In-class activity materials: The de Sousa Family (read before class)

Your worker is assigned a medical neglect case in which Joseph de Sousa , aged 12, is the identified client. He has juvenile onset diabetes and his parents are charged with not managing his diabetes well. The case was called in by Joseph's primary care physician after Joseph was admitted to the hospital due to going improper management of his medicine. Your worker notes that his sister Ana, aged 10, also lives in the house, and has not been attending school during Joseph's hospitalization. The family are first generation Portuguese immigrants from the Azores islands and have pictures of their island Faial Links to an external site., on the wall of the apartment. Notes from the response team indicate that the parents, Alphonse and Maria, seem "slow" and your discussion with the workers reveals their views that the parents are considered "not the brightest lights." Further, the notes indicate that Ana behaves "like a parentified child."

Joseph is being held in the hospital and your worker is tasked with assessing the home to determine if he can return to the home under supervision of the Department instead of being placed in foster care. The response team has already determined that Alphonse and Maria are estranged from their families, so there are no kinship resources available for placement. In your worker's telephone call with Alphonse to arrange for the home visit, they notice that he has a hard time keeping the chosen date and time clear in his head.

When your worker arrived at the door of the de Sousa's apartment, they noticed a stench emanating from behind the door. As they entered the apartment, which was dark due to plywood boards being nailed over all of the windows, they noticed that cockroaches were scattering everywhere across the floor. The worker reported trying for a friendly tone as they casually asked about why the plywood has been nailed over the windows. The mother, Maria answered "to keep the bad people out." When the worker asked whether bad people have been in the house, Maria said "they have not, but they easily could be, just watch the news. We know how to protect our children" The worker reported that their eyes began to adjust to the dark room as they engaged in conversation with Alphonse, Maria and Ana. Votive prayer candles with religious imagery are burning in several parts of the room. Your worker notices that some of the symbols on the candles come from the Pentecostal church, suggesting a possible source of emotional support for the family. Your worker also reports reports that each member of the family seems to be un-showered, with significant body odor.

Your worker tells you that Ana was the person who welcomed the worker to the home and guided them through the house to show each room. The house was in significant disarray, and was extremely dirty, with empty liquor bottles gathered in one corner of the bedroom. They report seeing several dead mice as they walked through the apartment. They report that there are only two beds in the apartment. Ana is reported to have said "Daddy and I sleep in one, and Mommy and Joseph sleep in the other." You make a note to have your worker explore this further as soon as possible. Ana is also reported to have commented that her family "lives in humble conditions but loves one another very much, just ask our minister." Ana also shared that the family attends a local Pentecostal Church which your worker knows to be one that involves high stakes snake bite faith testing. Upon further conversation, your worker learns that the family is closely connected to the church, which consists of Azorean immigrants, and it sounds as though this is in lieu of a family connection.

Your worker reports that once she began talking to Alphonse and Maria about Joseph, the love they have for their son was readily apparent. When asked about what they know about Joseph's health condition, they provided a basic, but clear statement of what diabetes is all about. Your worker reports that at one point, Maria excitedly grabbed her hand at one point and drew her  over to the kitchen, saying "I know just what to feed Joseph to keep him well, I'll show you!" She had then opened the refrigerator which was stuffed with approximately 30 packages of boneless, skinless chicken breasts. "You can't do deep frying for Joseph!" Maria said proudly, "you have to do it the healthy way! I learned it at my Saturday class at the hospital." With some coaxing from your worker, Maria had explained that she was part of a Parent to Parent Links to an external site. support group to learn how to best support children with special health care needs. Your worker tells you, though, that Alphonse interrupted the conversation saying "Maria, I still want my Peri Peri Chicken deep fried with the crunchy batter on the outside like we used to do - I don't care what Joseph needs, I'm the father of the family and I should get the food I want!" Your worker also tells you that Ana was mortified at this exchange and tried to distract her father.

In reviewing the situation with the Alphonse and Maria, your worker got them to agree to the idea of a cleaning service helping them to regain control of the apartment. They refused the idea of working with an in-house family coach. They also refused to sign release forms for you to speak with the Parent to Parent program nor would they allow the Department to get in contact with their minister. They seemed in shock at the idea that Joseph might not come home to them when your worker explained that the court would be making a decision about what will be happening regarding his discharge, reportedly stating "we are his parents, we get to decide what happens to him after all. We don't want you in our lives anymore after today - you are nothing but trouble!" 

As you listen to your worker, you think that while you can see some promise in Alphonse and Maria's parenting capacity, you will end up making a recommendation for placing Joseph in temporary foster care as you do not think he will be safe at home. As it turns out, the court barely listens to your worker's recommendation because the Judge states that she doesn't think any parent with intellectual or developmental disabilities has the right to parent given all the termination of parental rights statutes that exist for that diagnosis across the country. Decision in hand, you and your worker sit with the family outside the courtroom and try to help them take in what has happened, although they are clearly not really interested in sitting with either of you. "I hate you!" Aphonse says to your worker, a dark-skinned Latinx/Hispanic woman, "this is all your fault." This is a challenging way to begin the next few weeks' work in which your worker will have to engage the family on getting the apartment cleaned up, as well as build on the family's capacity to support Joseph's dietary and medical needs. Once back in the office, your worker vents her frustration at "always having to work with these retarded parents! Why are they allowed to have babies anyway? It's so irresponsible! They come to this country and now they are going to live off the system!"

Fast forward six months. Other than an industrially-cleaned apartment that now has the plywood removed from the windows, your worker hasn't made much progress with Alphonse and Maria. She has confirmed that both parents have a diagnosis of intellectual and developmental disabilities. They take a lot of time to work with on her monthly visits, the waiting list for the parenting class for parents with intellectual and developmental disabilities is a mile long and your worker really doesn't know what else to do. To make matters worse, Joseph has been placed an hour and a half a way in a medical foster home - the closest one available. To their credit, the family makes their weekly visits like clockwork, navigating the subway, train and a bus to get to the foster care agency in a different county. Things seem to be humming along with everything going well enough- Joseph is healthy, the visits are fine, the house is clean - you think "we just need to get the parents some services and everything will be fine enough - good enough parenting, right?" And then disaster strikes. You get a call in the office one afternoon from the foster care agency - Alphonse, Maria and Ana have kidnapped Joseph from their visitation room during their weekly visit. You are certain that they will be found soon - how far could they go? Indeed, they are soon found in their home apartment. When asked why they took Joseph from the visit, they were allegedly told "It is the Festas do Espírito Santo*, he can't miss the parade, it only happens once a year! We kept telling the worker, but she didn't listen to us."

*Each year in Portuguese communities, especially those with an Azorean background, there are held Festas do Espírito Santo (Festivals of the Holy Spirit). They involve a parade with some dressed up paraders carrying baskets of bread on their heads, the crownings of queens of the festivals and a community meal in each community. Prominently displayed during each festival is a crown topped with an image of a dove. This festival is usually held on Pentecost Sunday, the seventh Sunday after Easter, but could be held on any Sunday between Easter and Pentecost Sunday.

As a supervisor or manager, how will you support your worker with the following after the initial meeting and initial court date?

A) Assisting the worker in being reflective and reflexive about any potential bias related to ableism she/he/they may have with or without being aware of it

B) Addressing the structural ableism present in the case situation

C) Assisting the worker in being culturally competent and responsive case practice with the family

As a supervisor or manager, how will you support your worker with the following after the abduction situation?

D) How will you be alert for ableism NOT to be a factor in this situation?

As a supervisor or manager, how do you incorporate the principles of disability practice in your work related to this case situation?

E) Community inclusion

F) Self-determination

G) Nothing about us without us

H) Circles of support

I) Dignity of risk

J) Interdependence

How does this case situation further inform your thinking about data--what you have access to, what you might need, and how it could be utilized in your practice as a supervisor/manager?