Early Identification - New Guide for States

The “sooner the better” has been a favorite phrase of mine since volunteering in a Head Start classroom when that program was just beginning. Starting early to improve results seemed like common sense and has been proven by longitudinal research to be true. We know that experiences during the earliest years of life critically impact a child’s ability to learn, move, and interact with others, and are particularly important for communication and language development.

Children with sensory challenges, additional disabilities and complex health needs face particular challenges and benefit from early intervention. This is especially true for young children with combined vision and hearing loss, for whom the world can be a very scary place.  State deaf-blind projects, a national family association and a network of professionals with specialized training are available to provide technical assistance to families, educators and caregivers of these children. However, the most recent data from the NCDB National Deaf-Blind Child Count indicate nearly twice as many children in the age 3- to 6-year-old category than the 0- to 3-year-old category, suggesting that many children who are deaf-blind are not identified as such, nor referred to state deaf-blind projects, until age 3 or older.

Since July, 2007 an NCDB work group has been working to form partnerships focused on improving the early identification and referral of infants and toddlers, birth through age two, with combined vision and hearing loss and I have been fortunate to be involved in those efforts. These efforts began with an extensive literature review, analysis of survey results and focus group interviews to learn about effective early identification and referral strategies being implemented by state deaf-blind projects that demonstrated success in identifying infants and toddlers. Continued work has concentrated on learning more from the broader early intervention community about evidence based early identification and referral practices, collecting resources developed by the deaf-blind network, and determining how to best share what we have learned.

All that work has paid off! NCDB’s Early Identification and Referral Initiative Team has just made available the Early Identification Self-Assessment and Referral Guide for use by state deaf-blind projects. The guide offers a data-based decision making process that includes data analysis, reflection on state systems serving children birth through two, and the development of an action plan to address any identified issues related to under-identification or under-referral. The Guide has been implemented as a pilot by ten state deaf-blind projects and includes a “toolbox” of great resources. The pilot states are ready and willing to share their experiences and the EI&R Team is available to provide technical assistance to any state project interested in completing the self-assessment process.

As someone who’s passionate about making sure little ones with combined vision and hearing loss – and their families – get connected as early as possible to the people and resources that can help I can’t think of a better holiday gift to share! Take a look at http://www.nationaldb.org/EarlyIdentificationInitiative.php and plan to join us on January 15 or 17 (2013) to learn more.

Barbara Purvis - NCDB

Spirit of Partnership in Module Development

For many, December is a month of anticipation and giving.  It is a month full of preparation, the culmination of the work within a year and the sense that the New Year will soon begin.  Since NCDB was asked to create online, open-access modules that support the preparation and training of interveners, many partners in the Deaf-Blind Network have engaged with us to advise, co-create, and review the learning tools that are being developed.

In September, NCDB hosted several calls with members of the network to share and engage with the community in this important work. The discussions of the shared hopes for designing an open-access tool and the recognition that such tools should be used with integrity have helped shape our activities.

In October, nineteen representatives from our network, including parent leaders, university personnel preparation representatives, and state deaf-blind projects were invited to identify and prioritize the themes for the first modules under development.  Each person was invited because of rich experience in creating intervener preparation and training materials. At this meeting, a path was formed for building the first modules, developing practical learning scenarios, and aligning the modules with the CEC’s Knowledge and Skill Set for Paraeducators Who Are Interveners for Individuals with Deaf-blindness.

In November, twenty nine individuals participated in a module writing retreat to begin weaving together the videos, readings, and learning activities into compact, cogent learning modules that form the first four chapters in a larger narrative.  If you listen closely, you may even hear the module teams collaborating, sharing files, editing video and buzzing in the Adobe meeting rooms to complete the beta versions that will be tested in early February.

In keeping with the season of anticipation, many are wondering what the modules will contain. The themes which were born through the advisory committee work include:

• ·         An overview of deaf-blindness and instructional strategies
• ·         The sensory systems- eyes, ears, and brain
• ·         The role of the intervener in the educational system
• ·         Self-image and the importance of relationships

As exciting as the modular content may be, many have found that the true gifts of this process have come from the willingness to share the network’s best thinking, resources, and efforts to create a tool that may be shared by many.  Trying to build the “perfect tool” has been tempered by a sense of humor, the limitations of technology, and a desire to see the first modules come to fruition during this cycle of funding.

In one moment when the module teams were feeling particularly daunted by the task, Robbie Blaha, a module leader shared the lyrics of a Leonard Cohen song:

“Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That's how the light gets in”

It is in that spirit that the module team process moves forward, readying for a field test of the beta versions of the modules in February and March that will shed more light on the practicality and usefulness of this community set of tools- a gift that reflects the efforts of a diverse community to share the best of what it knows- cracks and all.

Amy Parker - NCDB