Feasibility of obtaining parental consent for special education record review in autism surveillance

Purpose The purpose of this study was to describe the feasibility of an alternative approach to public health surveillance for autism via parental consent when FERPA restricts access to special education records. Specific questions were: What is the process for obtaining parental consent by mail to review and abstract information from the childʹs special education records, what are the obstacles, what are the costs in time and money, and what is the yield of affirmative replies to requests for access to records? Methods The feasibility study was conducted over 18 months. Data were collected from telephone, email, observation and meetings, among investigators and personnel of the Philadelphia School District. Results Negotiations comprised multiple meetings with various stakeholders for 27 months before the mailing was sent. District representatives were concerned about violating the Family Education Rights Protection Act (FERPA). Discussions with attorneys were needed to confirm adequacy of privacy protection. Significant barriers related to practical issues of implementation and cost included: limited district resources, low cooperation of staff, FERPA regulations, and parent variables. One problem was the ability to generate parent support and cooperation to collect a sufficient number of affirmative responses. The population of children and parents was multiracial, spoke over 120 primary languages and was socioeconomically diverse. Nineteen hundred letters were sent to parents in English and Spanish. Within 2 weeks of delivery 214 responses were received (11%); 20% of these declined record review, and 105 letters were returned undeliverable. The study coordinator received over 70 calls from parents requesting more information. The monetary cost of the project exceeded $22,000. Conclusion The complexity of establishing collaboration among multiple stakeholders requires considerable human and other resources. More effort is needed to establish credibility and visibility of a surveillance program in the school community before requesting cooperation from parents. Initial expenses may be the first investments in a long-term cooperative relationship.