THURSDAY NIGHT IS HEALTH CARE CHANGE NIGHT, a weekly Daily Kos Health Care Series.
I’ve lived with illness and without health insurance for about 18 years. This diary focuses on medical savings and frugal living. If you’re uninsured and seriously ill, you’re probably going to face serious financial issues, too.
The topics are important whether you’re a patient or a caregiver. They’ll help even if you have insurance; co-pays and uncovered items kill budgets. And, you never know when you might lose your coverage.
It took years to find this information. Unfortunately, I learned much of it too late to help my family. Since it‘s hard to do when you’re stressed, I hope you can learn from my experiences now. I invite you to share your stories and suggestions in the comments.
In Part 1, the subjects included planning for the unthinkable, the Hill-Burton Act, and ways to avoid paying full price for prescriptions, OTC drugs, and medical devices. In Part 2, the topics include finding and asking for help, dealing with long-term illness and debt, as well as some final thoughts and a resource list with links.
Topic #7: Finding help
Contact human resources where you are employed. If your injury or illness is work-related, inform your supervisor and complete all the required forms to apply for worker’s compensation. If not work-related, see if you qualify for short-term disability payments. Also, verify the number of sick days or vacation days you have available.
Consider all types of relief. If you or your spouse can no longer work, your income has just dropped significantly. You may be surprised at the benefits to which you are entitled. I was because I had never used any of these services before. Some of the income limits for programs are quite high. It doesn’t hurt to inquire.
Apply for Medicaid, food stamps, and TANF ("welfare") immediately. You may find that you apply to ten programs and are only eligible for one – or none. However, if you qualify for any one of these, it might "trigger" a host of other benefits. Even if you don’t, many other programs ask for a copy of your denial letters before they will accept your applications. Enroll your kids in the school lunch program. Most people don’t realize the CHIP program has been expanded in many states to include adults. This medical coverage is called AdultBasic in PA.
When filling out forms for Social Security or any other programs, go over them thoroughly before submission. Follow directions precisely and attach all the documentation asked for to avoid unnecessary delays or improper denials. Pay strict attention to deadlines. Further, if others (such as doctors) have filled out or signed paperwork for you, inspect it carefully before leaving the office. It saves you time and money if you discover errors or omissions right then and there. It also keeps you in good graces with them and it may even save you extra fees for form completion.
You might not think you "need" food stamps, free back-to-school clothes for your kids, a free weatherization program, or a rent rebate. It’s apparently not obvious to everyone, but if you qualify for any aid of any kind at all, the money you save can be applied to your medical bills and other needs.
You may be able to connect quickly with a social worker or resource coordinator when the need arises. Keep in mind that, though they always mean well, some of the ones available to you at no charge are new to the field. They may or may not know any more about programs and services than you do.
Topic #8: Asking for Help
It might be difficult at first to ask for help, but it gets easier. Try to get past feeling embarrassed or ashamed that you are ill, that you don’t have insurance, and/or that you are struggling financially. I know this isn’t easy in our society. Try to talk to as many people as you can about your situation – but without being a pain, of course. That’s how you will find some of your best information. Practice what to say if you must.
It’s imperative, whether you are the patient or the caregiver, to guard your health. You need a support system. Look around you. Many of the people you know absolutely mean it when they ask, "What can I do to help?" Some may even be hurt if you don’t call upon them! It makes them feel useful and gives them a chance to show their love and concern. You can pay them back or pay it forward later. The sooner you feel comfortable enough to delegate a few things, the better it will be for you and your family. If you are lucky enough to have a lot of friends and family, when each person helps just a little, it helps you a lot!
If you draw a blank as to what anyone could do for you, here are some nice things others have or could have done for me: baby-sitting, pet-sitting, house-cleaning, being with me in waiting rooms, staying with my husband so I could have a break, taking my husband for a brief outing, getting my children off to school, wake-up and reminder calls so I didn’t miss appointments, cooking meals, doing dishes, packing lunches, doing laundry, taking kids to activities, phone duty, searching for information, filling out forms, running errands, shopping, rides to the doctor, getting my vehicle inspected, making small repairs, lending me a few dollars, just listening. Chances are, you won’t be able to afford to pay for services like these.
This might sound silly or callous to you, but after a while, I consciously "categorized" my friends and family. There are "Doers," the ones I can count on for material support like pet-sitting and rides. There are "Stiff-Upper-Lippers," the people I call if I need to be encouraged or reminded to stop whining. There are "Soft Shoulders," who hold me when I feel like crying and say, "Awww... Poor baby." There are "Zen Friends," who just sit with me and watch a movie or listen to music without asking a single question. There are "Comedians," able to make me laugh no matter what. (Of course, there is overlap.) Oftentimes, I call one or the other and say right up front, "I need a kick in the butt" or, "I need to cry with someone."
I almost lost a dear friend I had worked with but never saw anymore, though we still emailed and called each other. When my husband’s condition became grave, I never told her. (She barely knew him.) She was my "Normalcy Friend." She kept treating me the same way she always had. We’d talk about "whatever" instead of doctors, hospitals, and bills. There was no sadness, fear, or pity in the air. But, when I called her to tell her my husband was dead, she asked, "Why didn’t you tell me?" It took more than a month for her to understand what an important role she had played in keeping me sane. Eventually, she was pleased at the special nature of our friendship and the special role she had fulfilled.
Next to your family, friends, doctors, and pets, your internet-connected PC is one of your best buddies. Learn as much as you can about the conditions that you or your loved one has. Search and apply for assistance programs online. Save links. Track information. Keep in touch with friends and family through regular updates on your situation. Your phones and answering machine are good pals, too.
Most people you deal with when going after benefits will be kind and at least try to help. Of course, be nice in return. This might not be easy if you are angry, frightened, embarrassed, or in a hurry, especially if this is the "millionth" call this week. Try to be patient, clear, gently assertive – and try not to whine! Ha-Ha! Take notes.
My husband once had to be taken by Life-Flight from my backyard to a city hospital. The bill would have been more than $10,000. I was relieved to learn that our volunteer ambulance company raises funds for people who don’t have insurance coverage for ambulance service. I ended up owing nothing. If I hadn’t asked, I might not have known. Now, I donate to them when I can.
If you can, get friends and family to help you do online research, make calls, and fill out applications. Have your basic information in front of you when you call or search online – your monthly income, your diagnoses, and your list of prescriptions and other needs. Provide the same list to your helpers. If you or anyone contacts someone who is unable to help, ask if they know someone who can. It’s sort of like networking for a job.
Topic #9: Dealing with Debt
As hard as it is, contact your creditors and explain your situation as soon as possible. Utility companies have been particularly cooperative with me. If you can prove true need, my phone company has a service that keeps your line open to dial 911 and to receive calls even if you can’t pay your bill. They also have another program for low income customers where, for a very small fee, you can make local and 800-number calls, receive calls, use pre-paid phone cards, and reverse charges for calls. Credit card companies sometimes have "compassion" or financial assistance programs. You might be able to consolidate debts. You should be able to set up a reasonable payment plan with the hospital. They will probably lump all your bills together to create just one payment if you ask.
If creditors start calling constantly, get an answering machine and screen your calls. In PA, there is a law that if a debtor writes a letter to a creditor requesting no phone calls, they must abide by that or face stiff penalties. I found this out online and it worked. My lawyer didn’t even know this. No kidding. Also, creditors were only allowed to send me one letter per week.
If you lose a spouse, do not make even one payment on any credit cards or other bills that are in their name only, including medical bills, before speaking with an attorney or some other financial adviser. Once you make even one payment, you have "assumed financial responsibility" and must pay the debt in full. I found out after the fact that in my particular circumstance (and, I don’t really understand why), I would not have had to pay off my husband’s credit card or the $500 co-pay for his final hospital admission. I had even called the hospital to ask if I really owed it because in every other case I had heard of where a patient died in its care, the hospital ate the co-pay. His hospital said I owed it immediately. I paid it out of the proceeds from his small life insurance policy. Later, an attorney told me, "They lied."
Consult a bankruptcy attorney or other financial adviser if it seems appropriate. You probably know already that 50% of all bankruptcies today are caused by medical problems.
Topic #10: My Final Advice
It’s horrible to have to deal with sickness, let alone without adequate health insurance. Finding free or affordable medical care can really test your patience. Take deep breaths. Prioritize. If you are religious or spiritual, draw strength from that. Try to make time for yourself, your spouse, your kids and other family members, and you friends. Try to find non-medical related activities to do with them, even just going for a ride. Sometimes months would pass before my husband and I would do anything else besides going to the doctor or hospital!
Try to find a good balance between "thinking ahead" and "trying to make it through one day (or even one minute) at a time." Try to eat right, sleep right, meditate, play, and exercise. Pay it forward someday by sharing what you have learned with others or helping them in time of need. When you are in a better financial state, consider making donations to the organizations that have helped you.
Draft wills, living wills, and powers of attorney. Today. I believe these documents can be done without an attorney, but I wouldn’t recommend it. Fees for them are relatively low, but if you can’t afford it, use Legal Aid. My husband and I failed to do this. When he died, this complicated things and unnecessarily cost me lot of money. Soon after, I took care of this crucial paperwork for myself.
Yes, it’s exhausting, stressful, and time-consuming. Yes, expect some people not to understand and some frustrating setbacks. Yes, "you do not need this right now." No, it’s not your fault that you need medical care. No, it’s not your fault that you don’t have insurance. No, it isn’t fair. Just remember that you are fighting for the physical, emotional, and financial well-being of yourself or a loved one and for your whole family. Just try to hang in there.
My advice would be incomplete if I didn’t mention a few things that I don’t want to say and you don’t want to hear. It came up fairly often that people would tell me to "quit work, declare bankruptcy, go on welfare, and get Medicaid." I will tell you that for several years while I was caring for my husband, this might, in reality, have made sense. I simply couldn’t bring myself to do it. However, the more jobs I took and the more money I made, the less and less aid he qualified for. This meant we were mainly just treading water – well, actually, still sinking. It also meant being away from my family when they needed me most and losing out on time with my husband before he died. The stress probably contributed to my own later medical problems and disability. To this day, I’m not sure if that tactic would have succeeded or if I made the right choice to not even try. And, to this day, I am furious that I had to deal with this conflict because the richest country in the world does not have universal health care!
I wish you good health and I hope you found this two-part diary helpful.
Resources and Links
Here are just a few potential sources and links to get you started. Some are mentioned in my diaries. Some are just examples of resources in my area, but that you might have, too. I’m sure there are countless others. Please add your leads in the comment section. Thank you.
+ nyceve’s diary Unaffordable dentistry and an epidemic of dental disease and the comments
+ Free Medical Clinics and Camps
+ Newsweek article Doctors Within Borders
+ The "blue pages" in the front of the Yellow Pages directory
+ County resource directory (Allegheny County, PA)
+ Social Security – Disability and Medicare questions and applications
+ US Dept. of Health and Human Services Hill-Burton – free hospital care
+ CHIP (Children’s Health Insurance Program) – free or reduced price coverage for kids and adults
+ WIC (Women, Infants, and Children program) – free milk, formula, juice, cereal, tuna, carrots, cheese, eggs, beans, peas, peanut butter
+ State Job Service or Office of Vocational Rehabilitation - rehabilitation and job retraining
+ US Dept. of Health and Human Services Find a Health Center
+ US Senate, US House, and state representatives – program information, expediting appeals
+ County Health Department – medical information, medical care (pdf file), safe water testing, more
+ State Department of Aging – information, numerous programs
+ PACE and PACENET – PA only, but your state may have similar programs
+ State Insurance Commission – possible "guaranteed" medical insurance
+ Workers Compensation – for work-related injuries and illnesses
+ County Courthouse – "Homestead" tax reductions, Energy Assistance, Rent/Tax Rebates
+ Legal Aid – wills, living wills, generally NOT bankruptcies
+ County Assistance Office – Medicaid, food stamps, TANF ("welfare"), resource coordinator
+ County Social Services Agency – social worker, more
+ Community Action Group – medical transport, weatherization program, roof repairs, more
+ Chamber of Commerce – local businesses and charities
+ Visiting Nurse Association – countless programs
+ Out of Pocket.com – search for health care prices in your area
+ Area Agency on Aging
+ Local food banks and co-ops
+ Angel Food Ministries – participants of any income buy food at drastically reduced prices
+ Local churches
+ Local dental schools – free or lost-cost care
+ Nearby teaching hospitals – research studies
+ Local universities – research studies
+ Closest hospital – may have community social worker on staff, programs
+ St. Jude and Shriners Hospitals – free care for kids
+ Hospice programs – information, forms, support
+ Free clinics and health fairs
+ Local beauty schools – may have program for free in-home hair care for patient
+ Airlines – some still have free "compassion flights" if an immediate family member dies
+ Vial of Life
+ Discount chains – like Costco, Sam’s Club, Aldi’s, Gabriel Brothers, Ollie’s, Dollar Tree
+ Goodwill, St. Vincent de Paul – and other thrift and secondhand stores
+ Fuel savings cards and coupons
+ Wal-Mart, Sam’s Club, Target, Krogers, Giant, Food Lion, and Safeway – $4 prescription list
+ example of non-prescription fish antibiotics (from nyceve’s diary – others available - supposed to be the same as for humans even though they carry a disclaimer – USE WITH CAUTION?)
+ CraigsList, FreeCycle, WebMD, MedLinePlus, Wikipedia, and Local internet cafes
+ Pharmaceutical sites – individual manufacturers or PPARX
+ Books, TV, magazines, and newspapers (traditional or online) – health coverage, and "news you can use" features, coupons, estate sales for wheelchairs and hospital beds
+ Groups like Lions, Elks, VFW, Rotary Club, Salvation Army – whether you belong or not
+ Vision programs – such as Sight for Students and VisionUSA
+ Hearing programs – such as found here
+ LensCrafters and other eyeglass providers – for charitable programs
+ Health-related associations – American Heart Association, For the Cure, American Cancer Society, many more
+ Local and online support groups for patients, their families, and their caregivers – I found the National Family Caregivers’ Association to be helpful
+ Your doctors
+ Your nurses – at the hospital and in the doctors’ offices
+ Your pharmacist
+ Your local ambulance company – free service if uninsured
+ Your library – and the free research department if they have one
+ Your union
+ Your clubs
+ Your place of work – human resources department and co-workers, short-term disability
+ Your church
+ Your child’s university financial aid office
+ Your child’s school nurse – helping children to adjust, familiarity with local programs, more
+ Your other school staff – school lunch programs
+ Your utility companies – delayed payments, energy assistance
+ Your student loan company – deferments, loan forgiveness for disability
+ Your other creditors – "compassion" and financial hardship programs
+ Your family and friends