Got a need? Get a service.
That mentality has pervaded the field of early intervention
0-5, where we have seen the mindless piling on of services, families desperate
for more services and more hours of those services, and professionals working
to keep families dependent on their weekly sessions. But more is not better. In
fact, it might be worse. In 2007, Dunst, Hamby, and Brookfield found that early
intervention program service intensity had direct negative effects on self-efficacy
beliefs and parent and family well-being. On the other hand, family-centered
early intervention practices had direct and indirect positive effects. In a
study of factors associated with parental stress and satisfaction during the
diagnosis of children with autism spectrum disorders in Singapore, higher
parental stress was associated with more professionals consulted and lower collaboration
with professionals (Moh & Magiati, 2012). In a study conducted for his
dissertation, my postdoctoral fellow, Pau García Grau, found that the number of
professionals working with the family was inversely related to family quality of
life.
Why is more not better and even possibly worse? First, the
multidisciplinary approach to service delivery, defined as different
professionals each doing their own thing and not talking to each other, can
leave important child and family needs unmet. Each horse has its racing
blinkers on and relentlessly pursues its discipline-specific race. Therefore,
these professsionals conduct fairly narrow assessments—they’re interested only
in their own discipline—and provide treatment based on that narrow and often
decontextualized assessment. The problem is that child and family needs often
fall between these narrow tracks. Which discipline is in charge of the child’s highly
restrictive food acceptance? Which deals with the child’s tantrums during hair
washing? Which one deals with the child’s anxiety? Which deals with the child’s
lack of interest in toys? Which one deals with the mother’s depression when she
is home alone with her child? Which one deals with the father’s yearning to get
a college education? Which one deals with the young mother’s disempowerment,
living with her own mother?
Second, dealing with many professionals can be time
consuming. We should take this “opportunity cost” into consideration, when
analyzing the impact of the number of professionals. At first, families are
delighted to have so many people on the so-called team. They feel they’re doing
what’s best for their children. But as the months go by, the toll of taking the
child for services, being home for them, or handling communication with the
school-based ones can become a drag. I once interviewed, for a research
project, a young mother in a housing project in Pittsburg. Her child had
significant disabilities. She was clearly intelligent but with limited
education. She had taught herself a lot, not just about her child’s problems
but about life in general. She was unemployed. When I asked her if she was
leading the kind of life she wanted to, she said, “What choice do I have? I
have to take him to therapy.” She described how, on 2-4 days a week, she had to
take him to the bus stop and take two buses to the clinic where he received
occupational therapy, physical therapy, and speech therapy. She also had to be
home one day a week, at least for an hour, to receive home-based early
intervention from an educator.
“Has anyone ever talked to you about alternatives, so he can
get the help he needs and you can have a job?” She snorted a sardonic laugh.
“No one has even asked me what I want.”
The number of problems with this scenario is too enormous
and wearying to list. And this is not an isolated, unique case. We hear stories
like this all the time. A few weeks ago, the New York Times reported that
scores of families in northeast Brazil who had a baby with microcephaly from
the zika virus were getting on buses at 3 in the morning to go to Recife, hours away, for the
child to be seen in short sessions by various therapists, then trekking all the
way back. Everyone assumes this life is what you get when you have a child with
significant disabilities. It’s unnecessary, costly, and damaging. Damaging in
two ways. First, it deprives the family of opportunities to spend their time
doing something more fun or productive. Second, it teaches the family
incorrectly—that these injections of therapy, out of context make a difference.
That this is how children learn. Any time we give parents wrong information, we
are damaging their parenting and therefore the child’s development. We are
turning parents from “teachers” (the natural role of parents) to chauffeurs.
(That’s what we’re supposed to be when soccer, gymnastics, and swim team
begin!)
The third problem with having too many cooks in the kitchen
is that it’s a waste of resources. In my consulting work, I am often presented
with an overview of the service delivery method and then asked for advice on
how to make the resources stretch further. They might have waiting lists, they
might have reduced home visits to monthly (checking in, not digging in, as
Dathan Rush says), or they might have shortened their visits to half an hour. I
look at service plans, which go by different names in different parts of the
world, and I see a slew of professionals on each plan, all with considerable
intensity—often weekly. (If you think that sending a different kind of
professional into the home each week—say, four professionals a month, visiting
monthly—is a good solution, think again!) A waste of resources is less
important than misleading families but it also has an impact on families. If
family wants a consultation from a physical therapist, for example, but the PTs
are all booked up because they’re seeing everyone weekly, the family might have
to wait a long time or go elsewhere.
A fourth problem is that professionals who work with the
family independently often give conflicting information. They also assume that
the parent will consider their own intervention suggestions as the top
priority. When you have four professionals each thinking that, someone’s going
to be disappointed.
 |
| Nova Scotia, June 2017 |
The best solution is a primary service provider. The PSP
approach fosters teamwork, uses resources wisely, gives the family a unified
support, and reinforces in families the fact that children learn throughout the
day from the adults caring for them.
