Helping Families Raise Children With Special Health Care Needs at Home

Abstract

ABSTRACT. One goal of Healthy People 2010 is to reduce the number of people with disabilities in congregate care facilities, consistent with permanency-planning principles, to 0 by 2010 for persons aged 21 years and under (objective 6 -7). Congregate care, in this regard, is defined as any setting in which 4 or more persons with disabilities reside, regardless of whether the residence is located in the community, such as a school, group home, nursing facility, or institution. Although this particular public health objective may reflect an unfamiliar concept for some pediatricians, the American Academy of Pediatrics supports the goals and objectives of Healthy People 2010 as well as the medical home and the provision of community-based, culturally effective, coordinated, and comprehensive care for children with special health care needs and their families. To advise families caring for children with special health care needs effectively, the pediatrician should be familiar with the principles of permanency planning and well informed of local familysupport services. The pediatrician should also work with the family to identify the range of long-term supports and services available for their child. These supports may include respite for biological families as well as various additional parenting models such as shared parenting, foster care, alternate parents, and adoption. Although family-based supports are preferable, families may consider other out-of-home placements including group homes, placement in a nursing facility, or other forms of institutional care when sufficient family-based services are not available. Once all the options are understood, issues regarding quality of care can be individualized and judged by the parent or guardian, in close collaboration with the pediatrician and other professionals with expertise in permanency planning and long-term supports and services.The purpose of this clinical report is to educate physicians on the philosophy of providing a permanent family environment (permanency planning) for all children, including those with special health care needs, and the importance of adequate and accessible community services to support and maintain the well-being of all family members. Pediatrics 2005;115:507-511, children with special health care needs, family support, permanency planning, special-needs adoption, deinstitutionalization, medical home, foster care, Healthy People 2010, transition, self-determination.

Impact of Pediatric Critical Illness and Injury on Families: A Systematic Literature Review

“…16,17 SIGNIFICANCE Commonly, primary care pediatricians supervise the care of children with multisystem residual disability, activity limitations, and technology dependence. 18 Children with complex regimens of care and multiorgan system disability are returned to the care of their families and medical home providers after an ICU stay, too often with alarmingly little provision for support. 19 This integration of children with disability and special health care needs into general pediatric practice is expanding as the population of disabled children grows.…”

Home-based palliative care: challenges in the care of technology-dependent children

“…É importante, pelo contrário, que este amplo programa seja parte integrante de um paradigma que crie condições de mudanças no modelo de cuidados prestados, buscando, por exemplo, diminuir o isolamento social em que se encontram essas crianças e suas famílias e que possa oferecer os tratamentos mais pertinentes dentro de critérios de razoabilidade em cada caso concreto. Espera-se também que crie condições para amparar as intensas demandas dos familiares, sobrecarregados e desgastados, inclusive com significativas perdas materiais e financeiras 16,19,[34][35][36][37][38] .…”

Cuidados paliativos no domicílio: desafios aos cuidados de crianças dependentes de tecnologia

“…The program is also expected to set up conditions to support strong demands by overwhelmed and worn out parents, including significant material and financial losses. 16,19,[34][35][36][37][38] …”