Coping with painful neuropathy and caring for her aging mother had taken over Julie’s life. She would cook, clean, and provide care until pain and fatigue stopped her. As soon as she felt a little better, she would start in again: shopping, doing laundry, and managing the household chores. In the evenings, she worked for four hours telemarketing, “where at least I got to sit down.” She rarely experienced comfort, leisure, or decent blood glucose control. She knew she was drowning but had no idea where the life preservers were kept.
“My friends told me I needed help,” Julie recalls, “but they didn’t come over and give me any.” Then a neighbor told her about Consumers in Action for Personal Assistance (CIAPA), a (now defunct) San Francisco nonprofit agency running a government program to fund housekeeper and home care services. With CIAPA’s assistance, Julie hired a twelve-hour-per-week housekeeper from her neighborhood. This man did the shopping and heavy cleaning for Julie and her mother, enabling Julie to rest, relax, and even get out in the sunshine once in a while, without having to leave her mother alone.
The effects of getting some household help went far beyond having a cleaner kitchen. Julie was able to pay more attention to what she ate instead of grabbing things on the run. She had time to exercise a little, her neuropathy pain eased somewhat, and her glycosylated hemoglobin (HbA1c, an indicator of blood glucose control), came down a full percentage point. “It was a lifesaver,” Julie said. “I felt like I had a chance again.”
Expect the best, prepare for the worst
This article presents information and skills no one ever wants to have to use. Everyone wants to manage his own health and have a long, positive life of independence. If it becomes necessary to seek out help, most people would rather get it from family or friends than from governmental or volunteer agencies. These are healthy, sensible attitudes, but sometimes the road turns. Just a few bad breaks can leave one needing more help than friends or family are able to provide.
Karen Weissmann, LCSW, of the California Pacific Medical Center’s Center for Diabetes Services points out, “Now, nearly everyone is working. American society depends on paid helpers.” As Julie found out, getting that help can be an important part of self-care.
Lawyer David Landay writes in Be Prepared: The Complete Financial, Legal, and Practical Guide for Living with a Life-Challenging Condition, “Preparing for the worst separates an informed positive attitude from simple blind hope…[it] enables you to maintain the kind of environment that will enable you to expect the best.” Learning how to utilize social agencies may actually reduce your need for them and increase your control over your life.
Social agencies can provide money and services such as housing, transportation, food and meal preparation, advocacy, counseling, psychotherapy, in-home physical care, housekeeping, financial management, information, and referrals. Nobody wants to be in a position to require such benefits, and if everyone were wealthy enough, nobody would need them. But in the real world, some people can and do buy all of the above goods and services, while others need help from time to time. Needing help from an agency doesn’t make you a failure in life or in diabetes management, but knowing how to work with agencies can make both a lot easier.
All shapes and sizes
Social agencies can be governmental, religious, or nonprofit. Government agencies include the Social Security Administration and the Centers for Medicare and Medicaid Services. Individual states and municipalities may also have less well-known organizations that can help.
Religion-based groups provide a variety of services, and you don’t have to believe in a group’s religion to qualify for help. For example, Jewish Family and Children’s Services in San Francisco has a clientele that is mostly non-Jewish. Catholic Charities USA also has a large percentage of non-Catholic beneficiaries. These groups usually have professional social workers to help match people with services they need.
Nonprofit groups range from national organizations like Second Harvest (a food bank) to local storefront health programs. These independent groups can be hard to track down and evaluate, but there are ways to get the information you need. Organizations such as the American Diabetes Association (ADA) provide advocacy services and a wide variety of educational materials and programs. The ADA works with organizations such as Lions Clubs to set up camps for children with diabetes. Rick Johnston, former ADA Vice President of Constituent Relations, notes that the ADA also works with churches to provide diabetes information and services. The ADA also provides legal representation to people facing discrimination because of their diabetes.
How do you work with government, religious, and nonprofit agencies? How do you know what you need, what is available, where to find it, and what the rules are? It takes some research. Social worker Karen Weissmann encourages her clients to start with “support self-assessments.”
“When you’re feeling good and have some energy,” she says, “that’s a good time to look around. What are your supports? Where could you use more? Does your pharmacy or grocery deliver? What doesn’t your insurance cover? It’s not a problem list; it’s building up your team.”
If you identify areas where the team needs strengthening, you can narrow your investigation to appropriate resources. Weissmann calls this kind of research “being your own social worker.” For example, the ADA can answer benefits-related questions for all 50 states through their help line (800) DIABETES (342-2383). They also have online information at www.diabetes.org. The Social Security Administration provides a tremendous amount of benefit information through their Web site, www.ssa.gov. You can also call them at (800) 772-1213 (but be prepared for a long wait). At www.benefitscheckup.org, you can fill out an online questionnaire and receive a report on the federal, state, and local benefits and services available to you. This site, run by the National Council on the Aging, seems fairly current, but no national service can totally keep up with the maze of service agencies in large urban areas. (For more resources on social agencies, click here.)
If you’re up for some detective work, the Yellow Pages category “Social and Human Services” could keep you busy for a few weeks. Books like Be Prepared are full of resources, and some books on living with diabetes have resource lists in their appendices. An excellent manual on finding resources is Living a Healthy Life with Chronic Conditions, by Kate Lorig and others. Social workers at medical centers and senior centers often (but not always) know what’s available in their communities.
Many areas have centers that support independent living. These centers often have the most up-to-date and complete information on available resources. Many colleges also have extensive information on resources. The office in charge is usually called something like “Disability Services” or “Disabled Students Office” and will share information with you. Libraries and librarians are often terrific sources of information. The local United Way is always worth a call. People from your church, job, school, support group, or health center can also help. Living a Healthy Life with Chronic Conditions describes a kind of natural-born detective (called “the natural” in the book) who has lived in a community for years and delights in hooking people up with available resources. It was a “natural” who told Julie about the housekeeping service that made such difference for her. So just putting the word out about your wants and needs may eventually get you an answer.
Agencies frequently have complicated eligibility criteria and require extensive documentation of need. This is especially true for agencies that provide monetary grants or loans. The late RoseMarie Johnson, a Direct Service Coordinator for the National Multiple Sclerosis Society, said, “You have to be proactive. Know your rights. Start documenting your condition and how it affects you. Keep a journal and write about your symptoms and how they limit your activity. See your doctors regularly. That way, if you need to apply for disability, you’ll have solid documentation.”
Of course, journal writing has other health and psychological benefits, too. And having a record of your blood glucose levels, medicines, and other treatments can be very useful to the members of your health-care team. It also helps to give your doctor copies of your symptom reports for your medical records.
When dealing with government agencies such as the Social Security Administration, Thad Smith, another multiple sclerosis counselor, says, “You have to remember you’re dealing with overworked bureaucrats. You have to provide the information they need to make a decision — letters from doctors, results of tests. Some people call when they’re in crisis, and they’re not ready. That slows things up and makes it more likely they’ll be turned down. You need to get your support in line before you need the help.”
Information about your economic status often decides whether you qualify for services such as Meals on Wheels, Supplementary Security Income (SSI), or reduced-cost drugs from a pharmaceutical company. So keeping current records about your assets, income, and debts comes in handy when dealing with agencies.
The agency experience
Few people enjoy the process of applying for agency help. Even filling out an application can be difficult. Most people are unhappy about having to apply in the first place. They’ve worked as hard as they can to maintain their health, but then they need to describe their conditions in the most negative terms to qualify for services. Sometimes people feel they are being dishonest; sometimes admitting you have problems can make you justifiably angry. It may help to have a friend or someone from your support group fill out the forms with you. Make photocopies of your application materials for your records.
After you have all your forms and documentation in order, you still have to submit them to the agency. You may be able to apply by phone, mail, or the Internet, but all of those methods involve the possibility of mistakes and deny you the potential benefits of developing a relationship with a real person you can hold accountable. Most counselors say it’s always better to apply in person if possible, and to hand-carry important documents and get a receipt for them. Be prepared for long waits in less-than-comfortable surroundings.
If possible, don’t go alone. It can be helpful to bring along someone who acts as an advocate, bodyguard, secretary, and attack dog when dealing with bureaucrats or medical establishments. A friend, family member, or professional benefits counselor or advocate can fill this role. Sometimes a lawyer may be necessary. Remember, though, that nobody understands your situation as well as you do. You need to be in charge of your own presentation.
Sometimes diabetes complications really do make working difficult and hazardous to one’s health. In this situation, too many of us refuse to apply for government disability payments, especially if we don’t know how long we will have difficulty working. Going on disability can seem like the beginning of the end — being out of the workforce, in danger of becoming isolated with not much to live for. But in reality, going on long-term disability can be a key step in recovering health. “You don’t go on disability to die,” as one man told me after his stroke. “You go on disability to heal.”
Others may feel guilty for taking government disability, as if they were “living off the government,” according to RoseMarie Johnson. She’d tell such people, “As long as you’ve worked, FICA [Federal Insurance Contribution Act] has taken money out of your paycheck. You’ve contributed to this fund; now you need the benefit of it.”
But will you get the benefits you need? According to David Landay’s book Be Prepared, you frequently have to apply more than once. Having all your documentation and your doctor’s support are critical factors, but you may still be turned down. You may want to get an advocate or an attorney who specializes in disability to handle your appeal. They know how to phrase things and how to present yourself for maximum effect, and many only charge if they are successful.
The whole process can cause anxiety and stress. Karen Weissmann says it’s normal to grieve over the loss of one’s working identity. It’s normal to seek professional help to deal with that loss. And it’s also quite common to return to work after getting more support in place. So getting disability can be an important step in maintaining your productivity in the long run.
Social Security disability insurance (SSDI) starts five months after your disability started and confers Medicare coverage 24 months after becoming disabled. It pays a maximum of around $2600 per month (if you were making over $100,000 a year) and considerably less in most cases. That’s not a whole lot of money, so there is often a benefit to having private disability insurance to supplement SSDI. Some employers provide access to disability coverage, a benefit that should be taken advantage of. Outside insurers also sometimes sell policies, even to those with a preexisting illness.
You can also supplement disability insurance with a small amount of earnings. In 2014, SSDI allowed recipients to earn up to $1,070 per month without losing benefits. They also have a variety of programs to help recipients return to work.
For those with extremely low incomes, there is SSI, which pays about $720 a month for an individual. Every state except Arizona, Mississippi, North Dakota, and West Virginia supplements this federal payment, so your maximum payment depends on your state and on your living situation. Couples normally receive more. You may have to give away nearly everything you own (except your house and car) to qualify, but it does come with Medicaid insurance in 39 states, although you may need to apply separately. Eleven states have different criteria for Medicaid and SSI. State-by-state information is available at www.ssa.gov or from your state’s department of insurance.
You can learn more about Medicaid, Medicare, and disability coverage through the American Diabetes Association. If you’re over 60, you can call your local or state office on aging. The Elder Care Locator service, which can be reached at (800) 677-1116, will connect you with your local office. Your local or state office on aging may not serve younger people with health problems but can often tell you whom to call.
Health insurance is almost as critical as income when you have diabetes. So you may find yourself needing urgent health insurance advice. Many state governments and health-care providers provide health insurance advice and even advocacy.
Some people wonder what they would do with their time if they could no longer work. You might want to spend more time managing your health, volunteering, or taking up activities you always wanted to do or used to do but gave up. You might just want to enjoy yourself for a while. With some planning, you may find that getting out of a stressful, overly taxing job can take you a long way toward better health.
Limits to agencies
Realistically, depending on social agencies can take you only so far. Smaller agencies may go out of business, or the quality of their work may change dramatically. (As noted above, for example, CIAPA, the organization that helped Julie pay for a housekeeper, is now defunct.) Large agencies, especially governmental ones, are often bureaucratic with inflexible and annoying rules and regulations and may seem not as caring as they could be or as culturally sensitive to people’s backgrounds or needs. Sometimes the frustrations of dealing with an agency seem to outweigh the benefits. Gigi Gregory, a health educator with the African American Health Initiative, says, “You want to find an agency that meets your needs as far as cost, flexibility, comprehensiveness, and cultural competence. And that may be hard to find.”
Friends, family, neighbors, and members of your congregation may care about you more and provide a more personal touch. Receiving help from them can deepen your relationship and bring you closer together. They can be vital resources. But they frequently don’t have all the resources that agencies have. It’s also good to remember that all agencies are made up of individuals, and these individuals are people with whom one can build a personal relationship. Frequently, they welcome praise or thanks; they want to know their work is appreciated and may well reciprocate by giving better service.
The bottom line is not to be ashamed. Many people, especially recent immigrants, have been raised to count on their families for all needed help. Some people feel guilty about asking for outside assistance. But life works by everyone helping each other. You’ve helped a lot of people in your life and probably still do. It’s OK to take help from others, even agencies, and you might as well learn to make good use of them.