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Access to Care
Published in Inge B. Corless, Zelda Foster, The Hospice Heritage: Celebrating Our Future, 2020
The third criterion is location of patient. There are many patients with underlying mental illness or developmental delays who develop a terminal illness. These include patients with mental illnesses, genetic illnesses, addiction disorders, and personality disorders. This special population may live in group homes, halfway houses, or mental institutions. These patients lack good access to routine medical care, let alone access to the specialized services needed for the care of person with a terminal illness. With the onset of an incurable disease, the patients may experience beneficent neglect and not be referred to any agencies that could offer assistance.
Behavioral and Research Influences on Educational and Clinical Programs
Published in Norman S. Giddan, Jane J. Giddan, Autistic Adults at Bittersweet Farms, 2020
To go further, some worry that a farmstead community will isolate itself. There is always danger that a community will isolate itself, but that is true of a group home, an individual family or individual people. An even greater danger is the deterioration of the quality of the program, a loss of staff, a diminished commitment of those who actually carry over the program day-to-day. There may be a lack of leadership or a lack of support from the community. There are so many ways in which a program like this can flounder, and isolation is only one. It is, of course, an oversimplification to think that isolation is not likely to occur almost anywhere else that we deal with autistic and handicapped people.
Support of siblings
Published in Jo Clark-Wilson, Mark Holloway, Family Experience of Brain Injury, 2019
Jo Clark-Wilson, Mark Holloway
The first story is of Eliza, who was in her late teens when her younger sister Frances (both of whom were adopted) sustained a severe brain injury in a road traffic accident. Frances was aged 17. Eliza’s parents provided care for Frances in their home for the following 9 years without any assistance, apart from occasional visits from a Social Worker. Eliza’s parents supported Frances to move into her own flat nearby on two occasions, but she could not manage independently, flooded the flat and had to return to the parental home. When I first became involved it was clear that Frances lacked insight, had poor executive functioning, high levels of anxiety and agitation, and limited appreciation of risks. She was highly responsive to negative influences in her environment. Eliza’s parents were under extreme stress due to Frances’ behaviour towards them (constant unreasonable demands, directed verbal abuse, and control of their environment). Frances moved out again, this time with additional input from support workers, but this care regime also broke down. She was admitted, under Section, to a specialist unit for rehabilitation. Further attempts have been made since then to support Frances in a specialist residential setting, a community group home and in her own home with varying degrees of support, but nothing has proved permanently successful to date.
Moving into new housing designed for people with disability: preliminary evaluation of outcomes
Published in Disability and Rehabilitation, 2023
Jacinta Douglas, Dianne Winkler, Stacey Oliver, Stephanie Liddicoat, Kate D’Cruz
Group homes are currently the predominant model of housing and support for adults with disability and complex needs [8]. In this model of housing up to six people with disability are co-located in a single residence; they have little or no say in where they live, who they live with, and are often separated from the community, with few opportunities for community engagement and participation [4,6] Limited consideration is given to the social compatibility between residents; individuals with challenging behaviours are often placed in group homes with four or five other people [9]. Although group homes aim to resemble suburban homes, the structure of residents' daily lives is largely determined by staff rosters, routines, and priorities. In the group home model, residents are commonly treated as service users or recipients of care [4,10], and therefore no inherent drivers exist to foster independence and reduce paid supports over time [11].
Nursing Home Residents’ Relocation to Another Facility: an Exploratory Study of Family Caregiver Experiences
Published in Journal of Gerontological Social Work, 2022
Emma D. Quach, Megan B. Mccullough, Chris Gillespie, Christine W. Hartmann
Family caregivers are a key source of care to individuals living with dementia (National Alliance for Caregiving, 2015). In the US, as many as 16 million family caregivers provide assistance (e.g. help with daily activities of living and psychosocial supports) to older adults with dementia (Alzheimer’s Association, 2019). Caregiving typically lasts an average of 4 years, although 25% of caregivers provide care for more than 5 years and 15% provide care for 10 or more years (National Alliance for Caregiving, 2015). Often, family caregivers continue their care activities even after their family member moves into a residential care facility (Graneheim et al., 2014; Kong, 2008), such as small-group homes with no nursing care, assisted living facilities with limited nursing care, and nursing homes with 24-hour nursing care. Family caregiving for a relative with dementia living in a residential care facility is an important but relatively under-studied area of family caregiving.
Disability, Aging, and the Importance of Recognizing Social Supports in Medical Decision Making
Published in The American Journal of Bioethics, 2021
Kevin T. Mintz, David C. Magnus
Institutionalization can also contribute to higher levels of self-reported social isolation. One study found that individuals with intellectual disabilities living in intermediate care facilities and Medicaid waiver-funded group homes with more than 7 residents reported feeling more lonely or isolated than those living in their family’s home or smaller community-based settings. The researchers hypothesize that this finding is associated with a greater level of individual choice over one’s living conditions in family-based or smaller group settings (Stancliffe, Lakin, Taub, Chiri, and Byun 2009). For older patients, living in a nursing home is associated with increased social isolation and loneliness, both predictors of adverse health outcomes for residents (Simard and Volicer 2020). The Covid-19 pandemic has only exacerbated the extent of social isolation for people with intellectual disabilities, especially those who are institutionalized (Navas et al. 2021; Simard and Volicer 2020).