DBMAT

List of Acronyms generously created with our TSBVI Deafblind Outreach affiliate!

Parent shared summary of advocacy 101 for a school age child                                                                                                                                                             This is a summary about the resources to consider when your child is in the school system from one parent to another.     

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If you do have something to share PLEASE email us at  WebUpdates@dbmat-tx.org

We want this to be an interactive space where we share tips and tricks that will help our FAMILIES!!!

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DBMAT provides these links as a support to people attempting to find information about deafblindness.  DBMAT does not endorse these websites, but has worked closely with representatives of the agencies which are linked.

1. Texas Deafblind Project
   https://www.tsbvi.edu/statewide-resources/services/consultation-training
   The Texas Deafblind Project is funded by a federal grant to provide information and training about deafblindness to families and the professionals that work with them. Subcontracted through the Texas Education Agency, the Deafblind Outreach team provides technical assistance that is designed to meet the unique needs of children, birth through 21 years of age, who have both a vision and hearing impairment.
   
2. Helen Keller National Center
   https://www.helenkeller.org/hknc/
   The mission of the Helen Keller National Center for Deaf-Blind Youths and Adults is to enable each person who is deaf-blind to live and work in his or her community of choice.
3. Department of Assistive and Rehabilitative Services (DARS) Deafblind Services
   https://twc.texas.gov/jobseekers/vocational-rehabilitation-services
   Do you have or know someone with vision and hearing problems?  If so, the Division for Blind Services has a Deafblind Unit that may be able to help you with finding or maintaining employment and living as independently as possible.
4. Texas Deafblind Medicaid Waiver
   http://www.dads.state.tx.us/news_info/publications/brochures/DADS159_dbmd.html
   Texas is the only state in the U.S. to have a Medicaid Waiver Program specifically for persons who are deaf-blind with multiple disabilities.  A Medicaid Waiver is a long-term care program, which provides services in order to prevent people from being institutionalized. The number to call to get on the "Interest list" for this & other Medicaid Waivers is 1-877-438-5658.  An easy to understand and up-to-date reference about Medicaid Waivers is below at # 17: A Roadmap to Understanding Medicaid Waivers.
5. National Family Association for Deaf-Blind NFADB
   http://www.nfadb.org/
   A national non-profit volunteer based family association.  Their philosophy is that individuals who are deaf-blind are valued members of society and are entitled to the same opportunities and choices as other members of the community.
6. Texas Association for Parents of Children with Visual Impairments - TAPVI
   https://www.facebook.com/TAPVIFamilies/
   TAPVI is a statewide non-profit organization serving families of children who are visually impaired or blind, including those who have multiple disabilities. Our children range from infancy to adulthood. They have various vision diagnoses and levels of visual impairments.
7. Understanding Family Support
   Understanding Family Support
   The Texas Center for Disability Studies, using funding provided by The Trull Foundation of Palacios, Texas developed a resource guide for parents of children living in institutions in Texas, or children at extreme risk of placement.  Information found in the guide includes: permanency planning, importance of living in a family, services and supports available in the community, how to navigate the service system, and agency and support services contact information.  A pdf version of this guide is available at this link.
8. Camp Summit
   http://campsummittx.org/
   At Camp Summit, all campers are treated equal. We believe that everyone should have the opportunity to realize their maximum potential, including those with disabilities. Campers are encouraged to try new experiences in order to gain self-confidence, learn cooperation and communication, and increase personal independence in a safe and fun environment.  Camp Summit hosts a week long summer session specifically for people who are deafblind.
9. Got Transition
   https://www.gottransition.org/
   Got Transition and its National Family Health Care Transition Advisory Group developed a toolkit for families to use during the transition from pediatric to adult healthcare.  It includes a set of tools for youth and parents/caregivers to use to better prepare for the transition to adult care.
10. National Center on Deaf-Blindness (NCDB)
    https://www.nationaldb.org/about/
    NCDB works collaboratively with families, federal, state and local agencies to provide technical assistance, information and personnel training.
11. Help Lauren Learn
    http://www.helplaurenlearn.net/
    The Daleys (active members of DBMAT) have started their own website which has excellent features including an amazing video of their 12 year old daughter and her accomplishments with the help of intervener services.
12. Find Your Legislator
    http://www.fyi.legis.state.tx.us/
    Just enter your home address and this website tell you the names of your Federal and State Senators and Representatives (as well as TEA State Board of Education member)
13. You Make the Difference
    http://www.tsbvi.edu/curriculum-a-publications/3/1018-you-make-the-difference
    Craig Axelrod, Kim Conlin, and Tish Smith developed this DVD for The Texas School for the Blind and Visually Impaired.  The interaction training process presented in this DVD will help educators learn how to improve the quality of their interactions with students who are deafblind, by changing their own interactive behaviors and by adapting the interactive context.
14. ADAMLS
    https://eric.ed.gov/?id=ED531846
    Brad Carlson of DARS and Robbi Blaha of TSBVI created this assessment.  The Assessment of Deafblind Access to Manual Language Systems (ADAMLS) is a resource for educational teams who are responsible for developing appropriate adaptations and strategies for children who are deafblind who are candidates for learning manual language systems.
15. A Road Map to Understanding Texas Medicaid Waivers
    https://villagelac.org/wp-content/uploads/2010/05/Roadmap-to-Understanding-Texas-Medicaid-Waivers.pdf
    This is an excellent tool which explains almost everything you need to know about Medicaid Waivers.  Frequently, a person who has deafblindness is eligible for more than one waiver.  It pays to get on the interest list for as many of these as might be appropriate. The number to call for Medicaid Waiver Interest Lists is: 1-877-438-5658.
16. Dr. Jan van Dijk
    https://www.researchgate.net/publication/263306112_A_Framework_for_Understanding_Young_Children_with_Severe_Multiple_Disabilities_The_Van_Dijk_Approach_to_Assessment
    Dr, Jan van Dijk, expert in deafblindness, assessment, syndromes, and challenging behaviours, shares his knowledge in articles, videos, and weblog. Dr. van Dijk was our featured speaker at the October 2010 Family Conference.  He made a lasting impression on all of the families who attended the conference.  While nothing compares to face-to-face contact, this web page gives the reader an excellent idea of Dr. van Dijk's philosophy and methods.
17. Social Security & Disability Resource Center
    http://www.ssdrc.com/
    Provides answers to questions concerning how to apply for disability, how to appeal a claim in the event of a denial, how to navigate the federal system, and how to avoid certain mistakes that are commonly made by applicants filing for either SSD (social security disability) or SSI (supplemental security income) benefits.
18. WonderBaby
    http://www.wonderbaby.org/about
    A project funded by Perkins School for the Blind, is dedicated to helping parents of young children with vision impairments as well as children with multiple disabilities. Here you'll find a database of articles written by parents who want to share with others what they've learned about playing with and teaching a blind child, as well as links to meaningful resources and ways to connect with other families.
19. More Information about Interveners                                                                                                                                                             http://interveners.nationaldb.org                                                                                                                                                                                     https://intervener.org/ 
20. Federal Funding for Deaf Blind Equipment                                                                                                                                                         http://www.fcc.gov/cons
21. umer-governmental-affairs-bureau
22. TSBVI Family Lynx                                                                                                                                                                                                                                                         TSBVI Family Lynx                                                                                                                                                                                                                                                       A community of TSBVI families, alumni, and staff.  Join with Membership for TSBVI Family Lynx    
23. Project SPARKLE                                                                                                                                                                                                                                                  Project Sparkle SKI-HI Institute Utah State University                                                                                                                                                                                  Project Sparkle is a program of individualized learning that enhances the ability of parents of children who are deafblind to fulfill their roles in the development and education of their children.  Parents will have  access to resources,  knowledge,  linkages, and training in their homes via DVD Training and Internet.        
24. Central Michigan DB Story Time                                                                                                                                                                                                                             Central Michigan Deaf-Blind Story Time                                                                                                                                                                                                        All Story Time readings have ASL interpreting, corresponding vocabulary videos, and experience boxes.