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2016 Deaf-Blind Count Count Report Summary

National Child Count

Greetings! We have just published The 2016 National Child Count of Children and Youth who are Deaf-Blind. In addition to the online report you will also find a PDF version of the report to download.

As in past years the report includes a narrative section that summarizes trends in the data over the past several years and identifies a number of implications from a national perspective of these trends. This narrative is followed by the detailed tables that display the results of the 2016 National Child Count of Children and Youth who are Deaf-Blind on a state by state basis. Please note that you can select results your state only if you like by using the “Filter report by state” drop down menu at the very top of each page starting with Overall Population Demographics. You will need to re-select your state for each section of the report.

We have also updated the child count mapping application to include the 2016 data. The mapping tool now contains data from 2008 through 2016.

Selected Results

The overall December 1 “Snap Shot” count for the 2016 collection increased to 9,635, an increase of 61 from 2015. Overall, the total number of children and youth served during the year also increased from 10,671 to 10,749.

While 1,203 children and youth exited from the censuses of the State and Multi-State projects, a total of 1,265 were added through child find and referral efforts. While newly identified children and youth spanned the age range from birth through 21, almost half (44.5%) were birth through 5 years of age. This is a slight decrease from last year. In other ways, these newly identified individuals mirror the overall population.
The distribution of children/youth across age groups has remained relatively stable over the past five years, with a slight shift toward a younger overall population. The average age of children and youth reported has decreased slightly during this time from 14.09 years to 12.78 years, mostly due to a decline in the number of youth in the 18-21 age group. There has been a slight overall decrease in the percentage of the total Deaf-Blind Child Count represented by infants, birth – 2 years of age to 5.9% of the total population. The overall birthrate in the U.S. has also declined during this time period.

The racial/ethnic makeup of the children and youth on the National Deaf-Blind Child Count mirrors fairly well the overall US population. Generally, children and youth who are white are slightly under-represented, while children and youth who are Black/African American or Latino/Hispanic are slightly over represented.
While complications from prematurity continues to be the most commonly identified etiology, CHARGE Syndrome continues to as the second most common etiology. Overall, the total number of children and youth identified with a prenatal congenital or postnatal non-congenital etiology has declined from 2,870 to 2,516 over the past seven years, while the number with hereditary syndromes and disorders has increased from 3,584 to 4,277. Hereditary syndrome and disorders now account for 44.4% of all identified etiologies. Prenatal congenital complications account for 14.3% of identified etiologies and postnatal non-congenital complications account for 11.8% of identified etiologies. Complications from prematurity account for 10.7% of identified etiologies and 18.8% of the children and youth have no identified etiology. Approximately 90% of the children and youth on the Deaf-Blind Child Count have been identified as having one or more additional disabilities. Most common are cognitive impairments, orthopedic impairments, and complex health care needs.

Over 61% of the children and youth in school age special education are being served at least portion of their day in a regular classroom in their local school. This is consistent across the age span.

One quarter (25.0%) of the children and youth on the 2016 Deaf-Blind Child Count participate in the regular curriculum as indicated by participating in statewide assessments tied to regular grade level standards. This is up slightly from 2015.

Data on children/youth receiving Intervener Services was collected on a pilot basis to be fully implemented for the 2014 Child Count. A total of 411 children/youth were identified as receiving intervener services during the year. Of these 394 are included in the December 1, 2014 snap shot. In 2015, 587 children and youth were identified as receiving Intervener Services. This year 668 children and youth were identified as receiving Intervener Services.

The number of youth graduating from high school with a regular diploma grew steadily from 2010 to 2015 from 94 to 220. In 2016, 185 youth were identified as graduating from high school with a regular diploma.

Some Implications

The continued trend toward educational placement in inclusive settings, especially at the pre-school level, is significant and positive for children and families. The trend does, however, have profound implications on the needs for information, resources, and access to expertise in deaf-blindness being available at a local level. Concurrently, as schools and Part C agencies continue to appropriately place and serve children locally, there are increased needs for more interventionists and teachers with a knowledge of deaf-blind intervention and instruction, as well as individualized supports, including the provision of intervener services.

The apparent continued under-identification and referral to deaf-blind programs of very young infants and children remains an important need. Infants and toddlers greatly benefit from having access to expertise in deaf-blindness in order to develop and implement appropriate services that address the impacts of dual sensory impairments. Further, parents and families of these infants and toddlers can benefit from supports and networks established within states. Without such early identification and referral to state deaf-blind programs, access to needed services and supports is compromised.

Trends demonstrate that what has historically been one of the lowest incidence, yet heterogeneous populations, continues to become even more so. As our nation’s population becomes more diverse ethnically, racially, culturally and even linguistically, our national, state and local systems need to continue to adapt to provide needed services effectively to these children and youth and their families.

There is a continued trend in the identification of children and youth who are deaf-blind and living at home with their parents, extended family or foster parents. Currently, 93.4% of children are living at home in their local communities. In contrast, only 1.3% are identified as living in a private residential facility (the next most common setting). Given this trend, providing supports to families, including providing families access to parent networks, and providing leadership/self-advocacy skills continues to be a critical component in the umbrella of services needed for children who are deaf-blind and their families.

The numbers of students on the Deaf-Blind Child Count who are exiting Part B every year, either having received a diploma or certificate, simply aging out, or transitioning to adult services, post-secondary education, or employment has important implications for the continued development of effective post-secondary supports for this population. This is especially the case for the growing numbers of young adults receiving a certificate of completion or diploma, which has grown over the past 8 years.

The numbers of children/youth with cochlear implants has grown dramatically over the past five years. This increase, spanning the age ranges from infants to young adults, may require significant program development within the Deaf-Blind Network to provide appropriate supports for this growing population.

If you have any questions about the 2016 report, or previous reports or trends please feel free to contact me at (503-838-8777)

Also, please feel free to contact me for any specific analyses you would like run using the 2016 data, or longitudinal analyses over the past 8-10 years.

Mark Schalock

Posted Oct 2, 2017 by Mark Schalock

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