It has become more difficult to manage children with special healthcare needs over the past decade. Before this, we could easily refer such children to a medical center team of specialists led by a neurologist or child development specialist and often including a physical therapist, occupational therapist, speech or language pathologist, perhaps a social worker, audiologist, and sometimes a psychologist or education specialist. But managed care generally requires that each patient have a gatekeeper who accesses all specialized care. It is difficult to convince a health maintenance organization (HMO) utilization review that special needs patients who are not acutely ill need all these for a comprehensive evaluation. So the pediatrician can spend a inordinate amount of time pounding on a gate that will not open.
A growing proportion of special needs patients now receive coordination of care from a team in their own community. These teams are made of local professionals, more or less of the same disciplines that are represented in medical center teams. However, community teams usually differ in that pedia trie-specific services may be less common, particularly in rural areas (eg, the community physical therapist is likely to be a generalist instead of a pediatrie specialist), they are not led by a developmental pediatrician or neurologist (in fact, these teams often lack sufficient physician input), and the community teams are commonly based at what is or will be the child's school instead of a large medical center. Community teams have an advantage over medical center teams because they receive their financial support from a variety of sources and are less dependent on payment from medical insurance companies or HMOs. So they do not require prior authorization.
For several reasons general pediatricians should participate in these community teams. First, coordinating care from the place where the child and family live has some inherent advantages. C. Everett Koop is quoted in this issue as proposing that special needs children receive family-centered, community-based, coordinated care. This puts the care in the same environment where the child must grow and adapt to his or her disability. The community team also needs more medical input, and community team care is likely to be or become an important resource for our special needs patients and their families.
However, it helps to realize the treatment goals of these teams have a different slant from those in our offices. The team strives to help the special needs child achieve the best possible outcome of cognitive, motor, psychological, and physical health in spite of handicaps. The team seeks as an endpoint, a child then adolescent then adult who can live a full, active, self-sufficient, independent life, or come as close as possible. So medical care, within the perspective of the team, is directed toward enhancing these team goals rather than as an end itself. Some examples may help elucidate this subtle difference. A 10-year-old girl has mild mental retardation and seizures with 12 mg/kg/day of phe;nobarbital given every 8 hours. But her teacher says she has become unruly and is not paying attention. She was doing better on 6 to 8 mg/kg/day, but was having one or two mild 90-second seizures weekly until you boosted the dose. Changing treatment to Dilantin (phenytoin; Parke- Davis, Morris Plains, NJ) or perhaps Tegretol (carbamazepine; Basel Pharmaceuticals, Morris, NJ) may or may not work. But since the goal is to help her be independent and earn a living as an adult, you are willing to try this. You might even choose to accept incomplete control of seizures, as long as the child can be protected from harm. And you would give the Dilantin or phenobarbital less than three times a day to simplify the school's treatment regimen. Anyway, the point is to adjust medical interventions towatds optimal education and social or adaptive goals.
In a similar fashion, the child who is technologydependent should be managed to allow as much mobility as possible and to allow school attendance. Many special needs children tend to accumulate unnecessary medication and treatments that interfere with education because no single physician takes the time to review their cases regularly.
Let's say you are willing to participate in the community-based system. How do you get started?
* Make contact with the team. Ask the family who provides services for their special needs child if you can send a medical report to this team. This team will have an individual family or educational treatment plan (IFP, IEP) for the child and either an appointed member or a case manager will lead this, and is generally the best contact person.
* Ask the family if they also want a copy of this medical report. They usually will, and this is a great way to remind you of or clarify your diagnoses and management plans. The family can also use your letter to advocate for treatments. Pediatricians worry that parents will be confused or made unnecessarily anxious by physician letters, but this is uncommon now.
* It also helps to know the job descriptions of other team members. You know most of this already, but some roles are not as clear as others. Distinguishing occupational therapy and physical therapy is an example. At our institution, physical therapists describe themselves a specialist who prevent physical, emotional, or mental limitations in performing everyday activities. In fact, occupational therapy tends to be more about fine motor and upper extremity activities like eating or dressing, while physical therapy is more about gross motor or lower extremity work like ambulation. These two disciplines usually work well together, so if you refer a patient to one, the other will be brought in as needed. Several members of the team are often trained to do cognitive and motor developmental testing or screening.
There is one other role the pediatrician must play in the care of special needs children. We are the only professionals that routinely come in contact with children before they begin school. So we are the professionals best able to recognize developmental delay and make an early referral for testing and intervention. Early intervention helps achieve educational and socialization goals, so delay is the enemy. We often suspect delay long before we recommend referrals. I think we hope the child isn't delayed, worry about upsetting the parents, and thus choose to follow the child for an inordinate time. It is reasonable to follow suspected mild delays in an infant for a finite period - perhaps 2 or 3 months - before deciding. But don't let "physician denial" cause the child and family to lose ground.