Moving towards empowering professional practices
Just as care for people with neurodiversity has evolved over time, so too has care for their families, not only in terms of its conception, but also regarding the role they should play in relation to the professionals who support them.
"Training as a process, quality of life as a result ." Turnbull, AP
This change of role to which we refer implies ceasing to conceive of families as mere recipients of services or as an extension of professional teams and promoting a collaborative relationship, that is, a relationship of equals, where both parties recognize each other: families as experts in the neurodiversity of their sons and daughters and professionals as experts who must put their knowledge at their service so that they feel increasingly competent and have a greater sense of control over their lives.
This way of supporting families, which seems so easy, is a challenge for any professional, as it involves a paradigm shift , that is, a change in our mental models (ways of thinking and doing things), our beliefs (the meaning we give to things) and our values (the principles we have and how they drive us to act) in relation to the type of support we are offering to families with children with neurodiversity.
We talked about the need to review and analyze our professional practices , our attitudes and behaviors, and whether all of this is truly aimed at giving the family its rightful place by sharing power and co-creating together the best solution to meet their needs.
We must promote an equal relationship, where both parties recognize each other: families as experts on the neurodiversity of their sons and daughters, and professionals who must put their knowledge at their service.
Family-centered practices
Family-centered practices aim to empower families by addressing their unique circumstances, highlighting their strengths, and trusting their choices . We must provide all the necessary information so that families can participate, express their opinions, and make their own decisions throughout the entire process, from the initial intake and assessment phase to the transition to other services (Guralnick, 1997), even if these decisions do not align with our own ideas of what would be best for them. In fact, one of our obligations is to provide families with all the information they need to make informed decisions and understand the consequences.
Family-centered practices, according to Leal (1997):
- It views the family as a social support system.
- It recognizes the importance of the family life context in the development of individuals, that is, to enhance learning in natural environments where the person's life takes place.
- It focuses on the strengths and resources of families, not on what they need to learn to do to improve.
- She believes that families can develop their strengths and increase their feelings of capability by providing them with information and training so that they can be the protagonists of their own lives.
- It involves other family members as active participants in the intervention.
- It empowers and enables the family to function effectively in its environment.
In fact, evidence indicates that family-centered practices achieve better results for both families and the neurodiverse child (Davies, 1995).
These results stem from the fact that these practices are geared towards supporting families so they can act effectively within their environment, the place where opportunities arise, knowledge is shared, and interactions with significant people occur—in other words, the place where life unfolds. The more family-centered the approach, the more likely it is that families will develop their strengths through supportive practices (rather than focusing on correcting their weaknesses), thereby gaining greater self-control and decision-making power. Ultimately, the approach builds upon families' strengths and resources to help them achieve their own goals (Leal, 1999).
Supporting and guiding families after an autism diagnosis
Family-centered practices are characterized by:
- Family training to strengthen family capacities, providing training and collaboration and supporting them in the search for strategies to meet their needs (Dunst and Trivette, 1994).
- Transdisciplinary teamwork, where professionals from different disciplines work together, diachronically, in unison and transversally, alongside the family throughout the intervention process (Mikus, Benn and Weatherston, 1994).
- The development of an individualized family support program, that is, an "agreed contract" in which professionals together with the family specify the intervention planning (Briker, 1996).
- An intervention that strengthens learning or development opportunities in the natural environments of the neurodiverse person. Attention should be paid to the person's natural environments to generalize learning (Dunst, Bruder, Trivette, Raab, & McLean, 2001).
- A collaborative relationship. A positive professional-family relationship, governed by respect for the skills, resources and aspirations of families, where power is balanced and recognizes the expertise of both parties (Little et al, 2001; Saleebey, 1996).
This last component of the model is one of the main challenges we have as professionals since until now we have assumed an expert role, that is, we are the ones who have the power and decide on the best options for families.
We must provide all the necessary information so that the family can participate, give their opinion and make their own decisions throughout the entire process, from the initial reception and assessment phase to the transition phase to other services.
How to promote family-centered practices?
According to Giné (2017) there are three models among professionals who are dedicated to the intervention, care and advice of families with children with neurodiversity, based on different interaction styles.
- The psychotherapeutic or expert model , focused on the deficit and on how the expert person tells the family what their son or daughter needs to improve, how the intervention will be developed, what the objectives are to work on, where and when to apply them, etc.
- The training model , where families must acquire knowledge to continue working at home as an extension of the professional person.
- The model of collaboration with families, where the professional contributes their knowledge and life story to maximize the performance of the child or young person and their family.
The collaborative model is a style of interaction that goes beyond implementing new assessment tools and instruments, developing individual plans, and going to the person's context; rather, it refers to how we offer a quality professional service, how we support families to make choices and participate, and how we build relationships with the environment and with ourselves.
Making daily life easier for people with functional difficulties
Providing a high-quality professional service requires ongoing training and professional development, not only to improve our professional practices but also as a matter of professional ethics. Until now, academic training has focused on learning about child development, but we haven't been equipped to work with their families, which requires knowledge of how adults learn. Fortunately, families are becoming increasingly informed and educated, and they are questioning current professional practices by seeking reliable evidence.
Regarding what participatory family-centered practices should be like, we refer to including behaviors that actively involve family members in:
- Informed choice and decision making.
- The use of existing strengths and skills, as well as the development of new capabilities needed to obtain resources, support, advice, etc.
These practices also include our responsiveness and flexibility in the way we provide help to children and their families (Dunst, 2011).
And finally, with regard to what family-centered relational practices should be like , we mean including the values, beliefs, and attitudes we have about family and cultural strengths, values, and attitudes, as well as our sensitivity to these beliefs and values as part of our intervention practices.
This interaction style is based on behavior oriented towards effective clinical practice that includes, among others, compassion, active and reflective listening, empathy, humility and effective communication, which are the competencies most valued by families (Blue-Banning, M., Summers, JA, Nelson, LL & Beegle, C., 2004).
To support families so that they can act effectively within their environment, a place where opportunities are generated, where they interact with the most significant people, and where life happens.
It is clear that the style of interaction we establish with the family will affect the outcome of the intervention. Therefore, it is not only necessary for us to receive training and stay up-to-date, but we must also review how we promote family participation and the type of relationship we establish with them.
Manuals for professionals on decision-making support for people with disabilities
In this way we will move towards family-centered practices that promote (Dunst, 2011):
- Strengthening the relationships between families and professionals, as well as involving them in family support programs.
- Family involvement in the learning and education of their sons and daughters must be judged as significant (valuable) to maintain their commitment.
- The ability to respond to the informational, instrumental, or other needs of primary caregivers is a factor that contributes to promoting meaningful participation in interventions.
- The feeling of self-efficacy is a determinant in promoting the participation and commitment of primary caregivers, with positive benefits for the interaction between sons and daughters and fathers and mothers.
For this reason, it is urgent that we, as professionals, incorporate into our interventions the knowledge, experience, daily life and environment of the families, in order to have a greater impact on improving their quality of life.
The investment of a developmental professional should not focus on interacting with the individual for a brief moment, as the impact on their learning will be practically nil. Therefore, as Giné (2017) indicates, it is necessary to move towards a collaborative relationship with the family , since the individual with developmental difficulties is surrounded by a family context where their relationships take place and where their development unfolds. Thus, if we involve the family by giving them the opportunity to participate actively (remember that they are the experts on their children), what they can contribute—such as their beliefs, their way of interacting, and their life story—will be key to the intervention's success.
Despite the challenges involved in implementing this model, we want to convey that it is worthwhile to experience how families, with our collaboration, begin a whole training process that leads them to become the protagonists of their own lives.
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