Monday, June 4, 2018

A Call to Action- 911, Ambulance Rides and New Yorkers Everywhere

911, Ambulance Rides and New Yorkers Everywhere

In the 1980’s 911 was instituted to help EMS and Police respond faster to emergencies within New York State. If you have ever needed to call 911, you know what a relief it is when the ambulance or police show up to help. If you have ever needed a ride in an ambulance, you know what an amazing portable emergency room that vehicle is.

I have had to have two rides in the ambulance. The first was at 17 when I was rear-ended and my knee was slammed into the dashboard. The pain from the injury was intensive, but as the EMT on duty stabilized my leg and got me onto the stretcher, the pain was already lessening from the added support. As I arrived at the hospital, pain meds were immediately available and care was started quickly.

The second time was a life threatening event. I had an allergic reaction to the medication I was taking to prevent asthma attacks and it sent me into the worst asthma attack I ever had. My boss called 911 after watching me struggle to breathe for 20 minutes. There was a huge sense of relief when the EMTs arrived with oxygen and the nebulizer treatment. Three treatments in the ambulance and 4 more in the emergency room finally cleared my lungs. I would not have survived that day if the ambulance had not carried the life saving nebulizer treatments on board. I would have passed away had I chosen to drive myself or had someone else drive me the 30 minutes to the hospital.

I am glad that we live in a state that sends an ambulance to help with a simple call to 911. Appropriate life supporting care is given quickly and confidently as well as a ride to the hospital. Emergency personal within the hospital can be prepared for your arrival with whatever medications, tests, and screenings they need to do because the EMT on the ambulance has prepared them for you.
Unfortunately, there is one group of New Yorkers who do not have access to 911. Those living in group homes for the developmentally disabled are not given access to this crucial service.  Instead the staff that care for them are asked to call the company nurse or on call doctor. While this may be fine for a cold or a cut on the hand, to not call 911 in a more severe emergency leaves these New Yorkers in pain and risks their lives. Nurses, even those on site, do not have access to all the medical supplies and life saving treatments that are carried on an ambulance. Think back to the last time you called a doctor’s office. The first thing that the automated  message said was “if this is an emergency, hang up and call 911.”  There is nothing more an on call doctor can do in a medical emergency for the developmentally disabled than they can do for us. Yet still the staff are instructed to call staff nurses and doctors instead of 911 in an emergency.

In fact, over 75% of untimely deaths within group homes can be attributed to not calling 911. This is unacceptable for the 1 million New Yorkers in state and private care. Please help Health Literacy for All Inc and the Jonathan Carey Foundation address this issue by asking your senator and assemblyman to pass the 911 Bill (S4736-Lanza/ A6830-Weprin). While we currently have over 75% support for the bill in both houses, it is not being brought to the floor for a vote. The legislator finishes for the year in June and if this bill is not brought to the floor and voted on by then, it will be 2019 before this can be voted on. Please don’t leave our most vulnerable unable to access emergency care for another year.

If you are not sure who your legislators are or how to contact them, you can find your assemblyman listed at or for your senator at

Thursday, March 9, 2017

HiPAA and You

HIPAA... We know it as that piece of paper we sign that says the doctor won't share our health information. Do you know what HIPAA stands for? Health Insurance Portability and Accountability Act. Originally written to make sure that you had access to health insurance even if you changed jobs or moved states, it became a nightmare of regulations in regards to keeping your health records safe. And so you understand how serious the federal government was about this, it costs a person who violates HIPAA $10,000 and it costs the hospital, office, or other agency that has your records another $10,000 per incident!

There are some top secret ways you can get HIPAA to actually help you or your family member stay informed in the case of a medical problem. We have gotten used to signing that HIPAA form without realizing we can use it as a tool. Think about if you were in a serious car accident. Who might you want to know that you were in the hospital? Your spouse, your children, your pastor,  your best friend, or your parent? List them on the HIPAA form in your primary care doctor’s office.  If you have kids under 18, who might you want to know about their needs if you and your kids were both involved in the accident? Their daycare administrator, school nurse, babysitter, grandparent, your best friend, their best friend’s parent, or your rabbi? List them. Tell them they are listed so they can ask questions and have the doctor look up the records. If you are over 65, try to leave that list with every doctor you see and your local hospital. In theory, if your list is maintained in your primary care doctor's office and your medical records are online for other medical facilities to see, they should honor the HIPAA list that is at your primary care doctor's office.

On the flip side of that HIPAA form, if you know health information about someone that is harming that person’s health, you can write a 1 page letter to anyone’s doctor about your concerns over their health. The doctor isn’t allowed to respond to you about the note (unless you are on their HIPAA list), but that doesn’t legally stop you from sharing what you know with their doctor.  This can often be the difference between a patient getting routine care and getting excellent care, because someone bothered to tell the doctor info the patient wasn’t sharing.While this may not be a big deal with physical health issues, it can be a huge source of information for the doctor when dealing with a patient with a mental illness or an addiction problem. These patients often hide how they are from their doctors and refuse to write family members into their HIPAA orders. But providers in both fields know how valuable it is to hear a family member's side or talk to a best friend. They see and report things that sometimes the mentally ill or addicted either don't see in themselves or don't want to admit to.

You may also find that a simple one page letter explaining what you see to your aging parent's or grandparent's doctor, helps the doctor to give your loved one the best care possible. Information like, he's not a safe driver, she seems more exhausted lately, or he is falling a lot more, can help a geriatric doctor take a closer look at potential aging issues that seniors can often cover for the short tern they are in the doctor's office. I know what you are all thinking right now.... What was that about their driving? Medical providers in NY can request a driver's evaluation of a senior that is covered by Medicare. The senior then takes their car and drives around with a physical or occupational therapist  who specializes in driving skills. They usually get a road test, some retraining classes, and necessary modifications made to their car for free. These are all designed to help your loved one not be the next 81 year old who drives into a porch or store front. As a warning though, if the driving specialist doesn't believe coaching and modifications to the car will make your loved one a safe driver, they have the legal right to immediately pull that person's driver's license. Then again, if they are unsafe and, for whatever reason, are unteachable to become a safe driver, you don't want them driving anyway. (AND you knew that, that's why you asked the doctor for a medical driving review.)

So there you have it, a quick summary about HIPAA, the first of many not well thought out medical laws impacting health.. Used properly, you can make sure the people you really want to know what is happening to you in a medical crisis can find out. Skirted around legally, you can make sure that your loved one's doctor has the most accurate info about your loved one's health, even when the loved one doesn't want you to share.

Here's hoping this helps you to

Be Healthy!

Wednesday, January 11, 2017

Helping through a Health Emergency

 OK, This actually was drafted last February. The chaos of caring for two teen girls with serious illnesses knocked a lot of my plate last year and one of those things was blogging. But as 2017 roles around and I am getting a brand new lease on life, I am returning to writing. So I am adding this intro, and at the end, I am telling you about my year. But the advice I am writing here, I can still say is accurate. Especially the pjs. 

Last month, my 15 yr old daughter had emergency brain surgery to remove a cyst in her brain. 4 days ago, my 17year old one daughter had a nonfunctional gallbladder removed. Both of these events has led me to write this newest blog....Helping in a Health Emergency. 

1. Offer to pray...and do so. I cannot tell you how much prayer made a difference. In keeping me calm, in speeding recovery, in helping me stay upbeat. Prayer is so highly effective.

2. Respect family privacy. Ok, this doesn't apply to me at all. I posted on Facebook several times a day. I was probably the person that everyone thought shared too much info. But not everyone is me. Many families would prefer to go through these moments quietly. They may share when the journey is done, but not at the beginning. They may share only glimpses into their world. Respect that. Don't push for information. You are not going to get it and you may ruin a friendship over it.

3. When you make an offer to help, be specific. Can I bring you dinner tonight or tomorrow night? Can I stop and buy milk and laundry detergent for your house? Can I drive your other kids to school? The more specific you are about the offer for help, the more likely you are to get a positive response.
In my case, when people offered to make dinner my response was "my kids all cook and they often are working through dinner time, but if you would drop off nonperishables, fruits and vegetables, they would appreciate not having to go to the store." Please don't do the "let me know if I can help" line. I'm not likely to call even if  I realize I need help. 

4. Hospitals are expensive. Never mind the medical costs. Food in the cafeteria, parking, gasoline back and forth. Consider a gift card for gas, or buying a meal plan on the hospital dining rooms. Ask at the nursing station about local restaurants that deliver and buy a gift certificate to that restaurant. 

5. Consider the gift of time. Visiting for 15 to 30 minutes is great, but by day three I wanted a shower and she still didn't want to be alone. Offer to come for an hour or two and sit with the patient,so the family member can go home and take a shower. Or take one there and then read a book in a nearby waiting room. Tell the family member you are coming so they can leave the room if they want. 

6. Think outside the box. One of my favorite things a friend did was send my girls new pajamas. She said they should recuperate in something soft, warm and new. So much more practical than the traditional stuffed animals. 

7. If the treatments are expensive, their health insurance isn't the greatest, or they are taking time off from work, consider a fundraising event. in my area is a local online fundraising source. There are lots of them. My friend set one up for me (with my permission), then sent me all the links so the money went into my bank account. It saved me from worrying about the time I was missing from work.

I cannot emphasize the fundabilities  account. Not only did I have the time in the hospital, but all the followup appts. As it stands right now, Brain Cyst Child is better, but in the last year we were in PICU on an overnight hold twice more due to mild headaches that didn't respond to medication, we had probably 15 followup appointments and we also discovered she has tonsil stones. She will be seeing an ENT soon to get those removed.Gall Bladder Girl has also had repeated visits to gastroenterologists because while her gall bladder wasn't functioning, that did not turn out to be the  only source of her pain and bowel difficulties. We are still on the journey to figure out what sends her system into periodic spasms. 

So here I am 1 year and 1 day from the day my youngest had her cyst removed. We survived this year. We pulled together as a family. We had scary miserable days. We had angry jittery days. We had days of amazing family harmony. Appreciate your life. Your kids. Your Health. 

Over the next few weeks, I am going to write about things you need to know to stay healthy in 2017. Here's to hoping my kids and I can do so too. 

Thursday, January 5, 2017

How Can I Help? What NOT to do?

Last month my family had a pretty serious health moment with one of my kids needing emergency brain surgery. I am glad to report that the surgery was a huge success and she is doing fantastic!
In the process, everyone and I mean everyone, asked what they could do to help. My next article will give you some ideas of what to do, but this one is what NOT to do.

1. Do not ask how the patient is doing. No, I don't mean don't ever ask, I mean respect the family's way of communicating and the info they are giving out. I shared on Facebook my daughter's journey and I posted several times a day. I am sure many people thought it was TMI (too much information), but still a few people felt the need to call, text, and Facebook message me asking how she was doing. (One person asked 17 times in the first 24 hours.) Families are overwhelmed with the information they are being given in the hospital and are doing their best to process that info with the people who need to know the answers. Not you. No matter who you are. (My brothers who do not live in town and are rarely on Facebook didn't find out til the 13th. I felt horrible that I didn't tell them earlier, but they understood.) 

2. Don't bring flowers or giant stuffed animals. Flowers are not allowed in ICU units in case of allergies with anyone on the unit, and giant stuffed animals take up valuable, limited space. Also, don't bring candy, food, etc unless you know the patient can have it. The best way to know? Call the nursing station and ask questions. Don't ask the family. (See above). 

3. Don't ask what you can do to help. Again, this isn't about not helping. It's that processing more than what is directly in front of you isn't happening. Ask a specific question... Can I sit with the patient while you get a shower? Can I bring you a healthy lunch tomorrow? Can I babysit for you on Thursday morning? I am going to the store, do you have a favorite snack or toothpaste I could pick up for you? (The more specific your question is, the more likely the family is to take you up on the offer or modify to their need.) My kids all cook and often eat dinner late at night. They didn't want homemade dinners delivered at 5. But when someone offered to deliver dinner, I gave them what worked for my kids. "Because of their erratic schedules, they are asking that you drop things off that they can cook with. Nonperishables that can sit on the porch til they get home. Fruits, veggies, pasta, sauces, potatoes, things like that." 

4. Don't assume the patient will want visitors. Don't assume the patient won't want visitors. Each patient and their family will have different opinions. My orders to the nursing station. "If anyone shows up to visit my child, let them come in." I posted and encouraged people to visit. But again, don't contact the family to make arrangements or find out where the patient was. Call the hospital. Ask about visiting hours and any limitations. In the Pediatric ICU, my daughter was only allowed 2 people in the room at a time. Some nurses would allow a third (occasionally even a 4th). Some were very insistent on two.  I also had access to a Ronald McDonald family room that allow the people who were waiting to see my daughter to be comfortable. I didn't like to leave her alone, but I also knew for her mental health, it was important she see others. So when we got overcrowded, I left the room. Not all moms will do that. 

5. Don't stop caring just because everyone left the hospital. Extra doctor appointments, patient care, and parental concern still inhibits my functioning some days. Dinners may still be appreciated, flowers and giant stuffed animals brought to amuse my house bound teen would be great. Visitors are still welcome and there is no more limit of two. Now without a hospital staff to help guide you, you will have to communicate with the family, but again.... be specific. Can I bring dinner on Tuesday night? Would you like to get out and grab a cup of coffee on Friday? Do you need someone to sit with the patient while we grab that coffee? 

So that is my "What NOT to Do" rant. Thanks for listening. Next week, look for the list of all the amazing ways you can help out. So you won't have to say, "What can I do to help?"

Be Healthy!

Tuesday, December 1, 2015

Thanksgiving, Black Friday, Small Business Saturday, Cyber Monday, Giving Tuesday Whew!

So, if you live in the United States, you have just survived THE weekend that most exemplifies both the best and the worst of being an American. Thursday, we celebrated our national heritage and family with Thanksgiving. What started as a holiday to celebrate survival and the help white refugees got from Native Americans, has turned into an all you can eat day of football and parades.

We follow Thanksgiving with Black Friday, a day we used to use to Christmas shop for loved ones, but now often use it to buy stuff you don't really need just because it is ridiculously cheap.  Originally a one day event, big retailers have now started Black Friday days ahead of time, and small retailers who cannot afford to discount their items that heavily, have responded with Small Business Saturday. Then online retailers added Cyber Monday. It's enough to make you wonder what happened to all that gratitude we had on Thanksgiving.

And then, not to be left out of the spending spree that is this 5 day nightmare, the non-profit world created Giving Tuesday! A push to get any extra money you might want to donate to a charity at the end of the year. (Not to mention the ongoing donation boxes, add a dollar at check out, and kettles in every store.) As Americans, we once again took a good idea and made it over the top.

But as the owner of a small non-profit seeking to improve the health outcomes of every New Yorker, I cannot afford to ignore it either. So today, I am asking you to consider making it a Giving Tuesday to Small Non-Profits Day. The big ones have already overwhelmed you with emails, social media posts, and pleas for donations. But it is the little non-profits who chug away on small donations, whose CEO's don't get paid, who can take a dollar donation and stretch it to be worth so much more, that really need your funds.

So please, consider donating to Health Literacy for All Inc,  and click on the little donate button right under our logo. Or find another small non-profit you love and donate to them. And be generous, We the small non-profits of the country thank you!

Friday, October 9, 2015

Navigating the Health Insurance Choices

When I share that I make a living by teaching people how to navigate the health care system, the first comment I hear is "Wow that's so needed, no one seems to understand their health insurance!" Of course right now I am teaching on that topic as seniors have to select their Part B and D insurances in October and in November open enrollment starts for people picking on the Health Exchanges. So I thought I would give you a few key things to think about.

First, health insurance companies are tightly regulated by the federal and state governments. There are certain things they must provide (free annual exams, free mammograms for women over 50, free colonoscopies for everyone over 50, and vaccines are covered 100% for kids). They must also cover hospitalizations, medical testing, physical therapy, sick visits, and medications, but not at 100% coverage. They are required by law to explain how this works (some work primarily on a high deductible, some with co-payments or co-insurance, and some with a combo of both.) They are also obligated to their business plan to not pay for anything they said they wouldn't cover. This often means that extremely expensive or experimental treatments are not covered or that there are limits to the number of treatments they will pay for. It just doesn't matter how sad, desperate, or horrendous your story is, if they don't cover the treatment or all the treatments you need, they don't cover it. They would go bankrupt if they did and then they couldn't cover anyone. It is YOUR obligation to know what your insurer will or will not cover.

Secondly, health insurance is expensive. When you are looking at the cost of your health insurance, you must look at more than just the monthly premium. So you have an understanding in 2010, the average employer paid about $10,000 per employee per year for health insurance. Understanding that should help you understand the costs on the Health Exchange as well. On top of the premium, you may also need to meet a deductible (anywhere from $500 to $3000 per person). Then there will either be a co-payment (a set dollar amount based on the care you are receiving) or co-insurance (a preset percentage of the cost of the treatment ordered).  Co-payments and co-insurance will be on medical treatments, doctor's appointments, use of the ER or hospital, and medications. You must estimate how many times you will interact with the healthcare system in order to get an idea of how much it will cost you over the next year. For frequent users of the health care system, or young couples who might have a child, it is often worth it to pay a bigger premium and less in deductibles and co-payments/co-insurances in the long run.

Finally, if you already have a favorite doctor or ongoing medical concerns, you will need to make sure that your health insurance company participates with your doctor and treatment center. Otherwise, you will find yourself having to find a new medical team or paying much higher costs to use a doctor who isn't part of their group. You should also look at any medications you use and check to see what the copays are for those as well. If you have a large family history of cancer, you may want to see if your insurance company will work with some of the large independent cancer treatment centers as well.

As you are going through the different health insurance options out there, here is a list of the words that mean you will have to pay money..... premium, deductible, co-payment, co-insurance, out of pocket, non-participating, not in network, usual and customary charges, non-formulary, and formulary list. Make sure when you see these words, you understand exactly what is being covered and what is going to cost you more.

Hopefully this helps you as you begin to look at health insurance. "I didn't know the speed limit" doesn't get you out of a ticket and "I didn't know that wasn't covered" doesn't make it covered. Go through your health insurance options carefully. Ask questions, of me, at the exchange, at the doctor's office, with your insurance provider. And remember, health insurance was never designed to cover everything but if you read through the policy carefully and you understand everything, it will go a long ways to making your trip through our system a bit easier.