Resources
Related Links
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
http://www.tsbvi.edu/Outreach/deafblind/index.htm
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
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
http://www.dars.state.tx.us/dbs/deafblind.shtml
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 (DB-MD)
http://www.tsbvi.edu/Outreach/deafblind/waivers.htm
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 The linked web site (which is quite out-of-date) is operated by the Texas DeafBlind Project. 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
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 ImpairmentsTAPVI
http://www.tapvi.org/index.html
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
http://tcds.edb.utexas.edu/FamilyResGuide.html
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://www.campsummittx.org/index.html
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) Camp John Marc
Camp John Marc partners with community and health professionals and organizations to provide high quality camping experiences year round to campers who have a chronic illness or physical disability. Camp John Marc is the site of the annual DBMAT conference held in October of each year.
10) HandsOn
http://handsonsa.org/index.html
HandsOn is a provider of services through the Deaf-Blind with Multiple Disabilities (DBMD) Waiver. THe President & co-owner of HandsOn is Gay Bellamy, who is the supervisor of all childcare for our annual Conference, and a wizard in all things "deafblind." The other co-owner is Susan West, CEO & Supervising Nurse, who stepped up and helped Gay make this an independent "standalone" Deafblind project.
11) National Consortium on Deaf-Blindness (NCDB)
http://www.nationaldb.org/index.phpindex
NCDB works collaboratively with families, federal, state and local agencies to provide technical assistance, information and personnel training.
12) Help Lauren Learn
http://www.helplaurenlearn.net/
The Daley's (active members of DBMAT) have started their own website which has excellent features including an amazing video of their 5 year old daughter and her accomplishments with the help of intervener services.
13) WinFSSI
http://www.winfssi.com/articles.htmlarticles
This website belongs to one of DBMAT's "spiritual fathers". Ed Hammer has been helping families of people who are deafblind ever since the rubella epidemic hit Texas in the 1960's. The linked page has a number of articles by Ed relating to deafblindness and interveners. It also links to his Functional Skills Screening Inventory which helps evaluate functional training needs of people who are deaflind.
14) 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 Ed. member)
15) You Make the Difference
http://www.tsbvi.edu/publications/difference.htm
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.
16) ADAMLS
http://www.nationaldb.org/documents/products/ADAMLS.pdf
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.
17) A Road Map to Understanding Texas Medicaid Waivers
http://www.imagineenterprises.com/images/pdfS/10MW_Toolkit_101.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
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