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.”