Setting an Equipment Distribution Program in Motion

Posted by Betsy McGinnity, Perkins School for the Blind  

 The Twenty-First Century Communications and Video Accessibility Act is designed ensure that people with disabilities have access to emerging technologies. A very exciting provision of the new law required the Federal Communications Commission (FCC) to establish a National Deaf-Blind Equipment Distribution Program and allocate $10 million annually for its operation. The FCC envisions that every state will have a Deaf-Blind Equipment Distribution Program (NDBEDP).  Money will be allocated to states based on their population. These funds cover assessment, distribution, installation and training on equipment that enables an individual who is deaf-blind to use technology for distance communication.  Distance communication includes telephones, cell phones, internet, etc.

Over the past six months the FCC has asked interested persons to comment on their proposed rules for the NDBEDP.  Many people from all parts of the deaf-blind community responded.  The FCC has been extremely responsive to the comments and has incorporated much of the feedback into the rules for the pilot program.

The goal of the new law is to help as many people as possible access new technologies. The FCC is striving to meet the spirit of the law with regard to eligibility criteria. The FCC is using the definition of deaf-blindness from the Helen Keller Act and is encouraging distribution programs to consider functional criteria, including environmental factors like ambient noise or lighting. There are no age restrictions or work requirements. This is a “low income” program but, due to the extraordinary expenses people who are deaf-blind face and the high cost of specialized equipment, the FCC is using 400% of the federal poverty level as the criteria.

The FCC thought at first that it would use its established network of equipment distribution programs (EDP) as the primary deaf-blind distribution programs in each state. In response to comments from consumers and advocates, they decided to invite non-profits, other agencies and EDP to submit applications.  The FCC is strongly encouraging interested entities in state or across states to find ways to collaborate.  The FCC anticipates that it will ask for applications from states in the summer.

 Because this is a new program and there are many aspects to it, the FCC decided to establish a pilot program for a two or three year period. They will evaluate the effectiveness of the program before establishing permanent rules.

Expanding Opportunities in Texas for Spanish Speaking Families

Posted by Paddi Davies, NCDB

     This story begins over six years ago with five women sitting around a conference room table at Helen Keller National Center. The question we were pondering was how to help state deaf-blind projects address the growing need to provide technical assistance (TA) to families who were underserved or underrepresented on deaf-blind projects.  This was a daunting question given that we were five middle-class Caucasian women. The concerns that brought this conversation to the table were 1) deaf-blind projects seemed to be under identifying children from specific populations, 2) families from certain populations were not participating in project activities, 3) families were reporting that they weren’t aware of services for their children and family, 4) and projects claimed they felt inadequate to serve certain established or growing populations within their states. Our conversations with states helped us identify populations who were potentially underserved – families whose native language was not English, families from remote regions of states, teen parents or grandparents raising grandchildren, families in poverty, undocumented immigrant families – the list went on and on and the underserved populations looked very different from state to state.  That initial conversation has led us down a path of discovery that has been interesting, exciting and enlightening. 

      There are overwhelming amounts of information written about the cultural norms of any particular culture or ethnicity.  We knew immediately that trying to become knowledgeable about any one group was not the most effective or efficient strategy to pursue. One of our early consultants and mentors, Dr. Beth Harry, shared the concept of cultural reciprocity, or how to respect and learn about another culture, while understanding and sharing information about predominate (American) culture. She often used the quote, “Nothing for us, without us.” With this as our underpinning, we worked with two different states (NJ and TX) to develop a focus group process to gather the input of underserved families regarding family strengths, needs, expectations and their suggestions for culturally appropriate TA strategies. In both states we worked with Spanish speaking families of children who are deaf-blind.  The families were very gracious and taught us many lessons!   

      

     These are a few of the lessons we learned about outreach and technical assistance to Spanish speaking families:

·        Partner with local agencies that have credibility with families from the target population. These may be outside any of the agency partners you normally have (i.e., churches, community centers)

·        It’s essential to have a cultural liaison that speaks the native language of the participants and that has already established trust and credibility with the families.

·        The most effective form of outreach was having a Spanish speaking partner call or visit the families to extend a personal invitation to the focus group. Just sending an announcement, even though it was in Spanish, was not very effective.

·        Families felt most comfortable attending an event that was in a location they were familiar with and trusted.  Avoiding school or government offices is advised.

·        Hold the meeting in the native language of the participants. Don’t ask which they would prefer because out of respect for you as the host, they may say that English is fine.

·        Be ready to provide, or help find resources for, a range of supports to facilitate family involvement. Let the families tell you what they need. Be honest about what you can and can’t provide and offer suggestions of other resources.

·        Be flexible and expect the unexpected. In each focus group the event went much longer than we planned for and more extended family members than we anticipated showed up. Order extra food!

·        Allow extra time for storytelling. Families used this time to celebrate, commiserate and share resources.

     The latest chapter in this story is an exciting one. One of our primary goals in Texas was to establish local leadership to continue working with the Spanish speaking families from the focus group. The deaf-blind project can't be the leader for many reasons, including the fact that it is a nine hour drive to where the families live in the El Paso area.  Not only have we built a wonderful partnership with local agencies, but we're on the road to having some great family leaders in the group. One of our partner agencies, Paso del Norte, offers an extensive seven-week family leadership training program to families of children with special needs. I'm happy to report that we have eight Spanish speaking parents signed up to participate in the next cohort of this training.  Our dream is that these parents will become partners with local agencies and the Texas Deaf-Blind project and help support all of the Spanish speaking families in El Paso who have children who are deaf-blind.