Housing

*** The empty boxes represent unknown and uniqueness of each individual and their situation. There are many scenarios that aren't outlined. We do not have all the answers.

Meet Matt. Matt sustained a head injury when he was 16 years old. After his injury, he lived at home with his father. Matt struggles with regulating his emotions and frequently becomes overstimulating resulting in anger and sometimes aggression. His behaviors became too much for his father to handle so he kicked him out of the house. Matt resorts to living in a shelter. While in the shelter, Matt sustains another head injury and ends up in the hospital. He receives the necessary medical treatment. Upon preparing for discharge, he meets with the hospital case manager who informs him that if he does not have anywhere to go upon discharge, he will be put into a residential care facility. At 19 years old, Matt's only choice for discharge is a nursing home where he is 30 years younger than any of the other residents, his daily existence is regimented, and rehabilitation is non-existent. There is no discharge plan or action which facilitates Matt moving towards a level of independence and a way of living he would choose if he had the opportunity. For example, how would you feel if you had to ask permission to watch your favorite TV show? Or to make a phone ? Or smoke a cigarette? Imagine if you had to earn the right to go take a walk. What would your quality of life be like? How would you feel if you were Matt? What resources are available to Matt? What choices does he have?

Things to consider: According to federal Medicaid requirements, “institutions” are residential facilities that assume total care of the individuals who are admitted (Medicare.gov). Examples of the institutions (or RCFs) include skilled nursing facilities, assisted living facilities, group homes, and adult foster care. These institutionalized care settings are designed to provide care to older adults at the end stages of their lives, with the average age of admission being 83 (Bigby, Webber, & Bowers, 2008). Not only does this put these individuals in a community around people that are outside of their age norms, but the stagnation and restrictive nature of the setting diminishes empowerment, autonomy and motivation resulting in dependence, with one study referring to the nursing home as an 'existential prison' (Dwyer et al. 2017).

Meet Anna. Anna sustained a brain injury while rock climbing with her friends. After being in a coma, she finally wakes up but she is 100% dependent on others for care. She is discharged from the hospital to live with her very loving and supportive parents. Anna’s parents decide that they are both going to take a step back from their full time jobs to care for Anna. Her parents are in their early 60s. They do not come from a medical background and know very little about brain injury (other than what they have learned since her injury). Anna cannot be left alone without fear of her safety being put in jeopardy. Because of her brain damage, she struggles with executive functioning tasks such as initiation, judgment, problem solving, and impulsivity. After 4 months of caring for Anna, her parents are burnt-out. They report feeling depressed, fatigued, and overwhelmed by taking care of Anna. What resources/support are available to support her parents?

Things to consider:

Caregiver burnout is the degree of distress experienced by caregivers that is caused by changes in their lives resulting from caring for an individual with a brain injury (Everhart, Nicoletta, Zurlinden, Gencarelli, 2019). Caregivers can be a spouse, family member, friend, or professional. Caregivers have the potential to experience legal (financial/medical decisions), physical (assistance with ADLs/IADLs), psychological (social isolation), and economic (financial deprivation) stressors as a result of the caregiving burden. Informal (i.e. unpaid) family caregivers experience high rates of burnout, depression, fatigue, anxiety, lower subjective well-being, and poorer levels of physical health compared to non-caregivers (Kreitzer, Kurowski, Bakas, 2018).

Meet Rachel. Rachel sustained brain damage when she was deprived of oxygen during birth. Rachel spent her entire life living with her mother. When Rachel’s mother passed away, she did not want Rachel to have to ever worry about having a place to live so she set up a financial trust to support Rachel living in the house. This covers any necessary maintenance or bills on the home. While this provides security for Rachel, it has increased her dependency on her sister in law because Rachel is unable to manage the property (i.e home maintenance, lawn care, pay bills on time). Rachel is now 52. As Rachel has aged, her physical mobility has declined. Recently, Rachel has been falling more frequently and during her latest fall she was on the ground for 3 hours before a neighbor happened to stop by and found her on the ground. Rachel is very attached to her home and doesn’t want to move. Not only because it is her mothers, but because it is the place where she has spent her entire life. Rachel does not have the insight to see that her current living situation is unsafe or capacity to problem solve ways to make the home suit her needs. What options does Rachel have? Who does she call if she needs help? How can Rachel live independently safely?

Things to consider:

We take for granted many of the necessary skills used in activities necessary to live independently. Things such as instrumental activities of daily living (IADLs). This includes financial management, home management (maintaining and repairing personal possessions and environments such as home, yard, appliances, etc), meal preparation, shopping, and more (OTPF 4th ed.). Deficits in executive functioning (attention, higher-order thinking, judgment, reasoning, etc) are common following a brain injury. Impairments with executive functioning are noted to have a direct impact on the individual with a brain injury’s ability to return to activities of independent living including employment, money management, driving, and maintaining a residence (Perna, Loughan & Talka, 2012).

According to the Social Security Administration, the maximum federal payment amount in 2022 is $841/month. The average in Oregon is $794. The average fair market rent for a studio apartment in Oregon is $992/month. If they are unable to work and don’t have an income, how might someone on Social Security benefits afford to live independently?

Meet Seth. Seth had his first head injury at 21 years old when he was hit head on by a drunk driver. Because of his brain damage, he struggles with poor judgment and difficulty with follow through. Seth does not have any family or friends to support him so he has moved around from state to state trying to find a job that suits his needs and that he can sustain. After multiple job failures, Seth has no other option but to start living out of his car. While living on the streets, Seth gets attacked and sustains another head injury. What now?

All of the situations outlined are based off of real life people and their struggles. The names and aspects of the stories have been changed to ensure privacy for them and their families.