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Family Engagement Update

Family Engagement


A lot has been happening in NCDB’s Family Engagement Initiative! For those interested in learning more about these activities, the update that follows will give you a snapshot of what has taken place over the past nine months and what we have planned for the coming months and next year.

I would love to hear from you if you have any thoughts to share or questions to ask.
All the best,

NCDB Family Engagement Update

Goals and objectives of NCDB’s Family Engagement Initiative
The overarching goal of NCDB’s Family Engagement (FE) Initiative is to improve opportunities for high-quality family engagement and partnerships, including enhanced collaborations with the Parent Centers.

Anticipated outcomes for this five year initiative include:
 The Deaf-Blind Network, the Parent Centers, and national family organizations will develop partnerships with increasing levels of collaboration.

 Parents of children who are deaf-blind will be able to effectively advocate for their child.

 Parent leaders will be able to effectively advocate for all children with deaf-blindness at the local, state, and national levels.

The FE work is guided by three objectives and a series of supporting activities.

Objective 1:
Alignment of efforts between the National Center, State Deaf-Blind Projects, Regional Parent Technical Assistance Centers (RPTAC), state Parent Training and Information Centers (PTI), national parent organizations, and other state-level partners to leverage resources and integrate TA.

On-going and/or planned activities to accomplish this objective include:

Family Engagement Technical Work Group (FE TWG)
A FE TWG was formed and held its first meeting on May 28, 2014. Members of the FE TWG are:
Diana Autin, Director, R1PTAC
Jan Serak, Director, R4PTAC
Liz Healey, Director, PA State PTI
Kelly Orginski, MI PTI
Jennifer Bigelow-Stambaugh, Family Specialist, MI DB project
Egenie Bellah, Family Specialist, TX DB Project
SueAnn Houser, Director, PA DB Project
Patti McGowan, Secretary, National Family Association for Deaf-Blind (NFADB)
Sheri Stanger, Director of Outreach, CHARGE Syndrome Foundation

The FE TWG will convene quarterly to strategize how members can increase awareness of each other’s programs, leverage limited resources to support families and identify successful examples of collaborative partnerships between and among the DB & PTI Networks.

In year two, with guidance from the FE TWG, NCDB will look to expand the number of successful collaborative partnerships. Intensive TA will be offered to a small number of State Deaf-Blind Projects and PTI Centers interested in increasing levels of collaborative activity in their state.

The next meeting of the FE TWG is scheduled for July 25, 2014.

Partners in Action Campaign!
NCDB and NFADB have joined forces to raise awareness on the critical importance of providing individualized supports to children and adults who are deaf-blind. As part of a yearlong action campaign, a series of webinars will be conducted on three specific aspects of individualized services: the role of interveners, improving access to information through technology and the impact individualized services can have on quality of life issues for the individual who is deaf-blind.

The first of these webinars, Looking to the Future of Deaf-Blind Services and the Role of the Intervener, was held on February 12th and the second, The Impact of Technology in the Life of a Person who is Deaf-Blind, was held on June 24th as part of Helen Keller Awareness Week. Recordings of both webinars can be found on the NCDB website [;]

Announcements for the third webinar will be posted in August.

Free Training for Parents on Interveners
A very positive and exciting outcome of the webinar on Interveners has been the collaborative effort of NCDB & NFADB to offer online parent trainings of the Open Hands Open Access (OHOA) Module 3: The Role of Interveners in Educational Settings. The first of these trainings was offered in March 2014 and had a class of 20 parents. Two more have been scheduled for July 7 - August 11, 2014 and September 8 – October 13, 2014.

In an effort to stay connected and supportive of the participants who have completed the training, NCDB & NFADB send each parent a bi-monthly email that contains one or two useful resources and contact information if they should have any questions.

Additional information on this activity can be found at

New Liaison Position in the CHARGE Syndrome Foundation
Over the last three months, NCDB has worked closely with the Director of Outreach of the CHARGE Syndrome Foundation to launch a pilot project to establish the position of CHARGE Liaison to the State Deaf-Blind Projects. TA support has included assistance in developing the job description and recruitment materials.

The primary function of the liaison will be to:
• share the latest CHARGE resources with the state projects and the families
• assist in helping both the Foundation and the state projects in identifying families
• update the Foundation on available state resources
• promote connections among the CHARGE families in the state

The Foundation is currently finalizing its selection of Liaisons. Once completed, NCDB will assist the Director of Outreach in conducting an orientation session for the new Liaisons. An announcement of the names of the CHARGE Liaisons will be sent to all of the State DB Projects as well.

CHARGE Webinar Series
NCDB is a member of the CHARGE Syndrome Foundation’s Education Committee and has assisted in the planning and provision of technical support for the three to four CHARGE Webinars the Foundation conducts each year.

Create an on-line repository of parent leadership training materials, providing open access to all families and partners.

On-going and/or planned activities to accomplish this objective include:

Website on Parent/Family Advocacy and Leadership
For the past nine months has worked on completing the development of the new website. This website will house all of the parent leadership training materials created during the 2006-2011 funding cycle of the National Consortium of Deaf-Blindness. It will also include materials developed by the state deaf-blind projects, NFADB, CADRE, PTIs, Parents as Collaborative Partners Project, PACER and much more.

The website will offer visitors opportunities to:
Meet Parent Leaders* in the community and read their story of advocacy and change;

Learn more about the Power of Families* through actual examples of how parents brought about change;

Find Family Leadership Learning Materials that will help to develop the fundamental knowledge and skills needed to create change;

Discover Training Tools to assist trainers and organizations to plan and deliver family leadership training.

*Much of the current information under Meet Parent Leaders and the Power of Families comes from parents of children who are deaf-blind. It is hoped that once the website is launched, community partners beyond deaf-blindness will join in efforts to expand and enrich the content of the website.

In year two of the NCDB grant, TA will be provided to a small number of interested State Deaf-Blind Projects and PTI Centers to pilot the use of the website materials to design and conduct parent leadership trainings.

NCDB looks to launch a pilot version of this website in September 2014.

Objective 3:
Identify parent leaders throughout the country and develop an online support group for them.

On-going and/or planned activities to accomplish this objective include:

On-Line Forum to Provide Coaching & Mentoring
Efforts to identify and support parent leaders are on-going and threaded throughout all of NCDB FE activities. NCDB will look to its partnerships within the Deaf-Blind TA Network, the PTI Network, and national parent organizations, to help identify parents who currently serve in leadership positions around the country, e.g. members of task-forces or advisory panels, organizational leaders. The NCDB website will be used to create an online forum for coaching and mentoring of parent leaders.

This activity is in the developmental stages.

Kathy McNulty

Posted Jul 1, 2014 by Kathy McNulty

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Comments (9)


Congratulations indeed on this national webinar! How exciting. I shared this information on Charity Rowland's Communication Matrix Community of Practice website as well and will continue to share this wonderful opportunities. Thanks to you and to Myrna for all of your hard work and outreach to Spanish speaking families! Maravillosa y Gracias!

Amy Parker

Posted Nov 18, 2014 by Amy Parker

The National webinar for parents who speak Spanish a great success!

It is extremely important for parents of children with special needs to be aware of their child’s right to a free and appropriate education. Outreach efforts to minority families are particularly important, as they typically are not as familiar about their eligibility to different programs as well as not being familiar with state and federal laws. For this reason, the New York Deaf-Blind Collaborative (NYDBC), California Deaf-Blind Services (CDBS), National Center on Deaf-Blindness (NCDB), and the National Family Association for Deaf-Blind (NFADB, have formed a partnership to conduct a series of webinars to support learning opportunities for Spanish speaking parents who have a child who is deaf-blind.

The first of these webinars, Learning Basic Rights about Special Education, was held on November 8th and was a great success! Over 70 parents participated from AR, CA, CO, PA, ND, NY, TN and Puerto Rico. Several states organized gatherings to enhance opportunities for interaction. In Puerto Rico, the webinar was broadcasted as part of Puerto Rico’s Annual Family Congress. Over 25 families gathered in Long Beach (CA) to watch and participate in a facilitated discussion immediately following the presentation. Similar gatherings were held in three meeting sites in the New York City area.
Participants of this webinar learned the educational rights they are guaranteed under the law, specifically the IEP process, regulations and timelines. Future webinars will focus on early intervention and transition to adult life. Dates for these webinars are: March 14 and June 6, 2015.

Myrna Medina, Family Specialist from CA Deaf-Blind Services and Clara Berg, Family Specialist for the NY Deaf-Blind Collaborative facilitated this presentation and shared their personal and professional experiences. Participants were very responsive and asked many questions. Some of their questions were in reference to signing the IEP, requesting copies in advance, what’s the role of the Intervener, etc.
For those who were unable to attend, the webinar was recorded and can be viewed at under the title of “Conociendo los Derechos Básicos de Educación Especial” or you can request copies of the Power Point presentation contacting Myrna or Clara.

We hope to hear from you!

Clara Berg

Posted Nov 18, 2014 by Clara Berg

Hi Gail,
The families involved in our deaf-blind playgroup have children from 1 year to just turned six years old. So many of them were looking for more information about entering into the school system at a preschool level. The parent of the 6 year old was able to share her experiences which was helpful for the other parents and I think empowering for her as well. They wanted to know what to expect from the assessments and what to expect at the meetings. They were concerned about what type of one-on-one support they could get for their child (all of them would benefit form interveners and we hope any paras assigned to them will be join our next CA-ID-MO cohort in the OHOA Trainings starting up in Oct.). They also wanted to talk about knowing whether a goal was meaningful and how many goals are enough. It really was a lot of the first time questions many parents have. At our last group meeting in the beginning of the month the facilitator of the group who is the DHH early intervention specialist led a discussion on many of these items. I was able to provide the group a resource list with several good links to online resources--most of which I found in NCDB library and on your Families page and I also wrote a 2 page Fact Sheet on how parents can best advocate for their child throughout the IEP process. It will be up as a Fact Sheet on CDBS website soon and it might be a helpful resource to share. I also plan to develop one more Fact Sheet for families related to the development of meaningful IEP goals for students. One other area of need I noticed during our discussion with the parents was some unease and nervousness about how to speak up and worries that that the new team won't really know their child when we began discussing thei importance of their role as their child's primary advocate. So I do really think all of the activities this family engagement initiative is planning in terms of supporting the empowerment of parents and other primary care providers is so important. I think it can be really scary for a lot of parents to walk into that room and sit at a table filled with "experts" and their reports and they often feel intimidated about asking questions, offering different opinions, suggesting more services or supports. I hope this is helpful.

Julie Maier

Posted Aug 21, 2014 by Julie Maier

Julie, you mention so many great ideas and outcomes in your comments. Being an information person, I was very interested in you wording about parents looking for information to assist in their efforts to get appropriate services for their children and the interest in finding and sharing good resources. Do you mind sharing some of your perceptions on what kind of information parents found most useful. We are always looking for ways to improve organizing all of the resources that we have and highlighting things that we think are valuable. The for Families page on our site is one way that we look to disseminate those resources. So some ideas for fearuing things useful to families would be really helpful.

Gail Leslie

Posted Aug 15, 2014 by Gail Leslie

Kathy, thanks for this update on all of the exciting family engagement initiatives. It was wonderful to hear what has already been accomplished this year and even more exciting to hear what is planned for the upcoming years. I love the idea of establishing parent leaders within each state or local region who can help support family empowerment and advocacy efforts. This past year I have been involved in a collaboration with an agency in the SF Bay Area who supports early intervention for babies and young children who are deaf and hard-of-hearing. We jointly planned and facilitated biweekly play group meetings for families of children with deafblindness aged birth-6 years. The initial intent was to provide hands-on training and feedback through discussion from professionals to the parents. Another, very exciting, outcome has been the growth of empowerment and advocacy among this small group of families. They continue to seek information about deafblindness, effective supports strategies, accommodations for their individual children, but they also are asking for more information about how they can advocate for interveners for their children, proper services and accommodations, and well-written meaningful IFSP and IEP goals, as well as how they can share information about deafblindness with others. The families are also increasingly serving as important informational resources, supportive cheerleaders, and mentors to each other since some families have older children who can let the familes of younger children know what to expect with upcoming surgeries or choosing a preschool etc. Exciting stuff. I look forward to hearing more ways that the CDBS staff to collaborate with our state PTIs and local agencies to empower families further.

Julie Maier

Posted Jul 15, 2014 by Julie Maier

Hi Gail. I'll be happy to speak with you at the DB Summit about my pilot project using State Parent Liaisons to assist me with the sharing of information between the projects and the CHARGE Foundation and families.

Sheri Stanger

Posted Jul 15, 2014 by Sheri Stanger

Also, I noticed that you have your Family Engagement Technical Work group organized and ready to go. It is great to see the mix of state projects, national family organizations and PTI's represented. That is some formidable cross pollination. I know that in those first meetings, people are largely getting to know one another but it is always energizing to hear ideas, enthusiasms and questions that others are bringing to the table. Partnerships can take a while to build, but you have some powerful opportunities with this group.

Gail Leslie

Posted Jul 15, 2014 by Gail Leslie

Gail - Glad you found the information helpful. Sheri Stanger, Director of Outreach for the CHARGE Syndrome Foundation, will be attending DB Summit and I'm sure she will be happy to answer any questions people may have about the new CHARGE liaison position.

Kathy McNulty

Posted Jul 15, 2014 by Kathy McNulty

Kathy, Thanks for posting this information. It a helpful touchstone for all of the things going on. Sometimes it is difficult, even within our own project, to have a detailed awareness of all of the initiative activities. The CHARGE liaison must have slipped right by me. It is a great idea.

Gail Leslie

Posted Jul 11, 2014 by Gail Leslie

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