Joint Dear Colleague Letter on Early Hearing Detection and Intervention and Part C Programs (Aug. 5, 2024)

August 5, 2024 Dear Colleagues : Th is letter was jointly developed by offices within the U.S. Department of Health and Human Services (HHS) and the U.S Department of Education (ED) to support increased collaboration between State Early Hearing Detection and Intervention (EHDI) programs and Individuals with Disabilities Education Act (IDEA) Part C early intervention programs . Data show that despite these longstanding newborn hearing screening and early intervention programs, there are critical gaps in services for deaf or hard of hearing (DHH) infants and toddlers . Therefore , within HHS, t he Health Resources and Services Administration, Maternal and Child Health Bureau (HRSA/MCHB) and the Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities ( CDC/NCBDDD) join with ED ’s Office of Special Education Programs (OSEP) to encourage State EHDI programs and IDEA Part C early intervention programs within States a coordinated systems of care that include data sharing, tracking, and surveillance to support timely early identification of hearing loss and access to early intervention services to foster optimal outc omes for DHH children and their families. To ensure that DHH children and their families receive the services and supports that they need to thriv e, this correspondence: • Highlights the requirements and expectations in federal law that support collaboratio n between EHDI and IDEA Part C programs. • Emphasizes the importance of data -sharing to support ongoing collabora tion between EHDI and IDEA Part C programs to coordinate child find activities, refer children from EHDI to IDEA Part C programs, support timely service delivery, and monitor children’s outcomes. • Provides technical assistance resources to support States in this collaborative work. a For the purpose of this letter, “State s” includes all of the State agencies that receive IDEA Part C funds, namely the 50 states, the District of Columbia , the Commonwealth of Puerto Rico , and the four outlying areas — American Samoa, the Commonwealth of the Mariana Islands, Guam, and the U.S. Virgin Islands . Beginning with the Federal fiscal year (FFY) 2024, the three Freely Associated States, the Federated States of Micronesia, the Republic of Palau , and the Republic of the Marshall Islands, have the option under IDEA of serving, and have indicated plans to serve, children with disabilities starting at birth. JOINT DEAR COLLEAGUE LETTER ON EARLY HEARING DETECTION AND INTERVENTION AND PART C PROGRAMS 2 Supporting DHH Infants and Toddlers Approximately 1.8 of every 1,000 newborn s in the United States are i dentified as congenitally DHH and at risk for delays or deficits in language acquisition . 1 Early identification of young DHH children, appropriate family support, and timely early intervention , are key components to their meeting language acquisition milestones that foster developmental growth and overall health and well- being. Despite success in achieving near-universal newborn hearing screening, with 96 percent of all infants in the United States being screened for hearing loss by one mon th of age, significant gaps remain, including timely diagnostic audiological evaluations, referral to IDEA Part C for eligibility determinations, and loss to follow-up after not passing a n initial EHDI hearing screening . As of 2021, only 43 percent of infants not passing the initial hearing screen received a diagnos tic evaluation by three months of age, and only 42 percent of infants with confirmed permanent hearing loss were receiving IDEA Part C early intervention services by six months of age . 2 With the enactment of the Children’s Health Act of 2000 , 3 Congress authorized funding to establish statewide newborn hearing screening and intervention systems. Subsequent legislation reauthorized and funded EHDI as an essential health program for newborns, infants , and young children that includes goals of systematic hearing screening of infants by one month of age, diagnosis by three months of age , and enrollment into early intervention services by six months of age . Known as the “EHDI 1-3-6” guidelines , and recommended by the Joint Committee on Infant Hearing , 4 these quality indicators have served as benchmarks for EHDI programs nationally and are reported on annually . 5 The Children’s Health Act specifically names two HHS agencies — CDC and HRSA — as the federal entities that provide funding and technical suppo rt to States to implement EHDI systems . 3 Together, CDC and HRSA have a longstanding partnership in funding States to implement a coordinated EHDI system of services and collect benchmark data. HRSA is charged with developing and monitoring the efficacy of statewide programs and systems for hearing screening of newborns, infants, and young children ; prompt evaluation ; and diagnosis of children referred from screening program. It does this through funding the EHDI State/Territory Program ( HRSA -24 -036 ). This opportunity provide s funding to enhance the State EHDI infrastructure to improve language acquisition for DHH children up to three years of age. CDC is charged with developing, maintaining , and improving data collection systems related to newborn, infant and young child hearing screening, evaluation, diagnosis , and intervention services. CDC ’s funding opportunity announcement DD20- 2006, “Improving Timely Documentation, Reporting, and Analysis of Diagnostic and Intervention Data through the Optimization of E HDI Surveillance ,” advances the capacity of EHDI jurisdictional programs to report, analyze, and use patient -level data . In a coordinated system, DHH children will meet language acquisition milestones thro ugh screening, diagnosis, and inte rvention services so they can p l ay, go to school and grow up to become a healt hy adult. b b For more on MCHB’s Blueprint for Change for Children and Youth with Special Health Care Needs , see Blueprint for Change | MCHB (hrsa.gov) . JOINT DEAR COLLEAGUE LETTER ON EARLY HEARING DETECTION AND INTERVENTION AND PART C PROGRAMS 3 Of specific importance is the need for ongoing assessment to track how infant screening, diagnosis, and early intervention impact “ the health, intellectual and social developmental, cognitive, and language status of these children at school age. ” 3 Early intervention services and supports can be provided to eligible children from birth through 36 months of age through the IDEA Part C program . Therefore , p artnerships between EHDI program s and IDEA Part C program s within States are critical to support and improve outcomes for DHH children and their families. Coordinated care depends on the ability to share data between EHDI and IDEA Part C programs within State s. In addition, d ata sharing allows program s to make data-informed, evidence -based decision s that promote effective policy and practices and provide acc urate and timely services to DHH children and their families . Understanding Program Requirements and Expectations The CDC, HRSA, and OSEP recognize the development of strong, effective partnerships can be challenging. Understanding the individual program requirements regarding collaboration can help facilitate effective partnerships . All three agencies are guided by structures and specific legislation that support interagency collaboration for grantees. Moreover, t he Children’s Health Ac t 3 as amended, includes specific language about HRSA, CDC, and N ational Institutes of Health coordination and collaboration with other Federal, State, and local agencies, including agencies responsible for IDEA Part C programs to ensure the success of EHDI programs. IDEA Part C also requires that the State comprehensive child find system be coordinated with specific programs and systems , including the state EHDI s ystem under the IDEA Part C Regulations 34 CFR § 303.302(c) (1)(ii)(J) and strengthened in the EHDI Act of 2017 (P.L. 115- 71). EH DI programs serve as key partners with and primary referral sources to IDEA Part C programs and must refer a child to the IDEA Part C program as soon as possible but not later than seven days after the child has been identified under 34 CFR § 303.30 3(a)(2)(i). Additionally, to support an interagency system within the IDEA, each State is required to establish a State Interagency Coordinating Council (SICC). SICC membership includes mandatory members from State agencies that implement other early childhood programs, social services, and health services as well as members that support the Part C program in carrying out its responsibilities . OSEP believes that including the EHDI program as a representative on the SICC would help the State lead agency implement its IDEA Part C child find responsibilities. Coordinating Care through Data Sharing These child find, SICC and other IDEA requirements provide a foundation for State EHDI programs and IDEA Part C programs to build and sustain an infrastructure that supports integrated data systems with a goal of monitoring key child outcomes for DHH children such as language ac quisition and communication development . Formal d ata policies and practices , including interagency data sharing a greements and/or memoranda of understanding, are required for such data integration and c an form the foundation for strategic coordination to accelerate improvements in data quality and outcomes for DHH children . Data sharing policies and agreements should identify specific data elements and JOINT DEAR COLLEAGUE LETTER ON EARLY HEARING DETECTION AND INTERVENTION AND PART C PROGRAMS 4 implementation factors (e.g., leadership, organization, personnel, and technology capacity) that facilitate data sharing, activities between the two programs , and the required privacy safeguards. 6 Data sharing between public health agencies and the IDEA Part C programs is permissible when done in accordance with applicable law , including laws that protect personal privacy (e.g., IDEA, the Family Educational Rights and Privacy Act (FERPA) , and the Health Insurance Portability and Accountability Act of 1996 (HIPAA) ). Such data sharing must be supported by an appropriate written agreement . 6 In developing data sharing policies and practices, it is critical to identify whether and what specific personally identifiable information (PII) and personal health information (PHI) would be shared, to ensure that any information that will be disclosed c omplies with these laws. IDEA and FERPA contain a specific exception in 34 CFR § § 99.35 (a)(1) and 303.414 (b)(2), that would permit IDEA programs to disclose PII under a written agreement to a third-party for the specific purpose of evaluation of a Federal-supported education program, such as the IDEA Part C program . 6 If a State EHDI program serves as an authorized representative of the State IDEA Part C early intervention program under the IDEA and F E R PA evaluation exception , that program may be able to access very limited PII in early intervention records for the purpose of providing evaluation information to help the IDEA Part C program improve its IDEA child find, service delivery, and child outcomes purposes and also track the EHDI 1 -3-6 guidelines for EHDI reporting purposes (34 CFR § § 99.35 (a)(1) and 303.414(b)(2) ). 6 Accessing Resources and Technical Assistance Supports Federally funded technical assistance (TA) centers have a wealth of tools and resources to promote collaboration within and across agencies and programs at the S tate and local levels. OSEP has two TA centers that provide resources for EHDI and IDEA programs on data sharing agreements. T he OSEP - funded Early Childhood Technical Assistance ( E C TA ) has a webpage that contain s E C TA’s resources , including a Data Sharing Agreement Template and a Data Sharing Agreement Checklist , which programs can use t o guide the development of their own data sharing agreements. The OSEP -funded Center for IDEA Early Childhood Data Systems (D aSy ) has a special collection of resources on data privacy and confidentiality . Specifically, there is a crosswalk tool, OSEP-approved data sharing template , and the September 2023 webinar from E D representatives specifically focused on data sharing agreements. Finally , OSEP and ED representatives worked closely with CDC’s autism programs to develop a model data sharing Memorandum of Understanding template that can be modified for use by S tate EHDI and IDEA programs . 7 States should contact their OSEP representative to obtain additional technical assistance in developing such an agreement. HRSA, CDC, and OSEP are committed to providing TA to support data sharing across programs. We encourage grantees to access these and other resources and share additional TA needs with their federal project officers. State EHDI and IDEA Part C programs can serve as model collaborators by connect ing partners and information across systems to track the impact of early intervention on key developmental outcomes such as language acquisition and family support. To support systems that work for children and JOINT DEAR COLLEAGUE LETTER ON EARLY HEARING DETECTION AND INTERVENTION AND PART C PROGRAMS 5 families, we strongly encourage State programs that serve DHH infants and children to work collaboratively to ensure data is shared from the point of screening up to age three to enhance developmental outcomes . Quality EHDI and IDEA Part C data are essential for the ongoing management and evaluation of the systems of care to support the health and well-being of DHH children and their families. /s/ Michael D. Warren, MD, MPH, FAAP Associate Administrator Maternal and Child Health Bureau Health Resources and Services Administration U.S. Department of Health and Human Services /s/ Karen Remley , MD, MBA, MPH, FAAP Director National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention U.S. Department of Health and Human Services /s/ Valerie C. Williams Director, Office of Special Education Programs Office of Special Education and Rehabilitative Services U.S. Department of Education cc: EHDI Coordinators (HRSA) EHDI Coordinators (CDC) State Title V and C hildren and Youth with Special Health Care Need Directors (HRSA) Part C Coordinators (OSEP) Part C Lead Agency Directors (OSEP) Part C Data Managers (OSEP) JOINT DEAR COLLEAGUE LETTER ON EARLY HEARING DETECTION AND INTERVENTION AND PART C PROGRAMS 6 References 1.Bower C, Reilly BK, Richerson J, et al. AAP Committee on Practice & Ambulatory Medicine. Hearing Assessment in Infants, Children, and Adolescents: Recommendations Beyond Neonatal Screening. Pediatrics. 2023;152(3):e2023063288. 2. Centers for Disease Control and Prevention (CDC). 2021 Annual Data Early Hearing Detection and Intervention (EHDI) Program | CDC. Retrieved February 2, 2024. 3.H.R.4365 — 106th Congress (1999- 2000): Children's Health Act of 2000. (2000, October 17). https://www.congress.gov/bill/106th -congress/house -bill/4365 4. (2019). Year 2019 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs. Journal of Early Hearing Detection and Intervention, 4(2), 1- 44. DOI: https://doi.org/10.15142/fptk - b748 5.Centers for Disease Control and Prevention (CDC). Annual Data: Early Hearing Detection and Intervention (EHDI) Program. Retrieved January 31, 2024, from: https://www.cdc.gov/ncbddd/hearingloss/ehdi -data.html . 6.(2022). U.S. Department of Education (Surprenant, Kala Shah, Miller, Frank) , IDEA and FERPA Crosswalk — A side -by -side comparison of the p rivacy provisions under Parts B and C of the IDEA and FERPA , from: https://studentprivacy.ed.gov/sites/default/files/resource_document/file/IDEA - FERPA%20Crosswalk_08242022.pdf 7.(2024). U.S. Department of Education. Memorandum of Understanding between the State Agency under the Individuals with Disabilities Act (IDEA) and the State Autism Developmental Disabilities Monitoring Program (State ADDM) , from: https://dasycenter.org/us -dept -ed -shares -idea -data -sharing -mou -template/