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From hospital to home: John and the Acosta family

John and the Acosta family

 

"Until you are in that situation, you don’t realize there is not much out there and
you can’t plan for it. John being in a home was not part of our parents’ plan, or the route we wanted to take but you have to be open to change your mind. We all wanted what was best for John to lead a self-fulfilling life."
- Isabelle, John’s sister

 

Who is John?

The Acosta family forms a tight-knit clan. They have always looked out for each other, especially for their younger brother, John.  John, 50 years old, is autistic and has an intellectual disability. He is incredibly outgoing, sociable and full of love for his three siblings. John has a great sense of humor and often has everyone around him laughing. He is respectful, kind and compassionate. In his free time, you can find John enjoying the company of family and friends, watching sports, bowling, going to the movies and playing soccer. John was living at home with his mother in a large city in Ontario before he was hospitalized in September 2022 and became an ALC patient. He spent two months in hospital before moving to a private transition home paid for by his family.

 

What led to John’s hospitalization?

When the COVID-19 pandemic started, John’s regular day program was shut down, and that affected him tremendously. His mental state started to deteriorate. In March 2022, John’s father passed away, which led to a rapid decline in his mental health. He started to experience intense fear, phobias and anxiety, and his behaviour at home became increasingly aggressive. This situation became unsafe for both John and his mother. By September 2022, things became so challenging that John ended up in the emergency department though he was sent home without being admitted. One week later, because things were no better, he returned to the emergency department and was subsequently admitted to a mental health unit for two months.

 

What were the challenges hindering John’s return to the community?

John was seen by the inpatient psychiatrist who made adjustments to his medication, but his distress and aggression continued. After being hospitalized for two months, the hospital determined that John no longer needed treatment.  John’s family was told that he needed to leave the hospital and that if they couldn't take him home, they would discharge him to a shelter. The family was shocked at the thought of John being placed in a shelter without appropriate care. Moving back home with his elderly mother was not a viable option so they scrambled to find an alternative solution. 

A couple of meetings were held with the hospital social worker, in-patient psychiatrist, family doctor and his developmental services caseworkers. With the assistance of John’s developmental caseworkers, the family managed to find a temporary placement at a private transition home. However, this home was located an hour away from where the family lived and they had to pay an exorbitant cost of $18,000/month. John stayed there for three months.A meeting being held with a hospital social worker, in-patient psychiatrist, family doctor and his developmental services caseworkers gathered around a table at the hospital.

 

"With no outpatient plan in place, no transition team from the hospital and no
funding available to support him in transitioning into a home, we were trying to
find ways to survive through instability and fear.”
– Susan, John’s sister

 

How did things change for the better for John?

The Acosta family was determined to find the right forever home for John. They wrote letters to their government representatives and to the Ontario Ombudsman, the organization responsible for investigating complaints about government and public sector bodies. In these letters, they explained what had happened to their brother and advocated for increased support not only for John but also for other people like him who are stuck in hospital with no safe and affordable home to transition to.  They asked for help from two local specialized developmental services organizations to find him a permanent, affordable placement. Both organizations were very supportive in actively searching for housing options for John. Finally, after three months in the private transition home and with collaborative effort from the family and the two community organizations, they were able to secure a permanent placement.

How is John doing post-transition?

John now lives in a publicly funded group home located close to his family, with five housemates who are also autistic and have intellectual disabilities. Since moving into his home, John is happy and progressing well. His phobias and obsessions have decreased and he is able to focus and redirect his thoughts with help from staff. He has resumed his daily routines, including attending a new day program. 

John watching television with his five other housemates on a couch in his group home.

John is most happy about the wonderful friendships he has made with his housemates as well as all the great support staff. His family could not be more happy and relieved about his current living situation. John’s transition was supported by a specialized developmental service provider team and they continue to provide support as needed. John’s health and mental health are also supported by his family doctor and psychiatrist. The support from the incredible staff has ultimately been the most important factor in his successful transition. For the Acosta family, however, the fight is not over. Together with their extended family, they have established a charity with the goal of raising awareness about ALC care issues and empowering adults with autism and mental health challenges to overcome barriers and reach their full potential.

 

“Finding his forever home would not have been possible without the incredible
support received from our caseworkers at the developmental service agencies.
They were always there for us, every step of the way, providing insights,
empowering and educating us. Together with the staff at the home, we
collaborated and worked in partnership to find a suitable home for him. We
shared the same goal and vision – for him to be settled in a home where he
would be cared for and have the opportunity to lead a fulfilling life.”
– Maria, John’s niece

 

What key components helped with John’s hospital-to-community transition?

 

John's successful transition from hospital to community was facilitated by several crucial elements. These elements align with some of the 10 core components identified in the practice guidance document.
 
Component 1 - Ongoing information sharing - The Acosta family had regular meetings with the specialized developmental service provider teams, which accelerated the process of finding John a permanent home. Although there were several meetings with the hospital social worker and his community caseworkers, it was unfortunate that a more consistent process was not put in place while he was in the hospital. It was ultimately the caseworkers who diligently searched for and found a home for John.
 
Component 3 - Patient and family involvement in transition planning - John's family was actively involved in John’s care and in searching for and vetting housing options for him. This is important as he now lives close to his family so that they can continue to be very involved in his life.
 
Component 7 - Medication review and support – John has a family doctor and psychiatrist who, along with input from the specialized developmental service provider team, have been actively managing his medications while living in the community.
 
Component 8 - Coordinated follow-up medical and clinical care - John’s long time family doctor continued to follow him and provide the family support throughout his hospitalization. Since moving into his new home, John is being seen by a new family doctor who supports everyone in the home and he also has a new psychiatrist supporting him in the community. Throughout the transition process, John was also supported by a specialized developmental service provider team and they continue to be available as needed to provide support.
 
Component 9 - Appropriate and timely housing and community support - Although it took some time to put in place, John now resides in a publicly funded group home, carefully selected to cater to his needs and preferences, and located in close proximity to his family. The environment, alongside his compatible housemates and dedicated staff, has helped to significantly reduce his phobias and obsessions, allowing him to regain a sense of belonging and comfort.
 
Component 10 - Sufficient and flexible funding - The cost of private housing was prohibitively expensive for his family and was not a sustainable option. Securing a publicly funded home that was appropriate to meet his needs was a critical factor in allowing John to continue living in the community.

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