When my husband first got sick, I was honestly just so overwhelmed trying to “maintain,” that finding help for our household was put on the back burner for several weeks. When things finally calmed down, I realized that my family needed help, but I had no idea where to begin looking for it. I am honestly fairly ignorant regarding government assistance programs. I didn’t know what programs were applicable, when I should apply, or who could answer my questions.
I asked just about everyone I knew for information and assistance: friends who are suffering from cancer, support groups, doctors, teachers, lawyers, school social workers, church deacons, financial counselors, and many other people. One doctor put us in touch with a hospital social worker who handed me a copy of the Seniors Blue Book and evidently considered her responsibilities fulfilled. While there’s some good information in the blue book, the vast majority of it really isn’t applicable to my 37-year-old husband. At this point, he is not looking for a retirement home or assisted living center. While everyone tried to give some direction, no one could really give me a complete picture or a clear path to follow.
I admit that I am one of those people who prefers to have a checklist at all times (even if I make my own). In fact, I would have loved an instruction booklet called The Step-by-Step Guidebook for New Caregivers: What to Do When Your Spouse Becomes Disabled. Unfortunately, I haven’t found one yet. I think if I ever have this system all figured out, I should write one. Until then, I’ve had to “muddle” my way through “the system.” I still don’t have all the answers. However, I am hoping that by sharing some of the information below, the information will at least give other caregivers a place to start.
- The first thing I recommend doing is talking to your doctors about your concerns. Doctors can prescribe various services such as physical and occupational therapy. Sometimes their recommendations are covered by your insurance company. They can also put you in touch with medical social workers. Which leads to #2.
- I have found that a knowledgeable MSW is your greatest resource during a health crisis. A good social worker will recommend government assistance programs and provide applications to charitable organizations. They should answer your questions, help you navigate the system, and become your advocate. In fact, consulting with more than one medical social worker will increase your chances of finding all available programs and services. For example, one social worker recommended a discount program to us at the hospital called CICP. Another social worker submitted an application for Project Angel Heart, a nonprofit organization providing meals to cancer patients.
- The human resources department at your place of employment should guide you through benefits and insurance issues. I have found that sometimes you have to “badger” them for the information you want, but it is their responsibility to provide you with significant dates, payment information, copies of insurance policies, and termination procedures. Try to become familiar with laws governing your employment such as FMLA. If you think your rights are being violated, consult an attorney.
- You do not always need to buy medical equipment. There are several nonprofit organizations such as the Assistance League of Denver that will loan or give you medical equipment for free. (To obtain wheelchairs, you will need a letter or prescription from your doctor.) Some nursing homes and other organizations also give away equipment. If you do choose to buy medical equipment, several stores such as Lowe’s and Home Depot are beginning to carry equipment such as tub benches, safety rails, and toilet risers for the aging population. Youcan Toocan is a great online or catalog resource.
- If your disability or illness is expected to be long-term or terminal, you will want to apply for social security disability. Applications can be submitted online. If you qualify, social security will provide some financial resources during your illness. Along with your disability application, you will want to apply for SSI. Several people have told me that you will typically be turned down 2-4 times before finally receiving SSI – so you may need to re-apply several times. Do not give up.
- If your families’ income is below a certain level or you have special medical needs, you can also get an application for assistance at your county’s welfare office or online. I personally found the list of services, qualifications, and application daunting, but it is important to turn this application in as soon as possible because some programs post-date their payments up to three months. However, the catch is that, to qualify you typically need to have under $2k in resources – so you may have to wait to apply until you have used up your short-term disability insurance, exhausted your savings, or gotten rid of a second car, for example. Beware, you will need to gather quite a bit of financial information including proof of residence, income and resources, mortgage or lease, etc. Set aside a few hours for this project.
- Especially if it is winter, you may want to apply for energy assistance. Applications can be found online or at your county welfare office. In Colorado, LEAP assists with your heating (gas) bills from Nov-Apr. Phone companies also have discount services available to low-income customers. Our electric company referred us to the Salvation Army and a couple other local charities, but I haven’t tried to call them yet.
- Food banks are another good resource when things get rough. You may have to call around or ask your welfare office for referrals. These charities usually have an application process, maximum number of allowed visits, and limited hours. Most often you will receive nonperishable items and day-old bread, but some food banks offer milk and dairy, produce, or gift cards to grocery stores.
- Local churches, synagogues, and charities may be able to provide financial assistance. If you do not belong to a church, ask your family or friends where they attend worship services. Some places will have special programs already available to the public. At other places, you may need to ask for what you need.
- If you have children, you can apply for reduced or free lunches from your school district.
- For those who cannot drive, call to see if the bus or another service will pick you up at your house and take you to medical appointments or work. Your social worker or doctor can submit an application for low-cost or free transportation.
- I have found that support groups are wonderful at giving empathy and suggesting resources. Check out nonprofit organizations relating to your particular disability or illness. We have found the Nephcure Foundation very emotionally supportive. Oftentimes these organizations hold in-person meetings and mixers, but a social worker also suggested online support groups such as those provided by the American Cancer Society for the times when you do not feel like getting out of the house.
- As our pastor told us, losing your job or health creates a grieving process. You may be grieving what you have lost or your future dreams. I plan to write a blog on this sometime. But if your family needs counseling to help deal with your new circumstances, your county’s mental health program will prorate services and hook you up with a local counselor specializing in your issues. Local churches typically have counselors available as well.
- Last but not least, sometimes we do not want to burden family members and friends because we know they lead busy lives. However, many of your friends and family members will be glad to help bring meals, clean, or do repairs as they are able. Sometimes they just don’t know what to do. Call or send out an email to see who is available.
I am sure there are services that I have forgotten to mention here, but I hope these suggestions will provide other caregivers with some ideas about what kinds of assistance and programs are out there and where to turn. Please feel free to add your ideas under my blog comments section so that everyone can benefit from what we have all learned.
Jason Graham was the recipient of the 2010 IDA Inspiration Award – Read the Article and Watch the Video Here. Read the Graham Family’s Full Story Here.
UPDATE: We regret to inform you that Jason passed away on April 2, 2011. Our thoughts and prayers are with the Graham family. Read full story.
Programs4People – the Invisible Disabilities Association’s page for links to help with groceries, utilities, clothing, prescriptions and more.
Applying for Disability Benefits with Chronic Illness – Attorney Scott Davis
Chronically Ill Patient’s Rights – Jennifer C. Jaff
Common Mistakes When Social Security is Denied
Free Social Security Disability Evaluation with Allsup
Health Care Issues for Patients with Chornic Illness – Attorney Jennifer C. Jaff
Six Advantages of Representation for SSDI
Tips on How to Pay for Medical Care – Jacqueline L. Jones