On DisabilityNext »
Being on disability is different for everyone. Whatever your situation, following is an overview of the areas of life usually affected by being on disability. Clicking on the links will provide practical information and tips.
Physical and Medical
- You do not have to experience pain.
- If you have pain, speak with your doctor about alternatives for getting rid of it, or at least decreasing how much it hurts. There are even doctors who specialize in treating pain and reducing symptoms. They are known as Palliative Care Specialists.
- You can receive palliative care at the same time as you work to cure your condition.
- For information about pain and how to deal with it, see: Pain 101
- Side effects from your health condition, drugs and/or treatments can be controlled or possibly even eliminated. For example, there are medications and natural remedies that can reduce or eliminate diarrhea or nausea.
- Stick to your drug and other medical regimens (this is known as "adherence"). It is easy to feel better and think you can skip drug doses and/or treatments either because you forget about them or think you don't need them any more. Compliance aides are available. For information, see: Drug Compliance: Why And How To Take Drugs As Prescribed. Also see: Drugs 101: An Overview
- Consider complementary treatments in addition to medical treatments - not instead of what your doctor has to offer. Discuss any complementary treatments you are considering with your doctor before starting them. For information about complementary and alternative treatments, click here.
- Consider joining a clinical trial if existing treatments are not adequate or if you want access to the latest drugs being tested. There may also be treatments used in other countries that are of interest to you. For information about clinical trials, click here. To find a clinical trial, click here.
- Keep track of your symptoms so you can report accurately at each doctor visit. We provide an easy-to-complete and read symptoms diary. With the click of a button, it turns the information in to an easy-to-read graph saving the doctor more time to spend on other subjects.
- Remind your doctor you are on disability and that his or her records may be checked.(For information about doctors, including choosing, overcoming bumps in the road, switching, second opinions etc. click here)
- If you haven't already, learn how to maximize your limited time with your doctor.
- Expect a variety of emotions, particularly when you transition from work. Identifying various emotions leads to tips for coping with them.
- Work on doing your best to keep a good mental attitude. People do best who expect the best. Don't expect to be positive all the time or beat yourself up if you have days when you cannot do anything. Look for fulfillment each day. If fear threatens to take over, use it as a trigger to take a moment and center yourself to the here and now. For tricks to help deal with negative thoughts, click here.
Family and Friends
- Shifting from work to not working affects relationships with family and friends. A successful shift requires conscious awareness. It also requires being open with each other about your abilities, your needs and your emotions.
- If you have underage children, tell them what is going on. They will know something is up and will otherwise think they are to blame. To learn more, click here.
Care (at home/in a nursing home)
- If you need it, home health care may be paid for by your insurance.
- For information, about home health care, click here.
- If you don't have insurance, find out if you can take steps to qualify for Medicaid which pays for such care. Shifting assets or income to qualify for Medicaid requires prior planning if you need to live in a nursing home. However, if care does not involve nursing home care, you can generally qualify right away. To learn about Medicaid, click here. To learn how to become eligible for Medicaid, click here.
- If you may need a nursing home, start researching homes in your area so a last minute rushed decision doesn't have to be made. To learn how, click here.
- Do what you can to keep insurance in force. In particular, if you have them, make sure health insurance, life insurance and disability insurance premiums are paid. Make arrangements with a reliable family member or friend for payments to be made if you become physically or mentally unable to make them yourself.
- Health Insurance
- If you need help paying for premiums or co-pays or co-insurance, click here.
- If you have not done so before, learn how to maximize use of your health insurance.
- Consider looking for better health insurance coverage and/or lower premiums. See www.healthcare.gov
- If you do not have health insurance, do what you can to get it. To learn how, click here.
- Life Insurance
- Check to see if your policy has a waiver of premium in the event of disability. If so, do not stop paying premiums until you receive a letter from the insurance company that a waiver is in effect. To learn how to apply for a waiver of premium, click here.
- You can still buy life insurance despite a health history.
- Health Insurance
- Take a few minutes to do some basic financial planning to get an idea of what you can expect - and see what areas need tending to. To learn how, click here. To learn how to create and live with a budget, click here.
- Consider accepting credit card offers that come in the mail. You may need the credit to pay medical or other bills. Getting additional credit is not the same as using it. To learn about credit, click here.
- Check all alternatives to maximize income replacement. For information, click here.
- If you haven't already, revise investment strategy to incorporate your health condition. To learn how, click here.
- If you are in debt, it is important to figure out which bills to pay first. Perhaps some of the bills can be negotiated. If you, a family member or friend are not the people to handle such a negotiation, there are free credit counseling services available. The key is to find a good one (and not a scam). For information, see:
- Consider tips for spending less. For example, watch for discounts. There are many discounts and free admissions for people with a “disability.” This is particularly true for entertainment and transportation, including subways and buses.Explore these programs with your social worker or your local disease specific organization. It couldn’t hurt to check with nonprofit organizations that represent other conditions to learn if they know of any discount or free admissions for which you may qualify.
- If you are experiencing a financial crunch or crisis, see our information about how to deal with it. Please click here. If necessary, bankruptcy is a credible alternative.
- Think about working - at least part time if you are able.
- You may be able to work from home. To learn about working from home, click here.
- Before you start any work, check to find out the effect on any disability income you may be receiving or are entitled to receive.
- Stay in touch with your former employer. Keep co-workers and your supervisor up-to-date about how you are feeling. One reason to keep in touch is that if your health insurance is through COBRA or otherwise through your former employer, if the employer health plan changes, your plan will change as well.)
- If you are considering returning to work, part time or full time:
- it is better to learn the appropriate steps to take rather than just rush right back. For instance, consider volunteering first to learn about your limits and to update your skills. See Work: Return To
- Don't just automatically go back to your former employer. Think through what you want to do to balance fulfillment and Real Earnings (what you really earn per hour vs. what you may think). Think about available benefits. To learn more, see; Seeking Employment. Also see:
- If you are receiving disability income,
- It is wise to prepare for a disability review, including questions about whether you continue to be disabled. Keep track of how disease, side effects and/or drugs affect your ability to work and daily life.
- Learn what to do if disability income payments stop or you are informed that they may stop. Click here.
- Consider all sources of replacing income.
- Check with your employer to make sure you are receiving all the income to which you may be entitled. For instance, check sick leave and holiday plans. Of course check for short and long term income replacement plans.
- If needed, perhaps you can borrow money from your employer or co-workers could do a fund raiser.
- Government programs:
- If you haven't, check to see if you qualify for Social Security Disability Insurance (SSDI) and/or Supplemental Security Income (SSI). There may also be state programs to consider.
- Check to see if you qualify for unemployment insurance. One of the requirements generally needed to qualify is that you are able to work, but it is still worth checking.
- Check to see if you qualify for such programs as Temporary Aid To Needy Families (TANF) or Food Stamps.
- Your own assets: You may be able to obtain cash from one of your existing assets without selling the asset. We call this "New Uses of Assets." For more information, click here.
- Friends and family: If necessary, borrow from family and friends. We tell you how.
- Crowd funding: Consider raising money through the internet.
- If you are up to it, consider:
- If you haven't yet, consider executing a Living Will and a Health Care Power Of Attorney to assure that your wishes are followed in case a medical decision has to be made if you become unable to speak for yourself.
- If you execute a DNR order, inform the people around you not to call 911 if your lungs or heart stop working.
- If you are physically up to it, and can afford it, traveling is a great way to enjoy yourself while on disability. There are techniques to use to make travel safe and enjoyable.
- Keep laughter in your life. For tips about how, click here.
- Experience indicates that spirituality helps. It not too late to develop spirituality. Click here.
- Seek fulfillment each day.
- Consider volunteering.
- Working for a charity without pay is not overriding evidence that you are no longer "disabled." A volunteer does not have the same obligation to show up every day and is not subject to the stress and demands of doing a paying job.
- If your volunteer work begins to be full-time over an extended period of time, especially if it involves a lot of stressful travel, check with your lawyer to determine how it could impact your benefits. Perhaps you need to make some minor changes in your volunteering that would bring you safely within the definition of "disabled."
- To learn about volunteering, click here.
- Especially if your disability is likely to be long term, remind caregivers to take care of themselves. They are no good to you if they are not emotionally and physically able. (For tips about caregivers, click here.)
If your illness progresses to end of life, read End of Life.