FEC MM Meeting Notes

Tuesday, March 14, 2017

Attendees:(19)

  • Emily Mortimer
  • Silvia Verga
  • Debra Pickens
  • Jennifer Bigelow-Stambaugh
  • Pam Kissoondyal
  • Krista Olsen
  • Molly Black
  • Debra Pickens
  • Marcy Meachum
  • Patti McGowan
  • EdgenieBellah
  • Angie Walton
  • Veronica Tuck
  • Jana Villemez
  • Jessica Hall
  • Lisa Lawter
  • Mary Espinola
  • SookyungSih
  • Megan Cote

AGENDA:

1) Welcome to new members - Ian (VT), Angie (TN), and Lisa (OK)

2) Review the results of the FEC Information Survey and discuss next steps as a group

Completion: 18 Surveys Completed & 8 partial

Current Role:

Family Specialist

Family Consultant

Family Engagement Coordinator

Family & Transition specialist

Family Coach (Family Specialist)

Family Coach

Family Engagement Specialist

Family Specialist for the New York Deaf-Blind Collaborative

Family Support Coordinator

Family Support Specialist

NC Deaf-Blind Family Specialist

Technical Assistance Specialist South Carolina Interagency Deaf-Blind Project South Carolina Schools for the Deaf and Blind

Technical Assistant

Percent Time on SDBP:

10 = 100%/ full time

1 = 20 hrs/ month

1= 30 hrs/ month

1 = 30%

1 = 5%

1 = 8 hrs/ week

2 = 20 hrs/ week

Where housed?

Work from home

Dept of Ed

College/ University

Specialized School

How many employed at your SDBP?

As many as 12 and as few as 2.

Family Activities provided by your state:

Huge array! Big Question is….How did you pay for the events?

Does your state deaf-blind project partner with a Parent Center (or centers) in your state (i.e., a Parent Training & Information Center or Community Parent Resource Center)?

Yes – 11

No - 4

Partnerships with other community organizations or agencies:

Everyone said yes. Would you like a list created and shared?

How many family events does your project have each year? What are they?

Anywhere from 1-10. Range from phone calls to weekends.

Does your project use family leaders?

No – 3

Yes – the rest of respondents. But the “training” provided and what’s requested of parent leaders varied significantly.

What are your strengths/ interests:

•Assessment, Visual Impairment

•Communication

•Calendars

•Transition

•Mental health

•Encouraging and connecting families who have same interests/needs

•Family assessment and engagement, small group development and facilitation

•Supporting parents navigating the system and other agencies

•Journaling as an organizational and stress-coping mechanism

•Working with young students with multiple disabilities including hearing and vision loss and their families

•CVI, the CVI range and engineering the school and home environments to encourage increased use of vision

•Person Centered Planning

•Family leadership and support, mentoring, NFADB Affiliate groups

•Etiology of Usher Syndrome

•Role of the intervener, role of SSPs

•Importance of good transition planning

•Augmentative communication, picture communication systems

•Youth transition

What would you like to learn more about?

•Communication and Sensory Learning What are the behaviors telling you

•Early Intervention

•Family Engagement

•Continuing education in all areas.

•Grief counseling

•Person Centered Planning

•Hearing loss and how to work more with that sensory loss.

•Sign language proficiency

•Tactile signing

•Adult transition and understanding services within my state

•collaborate nationally to provide virtual training for parents

•continue unpacking what family engagement means and what it looks like in our roles within the projects.

•Ideas for topics and discussions in a family support group

•managing challenging behaviors in DB kids (biting self, grabbing other people)

•siblings of special needs kids

•how to plan the future for DB teens

•Person Centered/Futures Planning, Interveners and the IEP

•Pro-tactile

•The differences in the Medicaid systems from state to state, how each state differs on how they manage their children

•Transition, Employment & Early childhood

•in depth deaf-blindness

Favorite “GO TO” resource:

Huge list! How would you like me to compile it for you?

Are you a member of NFADB?

Yes = 70.6% (12 respondents)

No = 29.4% (5 respondents)

Do you promote NFADB membership with the families in your state?

Yes = 87.5% (14 respondents)

No = 12.5% (2 respondents)

3) Highlights from the DB Summit related to Family Engagement work

  • What did you take away/ learn?
  • What might you want to do differently?

Emily- Day 1 - loved that they got to sit down with other states with similar needs. Part of state ed system and so she wants to look into how to get money for families avoiding the red tape so they can provide more activities in an easier way. FUNDRAISING GROUP: Possibly Clara, Veronica

Silvia - Cross Cultural Group & how to pull off Family Match across state lines. CROSS CULTURAL: Jana, Edgenie, Pam

Edgenie - Cross Cultural info - serve and return interactions and how they are culturally relevant.

Krista - identifying family leaders in her state and training them; websites for families (KY and Wisconsin?); Partnering and creating family friendly resources. INTERESTED IN FAMILY LEADER DEVELOPMENT: Emily, Silvia/ WEBSITE: Jennifer, Emily, Marcy, Silvia, Mary

Molly - Family Welcome packet & willing to share their welcome letter for parents.

Pam - will share her Families as Collaborative Partners presentation.

Marcy - wants to learn more about connecting to families in birth-3 and when they are ready for that connection - how to be a compassionate resource for them; working with med community to partner. BIRTH-3 GROUP: Jennifer, Pam, Jana, Sookyung, Lisa Lawter, Marcy, Silvia, Angie. Sookyung has info to share from Maternal & Child Health Conference to share.

Patti - still unpacking the experience. Loved the templates from Day 1. Day 2 - Parents are KEY. They need to be empowered and how do we keep them best informed?

Lisa - is the only person on her project so glad to have perspective of other states. Wants more info about the medical community. She gets lots of questions about assessment and wants info to provide families about assessment.

Sookyung - attended Maternal Child Health Conference and loved it! Plans to share info.with this group. Tele medicine and tele therapy. In July she's going to conference in Nebraska.

Megan - needing to have consistency in dissemination for families

Jessica - ASL Classes and how to get them set up. Veronica can help her with this. Look into Signing Time. Marcy interested in helping too. GA DB Project - doing classes on-line free for families and KS School for the Deaf has some too. SC does sign language classes too, but have to be on-site.

Edgenie - has 2 family liaisons who are Spanish speaking she can hook Debra up with.

Look into EHDI resource shared at Summit?

Megan – get list of DB Acronyms to Silvia.

Training Opportunity:

Deaf-Blind Summer Institute @ University of Nebraska July 17-20, 2017 - FREE registration. Key Presenters: Caroline Musselwhite, Gretchen Hansar, and Diane Sheline. For more information you can contact: Tanya Hilligoss: or 402-873-5513

NFADB Membership:

Patti McGowan, PA: