In this issue:
  • Families
  • Highlighting Local Parent Leaders
  • South Dakota Family Supports
  • National Family Supports
  • Strategy of the Month: Collaborative Teaming
  • Upcoming Trainings, lots of new opportunities!
As we begin this new year, we want to highlight the importance of families! We have provided many local and national family supports and resources as well in this newsletter.
Please reach out to us if you know families who could benefit from this information and we would love to add them to our mailing list!
Rose and Brandy
The Importance of Families!
Training, Advocacy, Leadership
Having worked in the field of developmental disabilities for over 40 years and encountering many families along the way, I am always amazed by the strength of families. Despite various challenges, families learn how to effectively navigate the service delivery systems. Think about what it takes to open you home over the course of several years, to several birth to three providers so that your child can get the services they need. Imagine being the only parent (s) in an interdisciplinary team meeting for your child, trying to make sense of what is being said, and having an equal voice. It can't be easy! The Deaf-Blind Project recognizes the importance of families who are instrumental in impacting the outcomes for their child, as well as helping other families with similar situations. This newsletter is dedicated families and the great supports that we have in our state. We would like to share with you some of the awesome families that are part of the Deaf-Blind Project and the work they have done in the area of family leadership!
-Rose

What the Research Says about Families!
Reynolds (2011) concluded that a " combination of advocacy and leadership skills and knowledge of best practices provide the strongest foundation to assist people to obtain needed services and lead full lives."

"Families also play an important role in promoting improvements in policy and practice" (Wehmer, 2014)

It has been said that knowledge is power . This can be useful when attempting to advocate for necessary services and programs for their child. Research has shown that parental and student involvement in life planning results in the most positive outcomes for the student. We are fortunate in SD to have many resources that can assist parents and individuals with developmental delays, so that they can become better advocates for themselves.   

So many to chose from! Better than not enough! -Rose
South Dakota Local Parent Leaders!
Amber Finnesand
 I am married to Scott and together we have two boys, Henry (5) and Oliver (4). We reside in Sioux Falls. Henry is a kindergartner in the Harrisburg School District. Oliver is a preschooler in the Harrisburg School District. Oliver has multiple disabilities including CVI and a history of chronic ear infections.

Our family has completed the Life Course Training. We have created a communication chart for Oliver and a Life Trajectory for Oliver’s life, Oliver’s life changes, Henry’s life, and our family as a whole. We have found these tools to be a great way to express our desires, hopes, and expectations for each of the different situations, particularly when working with the school and his therapists. 



I have taken advantage of many leadership training opportunities within South Dakota. 

Most recently, I am a 2019-2020 SD LEND parent trainee. As the parent trainee, I am focusing my research on Cortical Visual Impairment (CVI). This is being done by creating a greater awareness of CVI within the state, promoting and providing training for CVI, and continuing efforts for the CVI Community of Practice (CoP). 

"SD LEND has been a fantastic way to get to know graduate students and grow interdisciplinary skills. These students are leaders within their own fields and will continue that leadership in their professional roles". 

Additionally, I have participated
in Partners in Policymaking, Year 26. Partners is a fantastic way to become connected with others in the state and truly learn how to advocate for yourself, your family, and others.

Finally, I am Secretary for the Family Support 360 Council. Family Support 360 Council is a great way to advocate for individuals and families from around the state who receive support from Family Support 360.
Elaine Fritz
As a parent of a deafblind child, I am offered many leadership experiences and trainings.

I believe that as a parent leader, it is my job to stand in the gap between parenting and services. It’s my job to support and provide leadership, and ensure providers are trained in Charge Syndrome. I consider myself to be the CEO of my son’s health care and educational team. This mindset factors out the emotions and assumptions that can cloud making the right decisions for my child. I do not make assumptions that any service provider or any education team member have experience with the specialty of deaf blindness, or CHARGE Syndrome, but they do need the passion to learn. My job makes the connections team members need to get them trained to fill in the gaps missing from common systems.

As the Parent Trainee for the Center for Disabilities LEND Program, This experience gave me valuable perspective from the clinical side of things. I tell LEND students to remember that a clinic experience is just another day at work for them, but for the family, clinic is a stressful day in their life. The family may or may not get answers they are looking for to help ease their frustrations. LEND students are immersed in the complicated web of many services and agencies that provide support and services. In addition to their education as PT, OT Speech, or audiology students. The LEND experiences enhances their roles on interdisciplinary teams. As a parent trainee, I offered the students my experiences that related to the topics being discussed, and in clinics I offer empathetic empowering support to the families.

I also provide “real life experiences” for LEND students to engage first hand with families, so they connect their career to what happens after a clinic visit. Over the years we have had many students come into our home, as well as engaging on many parent panels in LEND classes on topics ranging from Deaf blindness to multiple disabilities and access to services.

Last year, a LEND student participating in clinics in South America assisted in diagnosing a child with CHARGE syndrome. She told me after really listening to the parent, things started to remind her of me, and meeting my son. She asked the doctor to look for colobomas in the eyes and the team was able to diagnose the child with CHARGE syndrome. It is crazy to think that that’s how much my involvement with LEND students impacts the world.

LEND also gave me the opportunity to research horticulture therapy as a discipline. My research project presentation integrated horticulture therapy activities into interdisciplinary IEP goals. As a Master Gardener and professional horticulturist with a deafblind son, it made perfect sense to blend my many roles into one.

In addition to inviting, LEND students to meet our family, we had the pleasure of meeting a AUCD/ADA Fellow, sponsored by the Center for Disabilities. Goodluck is from Africa and his project was to improve deaf education in Tanzania. He learned from us as parents of a child with a hearing impairment and other disabilities, what works and what does not work in the area of Deaf education in the SD.

I am currently a parent representative for Services of the Blind and Visually Impaired. This agency provides services to youth and adults with vision impairments and Deaf-Blindness in our state.

Lasty, I am a member of the Deafblind Advisory Board.
Teresa Nold
I currently reside in Harrisburg, SD and work at SD Parent Connection. My husband is Deaf; ASL is our primary language that is used at home. We are raising two wonderful young men. Isaac is 22 years old and is such a laid back, technology driven, and curious young man. He is Deaf-plus- he has multiple disabilities- Cerebral Palsy, Moebius Syndrome, and Trigeminal Trophic Syndrome. This has all created some challenges with his vision, mobility, communication, and learning. He works part time at Great Life and loves his job. Caleb is 19 years old and is smart, has a caring heart, and a math genius. He is a freshman at Dakota State University. I was raised in a family where ASL was always used . Both of my parents, and brother and sister, are Deaf. 

My husband and I have had to learn the art of compromising, but not giving up our rights, when advocating for our children. That is a challenge, but one we will continue to do our best at to make sure our kids are able to access the things they deserve, as well as the many other individuals in need of accessing services and supports.

 
I was selected as a LEND parent trainee 2013-2014. It was a wonderful experience to be a part of a group of passionate student leaders. I learned tremendously on the perspectives of other professionals, as well as the guest presenters. Each year, I also sign up for the Real Life Family Experience, a program in which a student is appointed a family to learn more about the family perspective on raising/caring for a family member with disabilities.

Leadership opportunities:
 
  • SD Partners in Policymaking Graduate, Year 12
  • Vice President for the SD Association of the Deaf (2017-2019, 2019- current)
  • Board member of SD Parent Connection (2002-2008)
  • Parent of a Deaf child Representative on the National Deaf Center, SD Team (2018-current)
  • Member of the National Coordinating Center for Genetics EHDI group (2017-2018)
  • Trained Facilitator for the Person Centered Transition Assessment
  • Legislative Chair for the South Dakota Association of the Deaf Legislative committee (2017-2019). Under my direction we passed 2 bills: 
  • the Language Equality Acquisition for Deaf Kids (LEAD-K) bill (HB 1155) March 2018
  • Deaf and Hard of Hearing bill (HB1122) 2019
  • Selected and assigned as Chair for the LEAD-K committee
  • Co-Chair of the AAP EHDI Subcommittee workgroup
South Dakota Organizations & Opportunities
Our LEND clinic works to improve the health of infants and children with neurodevelopmental and related disabilities.

We help families who are interested in learning how to support their child's strengths and address their weaknesses and health care needs.


LEND Developmental Clinic provides a free interdisciplinary evaluation to children who are between ages six months to six years of age years old who may have a developmental concern. 



The South Dakota Parent Connection hosts monthly Lunch and Learn Education Sessions as well as many online webinars available for viewing at anytime. Topics include Behavior Interventions/Strategies, Education/School Issues, Legal/Life Planning, & Parenting Topics.
UPCOMING LUNCH & LEARN SESSIONS

We are fortunate in South Dakota to have programs offered through the SD Department of Human Services (DHS), Division of Developmental Disabilities and Council on Developmental Disabilities that offer support to families. 

Financial support and resources

Child/adult care

Financial support for people with disabilities and their families



The South Dakota DHS has a Community of Practice for Supporting Families of children with developmental disabilities. This program is housed within DHS and most of the work done in this area is to provide training to families using the:


This is used to assist families and self-advocates in planning for the individual's current and future life and based on this core belief:
"All people have the right to live, love, work, play and pursue their life aspirations in their community."

Follow their Facebook page .

If interested in this training please contact
Rose Moehring rose.moehring@usd.edu
605-357-1437. 
Partners in Policymaking is an innovative leadership and advocacy training opportunity designed to involve and empower people with developmental disabilities, parents of children with disabilities and other family members.




Family Weekend
Summer 2020
SD School for the Biannual Deaf-Midwest Deaf-Education :

SAVE THE DATE
Summer 2021,
Sioux Falls.


We now have our own
South Dakota Charge Foundation Liaison

Kristin Knutson

Read Kristin's







Midwest Ushers Syndrome Families

This group exists to connect families who live in the Midwest and have an immediate family member with Usher's Syndrome.

Find us on Facebook
National Organizations & Opportunities
Check out Liam and his family from South Dakota!!
These are monthly flyers to share current training opportunities and high quality resources with families of children with deaf-blindness.
NFADB has a podcast filled with useful information for families with children with deaf-blindness!
This video is called "I Wish I Had". It was created by parents sharing the things they "wish they had..." when their child with deaf-blindness was younger. It's a great way to hear other parent's perspective!
Check out January's article on

"Parenting is hard -- physically, emotionally, and spiritually. This month, several parents explore the variety of emotions they have experienced through their parenting journeys, from acceptance to defeat".



Complex Child is a monthly online magazine written by parents of children with special healthcare needs and disabilities . It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand.

Articles are on a wide variety of topics ranging from basic information on medical conditions and treatments to advice on how to beat insurance company denials.
Strategy of the Month:
Collaborative Teaming and Family Partnerships
*This graphic is a little hard to see through this newsletter.
Please click on it and it will take you to an interactive site!
Accessible version here !
California Deaf-Blind Services has put together this wonderful resource:
Involve the Family

  • Communication can be spontaneous and informal while still providing important information
  • Daily home/school communication is invaluable
  • Current technology provides many opportunities for effective
Why is Team Communication Important?

Communication promotes consistency, which:
  • is crucial for learners who are deaf-blind
  • promotes security and confidence for the learner
  • helps learners reach goals faster

Sharing helps us all to understand the learner who may not express or explain things such as:
  • likes and dislikes
  • medical information
  • communication strategies

Communication increases investment and participation
What is Collaborative Teaming?
Collaborative teaming is defined as a group of individuals working together to achieve mutually defined goals.
Collaborative teaming is considered the best practice for meeting the needs of learners who are deaf-blind.

*Information in this strategies section is from the NCDB Open Hands Open Access Learning Modules
Upcoming Events/Trainings
Rose Moehring, M.A. Spec. Ed.
Certified Low Vision Therapist
Deaf-Blind Program Director
Rose.Moehring@usd.edu
(605) 357-1437
Brandy Sebera, M.S. Spec. Ed.
Deaf-Blind Program Instructor
Brandy.Sebera@usd.edu
(605) 357-1437
South Dakota Deaf-Blind Project| Visit our website!
SD Deaf-Blind Program Grant #H326T180053