Complementary, Alternative, and Mainstream Service use Among Families with Young Children with Multiple Disabilities: Family Costs to Access Choices

Abstract

Families raising a young child with multiple disabilities are charged with significant responsibilities such as learning about their child's condition and navigating mainstream and alternative services. Aim: Describe service choices, costs, out of pocket expenses, and the impact on families. Methods: Survey design using a custom questionnaire was used to collect extensive retrospective and current data. Purposive sampling (N = 29) occurred from one early intervention facility specialized in servicing children with cerebral palsy (CP) and, or multiple disabilities in Australia. Descriptive statistics were used for analysis of data. Results: Twenty-three (79%) families reported caring for a child with CP. Twenty-three families reported using at least one complementary/alternative intervention. Out-of-pocket amounts were reported including: chiropractic services (10 families); naturopathy (9 families); point percussion therapy (7 families), and Chinese medicine (6 families). Expenses resulted in families reporting forgoing clothing items, family entertainment, recreation/hobbies for parents (55%); family holidays (59%); time for parents alone (66%); and health services for parents (38%). Conclusions: Families of young children with multiple disabilities select a wide range of services for their child, with consequential out of pocket expenses. Early intervention professionals can be an important resource for families as they evaluate their choices and select interventions for their child.

F‐words e ingredientes de las intervenciones tempranas dirigidas a niños no ambulantes con parálisis cerebral: Una revisión exploratoria

“…49 Varios estudios abordaron esta F-word (familia) mediante diseños de estudio cualitativos o de métodos mixtos 39,41,[50][51][52][53][54][55] ya que estos pueden ser los más adecuados para capturar factores personales que son difíciles de medir con herramientas estandarizadas. La presión económica que supone el cuidado de un niño con necesidades complejas puede dar lugar a decisiones de no utilizar otros servicios para las necesidades sanitarias, recreativas y educativas de los padres dentro de la familia, 54 lo que puede suponer una gran carga para la familia a largo plazo. Las familias quieren recursos y desean recibir un diagnóstico temprano con mensajes honestos y redactados de forma positiva.…”

Enabling the Exercise of Choice and Control: How early Childhood Intervention Professionals may Support Families and Young Children with a Disability to Exercise Choice and Control in the Context of the National Disability Insurance Scheme

“…with an agreed course of action to be followed by both the family and the ECI professional (Bellon & Maurici, 2014;Block, Rosenverg, Ganther-Kellar, Rees & Hodges, 2002;Bourke-Taylor, Cotter & Stephan, 2015;Breihan, 2007). However, although choice is a key principle inherent in the new policy context of the NDIS, this does not necessarily guarantee the availability of authentic choice.…”

“…Choice and control is reliant on families having knowledge to make informed decisions about service provision that meets their goals, aspirations and circumstances. ECI professionals act as a 'resource', providing specialist expertise, knowledge and skills to families as they evaluate and select their choices (Bourke-Taylor et al, 2015). As school transition projects in New South Wales (NSW) have found, resources and information provided by ECI professionals assisted families to identify goals and supports for their child (NSW Government, 2015;Walker et al, 2012).…”

A Family Education Intervention for Parents Having Children with Multiple Disabilities during COVID-19

“…One of the difficulties is the lack of systematic expert support for them and their children (Wang & Michaels, 2009). In addition, their children's lack of motivation for learning (Eldeniz Çetin & Sönmez, 2018), insufficient family activities and consequently missed learning opportunities (Axelsson et al, 2013), insufficient knowledge of families to strengthen their child's skills (Majnemer et al, 2013) and parents' diminished hope of becoming a family (Bourke-Taylor et al, 2015) are other difficulties that can be listed. It is thought that families who have these difficulties before the COVID-19 period might feel inadequate on some issues and might be in need of education and support to fulfil their responsibilities during the pandemic evermore.…”