Options

[Donna]

Hello,

I am at the end stage of renal disease and I am on the kidney transplant list. I was working for Northwood Physicians, (Doctor's office), in Michigan for about 7 years. About a month ago my kidney doctor placed me on disability and as a result I got fired from my work. As soon as they fired me they stopped my Medical insurance and they are too small of an operation to offer Cobra. I applied for SSDI but it takes a while before they approve it. Right now I have all these doctors appointments and no insurance while I am almost ready to go to dialysis.

My mother died 5 years ago at the age of 52 while she was on dialysis with the same exact problem I have. I am not married and live with my sister and brother-in-law at their home because I can't afford even food right now.

I am too young to die.
Any ideas, suggestions would be greatly appreciated.

Thank you

Donna

[Beth Witten MSW ACSW]

I'm sorry to hear about the loss of your job, your current financial situation, and lack of insurance. I am especially saddened because I believe there could have been many other options that might have prevented your current situation.

Life Options encourages doctors to help their patients keep working whenever possible while their kidneys are failing or afterwards when they’re on dialysis or have a transplant. This usually requires aggressively managing symptoms, such as anemia, that can be huge barriers to working.
* Did your employer ask you to find out from your doctor if you were disabled?
* Did you talk with your doctor about your wish to keep working either before or while he/she was assessing your ability to work?
* Did your doctor ask you questions or measure your ability to stand, sit, walk, bend, stoop, reach, etc.? These questions are on most disability forms that doctors complete.
* Did you or your doctor share the disability report with your employer? If you did not authorize its release, your doctor may have violated the HIPAA privacy rule.
* Did you talk with your employer about any changes in your job that would let you keep working?
* What did your employer say when you were terminated?
* Did you talk with your employer to counter anything your doctor said?
* When you applied for SSDI, did the Social Security representative take an application for SSI too. You may qualify for SSI while waiting for SSDI to start if you have limited income and little in savings. If you qualify for SSI, you should also qualify for state medical assistance to pay your doctor bills.

Many doctors assume that someone with severe kidney damage or kidney failure is or will be disabled. They may not realize that many people can and do work with severe kidney disease and kidney failure if symptoms are reported and treated and if patients eat nutritiously, stay physically active, and take drugs as prescribed.

Social Security allows people with chronic kidney disease to qualify for SSDI if they have certain symptoms or lab values, are on dialysis, or are in the first year post-transplant. Those who have been found to be disabled can use Social Security work incentive programs to return to work when they are physically and emotionally able.

You say that your former employer is too small for you to get COBRA. An employer must offer COBRA if it has 20 or more full-time equivalent employees (part-time count as a fraction of full-time based on number of hours worked) on over half the workdays in the last calendar year. This means everyone -- doctors, nurses, lab personnel, billing personnel, office personnel…anyone paid by the group. If your former employer is smaller than that, check with Michigan Financial and Insurance Services at (517) 373-0220 or (877) 999-6442 to see if Michigan has state continuation coverage. Many states have coverage for people like you. There could be a time limit on how soon you must apply to qualify so contact them right away. Unfortunately, this coverage will probably have a premium and it may not be cheap.

If you have limited income, little in savings, and you’re disabled, you may qualify for state medical assistance. Medicaid can help pay for doctors, hospitals, dialysis, drugs, etc. Contact your county Family Independence Agency to find out if you qualify and what services are covered.

Once you start treatment for kidney failure, you will qualify for Medicare. You can read about Medicare in the Life Options booklet Employment: A Kidney Patient’s Guide to Working and Paying for Treatment at (http://www.lifeoptions.org/employ/). As you will read in that booklet, if your income is low enough, make sure your state pays your premium for Medicare Part B (Part A is free). You must have Part B for outpatient services, like doctors, dialysis, and transplant drugs.

If you want to work and need to do dialysis, you might want to check out a website that describes home dialysis options (http://www.homedialysis.org). It sounds like you have good family support which is very helpful with home dialysis. Patients that do home dialysis have more freedom around when to schedule treatments making it easier to work and they often feel better than people that do dialysis in a clinic.

Finally, it is hard for me to know if your former employer discriminated against you because of your illness since your employer. Having a disability may or may not keep someone from working, but the Americans with Disabilities Act (applies to employers with 15 employees) protects people with disabilities from employment discrimination (http://www.eeoc.gov/facts/qanda.html).

The red flag for me is that your employer terminated you and your insurance quickly once your kidney failure was known. Being a physicians’ office, staff have a better idea of what dialysis and transplant cost than other employers. As a small business concerned about insurance premiums, your former employer may have wanted get you off their plan as soon as possible to keep their premiums from going up.

If you feel you were discriminated against by your former employer, you may want to contact the federal Equal Employment Opportunity Commission or Michigan state agency that handles employment discrimination complaints (http://www.workplacefairness.org/agencies_MI.php).

Good luck!

sorry to hear about that.iam also dialysis patient.you can communicate with me on janif1@msn.com.

[Beth Witten MSW ACSW]

Hi Donna,
Did any of the suggestions that I posted in response to your message last November help?

1) Talk with Social Security about SSI. You need to have little money or savings to qualify.
2) Talk with your state Medicaid office. Medicaid can pay all or part of your medical expenses depending on your income and your state's coverage.
3) Talk with your state insurance department about whether you quality for state continuation (what many get when their company isn't large enough to offer COBRA) or high risk insurance.

When you start dialysis or get a transplant, you should qualify for Medicare and (depending on your state's regulations) you may be able to get a Medicare supplement to pay what's left on things Medicare covers. Currently Medicare doesn't cover drugs, but there are discount drug cards and pharmaceutical assistance programs that help people with limited income with some drugs. Ask your kidney doctor if he/she will refer you to the dialysis social worker. You will eventually meet this person, but solving some of these problems now will make your transition to dialysis or transplant much easier.

[lafferty4]

Dear Donna,

I hear you and here are some options. The American Kidney Fund can help you if you are ESRD and on dialysis. They give grants that never have to be repaid. Go to www.americankidneyfund.org and follow the prompts for financial help.

Another resource is your local chapter of the National Kidney Foundation. For instance, I was able to get a grant to pay for my electric bill and one hospital bill from them. Each chapter sets their own spending limit per patient, per year. Maryland's is $250.00.

I would definately go to your local department of Social Service to see if you qualify for temporary cash assistance, Medicaid, food stamps or independance card, and Energy Assistance. They are slow and tedious but they usually can help you out if you qualify income wise, which you should since you currently have no income. My family did not qualify for anything while I was waiting for disability through them because my husband was still working, but your circumstances are different.

Another excellend resource is the Patient Advocacy Organization or Foundation for Patient Advocacy. At first glance it appears that they only help cancer patients but I found them to be most helpful. I left a message for a free case worker to return my call. I received a call back within 24 hours with news about some things we might qualify for and am currently applying for that assistance.

Another place you can look to if your need is unexpected and modest is Modest Needs. Their website is www.modestneeds.org. You must first register as a guest and then see if a slot is available to assist you. Their website explains more. Tip: A modest need is considered $350.00 or less but they will sometimes fund up to $999.99.

Help with prescriptions can be found at the Partnership for Prescription Assistance at www.pparx.org. You cannot have any other prescription coverage in place in order to qualify to get your medications for free.

You may also qualify for assistance from a local church, food pantry, or the Salvation Army in your area.

Hope this helps. E-mail me to let me know how you are doing.

Sincerely,

Barbara Lafferty
lafferty4@verizon.net

[lhall1018]

There is always someone who is worst off.
Life is too short!
Take it one day at a time, sometimes on minute at a time.
Our lives are not in our hands, but there is a plan for everyone.
Just remember It is not in our hands.

Peace be with you!

[Beth Witten MSW ACSW]

I have heard many people with kidney disease say that they live from day-to-day and I believe they do this because they don't know how they're going to feel from day-to-day. Much of this relates to symptom management. Their symptoms can be affected by how they communicate their symptoms to the doctor and what the doctor does about them, if they're on dialysis how good the dialysis is removing wastes, how well nourished they are, what medicines they're taking and whether they have side effects that they report to their doctors (sometimes a medication change can make all the difference in the world), the amount of activity and exercise they do, etc.

Although we don't have control over everything that happens to us, we have more control than we believe over some things. In fact, Life Options found through research with people who had survived on dialysis for 15 years or more that their attitude, how much they learned about their illness, and how much they participated in decision-making and care influenced how well they did (sense of well-being) and how long they survived.