Any tips (in a past or future posting on your blog) about how a parent can go about choosing an OT? We've been taking our 5-year old autistic son to an OT who is very nice and caring and with whom our son works well, however, she has recommended Wilbarger brushing, Therapeutic Listening and books written by Jean Ayres. Also, there seems to be no concern at all for when therapy might end - we have been paying privately for the past 2 years and just now got insurance that covers OT. I would like to find a new OT and would appreciate it if you could give some specifics about how to find one who is more interested in evidence-based approaches. It sounds like a judicious use of Wilbarger would be ok, taking into account the attitude of the OT toward such approaches.
In my opinion, all occupational therapy should have an end point. End points might look very different depending on the nature of the disability and the needs of the child at different times in their development. For example, a child who has cerebral palsy may benefit from a lot of intervention to help achieve basic mobility and developmental motor skills when they are infants and toddlers. Therapy may need to focus on school mobility or use of computers to learn adaptive skills when the child is in elementary school. At some point in time the child may have a surgery to correct scoliosis or to lengthen tight muscles, and there may be a need to re-learn motor and self care skills following such a procedure. When the child is a teenager, therapy may need to focus on activity configuration, leisure participation, and occupational choice.
The point is that at each time of 'need' for occupational therapy there must be a defined set of goals. These goals should be developed collaboratively with the child and the family. The goals should be understandable to the family, reflect the current needs of the child and family, and have an identified end point.
So, for any given child who has a chronic disability, the need for occupational therapy will change over time along with the goals of the child and family. There needs to be progress made toward the goals that are established. If there is no progress, then it is time to establish new intervention methods - or perhaps to establish new goals - or perhaps to stop intervention!
As for insurance coverage - there are very few payment programs (outside of public Medicaid) that will pay for this kind of ongoing therapy intervention when a child has a chronic or developmental disability. Rather, insurance companies tend to pay for medically related and short term interventions. There are exceptions to this rule and you need to examine your own health insurance policy to determine what it covers. I encourage families to know their coverage well and make therapy decisions based on a detailed analysis of resource allocation. Resources, by my definition, include the monetary cost of intervention, the actual time needed to participate in the therapy program (in and out of the intervention setting!), and the availability of the child and family based on other activities and obligations. When families look at resources from this broad perspective they are usually able to make better decisions about when the best 'timing' is to participate in a therapy program (particularly when the need is developmental, and not medically acute). Your occupational therapist should be willing to consider all of these factors with you and help you come to a decision.
Occupational therapy is similar to other health related professions in that there is a strong need to develop more evidence about what interventions work best. As standardized protocols and consensus on "best practice" are not always available, and because of the highly individualized nature of occupational therapy intervention, it is important for families to have ongoing and open conversations with therapists about what evidence exists for any suggested intervention protocol. Families should be able to get honest feedback from their therapists about evidence regarding interventions and then factor this information into their analysis of resource allocation. Certainly, families want to know when interventions are relatively well defined, accepted, and proven - and when they are not! They may make different decisions about resource allocation when they are informed. Occupational therapists should help weigh the evidence about any intervention so that the families can make decisions that make sense for their situations.
Given this perspective, many interventions that lack adequate evidence might be worth 'trying' but of course this is dependent on the broadly defined resources of the family. The ethical occupational therapist will tell a family about the lack of evidence for therapeutic listening approaches or Wilbarger 'deep pressure protocols.' However, as there has been some anecdotal evidence that these methods can sometimes help, parents can choose whether or not to pursue this kind of intervention. Or, a family may choose to ask a therapist to work on functional skills and developing a home program of learning to complete targeted self care skills using a backward chaining method - which has stronger evidence of success.
Families should consider the therapist's willingness to openly discuss all these issues. Parents should avoid any health care practitioner that blindly subscribes to a single practice model and is unwilling to candidly discuss issues of evidence.