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For Families

The first step in being eligible to receive services is registering a child with combined hearing and vision loss, ages birth to 21, with the KSDB Project.  A parent or a school team member may register a child by completing the online application form.   A pdf version is also available under forms on the Resources page.

For family engagement activities and support, please contact our Family Engagement Coordinator:

Lisa Collette at lcollette@kssdb.org.

Kansas Deaf-Blind Project Services Offered to Families:

A limited number of parent scholarships is available each year to assist parents in attending conferences or training relevant to their child’s disability.  To apply for a scholarship, please complete the Application for Family Scholarships.

(Supporting Parent Access to Resources Knowledge, Linkages and Education) – A program for individualized learning that helps families be better advocates for their child.

The SPARKLE training teaches the following topics: deaf-blindness, vision, hearing, touch, concept development, intervention, communication.  Please contact the KSDB Project if interested in the training.

  • Discover CVI Online Parent Group is a place for families to connect, share ideas, information, and resources about Cortical Visual Impairment.  If you are a parent of a child with CVI and are interested in joining this group, please register here.
  • Reverse Happy Hour is an online family series providing information and parent training about deafblindness, transition, and other relevant topics.  Parents of children on the KSDB Project Registry are invited to participate.
  • Siblings Roundtable supports the siblings of children or youth with combined hearing and vision loss.  Being a sibling to someone who has a disability has some joys and challenges.   Siblings Roundtable is a platform to connect with other siblings five years old and up.
  • Annual Family Day is a yearly networking event for our families to foster a community of support.
  • Parent-Child Playgroup (children birth to 5) – To equip families with strategies/skills they can integrate into their daily activities and provide parent-to-parent connection.
  • Family to Family Communities (F2FC) – This group is a collaborative effort among the National Family Association for Deaf-Blind (NFADB), the National Center on Deafblindness (NCDB), and State Deaf-Blind Projects.  F2FC offers families a platform to connect and share support by sharing information and resources and just being present to listen and understand the challenges and triumphs of raising a child with deaf-blindness.
Transition planning helps students with deaf-blindness prepare for life after high school.  Kansas requires transition services to be included in the student‘s IEP beginning at the age of 14.  It is helpful to have Person-Centered Planning completed to support the process.

Because learners with deaf-blindness often have complex needs, it is recommended to start the transition plans earlier.   It is a collaboration between the student, family, educational team, and adult services such as vocational rehabilitation and other relevant agencies.  It is essential to include a transition planning team member who has a strong understanding of deaf-blindness.

Beyond formal transition planning, preparation for adult life really begins much earlier in a child’s life with activities that promote self-determination, establish community connections, and build skills that are needed for future employment and lifelong learning. (https://www.nationaldb.org/info-center/educational-services/transition-planning/)

The Kansas Deaf-Blind Project offers the following resources to support your child, family, and the educational team at no cost.

  1. Conduct Person-Centered Planning utilizing Charting the LifeCourse Framework or MAPS (Making Action Plans) to develop a vision for a good life for the student (your child with deaf-blindness); identify or develop supports, and explore what it takes for the student or family to live the good life you envision for the student.  The KSDB Project offers Person-Centered Planning in any stage of the student’s life: early childhood, school-age, and transition to adulthood.  Request for Person-Centered Planning here.
  2.  Connect the family and school team to our partner agencies for additional services or information: Helen Keller National Center, Kansas State School for the Blind, Kansas School for the Deaf, Families Together.
  3. Recorded webinars and training on pertinent topics.
  4. Provide related information requested by the family or educational team.
Charge Syndrome
  • If your child has CHARGE Syndrome, contact Kimberly Freeman at kansaschargeliaison@gmail.com. Kimberly is the Kansas CHARGE Parent Liaison of the Charge Syndrome Foundation.   She assists the KS Deaf-Blind Project in disseminating resources and promoting connections among CHARGE families in Kansas.
Usher Syndrome

Additional Programs/Services:

Supporting You is a statewide support/mentorship program to connect Kansas families with other Kansas families raising children with special needs and need a lending ear.  Supporting You is created by the Special Health Services Family Advisory Council (SHS-FAC).

Families Together  – Families Together, Inc. is a nonprofit organization serving children and youth with disabilities throughout the state of Kansas. Families Together, Inc. also serves as the Parent Training and Information Center for Kansas.

Helen Keller National Center, Great Plains Regional Office – The HNKC Great Plains Regional Offices bring HKNC resources to you. The regional representative knows all about the programs and services available to deaf-blind individuals, their families, and service providers in each state and beyond and can help individuals find and access the right ones. For more information, contact: Beth Jordan, M.Ed., CRC.

Email: beth.jordan@hknc.org    Voice: 913-677-4562   VP: 913-227-4282

Kansas State School for the Blind

1100 State Avenue, Kansas City, KS 66102
(913) 305-3000

The contents of this website were developed under a grant from the U.S. Department of Education #H326T180051. However, those contents do not necessarily represent the policy of the U.S. Department of Education, and you should not assume endorsement by the Federal Government. Project Officer, Rebecca Sheffield, Ph.D.

Copyright © 2021 All Rights Reserved. Kansas Deaf-Blind Project

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