Understanding What Shapes Us: Building a National TA Network
Posted on June 17, 20159 Comments 0 Likes Like this post
Jay Gense - Former Project Director, NCDB
Several weeks into retirement from my position as Director of NCDB, I find myself reflecting on a deeply rewarding career in a field that I loved and continuing my commitment to doing what I can to help ensure a quality future. Now that I am playing tennis more and sitting in front of a computer less, NCDB has invited me to share some thoughts and perspectives about our field and about our evolution over the last few years as we have worked to create and implement a national deaf-blind network approach to TA service delivery.This is the first of two posts and in this initial post I’d like to bring attention to some foundational demographic trends that have and will continue to shape our field, as well as identify some gaps that exist in our service delivery infrastructure. As follow-up, I’ll offer perspective about why these trends and delivery gaps should drive our thinking about and planning for the future, the need for a networked approach to services, and the unique gifts we have as a field to forge ahead with confidence.
Interestingly, some trends haven’t changed much over time while other trends highlight very significant and, arguably, profound paradigm shifts. While not new to many reading this post, I think it’s important to begin thinking about the future by reflecting on two trends: Prevalence and Educational Placements.
Nationwide there are about 10,000 infants, children, and youth identified as deaf-blind. This very low prevalence has been relatively constant for decades. As was true when I started my career in the mid-1970’s, deaf-blindness is and likely will continue to be the lowest of the low incidence disabilities. However, some prevalence trends speak to ever-changing and increasingly complex nuances. First is the increase in the overall number of children with disabilities in additionto their deaf-blindness. Currently, about 90% of children who are deaf-blind have additional disabilities. Second, while the distribution of children across age groups has remained relatively stable over the years, there’s been an overall decrease in the percentage represented by infants, birth – 2 years of age (6.2% - 5.9% for data-geeks who care about specificity). Considering only birth through age 1, we see that there are less than 100 infants included on the national Deaf-Blind Child Count. I find that alarming. Clearly early intervention is critical for children who are deaf-blind, and it’s essential that we are identifying children as early as possible and referring them to appropriate services.
In my opinion, nothing impacts our planning for the future as significantly as do the trends related to educational placements. During my career we have experienced children moving from secluded, separated environments to placements in local programs. The percentage of young children ages 3-5 educated in a regular early childhood education setting has more than doubled in the past decade. For older children, we now see about 65% of elementary school aged children being served at least a portion of their day in a regular classroom in their local school. This percentage continues to grow.
I began my career at a time during which the vast majority of children were placed and served in one of about 300 segregated settings across the U.S., including state institutions, residential schools and segregated classrooms. Thankfully, today’s children who are deaf-blind are living at home, attending school in his/her neighborhood, and participating at least part of the day in a regular education classroom. They are, however, dealing with increasingly complex learning challenges and very much requiring highly individualized services and supports.
SERVICE DELIVERY GAPS:
Next, consider these trends in prevalence and placement as they relate to 4 significant gaps that currently exist in our national infrastructure in serving children, families, and schools
- As inclusive placements continue to rise, so too
does the number of service providers working with children. Local teachers
typically don’t have the background and training required to provide quality
services. They very much require supports from a strong TA system. TA providers
(mostly, State Deaf-Blind Projects) are constantly challenged in bringing necessary
knowledge and resources to local providers and to parents.
- There is a critical shortage of teachers of the
deaf-blind and other deaf-blind specialists. This leaves the State Deaf-Blind
Projects serving as the primary source of expertise in virtually every state. We
most definitely have a systemic gap of capacity
- Intervener services are an important individualized
support that provides access for many children. Intervener services are still
very much an emerging practice in the United States and, currently, the
infrastructure for providing these services varies significantly from state to
- We are, of course, fortunate to have federal
funds supporting State Deaf-Blind Projects and a National Center. While we
certainly can acknowledge significant improvements in efforts to better align
services across the various projects over the past several years, there continues
to be a need for improved systemic integration and alignment of services
provided through this national Deaf-Blind TA Network. Without such alignment
and integration there will be duplication of effort, minimal replication of
quality services, and unnecessary expenditure of scarce resources.
believe that these trends and gaps must drive our thinking in planning for the
next generation. Planning for the future requires both reflection of the past
and careful analysis of current circumstances. The truth is that our field must
create its future based on current realities; these realities present a very
different picture than were the realities even a few years ago, let alone one
generation ago. Serving 10,000 very complex children placed in thousands and
thousands of school districts across the country requires different approaches
and partnerships than those required when children were segregated into a few
hundred programs. Again, we are fortunate to have federal support for nearly 50
deaf-blind projects, but the only way we'll succeed in serving children today
is through collaborative networking. Children will not be better served through
isolation or autonomy. In my next blog post I will highlight how the
intersections of demographic trends and service delivery gaps discussed here
are best managed through careful construction and implementation of national
networked systems of collaboration. I also will offer perspective about the
solid historical basis for such collaboration that exists in our field, and the
opportunities that are currently afforded us all. The future is indeed bright,
but we must be purposeful in embracing opportunities that lay before us.
I look forward to hearing your thoughts and responses.