The Deaf-Blind Equipment Distribution Program - A Universal Approach.

I was on a working call this morning with Tracy Luiselli from the New England Deaf-Blind Center and of course we discussed the recent tragedy in Boston. Thankfully, Tracy and her family are safe. Sadly, there are those who perished in the bombing and those who were severely injured.

Tracy and I shared our sadness that our deaf-blind community, our country and our world have experienced so much sadness in recent years due to catastrophic events, some man-made and some caused by the force of nature. Of course we all know that we have lost too many beloved friends and colleagues in the deaf-blind community through accidents and illness.

It would be so easy for all of us to focus on the negative and allow it to become an excuse for not doing what we need to do and a reason to give up. However, I know that the deaf-blind community will not give up because there is so much to be done and despite the challenges so much to celebrate. 

I want to share with you a celebration that our project experienced ths past week-end at the Kentucky Association of the Deaf-Blind Annual Conference. I want to share this with you so that the celebration can continue for you and your constituents.

Much of the focus of our agenda was on technology. Marilyn Trader, our Helen Keller Regional Representative joined us and brought one of her colleagues, Sharon Giovinazzo from North Carolina. Both of these women have so much knowledge and expertise to share and it just so happens that both have incredible energy and passion for the work that they do.

They were here to assist consumers and staff with the Deaf-Blind Equipment Distribution Program. Many of the consumers attending live in more rural areas of our state and are older. Very, very few had a cell phone and none had an iPhone. To my knowledge, no one owns an iPad. Marilyn and Sharon were able to demonstrate the uses of items such as these and provide the consumers with an opportunity to practice using them. Representatives from Office for the Blind and Vocational Rehabilitation were there as well and will serve as follow-up support to the consumers.

The most awesome moment came when Sharon shared an app on her iPad that allowed the consumers to bring the evening sky (stars, moon, constellations) down to where they could see these things. The app works like a GPS system and when the iPad camera is turned up toward the sky an individual can see these things within arm's range. One comsumer with Usher Syndrome who is in his 50's could not remember what these things looked like from when he was a boy and started to weep when he saw the stars again after so many years. Another consumer with Usher Syndrome said, "My family sits out on the porch every night and when I ask them what they are doing they always say 'nothing' because they think I wouldn't be interested. Then they start talking about how many stars are in the sky and try to guess how many there are. I always tell them I don't know because I can't see them. Well .....  I can sure see them now!"

These are the moments that keep us motivated and keep us moving. These are the moments that are both profound and humbling for each of us.

Thank you so very, very much to those of you who were instrumental in securing funding for the Deaf-Blind Equipment Distribution Program.

Diane Haynes, M.Ed.

State Coordinator

Kentucky Deaf-Blind Project

Gloria Writes About "Less is More"

Great insight from California Deaf-Blind Services, Less is More...

Haben Girma Writes at the White House Blog

Haben Girma is being honored as a Champion of Change for her efforts in Educational Excellence for African Americans.  Read her post "After Helen Keller: Empowering Students with Disabilities". 

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

National Child Count - Considerable in Relevance and History

The 2011 Deaf-Blind Child Count has just been published to the NCDB Website. You can find the report at: http://www.nationaldb.org/TAChildCount.php

This year’s report marks the 26^th annual report published by NCDB and its’ predecessors on behalf of the state deaf-blind technical assistance projects.  It is the first and longest running registry and knowledge base of children who are deaf-blind in the world.  Begun in 1986 on behalf of the U.S. Department of Education (Baldwin, 1993), it represents a three decade  collaborative effort between the National Consortium on Deaf-Blindness (NCDB), its predecessors, and each state deaf-blind project throughout the country, as well as those projects funded in the Pacific Trust territories, the Virgin Islands and Puerto Rico.

Over time the child count has been collaboratively designed, implemented and revised to serve as the common vehicle to meet federal grant requirements for both the state/multi-state and national technical assistance projects.  It also has served as a common data collection and reporting mechanism for use across the country and to help identify national and state technical assistance needs for children and youth who are deaf-blind, their families and the service providers and systems which serve them (Killoran, 2007). Today, the Deaf-Blind Child Count summarizes, by state, information related to vision and hearing loss, etiology, age, gender, additional disabilities, education placement, participation in state assessment program, living setting and other variables providing a comprehensive picture of children and youth who are deaf-blind.

The child count was initially requested by the Department of Education to examine the discrepancy between the state/multi-state child counts and OSEP’s annual December 1 counts (Baldwin, 1993). The child count is conducted each year to supplement OSEP’s Federal Part C and Part B Child Counts (Special Education Child Count), which include children as deaf-blind only when deaf-blindness is their single disability. In contrast, the December 1 Deaf-Blind Child Count data is collected for children with deaf-blindness in isolation, as well as those with additional disabilities (Muller, 2006). This is an important distinction in that nearly 90% of the children and youth on the Deaf-Blind Child Count have one or more additional disabilities. Consequently, a majority of children who are deaf-blind or have deaf-blind intervention needs are not identified as such on OSEP’s Special Education Child Count.  For 2011, a total of 9,387 children and youth are included on the December 1 Deaf-Blind Child count.

In contrast, WESTAT (2012) reports that 1,587 students (3-21) were identified as deaf-blind on OSEP’s 12/1/11 Part B Special Education Child Count. Due to the non-categorical nature of Part C, no infants or toddlers are reported as deaf-blind since they are all reported as developmentally delayed or at-risk by their state Part C lead agencies (WESTAT, 2008). This 83.1% discrepancy between Part B and Part C reporting of children and youth who are deaf-blind and this nation Deaf-Blind Child Count is significant. State Deaf-Blind Project directors consistently indicate that most Part C lead agencies and State Education Agencies report their children and students with deaf-blindness as being developmentally delayed, multiply disabled, visually impaired or hearing impaired, rather than identifying them as deaf-blind. Concerns about the under-identification of deaf-blindness and its resulting unique intervention requirements has been a consistent problem and one which results in a lack of, or delay in receiving, appropriate intervention and instruction critical to children’s early development (Muller, 2006). The opportunity for early identification, intervention and the provision of instructional services aimed at the unique needs of young children and students who are deaf-blind is a critical component that cannot be lost.

In reviewing the child count data submitted over the years, it is clear that no single portrait can be painted to represent a typical child with deaf-blindness. Children who are deaf-blind are as varied as the number reported and the nature and extent of deaf-blindness in children is often misunderstood (Malloy & Killoran, 2007). These children represent one of the lowest incidence, yet most diverse group of learners receiving early intervention and special education services. They are an extremely heterogeneous group whose sensory losses may be accompanied by additional physical or cognitive disabilities, complex medical needs and/or behavior challenges (Muller, 2006).

While you are on the Deaf-Blind Child Count page, also take the time to access the data maps that visually present state – by – state data on selected variables.  

Mark Schalock, NCDB 

References

Baldwin, V. (1993) Proceedings of the national symposium on children and youth who are deaf-blind.  Reiman, J. and Johnson, P., Editors, Monmouth, OR: DB-LINK, The Teaching Research Institute, Western Oregon University.

Malloy, P. &  Killoran, J. (2007). Children who are deaf blind.  Practice Perspectives - Highlighting Information on Deaf-Blindness. Monmouth, OR: National Consortium on Deaf-Blindness (NCDB), Teaching Research Institute, Western Oregon University. Available at: http://nationaldb.org/NCDBProducts.

Mueller, E. (2006). Deaf-blind child counts: issues and challenges.  Alexandria, VA: Project Forum at NASDSE. Available at: http://www.projectforum.org

WESTAT. (2012). Part B annual report tables. Retrieved September 2011 from http://www.IDEAdata.org

WESTAT. (2012). Part C annual report tables. Retrieved September 2011 from

http://www.IDEAdata.org 

Gloria from CDBS on the Ipad as an Informal Assessment Tool

As an educational specialist I make school and home visits to provide technical assistance to families and service providers.  On many recent home visits I have brought along the iPad to help me get a better idea of the child's interests and needs. I have found the iPad is a great informal assessment tool because 1) it's very interactive even for the child who has a very limited attention span, because if the child has enough vision to perceive what is on the screen, the child usually responds, 2) it’s fairly easy for the child to activate, 3) it can run apps that offer different degrees of complexity so I can meet the child at the level where the child is, and 4) with one device you can present information in different formats, e.g., from information that already comes in the apps to content that I can create on the spot, such as a photo of the child or a favorite family member to observe the child’s reaction. The iPad is like having a large bag full of all kinds of interactive things that I can show to the child, and best of all it comes in one thin and small portable device.

An important strategy that I follow when introducing the iPad and the different apps to the child is to bring the iPad close to the child and observe how the child responds - no grabbing hands, no making the child sit in a particular way - allowing the child to interact or not.  I then present the child with an app that I believe will be easy for the child to follow and engage with.  I observe what the child can do and how he or she looks at the screen, what kinds of images the child pays attention to, how the child interacts with the iPad, and how much time the child remains engaged. Finally I slowly increase the level of complexity of the apps and observe how far the child goes.

For young children or children with limited educational exposure you may want to check out the sequence to introduce apps based on sequential developmental stages Cristi Saylor and I wrote in the latest CDBS newsletter. The article is called "Using the iPad and a Sequence of Apps for Young Children with Multiple Disabilities." Here is the link: http://www.cadbs.org/newsletter/resources-fall-2012/

I would like to finish with an example from a recent visit with a young child. In this instance the little boy took a while before he started engaging with the iPad. Initially I was little surprised because I could see that he had some vision. After a while though he began to touch the screen with an object he had in his hand. Later he touched it with his own hand although he preferred only to watch. So I began with the apps in the first level of the sequence I mentioned earlier, where he only needed to look at high contrast images that moved without his needing to touch them. Eventually I moved to a slightly higher level where the child needed to touch the screen in a particular area where some characters appeared, but he was not very responsive. I concluded that he was was not yet able to distinguish gross details. When we were finished, the mother said that she had never seen her child engaged this long in an activity; we had played together for about twenty minutes. 

Gloria Rodriguez-Gil   California Deaf-Blind Services