibition or entertainment such as movie houses and theaters.

• any place of public gathering.

• stores.

• museums or other places of public display or collection.

• places or recreation.

• gymnasiums, health spas, golf courses, or other places of exercise.

Private clubs and places run by religious organizations are not considered places of public accommodation.

Businesses must make reasonable modifications to their policies, practices, or procedures if it would rectify discrimination. For example, if a hotel does not allow pets, it would be reasonable to request a Seeing Eye dog exception for a person who has lost her vision.

Questions or complaints should be directed to the Office on the Americans with Disabilities Act, Civil Rights Division, U.S. Department of Justice, P.O. Box 66118, Washington, DC 20035-6118 (202-514-0301).

7.2 Communications

The ADA requires telephone companies that offer services to the general public to provide telephone relay services for people with hearing or speech impairments. Similar requirements are imposed by the Federal Communications Commission (the FCC). If you have a problem, contact the Federal Communications Commission, 1919 M Street NW, Washington, DC 20554 (202-632-7260).

7.3 Federally Assisted Programs and Activities

Another federal law, the Rehabilitation Act of 1973, affords individuals with disabilities protection against discrimination in all federally assisted programs and activities. This law has been interpreted broadly so that, for example, an entire university or corporation is barred from engaging in discriminatory practices if any of its departments or units receive federal funds. The act also protects against employment discrimination by federal agencies or federal contractors.

7.4 New Construction and Alterations

New construction and alterations of buildings open to the public are supposed to permit access to people who are disabled. If you have a question about whether a building complies, contact the Architectural and Transportation Barriers Compliance Board, 1331 F Street NW, Suite 1000, Washington, DC 20004 (800-USA-ABLE).

The Job Accommodation Network (JAN) provides free “public access” information to businesses and services that must comply with the accessibility requirements of the ADA. Call 800-232-9675.

7.5 Transportation

Public. Individuals with disabilities must be given special public transportation services comparable to those provided to the general public. Hours and days of service, service areas, response time, and fares are also covered. Contact the Department of Transportation, 400 Seventh Street SW, Washington, DC 20590 (202-366-9305).

Private. The provisions of the ADA apply to businesses whose primary business is transporting people. The ADA Private Transportation Hotline at 800-605-6605 (9 A.M. to 3 P.M. central time, M–F) answers questions, makes referrals to experts, and has free publications concerning the ADA regulations on private transportation providers. Ask for a free copy of “The ADA Private Transportation Handbook.”