Welcome to Summit 2019 Linda McDowell, NCDB Co-Director Shelby Morgan, NCDB Content Management Peggy Malloy, NCDB Information Services Robbin Bull, NCDB Child Count The contents of this presentation were developed under a grant from the U.S. Department of Education, #H326T180026. However, those contents do not necessarily represent the policy of the U.S. Department of Education, and you should not assume endorsement by the Federal Government. Project Officer, Susan Weigert.

Summit Outcomes Increased knowledge of Practices & resources relevant to national TA initiatives Early Identification and Intervention (EII) Family Engagement (FE) Interveners and Qualified Personnel (IQP) Transition Potential systems TA activities Planning time for Systems TA work Network collaboration

Summit Resources The Summit 2019 folder The App The session presenters Agenda Discussion Guide Map of Meeting Rooms Restaurant Listing The App The session presenters Opportunity for evaluation Guidance for Summit 2020 at PDM Suggestions for future NCDB TA

Resource Review: NCDB Products nationaldb.org/products

Resource Review: Initiative Pages nationaldb.org/groups

Example: Transition Initiative Page https://nationaldb.org/groups/page/13/transition

Resource Review: OHOA Modules nationaldb.org/modules/ohoa/en/ohoa-overview Format 1: Moodle Coursework Cohorts Interactive Requires registration/login Format 2: Website Self study Provides content for coursework/cohorts, but not interactive No registration No quizzes Arranged topically

Resource Review: OHOA (Web) https://nationaldb.org/modules/ohoa/en/concept-development-and-responsive- environments

OHOA Tips Share (Whole or Part) Download Slide Presentations Under each presentation you will see “Download PPT or PDF Version of Slide Presentation” File –> “Make a Copy” and save to your own Google Drive File –> Download (save as PDF or PPT) Share (Whole or Part) Send url for full module or just one segment to another person or group Add urls to learning management systems

OHOA En Español Web-version only (not Moodle) nationaldb.org/modules/ohoa/es/los-modulos-de-aprendizaje-para- interventores-de-sordo-ciegos

State Project Portal nationaldb.org/stateprojectportal

Project Management Resources Resources for Operating a State Deaf-Blind Project – new web page Connections – NCDB Support – Information – and more Combines two previous resources: Resources for Planning for the Future Resources for New State Deaf-Blind Project Staff nationaldb.org/wiki/page/22/1005

Library Services Not everything is on the web! (or it’s there, but you can’t find it) Jennifer Arnott – Perkins Hayes Research Librarian and part-time NCDB employee Need information—an article, a lit review, help finding resources? Send reference questions to: support@nationaldb.org

Assessment, Planning, and Instruction Initiative Lead: Kristi Probst Goals: Share existing high-quality information via website Develop “practice profiles” Adapt model process from SISEP/NIRN Define essential functions of practices Have convened and work group and had initial meeting Developing and prioritizing topics

National deaf-blind child count Robbin Bull National Deaf-Blind Child Count Coordinator

Historical review

History of the Annual Child Count The annual National Child Count of Children and Youth who are Deaf-Blind (Birth –21) has been conducted since 1986. It represents a “snapshot” count on December 1st of each year to supplement OSEP’s federal Child Count, which includes children as deaf-blind when deaf- blindness represents their only disability. It is the first, and longest running, registry and knowledge base for children who are deaf-blind. The Child Count, often referred to as “the Census” represents a point-in-time snapshot of the characteristics, educational settings and living arrangements of children and youth identified by the state project's as deaf-blind.

Comprehensive set of demographics, such as.. Age distribution, ethnicity, and primary etiology Documented vision and hearing loss Primary IDEA classification categories and additional disabilities IDEA special education status IDEA placement and living settings

Why do we collect this information? To assure current and accurate state-level needs assessment data is available and used in the design and delivery of TA and to inform current research needs and personnel preparation. So that…all children who are deaf-blind are getting the highest quality services available to meet their individual needs.

Questions we seek to answer Who are the children and youth with deaf-blindness throughout the country and how many are there? What is the relationship of the Deaf-Blind Child Count (DBCC) to the IDEA Part B and Part C Annual Child Counts? What is the extent of the vision and hearing losses of those reported on the DBCC, and what additional disabilities do they manifest? Where are those reported receiving services and what types of supports are they receiving, and how does this impact technical assistance and training needs? Where are they living and how does this impact technical assistance and training needs?

Census over time

“Snapshot in time” Since 2003 we include only those who are in SpEd and eligible to receive SDBP services on December 1 each year First table only shows those eligible to receive state deaf-blind project services on December 1, regardless of whether they are in Part C or Part B. a point-in-time snapshot

Relationship to Part B and Part C 2003 - Part B and C exiting data elements included (created “snapshot” count) 2006/2007 - Realignment of data elements with IDEA, section 618 data reporting requirements and changes in documentation procedures consistent with IDEA classification and reclassification regulatory changes 2007 – IDEA definition of deaf-blindness adopted as consistent definition for DBCC 2009 - Realignment of Part C codes with IDEA, section 618 data reporting requirements 2010 – Race/Ethnicity updated to be consistent with new 618 requirements in IDEA 2004 Aligned data elements with Section 618 data reporting requirements   All data elements reflect current section 618 IDEA data requirements. Existing data elements have been broken out into specific Part B and Part C elements using 618 language Many changes made in 2007 (Part B Codes changed significantly)

Definition of deaf-blindness IDEA 2004 definition of deaf-blindness states that: “Deaf blindness means concomitant hearing and vision impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness” For infants and toddlers receiving Part C early intervention services, deaf-blindness is defined as: “Concomitant hearing and vision impairments or delays, the combination of which causes such severe communication and other developmental and intervention needs that specialized early intervention services are needed.”* *Defined by NTAC/SDBP workgroup in 2006 Consistent definition was identified

National totals, 10 years Average just over 9,500. Expect to see lower numbers this year. Up and down trends as projects clean their data. 2008 – 2009, 2013 – 2014, ‘96-98 Part B (3-21) = 1,278

Age groups, 7 years 0-2 down 6.4% to 6.1%, up from 2016 (5.9%). 18-21 18% down to 15.3% leveled since 2014, 6 – 17 growing 2010 0-2 (6.4%), 3-5 (13.7%), 6-11 (29.7%), 12-17 (30.8%), 18-21 (18%) Over 21 (1.1%)

Documented FUNCTIONAL vision loss and hearing loss A Functional Vision Assessment is defined as “a non- clinical assessment, carried out by a trained vision specialist using commonly accepted assessment tools, checklists and measures for making educated judgments about the functional use of vision.” A Functional Hearing Assessment is defined as “a non-clinical assessment carried out by a trained hearing specialist using commonly accepted assessment tools, checklists and measures for making educated judgments about the functional use of hearing.” Changed in 2007.

Documented Vision loss, 2017 Majority (80%) Doc Funct Loss, Low vision, Legally Blind. There has been a slight increase in the percentage of children and youth with low vision and a documented functional vision loss. The percentage of children who are legally blind has declined. CVI now 29%. Rose from 11% in 2000 to 28% in 2010, but have not seen a great increase since then. 2010 Low vision (29.4%), Legally Blind (28%), Light Percept (6.9%), Totally Blind (6.2%), Diagnosed Progressive Vis Loss (3.6%), Further Testing Needed (7.1%), Documented Functional Vis Loss (19%)

Documented Hearing Loss, 2017 Mild to profound pretty equally distributed. Further testing needed fluctuates around 7 – 9%. 2010 Mild (15.2%), Moderate (16.9%), Mod Severe (13.9%), Severe (13%), Profound (19.2%), Diagnosed Progressive Loss (1.9%), Further Test Need (8.2%), Doc Hear Loss (11.8%)

Vision loss by hearing loss, 2017 Longitudinal tables and graphs are on website for all states. Top 5 Low vision by Mod hearing loss 750 (8%) Low vision by Profound hearing loss 642 Documented vision loss by Documented hearing loss 611 Low vision by Mild hearing loss 567 Low vision by Moderately severe hearing loss 541 (5%) 2010-2017 Low vis by Mod hear loss 5254 Doc vis by doc hear 4567 low vis by mild hear loss 4565 Low vis by Profound hear loss 4565 (Flipped in 2014 –Profound over mild) Legally Blind by Profound Hearing Loss 4274

Race/Ethnicity, 2017 Comparable to Part B trends 2010 White (58.1%), Hispanic (20.1%), Black/Af Amr (15.4%), Asian/Pac Is (4.6%), Am Ind/Alaska Nat (1.8%)

Top Etiologies, 2017 Etiology Count Hereditary Syndromes/ Disorders 2552 Complication of Prematurity 1047 CHARGE Syndrome 933 Pre-Natal Congenital Complications 678 Post-Natal Non-Congenital 670 Usher Syndrome (I,II,III) 329 Down syndrome 315 Cytomegalovirus (CMV) 292 Microcephaly 214 Hydrocephaly 206 Asphyxia 194 Severe Head Injury 159 Stickler syndrome 137 Meningitis Dandy Walker syndrome 115 Goldenhar syndrome 101 CHARGE Syndrome continues to increase. 2010 Usher I, II, III = 265 Down Syndrome = 228 CMV = 333 Congenital Rubella = 89 (75% over age 10)

Other Disabilities, 2017 2010 Physical 61%, Cognitive 69%, Behavioral 11%, Complex Health Care, 51%, Speech Lang 71%, Other 22%

Early Childhood and School Age Ed Setting, 2017

Intervener Services, 2017 Added in 2014 as pilot, “fully implemented” in 2015.

Living Setting, 2017

Submitting your child count

What you should be doing… Collecting updates on children Following up with districts that have not responded Reviewing data within file for updates, out-of- dates, errors, missing data Checking your codes against the DBCC Change Log

Submission Due May 10 Critical data fields: Birth Date, Vision, Hearing, Part C, Part B, and Project Exiting Status, and Intervener Services File needs to be in Excel or CSV format New online submission process Contact me for extension if needed

What’s coming… Systemic work around identification Workgroup to review DBCC data elements for 2020 updates Starting efforts to develop systemic work around identification Late summer forming a workgroup to start reviewing DBCC data elements.