As of this writing it has been 1 year, 9 months, and 4 days since we entered The Eye of the Storm. That’s 925,920 minutes since Gabriela demanded that we went looking for a church and Holy water and I’ve endured every single one of them. Now that Gabriela is recovering from the psychological effects of being misdiagnosed and incorrectly medicated and is returning to me and to the world and knowing surgery might cure her epilepsy I finally feel like a normal life is possible for both of us. Gabriela and I can finally see light at the end of the long, long tunnel we’ve been through.
When I look back at everything that has happened I am amazed that Gabriela and I got through it in one piece. If I had to deal with it all over again I know I would make some different decisions but at the same time I know there were definitely things, regardless of the reality training I’ve been through, that would remain just as difficult and probably have the same outcome.
I have learned so much about medical professionals, insurance companies, mental health, social security, Medi-Cal, and independent living assistance. For example, regarding medical professionals and doctors specifically the most significant thing I learned is that doctors are not always right and they are not always engaged with their patients.
Finding a doctor who will actually serve their patients’ needs should be approached more like hunting for a mechanic for your car. As consumers we all have no problem in asking questions before selecting our auto mechanic, why then would we not ask questions before selecting a doctor? Perhaps it’s because, in general, we are referred to doctors by other medical professionals so we assume they must be the right one and that is wrong.
But even more important in choosing the right doctor is to not assume that they are always right … the mystique of the doctor needs to be stripped away. I remember when Gabriela was just a baby, less than one year old, my ex-husband and I had picked our family doctor because he spoke Arabic (my ex- didn’t speak English at the time) and we had heard that this doctor was a good choice.
Well, it didn’t take long before I had to take Gabriela to the emergency room at Children’s Hospital because I had followed our doctors’ orders. He had advised me to keep her on a liquid diet for seven days in order to stop her diarrhea. Then, when we saw the ER doctor, he scolded me because he said I was starving my daughter.
Out of frustration I blew back at the doctor loud enough that the staff in the ER came out of their exam rooms to listen as I explained to him that I was following the directions given by Gabriela’s doctor and that doctors are perceived by their patients as “all knowing” who was I to think that our doctor didn’t know what he was talking about. Well, the answer was and is simple: I’m her mother, I’m the person who cares most about her in the world, and I’m the one that should make damn sure I pick the best doctor for her.
I have interviewed every person who has interacted with my daughter throughout her life from counselors, through ballet schools, swimming lessons, on and on but only once did Gabriela and I decide to interview a potential neurologist. Gabriela was in high school at the time and had been having seizures for three years or so and had been through just as many neurologists. We had been told by our insurance company that there was a neurologist in their program available to her, Gabriela decided that she wanted to make sure she liked their choice and would be interviewing the doctor before she would make any decision. Prior to the appointment Gabriela and I collaborated on a list of questions for the doctor, during the first appointment I remember the neurologist coming into the exam room, file in hand and greeting Gabriela as she read her name off the chart. She read further and began to ask Gabriela questions related to seizures when Gabriela interrupted her and explained that she wasn’t here for an exam but had a few questions to ask before she would make a decision on who her next neurologist would be. The doctor was caught so off guard but respectfully answered each of Gabriela’s questions and then told us that she would like to be Gabriela’s neurologist if that met with Gabriela’s approval and, if so, would like to see her again in one month. In the end we didn’t pick that doctor because she did what many doctors do, she designed a treatment plan that very day without any more than a glance at the chart.
So how the heck did we ever end up picking Dr. Wreck? She was brought to our attention by my sister and if people consider me picky about who interacts with my daughter they haven’t met my sister. I am dwarfed in pickiness by my sister who was a nurse and changed paths to become an attorney. We Googled Dr. Wreck and found no derogatory reviews only accolades and she headed the adult epilepsy program at her hospital. I will say that when we met her the first time I had asked what made her want to be a neurologist and an epileptologist specifically and her response wasn’t what I wanted to hear: “Because I showed an aptitude toward reading EEG’s”. I had wanted her to say because it was fascinating or important work or she had a family member with epilepsy but to Dr. Wreck this was just a job.
So how should you select a doctor today? You should make sure your doctor is board certified, does he or she have a specialty, and if there have been any complaints filed about them. Each state handles complaint information and its availability about doctors differently. For instance, in California little information is available on-line but you may call the medical board at 916-263-2525 and make inquiries.
If you are satisfied with what you have found out up to that point then move on to a short interview with your prospective doctor and let them know it is an interview. Ask them who their typical patient is and what hospitals have they been and currently are affiliated with. Where did they receive their degree? Also remember that sometimes the nicest doctors can be incompetent while a rude doctor can be SO competent. You have to decide what you are willing to put up with.
Also be aware that if you feel restricted to providers offered by your insurance policy, there is the option to go “off list” and use a medical professional who you feel is a better fit by having your insurance company set up a “single case agreement”. In order to do this you may have to support your reason for making such a request. I had Gabriela’s therapist, Perie Longo, set up in this way and the supportive reasoning I used was that she had provided therapeutic care during Gabriela’s stay at Tranquility which would help provide continuity of care. I know it sounds crazy for me to have agreed to any faculty member from Tranquility after what Gabriela experienced there but Perie was a rose among thorns. She had conducted only one therapeutic session per week at Tranquility but was Gabriela’s favorite. It has turned out Perie was and is still a great choice.
Looking for a mental health facility has its own set of hurdles. Again, if you have insurance you should start by calling the behavioral health department within your insurance company. If you do not have insurance then start by contacting your county’s managed healthcare department.
One of the complicating factors in locating a good behavioral health facility is that typically something has happened that created the necessity to place your loved one under care, so there’s usually not the luxury of time to spend preparing — the need is NOW! Unfortunately there is no comprehensive list of behavioral health facilities available that I have found and there are no wonderful nonprofit that will help you wade through the glossy pictures that you’ll find on-line.
You can call NAMI (National Alliance of Mental Illness) and they will truly try to help but social workers within behavioral hospitals seem to have more of a finger on the pulse of what’s available.
Once you have found a few facilities that might be a good fit be aware that for the most part they are private facilities and are a for-profit business and that the first person you usually wind up talking with is their sales person who is not concerned with the appropriateness of their facility for your needs; they will just want to close the deal.
I believe it is imperative that you schedule a tour of any facility that may be of interest and the tour should include not only the treatment facility but also the residential facilities. If you are given the line that they are not able to allow tours because of HIPPA (The Health Insurance Portability and Accountability Act) walk away. Any argument that HIPPA is the reason is nonsense because the act just protects the privacy of the patient by not allowing tours while clients are on premises and they can easily schedule tours of both the residence and treatment facility during hours when the clients are not there. You should also speak with the clinic director, the psychiatrist, and a few of the therapists just to get a sense of how they operate.
It is important to know how many clients they have in the residence and how many in the treatment facility, what the mix of male to female is, along with the mix of behavioral issues. You will want a facility that handles client who are similar in issues, for example, if depression is the issue you will want a facility that deals more with mood disorders.
If they say they combine and take all of these plus addicts, as Tranquility does, head for the hills because they will only have one set of rule for everyone and, as in the case of Tranquility, everyone gets treated like an addict whether they are or not, this would be like removing the gallbladder for everyone that goes into a hospital complaining of abdominal pain. It works wonders for those patients that have gallstones but doesn’t help the person with appendicitis.
How long does a typical client stay? What do they provide in the way of aftercare? Ask for referrals who would be willing to speak with you regarding their experience and contact as many as you can. Talk to them about what life was like in the residence and what was treatment like, and what they got out of it. Talk with their family and find out how inclusive it was for the family.
And again, remember you may always arrange a “single case agreement” if you find a great facility that may not be covered by your insurance.
Lastly, independent living assistance … this is a crap shoot. This is just as hard as trying to find a great child care provider. As with childcare the provider you’re looking for will be unmonitored during their work day and generally people who require assistance in living have challenges that prevent them from fully understanding when a caregiver’s behavior is inadequate or inappropriate.
Gabriela and I are still working our way through this one because after her departure from Tranquility we were assigned an agency rather than being allowed to interview and select one. The experience we had with that first agency was a series of hard lessons learned over nearly a year.
Despite the fact that the case manager had assured us that she and the staff would be taking over management of everything from doctor appointments, Social Security, housing, Medi-Cal, public transportation, and more they failed to honor their commitments. Finally, after ten months of working with Gabriela, that provider dropped her without even providing reasonable transitional care to the next agency and gave less than the required 30 day notice which forced me to take over all caregiver responsibilities for Gabriela.
That was when I discovered her Social Security income was being lowered, her place on the housing assistance list had been cancelled, her Medi-Cal primary doctor had never been contracted, she had no “life-line” home phone installed, and she still hadn’t received a disability bus pass.
This was despite that fact that I continuously monitored Gabriela’s living conditions. I visited Gabriela at her apartment as often as I could and I tried to make these visits appear as casual as possible. I always checked out her fridge (usually when Gabriela was out of the room for a while) to make sure food was stored safely, nothing was past its expiration date, and if the food was fresh. After throwing away anything that was not OK I could clearly see if there was enough food. This was a key indicator as to whether the caregivers were doing their job.
I also cleaned Gabriela’s apartment not just because I was a helpful mom but because it allowed me to see what was not getting done and let me look in every nook and cranny. I would also ask Gabriela about what she had done during the days when I hadn’t seen her, encouraging her to give me as much detail as possible about who the staff was, where they went, how they got there, and what was discussed.
This was how I eventually found out that the staff and case manager needed a tremendous amount of direction because it turned out that they were just “hanging out” and Gabriela wasn’t learning how to live a truly independent life. As a result I produced a weekly schedule assigning tasks to each staff that needed to be accomplished with Gabriela during their shift. This included meal planning, laundry, cleaning specific rooms, and cooking.
We felt that Gabriela’s first case manager was poorly trained in how to handle a client with her medical condition and the developmental delays it had caused so we looked for a more professional agency with better-trained management team and staff.
We started interviewing candidate providers to see if we and the provider fully understood each other’s concerns and requirements. We also wanted to know what type of training each of the staff was required to complete. What was the availability of the management should there be a situation that arose the required attention? What was their process of dispute resolution between staff and client or case manager and clients? How were medications handled? How were doctors’ appointments handled? Who dealt with housing concerns, social security, and Medi-Cal?
I know it sounds overwhelming but in reality it’s actually very achievable. Gabriela now is almost completely self-maintaining. She still has a few issues like staying on a budget but that’s pretty normal for a 24-year old. She lives in an apartment with a roommate, participates in her community, and is just about to finish school.
It’s been a rough couple of years for both of us and I’m often asked what made me stick to it so relentlessly. My answer is simple; Gabriela would have done the same for me.