Model Part C/EHDI Coordinated Consent Form Jeff Hoffman, MS, CCC-A National Center for Hearing Assessment and Management EHDI Network Consultant

Purposes Coordinated Consent Form Recent surveys of EHDI and Part C coordinators (Behl, Houston, & White, 2008; Greer, 2008) –Nearly 60% of EHDI programs rarely or never notified when children with hearing loss were enrolled in Part C programs –Remaining 40%, data is incomplete or provided for only part of the children with hearing loss –Approximately 35% of Part C programs share IFSP information with EHDI programs –Only a few EHDI programs receive information from Part C about services provided The Impact of Privacy Regulations: How EHDI, Part C, and Health Providers Can Ensure that Children and Families Get Needed Services National Center For Hearing Assessment and Management, 2008.

Purposes Part C/EHDI Workgroup Develop a draft model Part C/EHDI coordinated consent form –Streamline the authorization to exchange child-specific information among providers –Support the coordination of services for the child and family –Serve as model for consideration by state Part C and EHDI programs

Participants Coordinating Workgroup Randi Winston, AuD; Todd Houston, PhD, Susie McCamy, MS, Jeff Hoffman, MS (lead) Workgroup Invitees Part C and EHDI Coordinators ConnecticutUtah IllinoisNebraska IowaArizona Tennessee

Participants StatePart CEHDI ConnecticutYes IllinoisYes IowaYesNo TennesseeYesYes (designee) UtahYes NebraskaYes ArizonaYes (designees)Yes

Workgroup Process Background materials provided Nebraska Consent Form (1994) provided as starting point for discussion input and suggestions Two conference calls to discuss format and content Synthesis document with considerations available via for critique and comments

Draft Model Part 1 – Identifying Information Initiating Agency Contact Person Agency Address Phone Number Child’s First Name Child’s Last Name Child’s Date of Birth Child’s Birth Hospital Child’s Birth Place Child’s Social Security Number Parent/Guardian Full Name Parent/Guardian Date of Birth

Draft Model Part 2 – Type of Information I give my consent, as the parent/guardian of the minor child, to the agencies identified below to share the information that I have indicated. The purpose of this exchange of information is to help coordinate services, provide appropriate programs, and to make sure that my child and family get services as quickly as possible. INITIALS TYPE OF INFORMATION ____ Health Information  Birth Records  ENT Records  Other (specify)____________________________________________ ____ Screening Results  Bloodspot  Hearing  Other (specify)____________________________________________ ____ Diagnostic Assessments  Audiology  Speech-Language  Other (specify)___________________________________________ ____ Early Intervention Records  IFSP  Assessments  Other (specify)___________________________________________ ____ Therapy Reports/Records (specify)____________________________ ____ Educational Records (specify)________________________________ ____ Other information (specify)___________________________________

Draft Model Part 3 – Agencies & Programs Listed below are a number of agencies that provide services for children with special needs and their families. I am putting my initials next to the agencies that I want to share information identified above. I understand that these agencies will use and keep information confidential about my child. INITIALS AGENCY/PROGRAM ____ Part C Early Intervention Program____________________________ ____ Early Hearing Detection & Intervention/Newborn Hearing Screening Program__________________________________________________ ____ State School for the Deaf (specify)____________________________ ____ Family Support (specify)____________________________________ ____ Early Care/Education  Early Head Start  Other (specify)________ ____ Hospital (specify)__________________________________________ ____ School District (specify)_____________________________________ ____ Department of Public Health  Vital Records  Birth Defects  Other (specify)___________________________________________ ____ Children with Special Health Care Needs (specify) ______________ ____ Department of Social Services (specify)_______________________ ____ Other (specify)____________________________________________

Draft Model Part 4 – Informed, Signed Consent I understand that: 1) I have the right to withdraw my consent at any time by writing to the Initiating Agency listed above; 2) I have the right to inspect and copy the information to be shared; 3) If I do not give my consent to share information, the agencies may not be able to determine the best services available for my child and family; and 4) I am providing my consent voluntarily and I understand the information on this form. Signature of Parent/Guardian______________________________________ Relationship to Minor Child_______________________________________ Date___________________________________________________________ Street Address__________________________________________________ City/State/Zip___________________________________________________ Phone Number(s)________________________________________________ Unless otherwise stated, the release/request is valid for one year from __________ to_______. Information shared by the agencies above will not be disclosed to anyone else without written consent of the parent/guardian. This information will never be used to solicit services or products.

Workgroup Considerations Amount of information Parent understanding States differ on key variables Scope of agencies listed Timing of initiation of consent form Gatekeeper Training