Causes of DeafBlindness

A number of different conditions can cause deafblindness……here’s some information on the most common

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CMV

Cytomegalovirus is a common virus that can infect people of all ages.  It is one of the most common diagnoses that we see for children on the Kentucky DeafBlind Project census.  This is a virus that typically will go unnoticed in a healthy individual since it rarely causes problems or symptoms.  CMV is not the type of virus that spreads  by just being around someone.  CMV can actually lie dormant in someone and flare to activity.  When it is active it spreads through blood, urine, saliva, breast milk, tears, and bodily fluids.  Exposure to CMV while pregnant can affect the baby.  

There are 2 types of CMV that can affect the baby: congenital CMV and perinatal CMV.  Congenital CMV is when the baby becomes infected before birth.  Perinatal CMV is when the baby becomes infected during birth or soon after.  This virus can affect a baby’s hearing, intellect, vision, cause seizures, coordination, muscle weakness and can cause death. 

A PERSONAL STORY RELATED TO CMV AND KDBP:

The Kentucky DeafBlind Project met Sarah Streeval when her daughter, Bella, was referred to us.  Bella (2017-2020), a sweet baby with an infectious smile and giggle was diagnosed soon after birth with CMV.  Sarah was determined to learn as much as possible about CMV and after Bella’s death, it became Sarah’s mission to reach out to other parents.  

Now, Sarah is leading the way in bringing awareness and advocating for measures of change to increase education and universal screening for CMV.  Her courageous fight to change awareness honoring Bella’s life and memory is by taking action and introducing Bella’s Bill to the Kentucky General Assembly (https://www.bellasbill4cmv.com).  Bella’s Bill was introduced during the 2021 legislative session; it was tabled for further investigation and is being presented during the 2022 legislative session.  

With only 9% of expectant families knowing about CMV, Sarah’s passion continues as she becomes the voice for others through education, telling family’s life stories, and creating strong partnerships. 

To learn more about CMV: https://www.nationalcmv.org/default.aspx  or contact Sarah at sdurbin85@gmail.com 

CVI

FIRST STEPS

First Steps is an early intervention program (Part C IDEA) that serves children from birth to age three who have a developmental delay or a medical condition that is known to cause a developmental delay.  

Why contact First Steps?

One-to-one service – come to you

First Teaching tool – understand what’s happening with your child, how they crawl, breaking down diagnosis and milestones/progressions

First call to action

Coming into the house – natural environment.  Coming in as coaches.  

Family driven – find out needs/concerns to develop goals throughout the year

Services are designed to identify and meet a child’s needs in five developmental areas, including: physical development, cognitive development, communication, social or emotional development, and adaptive development.

A referral can be made by anyone to the Cabinet for Health Services’ point of entry (POE) https://chfs.ky.gov/agencies/dph/dmch/ecdb/fs/PointOfEntryListing.pdf

Eligibility is determined through assessments and evaluations.  Once eligible, an IFSP (Individualized Family Service Plan – read more about IFSP *link to our info*) is developed to document the supports for the child.

For more information, visit the Cabinet for Health and Family Services, Early Childhood Development branch https://chfs.ky.gov/agencies/dph/dmch/ecdb/Pages/default.aspx 

KY SPIN https://www.kyspin.com/parents/education/birth-to-3-years/ 

INDIVIDUAL EDUCATION Plan (IEP) DONNA

> IDEA and “DeafBlind”

What is an IEP?

An IEP is an Individual Education Plan!  This is a legal document that is created by the school team and family, TOGETHER for a student receiving Special Education Services.  

The IEP looks at the present levels of the student, describing how the child is currently doing in school and how the child’s disability affects their involvement and progress in the general curriculum.  After present levels are established as the students baseline, the team works to identify goals and services to be provided by the school team to support the success and progress of the student.

An IEP must legally be reviewed annually by the ARC (Admissions and Release Committee).  The IEP is the document.  The ARC is the group of people at the meeting.

??? – Possible link to our resource page if we have multiple IEP resources

The Short-and-Sweet IEP Overview

INDIVIDUALIZED FAMILY SERVICE PLAN (IFSP) DONNA

What is an IFSP?

An IFSP is an Individualized Family Service Plan!  This is a legal document that is created by the family and the First Steps Provider, TOGETHER.  Services are for young children ages birth to age 3 who have or are suspected of having a developmental disability and/or having a physical disability.

The IFSP is created by the family together with the First Steps Provider.  The home team works together to meet the needs of the family.   The First Steps Provider supports the family by providing coaching.

First Steps follows 6 standards: 

Standard 1: Family-centered ​

Standard 2: Individualized ​

 Standard 3: Evidence-based 

Standard 4: Natural environment ​

Standard 5: Team-based ​

Standard 6: Transition

Identifies questions and  concerns of families for working with their children in the home environment

FS writes goals to support those concerns/questions

FS are coaches – they coach the parents how to do the hands-on work

Using the natural environment of the home to make it most successful

First Steps Link

FAMILY SUPPORT GROUPS

F2FC – Family-to-Family Communities

F2FC brings together families of individuals who are DeafBlind to connect by sharing life experiences, resources, and offer support to each other.  Families register from different states to meet other families who are experiencing the same day to day life.  F2FC meets once a month (September-May) for 90 minutes on-line and has trained facilitators to guide through a variety of selected topics.   

Every year a new flyer goes out with new group information and how to register for that current year.  Contact Carol Darrah (cdarrah@uga.edu) or your DeafBlind Project for more information.

NFADB – National Family Association for Deaf-Blind

NFADB is a nonprofit organization that has served families since 1994. Originally started by and for families, NFADB now has many interested individuals, professionals, organizations, and agencies that wish to empower the voices of families with individuals who are deafblind and advocate for their unique needs, which is the mission of NFADB.

We support and build relationships, partner with great organizations, offer events, share information, resources, and training opportunities, and unite families.  

A great way to meet other families and learn through shared experiences.

Membership information can be found here: https://www.nfadb.org/Become-a-Member

For general information about NFADB visit their website at: www.nfadb.org

CHARGE Syndrome

The CHARGE Syndrome Foundation opens their arms to all parents and families to become a part of their tight knit community.  CHARGE Foundation personalizes their assistance to you by connecting directly with you.  As many of us do, we turn to Google to learn everything we can about new things and that can really become overwhelming, especially when it’s a new diagnosis for our children.  This is when having CHARGE Foundation is so nice!  They don’t have you just sift through the large amounts of information on your own, they instead provide you with the information you are seaking.  They share resources, they help you learn about the medical conditions, therapy, and different education opportunities as it relates to CHARGE.  This is not everything they do, but that is a very short list of the types of things CHARGE Syndrome Foundation offers.  

BRAINSTORM:   Not alone, people to help, people to talk to about decision making, friendships happen between families, learn the medical components to CHARGE

From there they provide guidance to sift through the large amount of information on your own. they share with you the information you are seeking, not leaving you to sift through the loads of information on your own.  o share resources, learning about medical conditions, therapy, education, just to name a few.  

CHARGE strives to have a liaison in each state, Kentucky Kentucky is fortunate enough to have a CHARGE liaison that provides resources, connects families, connects through personal experiences, and can talk more to how the CHARGE Syndrome Foundation has supported their family.  For Kentucky, that person is Sarah Cawthon and she can be reached via email at: cawthonmd@yahoo.com 

To learn more about Sarah, you can access her profile on the CHARGE website.

CHARGE has a national conference every 2 years to learn about medical advances, teaching strategies, life skills, and the most valuable part of these conferences is meeting and developing relationships with other parents.  https://www.chargesyndrome.org/

GFPD – Global Foundation for Peroxisomal Disorders

GFPD families are passionate in making change for their children through advocacy and medical discovery.  GFPD trains families and professionals to advocate in legislation that impacts both the peroxisomal disorder community and rare disease community.  They have a board that consists of a team of researchers and physicians in the field of peroxisomal disorders who work to improve the lives of people diagnosed with peroxisomal Disorders.  Every 2 years GFPD has a Family and Scientific Conference bringing together families and professionals to exchange knowledge and form relationships.  https://www.thegfpd.org/

Grief Group, Support for Families

The grief group was formed for family members who suffered a loss of a child within deafblind community.  Families from all over the United States come together to help each other  process their grief and learn coping strategies.  Family members meet on-line monthly in a private, safe place.  Family members form an unbreakable bond, leaning on each other and gaining strength in the grief journey.  For more information, please contact your DeafBlind Project.

Or

The grief group was formed when a few moms got together who work in the field of deafblind in response to their need and the need of others to form a support group, a grief group whose child has died.  This is a group of family members that form an unbreakable bond where you can ask or say anything!  Information is sent to you which helps you prepare, you can talk openly in a safe, private place on how you and others feel, work through situations that are uncomfortable … a host of information.  For more information, please contact your DeafBlind Project.

INTERVENERS CORINNE

A DeafBlind Intervener has specialized training and skills in DeafBlind.  Interveners work consistently one-on-one with a DeafBlind child to provide them access to information, access to communication, and access to social and emotional development.  This allows DeafBlind children more inclusion in their environment and education.

An Intervener takes things about the environment, like who is there, what is happening, where things are located, (MORE???) and explains them to the child.  This is information missed by DeafBlind children because it is beyond their reach, their visual field, and beyond their hearing.  Not only does the intervener communicate this to the child, but communicates it to the child in their language; whether that be spoken, sign, AAC device, touch cues, or other forms of communication.  The intervener understands a child’s unique communication needs and communicates to them in that form, modeling and developing the child’s receptive and expressive communication.

An intervener meets DeafBlind students where they are as far as concept development, learning styles, and fundamental information goes.  Since the intervener works so closely with the student, they know the student best.  This means modifications and accommodations to lessons, materials, concepts, and so-on are brought to life and broken down through the intervener to make it make sense to the student.  Since DeafBlind children miss out on so much of that incidental learning that happens in life, things that are seen and heard by many and spontaneously learned, the intervener helps bridge those gaps and strengthen the knowledge of the student they work with.

We could go on and on about the wonderful things an intervener can do!

There are many resources available to learn more about Interveners, more about what they do, who are interveners, how to become one, and how might you and your support team discuss if an intervener might be right for your student/child.  We have complied some of those resources and they can be found on the Intervener Resource Page of our website (<<< Make that a link)