Resident Profile: Robert's HOPE Home Helps Him Stay Healthy in a Supportive Community Setting
Robert in front of his HOPE home in Long Beach.
At its core, HOPE is an organization that desires for people with intellectual and developmental disabilities (I/DD) to live their best lives. Each person residing in a HOPE home has their own personality, passions, and dreams. However, like everyone else in the community, they also have their own challenges and barriers to overcome. HOPE resident Robert is 57 years old and has epilepsy. He has experienced seizures since the age of three that have negatively affected his health and at times have made it more difficult for him to accomplish his goals. But he is more than the seizures that have interrupted his life since childhood. Robert is a lovable and caring person who likes to help other people. However, he has found that if he doesn't manage his epilepsy, he cannot be present for the people he cares about. Research shows that there is a strong connection between having access to safe, stable, and affordable housing and experiencing positive health. In this way, HOPE is proud that we are able to support Robert in his journey toward living his best life.
A seizure is a sudden surge of electrical activity in the brain. There are about 3.4 million people with epilepsy nationwide. Many people with I/DD experience seizures and require additional support to access the healthcare services they need. According to the National Institute of Health, epilepsy is a common developmental disability that causes medical and social challenges that can be compounded by limited access to healthcare for adults. Without safe and calming environments, the onset of seizures can be more frequent.
People have misunderstood Robert all of his life because of this disability. Many people do not understand epilepsy, what causes a seizure, or how to respond when a person has an episode. There are different types of seizures depending on the area where a seizure starts in the brain. Robert experiences psychomotor seizures in the brain's temporal lobe, and he appears either awake or has impaired awareness. He also experiences absence seizures that begin on both sides of the brain, causing a lapse in attention or manifesting as Robert staring off into the distance. These symptoms are often mistaken as him daydreaming.
Throughout his life, accessing safe and stable housing has been a challenge for Robert. This instability has had a significantly negative impact on his health. Robert has lived between healthcare facilities, hospitals, board and care homes, group homes, and other institutional settings. He has also tried to live in his own market-rate apartments.
On the subject of physical safety, Robert believes he has experienced the challenges of living in a community that lacks knowledge about seizures. In 2007, Robert was living in a studio apartment in Long Beach. He describes the neighborhood as an environment where he felt not many people understood much about epileptic seizures. In one incident, a woman on the street accused him of something that he attests was a misunderstanding based on his epilepsy. Robert believes that the woman called the police. Due to increased stress from that encounter, he experienced a seizure while interacting with the police which resulted in his arrest.
At times, the public and law enforcement can misinterpret a seizure-related health crisis for aggressive behavior or resisting arrest. Recent examples of this in the media include a man who was arrested after having a seizure in his car while driving on the highway and a 16-year old boy with autism who was handcuffed while experiencing an epileptic seizure in a restaurant bathroom.
For Robert, this reality required him to think about how his healthcare and housing needs relate to his physical safety. He had to consider the neighborhood environment and the people around him. Because he has epilepsy, he needs to be in a community where people understand how to identify if a person is experiencing a seizure and know what to do to help.
Later in his life, Robert lived in a licensed group home in Bellflower for over ten years. He explains that he always had someone beside him in this housing, which limited the activities he was allowed to do alone. Back then, he knew that he preferred to keep himself busy and manage his own schedule, but that was not the environment that he found himself in. "I had to explain to people that they had to be calm and gentle with me and speak slowly. Otherwise, if I get too nervous or overwhelmed, it could raise my blood pressure and trigger a seizure." He reports that during this time, he had seizures regularly.
In 2019, Robert moved into one of HOPE’s supportive housing along Redondo Avenue in Long Beach, CA.
This licensed group home had more residents living there at any one time than Robert was comfortable. Additionally, each housemate had their separate supported living staff members. People would be walking in and out of the home constantly, and it made it difficult for Robert to have his own space where he felt he could keep his schedule and accomplish his day-to-day activities in privacy. Throughout this period of his life, his stress levels would often elevate when there were too many people around him or too many programs he was mandated to attend. It made it difficult to keep his seizures under control. "I felt less motivated to do things on my own when I was surrounded by staff members all day." Robert decided he needed to increase his independence to better manage his health.
That is when he began working with his Harbor Regional Center Service Coordinator to transition to HOPE Supportive Housing. In October of 2019, he moved into HOPE on Redondo in Long Beach, California. Our Supportive Housing model provides residents with individual units and access to broader supported living services from staff working out of dedicated, onsite offices but not inside of the unit. These homes are designed for people interested in moving from housing models with more rules and restrictions on tenant decision-making, such as 24-hour residential care homes, institutions, or hospitalized settings.
HOPE, Inc. is improving our residents' physical and mental health by ensuring they have access to safe, well-maintained, and affordable homes that best meet their specific needs. Our goal is to create opportunities for individuals to live with greater self-reliance and financial stability, freeing up resources and time to engage in healthy activities and pursue personal goals. Robert confirms that living in his HOPE home has helped keep his blood pressure down which allows him to be less nervous. This contributed to better managing his seizures and overall health.
Robert is now able to make his own schedule. He goes to his doctor's appointments independently. Robert takes care of his hygiene – and he can do so any day of the week and any time of the day. He manages this healthier lifestyle: takes medication independently, goes grocery shopping for healthy ingredients, and coordinates his transportation. He is now making better friends and has neighbors with whom he feels he can be his loveable self. He is reading and watching TV when he decides. He performs his chores, like going to the bank, on his own. Most importantly, Robert is proving to himself that he is a more responsible person.
For him, it is the little things. Because he only has one housemate, he enjoys the freedom of walking around his home more often and resting wherever he needs to. He still has a service provider who drops in and helps him with his meals. But the combination of greater independence and the correct level of supports has benefitted his life dramatically and contributed to him experiencing fewer seizures.
"In my current living situation, I am responsible and independent enough to go where I need to go, like when I see my doctor twice a week. I can make appointments when I need to without relying on others. But it still helps to have staff nearby, just in case I need extra support. It makes all the difference for me." His doctor says that Robert living in his HOPE home has improved his safety net and ability to take better care of his medical needs. Robert is currently working with his HRC Service Coordinator to set up onsite nurse visits to ensure his seizures remain under control.
Robert poses in his home. Robert’s living room is a safe, shared space with his house-mate.
This past year of living in his HOPE home has brought him more peace of mind, respect from others, and time for himself. When asked what the word "home" means to him, Robert responded, "A home is a place where neighbors or housemates watch out for each other. They can help in case something should happen." Robert remembers when he experienced a seizure and almost hit his head against a window. Thankfully his housemate came to his aid.
HOPE is so glad that we could play a part in Robert's success in increasing his health by providing the most appropriate housing option to meet his needs. When it comes to managing his seizures, Robert has advice for others going through similar challenges. He encourages them to surround themselves with people they can trust because even he knows he can't solve every problem by himself. He also encourages people to offer support to others. He tells anyone reading his story, "If you need to learn how to live a good life, you can talk to me, I can help you out."
One of the most effective ways to help people with developmental disabilities remain healthy is to fund affordable housing organizations like HOPE, which create homes that give more opportunities for people with I/DD to live with independence while receiving the levels of support they need to thrive. Donate at: http://www.hope-homes.org/ways-to-give/donate/.