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Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist. The World Health Organization (WHO) describes palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual." In the past, palliative care was a disease specific approach, but today the WHO takes a more broad approach, that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness.
Supportive housing is a combination of housing and services intended as a cost-effective way to help people live more stable, productive lives, and is an active "community services and funding" stream across the United States. It was developed by different professional academics and US governmental departments that supported housing. Supportive housing is widely believed to work well for those who face the most complex challenges—individuals and families confronted with homelessness and who also have very low incomes and/or serious, persistent issues that may include substance use disorders, mental health, HIV/AIDS, chronic illness, diverse disabilities or other serious challenges to stable housing.
Developmental disability is a diverse group of chronic conditions, comprising mental or physical impairments that arise before adulthood. Developmental disabilities cause individuals living with them many difficulties in certain areas of life, especially in "language, mobility, learning, self-help, and independent living". Developmental disabilities can be detected early on and persist throughout an individual's lifespan. Developmental disability that affects all areas of a child's development is sometimes referred to as global developmental delay.
Long-term care (LTC) is a variety of services which help meet both the medical and non-medical needs of people with a chronic illness or disability who cannot care for themselves for long periods. Long term care is focused on individualized and coordinated services that promote independence, maximize patients' quality of life, and meet patients' needs over a period of time.
Residential care refers to long-term care given to adults or children who stay in a residential setting rather than in their own home or family home.
Early childhood intervention (ECI) is a support and educational system for very young children who have been victims of, or who are at high risk for child abuse and/or neglect as well as children who have developmental delays or disabilities. Some states and regions have chosen to focus these services on children with developmental disabilities or delays, but Early Childhood Intervention is not limited to children with these disabilities.
Deinstitutionalisation is the process of replacing long-stay psychiatric hospitals with less isolated community mental health services for those diagnosed with a mental disorder or developmental disability. In the late 20th century, it led to the closure of many psychiatric hospitals, as patients were increasingly cared for at home, in halfway houses and clinics, in regular hospitals, or not at all.
A group home is a residence model of medical care for those with complex health needs. Traditionally, the model has been used for children or young people who cannot live with their families or afford their own homes, people with chronic disabilities who may be adults or seniors, or people with dementia and related aged illnesses. Typically, there are no more than six residents, and there is at least one trained caregiver there 24 hours a day. In some early "model programs", a house manager, night manager, weekend activity coordinator, and four part-time skill teachers were reported. Originally, the term group home referred to homes of 8 to 16 individuals, which was a state-mandated size during deinstitutionalization. Residential nursing facilities, also included in this article, may be as large in 2015 as 100 individuals, which is no longer the case in fields such as intellectual and developmental disabilities. Depending on the severity of the condition requiring one to need to live in a group home, some clients are able to attend day programs and most clients are able to live normal lifestyles.
Respite care is planned or emergency temporary care provided to caregivers of a child or adult.
Patient advocacy is a process in health care concerned with advocacy for patients, survivors, and caregivers. The patient advocate may be an individual or an organization, often, though not always, concerned with one specific group of disorders. The terms patient advocate and patient advocacy can refer both to individual advocates providing services that organizations also provide, and to organizations whose functions extend to individual patients. Some patient advocates work for the institutions that are directly responsible for the patient's care.
La Rabida Children's Hospital is a small pediatric specialty hospital for extended acute care that caters to children with lifelong medical conditions. Located on the South Side of Chicago on Lake Michigan, the facility is designed to showcase its lakeside views. La Rabida serves approximately 9,000 children annually who require primary and specialty care to address complex and challenging medical conditions. The hospital provides care to all patients regardless of the family's ability to pay. Services and programs include treatment for chronic illnesses such as asthma, diabetes, sickle cell disease, and developmental disabilities. In addition, La Rabida specializes in the treatment of children who have been abused, neglected or experienced trauma.
Chai Lifeline is a chesed organization founded in 1987 by Rabbi Simcha Scholar to help families with "children battling a deadly disease."
The Louisiana Department of Health (LDH), formerly known as the Louisiana Department of Health and Hospitals, is a state agency of Louisiana, headquartered in Baton Rouge. It is Louisiana's largest state agency with a budget of $15 billion and approximately 6,300 personnel. The agency oversees the health of the population under its current secretary, Dr. Courtney N. Phillips.
In the United States there are approximately 50 million people who are caring at home for family members including elderly parents, and spouses and children with disabilities and/or chronic illnesses. Without this home-care, most of these cared for would require permanent placement in institutions or health care facilities.
Pediatric psychology is a multidisciplinary field of both scientific research and clinical practice which attempts to address the psychological aspects of illness, injury, and the promotion of health behaviors in children, adolescents, and families in a pediatric health setting. Psychological issues are addressed in a developmental framework and emphasize the dynamic relationships which exist between children, their families, and the health delivery system as a whole.
Family support is the support of families with a member with a disability, which may include a child, an adult, or even the parent in the family. In the United States, family support includes "unpaid" or "informal" support by neighbors, families, and friends, "paid services" through specialist agencies providing an array of services termed "family support services", school or parent services for special needs such as respite care, specialized child care or peer companions, or cash subsidies, tax deductions or other financial subsidies. Family support has been extended to different population groups in the US and worldwide. Family support services are currently a "community services and funding" stream in New York and the US which has had variable "application" based on disability groups, administrating agencies, and even, regulatory and legislative intent.
Children with Special Healthcare Needs (CSHCN) are defined by the Maternal and Child Health Bureau as:
As of 2017, approximately 1.4 million Americans live in a nursing home, two-thirds of whom rely on Medicaid to pay for their care. Residential nursing facilities receive Medicaid federal funding and approvals through a state health department. These facilities may be overseen by various types of state agency.
Nicholas Hobbs was an American psychologist and a past president of the American Psychological Association (APA).
The United States has experienced two waves of deinstitutionalization, the process of replacing long-stay psychiatric hospitals with less isolated community mental health services for those diagnosed with a mental disorder or developmental disability.
References
When the Prescription is Home Care Time Magazine, June 4, 2007.
Child Magazine's Children's Champion Awards: Local Hero: Margaret Mikol Child Magazine, November, 2003.
Knoll, James A. Come Together: The Experience of Families of Children with Severe Disabilities or Chronic Illness Human Services Research Institute, Cambridge, MA. September, 1989.
Stillerman, Elaine Margaret Mikol and SKIP Real Savvy Moms
United Hospital Fund Provides $502,000 in Grants to Improve City's Health Services United Hospital Fund, November 22, 2005.
Cummings, Betsy Home Front; Illness Strikes, and Insurance Falls Short The New York Times, May 2, 2004.