Financial issues for families: Getting help with living expenses

The major costs of a cancer diagnosis and treatment are for things like time in the hospital, clinic visits, medicines, tests and procedures, home health services, and services of doctors and other professionals. Insurance, managed care, or public health care programs pay most of these costs if you’re covered in such a plan.

But families also have many indirect costs or other expenses when a child has cancer, along with their usual bills. These costs can be for things like:

• Travel (gas and parking) to doctor visits, clinics, hospitals, and treatment appointments
• Lodging (a place for the patient and/or family to stay) during treatments away from home
• Meals during travel or clinic visits
• Extra child care costs
• Communication (phone calls, faxes, copies of medical records, etc.) with doctors, friends and relatives
• Special foods and nutritional supplements
• Special equipment or clothing

Also, a child’s treatment plan can cause parents and family members to lose time at work and, in some cases, all or part of their salary. Even more money is lost if one parent has to quit a job or take an extended leave of absence. Of course, costs increase as treatment is extended, if there are treatment complications, or if the cancer comes back. This section offers just a few ideas of where you might be able to get some help dealing with the costs of cancer. See the “To learn more” section for other resources that may be useful to you.

What help is available with short-term housing near the treatment center?

Most major pediatric treatment centers have a Ronald McDonald House nearby. These houses provide low-cost or free housing for patients and their immediate families. These houses are designed to offer a nice break for any family with a seriously ill child, not just those with limited funds.

Although partly funded by McDonald’s Children’s Charities, each House has its own management, sets its own admissions standards, and operates according to its own rules. Check with your health care team’s social worker or nurse to learn more, or contact Ronald McDonald House Charities at 630-623-7048 or www.rmhc.org. Families must be referred by medical staff and/or social workers at the treatment facility.

Many treatment centers also have other short-term housing possibilities or discount arrangements with nearby motels and hotels. The clinic social worker or oncology nurse may have ideas for low-cost housing during hospital or clinic treatment.

Where can families find help with housing needs or mortgage payments?

The extra expenses of a child’s treatment or major loss of family income may make it hard for families to pay their mortgage or rent on time. To keep a good credit rating and stay in your home, talk with your creditor or landlord about your situation and try to make special arrangements. Family, friends, or church members may be able to give you short-term help if they are told about the problem. Talk about your situation with the team social worker who may know of special resources.

Families who need to move out of their homes after a child’s cancer diagnosis should talk with their county department of social services to find out if they can get into government-supported housing programs.

Where can families get help with driving and ground transportation costs?

People who have Medicaid are entitled to help with travel to medical centers and doctors’ offices for treatment. This may take the form of payment or being reimbursed (paid back) for gas, payment of bus fare, or it may mean using a van pool. County departments of social services in each state arrange for help with transportation, but families must ask for it by talking with their Medicaid case worker.

The American Cancer Society program, Road To Recovery, is available in some areas. Trained volunteers drive patients and families to hospitals and clinics for treatment. Contact your local ACS office for more information on what’s available in your area.

• Leukemia & Lymphoma Society, through its Patient Aid program, can help some families with the cost of gas and parking for outpatient treatment. This aid is only for those with blood cancers (leukemia, lymphoma, and myeloma). There’s a limit on the amount of financial help to each patient and family for each year. Check with your team social worker about this program or see contact the Leukemia & Lymphoma Society at 1-800-955-4572 or www.lls.org.

Community and church groups may be sources of help with travel or its costs, too. Also, talk to your team social worker about getting help with hospital or clinic parking fees.

Where can families get help with air travel?

The American Cancer Society Air Miles program is a joint effort between Mercy Medical Airlift (MMA)/National Patient Travel Helpline (NPATH) and the American Cancer Society (ACS). The program is designed to help patients with the costs of air travel for cancer-related reasons. Call us at 1-800-227-2345 to find out if you are eligible for help with air travel. MMA/NPATH helps set up the travel on behalf of ACS, through the ACS call center staff.

Is there any help available for the cost of telephone service?

Help with the cost of basic charges for phone service may be available from Temporary Assistance for Needy Families (TANF; see “To learn more” for contact information). Speak with the eligibility worker in your county department of social services for more information. Families that have problems controlling phone charges may want to think about buying pre-paid calling cards, pre-paid cell phones, or plans with pre-paid minutes. If you call before you go over your limit, sometimes the phone company can help you avoid going over your minutes for the month.

The Universal Service Administrative Company (USAC) is another resource that may help if your income is very low. Visit their Web site at www.usac.org/li/getting-service/benefits.aspx to learn more about phone service help that’s available in your state. Or you can call 1-866-873-4727 and follow the low income/lifeline prompts.

You may also want to call the American Cancer Society to find out about other local sources of help with telephone service.

What help is available for food and food costs?

Some government programs help with food costs. The programs listed below are run by the US Department of Agriculture for different groups of people, and offer food help in different ways. Some families may qualify for more than one type of help. These programs include:

Supplemental Nutrition Assistance Program or SNAP (formerly the Food Stamp Program)

Food Distribution Programs (these programs distribute food directly to needy families):

• Supplemental Food Program (CSFP)
• Emergency Food Assistance Program (TEFAP)

Women, Infants and Children (offers vouchers; some health departments give food or formula):

• Market Nutrition Program
• Farmers’ Market Nutrition Program

School meals (served to children only in schools):

• School Lunch Program
• Fruit & Vegetable Program
• Breakfast Program
• Milk Program
• Nutrition

Summer Food Service Program (meals for kids at community sites when school’s out)

You can learn more about all of these programs by visiting www.whyhunger.org/findfood. To ask about SNAP by phone, call 1-800-221-5689. For all others, call the National Hunger Hotline at 1-866-348-6479 (1-866-3-HUNGRY).

How about Internet access?

You may notice that many groups and organizations now have a lot of information on the Internet, and it may be harder to call or reach a real person. When you do call you might find that they encourage you to find the information you need on their Web site. For many groups, this is a way to save money and they can focus more funds on services for those in need.

Many people, especially families who are having financial troubles, don’t have Internet access at home. This can make it harder for them to find what they need. But if you must check something on the Internet, many public libraries offer use of their computers and Internet access at no cost to you.

Still, you don’t need Internet access to find help. Many organizations also provide toll-free phone numbers so that people without Internet access can learn about and ask for services. Don’t be embarrassed to tell people that you don’t have Internet access and you can’t check their Web site.

And you can always call us, day or night, to find out about getting the help you need.

Where else can families get financial help?

Most families find it hard to turn to others or to agencies and outside groups for financial help. The extra expenses of a child’s cancer may be the first time a family has had problems with money. Families should remember that their problems in such a situation are often short-lived and not unique. In the future, they could be the ones who offer help to others.

Here are some possible sources of help for families who need some extra financial support at this time:

• assistance for low-income families through Supplemental Security Income (SSI) benefits (see below)
• assistance from the Temporary Assistance for Needy Families (TANF) program (see below)
• with treatment-related travel, meals and lodging from public and private programs
• with basic living costs (like rent, mortgage, insurance premiums, utilities, and telephone) from public and private programs
• from church, civic, social, and fraternal groups in the community
• help from special funds in the medical center or community
• from targeted fundraising for an individual patient or family

The team social worker may be able to give you more information about resources that might help your family. There are also organizations and written materials that can provide information on fundraising strategies (see “To learn more”).

What are Supplemental Security Income (SSI) benefits?

Supplemental Security Income (SSI) is designed to supplement the income of eligible families with low incomes and limited assets in which there’s a disabled individual. Children qualify if they meet Social Security’s definition of disability. To get SSI, your income and assets must fall below a certain level.

Children can qualify if they meet Social Security’s definition of disability. Income criteria are checked by the local Social Security Administration office. Disability evaluation specialists at the state Social Security office decide if the child is disabled. Not every child with a cancer diagnosis is considered disabled.

In many states, Medicaid is given to children getting SSI, but you may need to apply for it separately. You can get more information about SSI from the team social worker or from the nearest Social Security Administration office listed in the US Government section of your local phone book. See the “To learn more” section for more information.

Temporary Assistance for Needy Families (TANF)

Temporary Assistance for Needy Families (TANF) is a grant program that provides monthly cash payments to help pay for food, clothing, housing, utilities, transportation, phone, medical supplies, and other basic needs not paid for by Medicaid. TANF also helps states provide training and jobs for the people in their welfare programs. A social worker can tell you about your state’s plan or see the “To learn more” section for TANF contact information.