Q: We have implemented developmental screening in our practice, but we are struggling with referrals and feedback. We often find out months later that a child has had no interventions. What are other practices doing about this?
A. Since 2000, the Assuring Better Child Health and Development (ABCD) project (funded by the Commonwealth Fund and administered by the National Academy for State Health Policy) has involved 23 states. In ABCD, state Medicaid agencies, partnering with American Academy of Pediatrics (AAP) chapters, have worked on policy development and with practices to integrate routine screening into primary care practice. In 2006, the AAP began recommending routine developmental and behavioral screening at specific well-visits in the first 3 years of life (at ages 9, 18, and 30 months).
These organizations’ combined efforts seem to have had an impact. According to the 2011 National Survey of Children’s Health, 30.8% of parents of children age 10 months to 5 years reported that they had completed a developmental screen in the previous 12 months. That figure is up from 19.5% in 2007. The Centers for Medicare and Medicaid Services now has a Core Quality Measure (CQM) for developmental screening. Reporting for CQM soon will be required by all state Medicaid and Children’s Health Insurance Programs in 2015. Seven states are already reporting on this measure, and most importantly, trying to use the data to drive quality improvement efforts. Private insurance plans will no doubt follow suit.
The experience of the ABCD states has shown that in order for screening to be effective, practices need to have relationships with community resources in order to link families with appropriate services, and to have reliable systems for communication, feedback, and coordination. This was such an important lesson learned by ABCD states that the most recent cohort (ABCD III 2009–2012) focused entirely on referral, feedback, and coordination of care. In particular, they emphasized linkages with their Part C programs. (All states offer Early Intervention services for infants and toddlers up to age 3 under Part C of the federal legislation Individuals with Disabilities Education Act.)
Part C services have been considered optimal for children up to 3 years of age with developmental concerns because they are, by definition, intended to consider the child as a whole, not just the domain of concern, and to develop an individual family service plan that broadly addresses healthy development. However, when infants and toddlers are referred to these services, primary care clinicians (PCC) very often have great difficulty with feedback because Part C programs are governed by the Family Educational Rights and Privacy Act in addition to Health Insurance Portability and Accountability Act. Hence, the ABCD state screening projects have invested significant time in outreach to their Part C programs, standardization of Release of Information forms, and in building reliable systems for communication.
Ironically, as developmental and behavioral screening at well-visits has been increasing, many state Part C programs have faced budget crises. As a result, many infants and toddlers who need developmental interventions are deemed ineligible for services, and may “slip through the cracks.” This has presented added challenges for PCCs and families.
Given these considerations, it is crucial for PCCs to acquire knowledge of community and specialty services for children with developmental and behavioral needs, and to build relationships with key partners in the care for these children. This is an essential prerequisite to being a Medical Home, and, in effect, expands the patient-centered team. Examples of appropriate referrals, (that may be simultaneous with a referral to Part C), include Early Head Start, Parents As Teachers, nurse home visiting programs, or specific therapies such as physical therapy, speech and language therapy, or occupational therapy.
In summary, for screening, referral, and feedback, you should: 1) use a validated tool; 2) refer if the screen is positive for risk (there is no reason for a “wait-and-see” approach, as this only risks delay in intervention); 3) parents are part of the team, so discuss the referral with the parent(s); 4) reach out and build relationships with key community referral resources; 5) establish a referral plan/process before beginning screening; and 6) always complete a two-way Release of Information with the parent at the time of referral to Part C.