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.”