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2016 National Child Count of Children and Youth Who Are Deaf-Blind Report

Overall Population Demographics

The total December 1, 2016 “Snap Shot” count 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.

Newly identified children and youth spanned the age range from birth through 21. Nearly half (47.9%) were birth through 5 years of age. In other ways, these newly identified individuals are consistent with the overall population on children and youth who are deaf-blind.

The distribution of children/youth across age groups has remained relatively stable over the past five to six years. 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.

Since 2010, the number of children from birth to 2 years of age first decreased from 698 to 552 in 2013, and then increased again to 571 this past year. The overall birthrate in the U.S. has also declined during this time period. 

Since 2010 the number of children aged 3 to 5 consistently decreased, from 1271 in 2010 to 1160 in 2015. The number of children and youth aged 6 to 17 increased from 5,642 to 6,316. The number of those 18 years of age and older declined, from 1785 to 1543.

The overall distribution of children and youth by race and ethnicity continues to slowly evolve, reflecting broader population changes. The racial/ethnic makeup of the children and youth who are deaf-blind has remained fairly consistent over the past 7 years. There have been slight changes, but nothing significant. For example, the percentage of the population identified as white decreased from 56.8% to 53.6%. The percentage of the population identified as black or African American dipped slightly from 14.6% to 14.3%. The percentage identified as Latino or Hispanic showed a similar small dip from 20% to 19.6%. All of the other categories have experienced small increases.

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.

The distribution of children and youth by gender has remained very stable over time, with about 54% of children and youth being male and 46% female.

The apparent under-identification and referral to state and multi-state deaf-blind programs of very young infants and children remains an important issue. Infants and toddlers benefit greatly from having access to expertise in deaf-blindness. They require appropriate services that address the impacts of dual sensory impairments. Further, parents and families of these infants and toddlers can benefit from supports established within states. Without such early identification and referral to state and multi-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 most 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 effective services to these children and youth and their families.

Footnote: (1) December 1 snapshot based on children/youth in Part C or Part B and eligible for project services.