Interviews

“La Gente de Arriba.” The People Upstairs. That is how I originally referred to the handful of employees who work on Polibea’s second floor. They make frequent appearances downstairs with the clients and therapists. At first, I didn’t know what exactly their role was. La Gente de Arriba don’t have color-coded shirts like the rest of us (purple – occupational therapy, red – physical therapy, maroon – speech therapy, etc.).

María TS takes this dress code freedom and runs with it. Every day, she is dressed in a graphic tee, tucked into a ¾ length skirt, with canvas sneakers. Her outfit consists of all matte colors. Except for her bright yellow water bottle, labeled “María TS.” “TS” for trabajador social, or social worker. And to clarify which María, because there’s eight other people with the same name working at Polibea.

While I had sent along a list of prepared questions, I asked first if María had a specific place she wanted to start. She opinioned that to wrap my head around the system and Polibea’s place in it, it was best to start by looking at how Spain attends to individuals with brain injury.

***

El Sistema Sanitario (Health Service) and El Sistema Social (Social Services) are two of the pillars that make up El Estado de Bienestar (Welfare State) in Spain. The former oversees the acute phase hospital stays. The latter (to which Polibea belongs) is responsible for everything that happens afterwards. The problem is, she says, these two do not communicate. Therefore, when someone leaves the hospital, they are unaware of where they can go for long-term support.

Even more, these two services are monitored separately by the 17 autonomous regions and 2 autonomous cities in Spain. This is evidenced by a reference guide put together through an investigation by La Federación Española de Daño Cerebral (FEDACE). The 244-page document describes the different service delivery methods between each region.

And even if the policies on paper may appear similar, this is not always true in practice. For example, the Escala de Dependencia, (Scale of Dependency) which determines the amount of services and financial supported allotted to an individual, is used across all 19 communities. However, its scoring and administration varies. In other words, someone may receive a score of 3 (highest level of dependence, most financial support) in one region, but a score of 1 (lowest level of dependence, least financial support) in another.

When asked to clarify, María noted that this is not just the case for people with brain injuries. Rather, this lack of communication and oversaturation plague attention to all chronic diagnoses.

What does La Escala de Dependencia look like? Who scores it?

When looking for governmental support to help cover the costs of rehabilitation services (unless you can pay about 2.500€/month out of pocket), an individual must request an assessment through La Escala de Dependencia. The law says that you must receive a response within 6 months, but sometimes people wait longer.

The evaluators, at least in Madrid’s autonomous region, are mostly social workers. María notes that this makes little to no sense. Social workers, she explains, are trained to teach people how to navigate public resources. Their job comes in when the individual knows what they need but doesn’t know how to get it. Looking at peoples’ functional abilities, their physical environments, their support networks, and how that impacts their daily lives – that’s what occupational therapy does. Yet few occupational therapists fill this position.

Many people cannot afford to pay for services out of pocket. To begin rehabilitation, they must wait months until their examination. Meanwhile, it is well established that neuroplasticity (in short, the brain’s ability to recover and re-learn after injury) is at its highest in the first 3 (some studies say up to 6) months (Coleman et al., 2017, Zeiler, 2019).

What happens after the test?

First, María says, it is important to note that the test is based mostly on motor, not cognitive, deficits. I immediately think of my focus while here – communication challenges – and just how much of a disadvantage this process puts them at.

After the test, there are two methods of financial support than the individual may be granted. The first, la plaza pública, also called la plaza concertada. This is where an individual is given 3 years of services, paid in full by the region. María says it is near impossible to get one of these spots unless you scored a 3, the most dependent. After those 3 years, you must apply again to see if your spot will be renewed. However, the state has a waiting list of people that can fill the spot.

The other option is the cheque del servicio, monthly payments one can receive based on their level of need – which is calculated with both La Escala de Dependencia and one’s financial capacity (See full chart at end of this summary).

What information do individuals receive at the hospital?

Though the resources may be there, they are not well known, nor easy to find. When someone is in the hospital, they have the option to request a meeting with the social worker. However, María gets calls every day to Polibea that point out the flaw in this system:

Una llamada super habitual, a very common call, she receives begins with “Hola, alguien en mi familia ha pasado un daño cerebral, no sabemos lo que debemos hacer.” Translated, “Hello, someone in my family has suffered a brain injury, and we don’t know what to do.” María asks the family if they had the chance to speak to the hospital’s social worker about their options. The most common response? That it was listed, but they didn’t know what it was nor how it could help their situation.

She adds that even if the family had spoken to someone, the resources discussed would depend completely on the regional connections of that particular social worker, as there is no central network. For the most part, people find Polibea’s number porque la gente habla unos con otros, through word of mouth.

María notes that in cases of very severe deficits, the individual may receive some rehabilitation services immediately following their acute care stay. The governing body of El Sistema Sanitario has contracts with a few private centers, with limited spots.

What would the ideal solution be?

In an ideal world, María says, the doctor would note in the patient’s documentation that the individual could benefit from meeting with a social worker. Then the social workers would know which room to go to. It would be near impossible for the one or two social workers at a hospital with hundreds of patients to sift through each file, to see who may need their help. By adding a single checkbox to the evaluation form, the doctors could alert the social workers to whom they should visit.

And why do you think that hasn’t happened?

“In my personal opinion,” María says, “Because it doesn’t interest them. Because there aren’t enough resources for everyone. Because doctors have the philosophy of ‘I saved their life, my work here is done.’” She adds that “In a saturated system such as this, you don’t treat someone as an individual. There’s no time to spend with the family. And why would you alert someone to limited resources?” [Translated]

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Towards the end of the interview, conversation turned back towards Polibea. One question that I’d had since Day 1 pertained to el registro (documentation). I’d rarely seen therapists sit down and document what they were doing. I loved the individual attention this enabled therapists to have with each client, the relationships this attention built.

Despite there often being six or seven people in the frequent group sessions, or three clients sharing a single room with their respective therapists for individual treatment, the people here were receiving a quality of care that simply didn’t exist at one of my fieldwork sites, and is hard to find in the United States in general:

As was the case at my former site, and a common occurrence within the United States, a 100% productivity demand destroys patient care. I regularly witnessed therapists furiously typing behind a screen while clients were strapped to a machine. Many students are expected to do the same to meet their fieldwork requirements.

At my other fieldwork site, therapists’ laptops were nowhere near the therapy session. However, therapists sacrificed their lunch time, and much of their personal time at the end of the day, to get documentation in within 24 hours of contact.

How could Polibea’s services continue to be paid, if therapists were attending to the client throughout the session, and enjoying each other’s company over lunch? María TS (the social worker) confirmed what María TO (my mentor, and head of the occupational therapy department) had answered me with before – I could just hardly believe it at the time.

Technically, the last 10 minutes of each session are dedicated to documentation. I have never seen this happen. Not once. Therapists at Polibea always use the full hour for treatment. What with set-up, take-down, and getting the client to the next session, no therapy would actually occur if they did not use dedicate the full hour. Even if therapists miraculously had 10 minutes at the end of each session to document, I don’t know where they would do so. Speaking for occupational therapy, there’s three desktops, and eight therapists. And the Wi-Fi doesn’t work unless you’re sitting in a specific corner of the physical therapy gym.

To put it briefly, the payment system in Spain does not require constant justification, as does the system in the United States. In Polibea’s case, that second pillar, el estado social of the Community of Madrid, comes and inspects operations twice a year. As María TO explained, they may glance over clients’ Planes de Atención Individualizado (PAI), to see changes summarized in progress charts. They by no means read daily documentation thoroughly. María TS confirmed. Importantly, this inspection is only for clients with a plaza pública, or cheque de servicio. Clients paying privately can keep paying as they see fit.

I asked if Polibea could run on the income from private payers alone. I was surprised to learn that the majority of the center’s income is from the state. For this reason, it is very difficult to run a private rehabilitation center where plazas públicas and cheques de servicio aren’t excepted. There simply wouldn’t be enough funds to keep the place afloat.

Public & Private

This biannual inspection system has its pros and cons. On the plus side, it allows for quality time with patients, and a familial sense between therapists who actually have time to talk to one another. On the downside, there is little to no incentive to progress one’s practice, to do anything differently than one is currently doing as you will still be paid the same way.

And of note, that payment is little to nothing. My first night here in Madrid, I was talking to two occupational therapists. One currently practicing, and one who had switched careers to manage three bakeries under a larger local chain. Both advised, “Have a wonderful time in Madrid. You’ll learn so much. Then take those lessons and go work elsewhere. It’s fruitless to come work here.” They said that the average occupational therapist here makes as much money as they would if they worked at Walmart, about 1.000€/month. The bakery manager explained that she had switched careers so she could afford to be a single mom.

I ask María TS what she thinks about Spain’s current rise in private healthcare options. She described that the real issue with the public system is that it’s not well organized. Just as there’s no incentive for practitioners to continue to adapt and improve their practice, there’s no incentive to make the health institutions themselves proactive and efficient.

What has become more common are private hospitals that are then contracted by their respective autonomous regions. María TO has told me that if anything were to ever happen to me, she would take me to her hospital, which runs this way. The three or four therapists around us at the time agreed whole-heartedly.

As María TS put it, the business model approach that the private (and governmentally contracted) centers have brings out good management and efficiency; the lack of this is precisely that which she had begun our interview with – poor communication between public domains greatly hinders adequate treatment for individuals with chronic diagnoses.

Privacy

The last topic we covered was another that had been on my mind since my first few days at Polibea, the privacy allotted to each client. From what I’d witnessed during my time so far at Polibea, therapists use client’s names with ease, and speak of their diagnoses and situations in front of other clients. This is quite the opposite of what I have experienced in the United States, where the Health Insurance Portability and Accountability Act (HIPAA) is placed above all else.

In previous conversations with María TO, she confirmed my observation that in Spain “es muy cotilla, y somos una gran familia,” translated “It’s very nosy, and we’re a huge family.” I’ve seen this firsthand – Polibea has much more of a familial sentiment than any healthcare setting I’ve been to in the United States. The open conversation happens in group sessions as well as individual sessions. Given the limited space, individual sessions often take place in the same room as another individual session; sometimes three client-therapist pairs share a room.

I asked María TS what she thinks of the sharing status quo. She was quick to tell me that she is not a proponent of this approach. She wishes there was a greater sense of privacy. María TS attributes the dynamic to a few factors. First, the general character of a Spaniard, “Somos habladores, extrovertidos.” “We’re talkers, extroverts.” The minimal space, she notes, also makes privacy quite difficult. I ask her if this is just Polibea’s environment, or a more common scene in healthcare. She’d never worked at another health facility, but she has worked in immigration. María tells me it was the same there but encouraged me to talk to other therapists who have worked in different healthcare settings.

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This interview made me think of my PICo question again, the TedTalk by Anna Rosling Ronnlund, and Jacqueline Novogratz’s The Blue Sweater.

In both the privatized system of the United States, as well as the welfare state of Spain, the system is saturated. People who are experiencing great fear, grief, and uncertainty are not receiving adequate attention. In both Spain and the United States, if one has enough money, they can pay to travel between autonomous regions or states. In Spain, they can jump the que and receive services while another spends the first six months after a brain injury (again, the most important for rehabilitation gains) sitting at home, waiting for a spot. In the United States, they can hop on a plane and receive the services they want elsewhere, while another sits at home, with no alternative.

I by no means think this is just. But I also don’t know what to do about it. Thoughts, questions, comments, concerns? Please feel free to contact me, my email is at the bottom of the page.

Coleman, E. R., Moudgal, R., Lang, K., Hyacinth, H. I., Awosika, O. O., Kissela, B. M., & Feng, W. (2017). Early Rehabilitation After Stroke: a Narrative Review. Current atherosclerosis reports, 19(12), 59. https://doi.org/10.1007/s11883-017-0686-6

Zeiler S. R. (2019). Should We Care About Early Post-Stroke Rehabilitation? Not Yet, but Soon. Current neurology and neuroscience reports, 19(3), 13. https://doi.org/10.1007/s11910-019-0927-x