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Well-Child Care for the Child with Developmental Disabilities Don Van Dyke, MD, Professor, Pediatrics; Director,
Division of Developmental Disabilities Fall 2001 |
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In Iowa, where 11.8% of all school age children used special education services in 1998-99, chances are that some of the children you serve have disabilities. What is your role as a primary health care provider for a child with disabilities? It is much the same role as that you play for the other children in your care, but four areas require special attention:
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What disabilities are most common in Iowa?
We don't have the data to answer that question precisely. However, the conditions that most often bring people to the Center for Disabilities and Development (formerly University Hospital School) are:
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BASIC HEALTH CARE As with any child, at each visit you will want to monitor physical, mental, emotional, and social growth and development. This will include periodic assessment to determine the child's health status. For children with complex conditions, a pre-visit questionnaire, to be completed by the family, can be a useful tool (see Capute, 1996). Reviewing this and the child's health care records (your own and those from other providers who are seeing the child) before you see the child can make the visit even more productive. Perinatal risk factors that place a child at risk include:
Preventive health care is crucial for all children. Preventive care checklists for children with specific disabilities are particularly useful for children who have uncommon genetic syndromes or congenital anomalies. You can find such checklists in Preventive Management of Children with Congenital Anomalies and Syndromes (Wilson, 2000). As you update the child's history during the visit, note the accomplishment of milestones, and watch for patterns that may serve as early warning signs. For example, language difficulties may be a precursor to learning disabilities. As part of the office visit, you should observe the parenting skills of the child's family members and other care givers, as well as how the child interacts with others. Environmental factors that place a child at risk include parents or care givers who:
The presence of perinatal or environmental risk factors suggest the need for further evaluation. Record the child's height and weight, head circumference, and blood pressure. For children with certain conditions, such as Down syndrome, special growth charts are available (see Insert page 1). Hearing and vision screening should follow the EPSDT Care for Kids screening schedule. A dental examination should be performed, and referral for dental care made if needed. A complete physical examination of the unclothed child should be carried out. Immunizations should be administered. Hematocrit/hemoglobin, urinalysis, and a blood lead level test should be provided as per ESPDT guidelines. As appropriate, administer a TB test and obtain other laboratory studies. Children at risk should also be tested for HIV, hepatitis or other sexually acquired infections. Girls who are sexually active should be referred to a gynecologist for assessment and anticipatory guidance. All Iowa children should receive blood lead testing (see "Results of Lead Testing,"). Make a written record of what you learn during the exam, noting any acute or chronic medical concerns that call for further evaluation or referral. Ongoing health care management via a child's medical home can often prevent the development of secondary conditions and identify areas of concern in a timely and effective manner. A key role of a child's primary care provider is to refer the child and the family to resources when (or even before) they need them. FAMILY SUPPORT Contrary to popular belief, two-thirds of the families of children who have severe disabilities manage to cope. Their rates of divorce, serious mental illness, and ongoing dysfunction are no greater than those of other families (Wilson, 29). But the interplay between organic and environmental factors is very important. For example, research shows that low birth weight children have more learning disorders later in life than their normal birth weight peers -- except in families in which the parents are well-educated. For children with educated parents, environment -- family -- apparently offsets the negative factors related to low birth weight (Capute, 428). Clearly, one of the most important roles of the health care provider is that of a reliable ally who supports and encourages the family. So:
Families may be especially stressed:
CARE COORDINATION Ideally, the family coordinates care with the help of a community care coordinator and their primary care provider so that care doesn't become fragmented, less effective, and more costly. It is important that the primary care provider stay involved in the planning of services for the child. In Iowa, families who have a child with a disability can use the care coordination services of Child Health Specialty Clinics (866-219-9119 or CHSC-HDM@uiowa.edu) or Iowa's Early ACCESS system. CHSC provides ongoing resource and referral information, technical assistance and consultation; facilitates service access and delivery and enhances communication. CHSC serves children birth through age 21. Early ACCESS can assist with care coordination for children birth to 3 (see the summer '01 issue of this newsletter). Iowa Early ACCESS works with the family to create an Individualized Family Service Plan. If a child is being seen by other medical specialties, you can help coordinate this care and prevent duplication of tests or services. Let other specialists know if you want to take on this role. If a child is seen by more than one medical specialist, be sure family knows which specialist to contact with specific questions. You may also be asked to help inform day care or school staff about the child's health needs, how to manage the child's care, and who to contact to report health status or concerns. ADVOCACY One of your most important roles is that of helping families find the resources they need (see insert page 1). Four federal programs that they -- and you -- need to be aware of include:
Other resources that provide funding or services are also available on a local, state, and federal level. Good places to begin are:
For more information on resources you can use to provide well-child care for children with disabilities, see Insert page 1. |
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