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!

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. Fundabilities.com 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. 

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!