Model Part C/EHDI Coordinated Consent Form

Jeff Hoffman, MS, CCC-ANational Center for Hearing Assessment and

ManagementEHDI Network Consultant

402-484-0265jeffhoffman.ehdi@gmail.com

PurposesCoordinated 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

Connecticut Utah

Illinois Nebraska

Iowa Arizona

Tennessee

Participants

State Part C EHDI

Connecticut Yes Yes

Illinois Yes Yes

Iowa Yes No

Tennessee Yes Yes (designee)

Utah Yes Yes

Nebraska Yes Yes

Arizona Yes (designees) Yes

Workgroup Process

• Background materials provided• Nebraska Consent Form (1994) provided

as starting point for discussion• Email input and suggestions• Two conference calls to discuss format

and content• Synthesis document with considerations

available via email for critique and comments

Draft Model Part 1 – Identifying InformationInitiating AgencyContact PersonAgency AddressPhone Number

Child’s First NameChild’s Last NameChild’s Date of BirthChild’s Birth HospitalChild’s Birth PlaceChild’s Social Security Number

Parent/Guardian Full NameParent/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 & ProgramsListed 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)________________________________________________ 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