Family-centered practice is considered the “gold standard” of practice for children with developmental disabilities and their families in health care, education, mental health, and social service systems and the relevant disciplines that provide services within these systems. It involves not simply collaborating with families but collaborating with families in ways that empower them in their role as decision maker. Allen & Petr (1998) identify among the core elements of family-centered practice “informed choice”. The element of choice is a core concept that is widely accepted in conceptualizations of family-centered practice.
Barry Prizant (2008) summarizes the key elements of authentic family-centered practice:
"Family-centered practice has as its primary goal, empowering families with the knowledge and skills to make the best choices for their child and for the family. In family-centered practice, professionals collaborate with families in decision-making about specific goals and objectives, as well as educational/treatment approaches. Parents are respected as experts regarding their child, and professionals consider each family's unique strengths and needs, as well as its cultural and religious values."
There are a number of factors families of children with autism spectrum disorders (ASD) should consider when selecting treatment options for their child. Among those I believe are particularly important for families to weigh are the following: (a) the goals or intents of the approach and whether those goals match the long-term and short-term needs of the child and family; (b) whether the philosophy of the approach respects and honors children’s individual differences, interests, and passions and families' culture and beliefs; (c) if the focus is on supporting and enhancing the child’s current capabilities and facilitating growth rather than changing the child in a fundamental way; (d) whether the approach is likely to support and strengthen the family's relationship with the child or if it could be counterproductive to this; (e) whether any methods that might be used with the child could potentially be aversive; and (f) if the approach is fully attuned with presuming competence and respecting the child's neurodiversity. Treatment approaches, or for that matter, providers, vary considerably in meeting these criteria. Thus, it’s critical that parents are able to access complete information on treatment approaches and it’s equally important that multiple treatment/intervention options are available to children and families. It's also important to note that children with ASD often have needs that may require multiple therapies and treatment modalities and that needs change over time as the child develops. Even if a treatment approach has been helpful at one stage of development new or additional areas of need may emerge for which supplementary or alternative approaches are necessary. When information about potential options is withheld, incomplete information is provided, or information is provided in a biased manner, or agencies, organizations, or systems seek to limit the treatment options available this represents neither individualized intervention nor family-centered practice.
Practices of professionals, organizations, and service systems are relatively easy to categorize as to their family-centeredness. When it comes to the provision of services for children with ASD we see the following practices all too frequently and in many states and locales in the US these are the prevalent practices:
The practices described above clearly do not represent family-centered practice. I have also observed initiatives and efforts around the US that do provide real options to families and children with ASD and other developmental disabilities. Examples include providing a pool of flexible funding which parents can directly access to pay for services of their choice such as consultations, evaluations, treatment, or supports; incorporating treatment options (e.g., DIR/Floortime, SCERTS, TEACCH) into children’s IEPs or IFSPs, and ASD insurance legislation that allows insurance payment for a range of treatment options beyond ABA services. Policymakers embracing family-centered practice and informed choice should also adopt policies that support training for practitioners in evidence-based intervention approaches and capacity building to enable schools and programs to provide multiple intervention approaches. This is particularly crucial for ensuring equal access of underserved and rural communities. I call upon all professionals, policymakers, agencies, and service systems to fully embrace family-centered practice and create greater flexibility and access to a range of treatment and support options for all families of children with ASD and other developmental disabilities.
Allen, R. I., & Petr, C. G. (1998). Rethinking family-centered practice. American Journal of Orthopsychiatry, 68(1), 4-15.
Biesta, G. (2007). Why “what works” won’t work: Evidence-based practice and the democratic deficit in educational research. Educational Theory, 57(1), 1-22.
Prizant, B. (2008). Treatment options and parent choice: An individualized approach to intervention. Autism Spectrum Quarterly, 4, 34-37.
Prizant, B. (2011). The use and misuse of evidence-based practice: Implications for persons with ASD. Autism Spectrum Quarterly, 15, 43-49.
Rycroft-Malone, J., Seers, K., Titchen, A., Harvey, G., Kitson, A., & McCormack, B. (2004). What counts as evidence in evidence-based practice. Journal of Advanced Nursing, 47(1), 81-90.
Barry Prizant (2008) summarizes the key elements of authentic family-centered practice:
"Family-centered practice has as its primary goal, empowering families with the knowledge and skills to make the best choices for their child and for the family. In family-centered practice, professionals collaborate with families in decision-making about specific goals and objectives, as well as educational/treatment approaches. Parents are respected as experts regarding their child, and professionals consider each family's unique strengths and needs, as well as its cultural and religious values."
There are a number of factors families of children with autism spectrum disorders (ASD) should consider when selecting treatment options for their child. Among those I believe are particularly important for families to weigh are the following: (a) the goals or intents of the approach and whether those goals match the long-term and short-term needs of the child and family; (b) whether the philosophy of the approach respects and honors children’s individual differences, interests, and passions and families' culture and beliefs; (c) if the focus is on supporting and enhancing the child’s current capabilities and facilitating growth rather than changing the child in a fundamental way; (d) whether the approach is likely to support and strengthen the family's relationship with the child or if it could be counterproductive to this; (e) whether any methods that might be used with the child could potentially be aversive; and (f) if the approach is fully attuned with presuming competence and respecting the child's neurodiversity. Treatment approaches, or for that matter, providers, vary considerably in meeting these criteria. Thus, it’s critical that parents are able to access complete information on treatment approaches and it’s equally important that multiple treatment/intervention options are available to children and families. It's also important to note that children with ASD often have needs that may require multiple therapies and treatment modalities and that needs change over time as the child develops. Even if a treatment approach has been helpful at one stage of development new or additional areas of need may emerge for which supplementary or alternative approaches are necessary. When information about potential options is withheld, incomplete information is provided, or information is provided in a biased manner, or agencies, organizations, or systems seek to limit the treatment options available this represents neither individualized intervention nor family-centered practice.
Practices of professionals, organizations, and service systems are relatively easy to categorize as to their family-centeredness. When it comes to the provision of services for children with ASD we see the following practices all too frequently and in many states and locales in the US these are the prevalent practices:
- One size fits all service system that offers no funding or access to real intervention choices (e.g., developmental approaches as well as behavioral, range of therapies including music, art, dance, etc. as well as OT, speech, PT).
- Professionals or agency administrators who cannot see beyond their own paradigm of practice and therefore limit the information or options discussed with parents. Whether motivated by sincere belief in a particular philosophy, the convenience of referring to a limited group of service providers, or financial factors this cannot be regarded as informed choice.
- Professionals who make a standard recommendation for treatment (e.g., “40 hours of ABA”) without ever questioning the “standard”, informing themselves about the research that supports their recommendation, seeking the actual lived experiences of individuals who have received the prescribed treatment, or fully understanding the implications of children’s individual differences and needs and families’ preferences and choices for selecting among treatment options.
- State service systems that build services around the treatment approaches favored or practiced by some practitioners while excluding or creating a firewall around other methods or models. This situation continues to be perpetuated even when newer or emerging research indicates potential benefit to children from the “out” methods thus depriving children and their families of the opportunity to benefit from these treatment approaches. In some instances the barriers created to prevent families from being informed of and accessing other methods not only exclude the “out” practitioners but financially benefit the “in” practitioners. Often this situation is further maintained by overly restrictive definitions of evidence-based practice which have been criticized in multiple disciplines (e.g., Biesta, 2007; Prizant, 2011; Rycroft-Malone et al., 2004).
The practices described above clearly do not represent family-centered practice. I have also observed initiatives and efforts around the US that do provide real options to families and children with ASD and other developmental disabilities. Examples include providing a pool of flexible funding which parents can directly access to pay for services of their choice such as consultations, evaluations, treatment, or supports; incorporating treatment options (e.g., DIR/Floortime, SCERTS, TEACCH) into children’s IEPs or IFSPs, and ASD insurance legislation that allows insurance payment for a range of treatment options beyond ABA services. Policymakers embracing family-centered practice and informed choice should also adopt policies that support training for practitioners in evidence-based intervention approaches and capacity building to enable schools and programs to provide multiple intervention approaches. This is particularly crucial for ensuring equal access of underserved and rural communities. I call upon all professionals, policymakers, agencies, and service systems to fully embrace family-centered practice and create greater flexibility and access to a range of treatment and support options for all families of children with ASD and other developmental disabilities.
Allen, R. I., & Petr, C. G. (1998). Rethinking family-centered practice. American Journal of Orthopsychiatry, 68(1), 4-15.
Biesta, G. (2007). Why “what works” won’t work: Evidence-based practice and the democratic deficit in educational research. Educational Theory, 57(1), 1-22.
Prizant, B. (2008). Treatment options and parent choice: An individualized approach to intervention. Autism Spectrum Quarterly, 4, 34-37.
Prizant, B. (2011). The use and misuse of evidence-based practice: Implications for persons with ASD. Autism Spectrum Quarterly, 15, 43-49.
Rycroft-Malone, J., Seers, K., Titchen, A., Harvey, G., Kitson, A., & McCormack, B. (2004). What counts as evidence in evidence-based practice. Journal of Advanced Nursing, 47(1), 81-90.
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