Tuesday, March 22, 2022

The Social Construct of "Needing" Services


I’m so stupid that I studied for the Covid test.

If you test positive for Covid, you need to quarantine. If you test positive for cancer, you need to get radiation or chemotherapy—although you can opt out. If you break a leg, you need to be in a cast.

If your child has Down syndrome, she does not need occupational therapy (OT), physical therapy (PT), and speech-language pathology (SLP; as it’s known in the United States). Needing a service in early intervention birth-5 is a social construction. A professional (especially a pediatrician), an organization, or an advocate might declare that a diagnosis presupposes a service. Oddly, pediatricians rarely say the child needs early intervention or early childhood special education. The prevalence of the therapies points to a medical-model mindset.

In fact, the Individuals with Disabilities Education Act (IDEA) stipulates that the decision about services should be made by the IFSP or IEP team—not by a doctor outside that team. Now, the doctor might make the recommendation that can trigger insurance paying for the therapy, outside IDEA. But simply because a doctor recommends or even prescribes therapies does not mean the EI/ECSE system needs to provide it. This system is not medicine.

Back to the concept of needing a service. The help the primary service provider (PSP) and the family need is what Carl Dunst would call the value-added benefit to business as usual. No professional is expected to have all the knowledge and skill that might be needed to help a child and family. Therefore, we expect the PSP might need the assistance of other professionals. Therefore, in a functional, caregiver-capacity-building approach, where children learn throughout their daily routines, the expertise of therapists, including EI/ECSEs, depends on how much help the primary service provider (PSP) and the family need.

The competence, confidence, and experience of the PSP determine largely how much help they (singular they) need from other specialists. The diagnosis alone does not determine the so-called need for a service. An infant with Down syndrome, exhibiting no delays, does not necessarily need the four major services, EI/ECSE, OT, PT, and SLP, at the same rate (e.g., weekly). A professional from one of these disciplines, willing to address the whole child and family, can work with the family regularly, using other specialists as needed. Again, the diagnosis does not determine services.

A multidisciplinary approach, in which different specialists provide therapy within their scope of practice, leaves out those family needs that don’t fall neatly within those scopes, such as babysitting, sibling relationships, transportation, tantrums, picky eating, and independent play. The PSP looks at the whole child and family, and many of their needs fall between the cracks in a multidisciplinary approach.

A further disadvantage of the multidisciplinary approach is the potential for conflicting advice from professionals. For example, one professional might encourage the parent to use decontextualized modeling (e.g., “ba-ba-ba”), and another professional might discourage that very strategy, instead promoting using the initial-b sound in everyday interactions (e.g., “baby,” “ball,” “bye-bye”).

The PSP principle runs counter to the intuition of many advocates and certainly medical profession. If you have cerebral palsy, of course you should have physical therapy. From a functional perspective, if the environment (e.g., activities, routines, physical environment, equipment) supports the functioning of the child, then additional services might not be required. Unquestionably, PTs are helpful and often necessary, with their skills and knowledge. But one cannot say we need them, if functioning is going well and the resources caregivers have are adequate. Viewing disability from the perspective of the International Classification of Functioning, Disability, and Health of the World Health Organization, participation in the activities of the environment is the key determinant of how “disabled” a child is. Therefore, our focus should be on maximizing the child’s opportunities for engagement in everyday routines, regardless of the child’s diagnosis.

Professional organizations might not agree, but they nor anyone else has provided evidence that the spectrum of a diagnosis warrants a particular service. Instead of focusing on services, we should focus on learning opportunities, especially those (a) occurring in natural routines, (b) related to children’s interests, and (c) those related to caregivers’ interests and family functioning. What early intervention professionals can do is the following:

·        Assess what’s going on in everyday routines, including what children and adults like to do at each time of day;

·        Help caregivers see the value of following their child’s lead as the source of responsive (i.e., incidental) teaching;

·        Join families in coming up with ideas to promote children’s engagement, independence, and social relationships in the routine; and

·        Seek the expertise of other professionals to help this process, as needed.

I have often said you cannot take a child’s temperature with a thermometer and say, “This child needs X therapy this many times a week.” Clinical judgment and social construction are tantamount to the same thing. Deciding on services based on a diagnosis is a judgment, not an evidence-based practice.

For example, a child with autism spectrum disorder does not automatically need occupational therapy or discrete-trial training. In fact, the literature shows, for example, that sensory integration and discrete-trial training, out of context, are ineffective. Yet, consumer parents and advocates might argue that the ASD diagnosis gives the child the “right” to certain services. Instead, we need to look at the child’s functioning in home, school, and community routines; the skills and knowledge of the child’s caregivers in those environments; and the competence and confidence of the child and family’s primary service provider. Children can receive more intervention when natural caregivers incorporate the intervention into everyday routines than when professionals administer the interventions in therapy sessions.

When considering the cost and benefit of early intervention, we should be aware of two factors. First, consulting collaboratively with families maximizes the impact of our hour spent with them, because they take that interaction to inform their parenting throughout the week. Second, the amount of time caregivers spend interacting with children is an opportunity cost, to use a term of economists: That time should be translated into dollars, if our capitalist society values only what costs money. Although saving money should not drive how we work with children and families, fortunately, the best intervention approach, using a PSP, is also the most economical. Children and families do not need a pile of expensive services.

Parents are understandably frustrated at the conflicting messages they receive, from “more is better” to “more is less.” We have data showing that family quality of life is associated with fewer professionals—or the more professionals a family must deal with the lower their quality of life. Numerous other studies show the deleterious effects of piling on services. Yet parents, wanting to do whatever they can for their child, keep receiving the message that more is better. This message is unfair and incorrect.

We have an ethical obligation to provide families with information, and that information should include the fact that less is better, when done right. Families should have a primary service provider, who uses other team members as needed.