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Spring 2004 Table of Contents
Versión Español de este artículo (Spanish Version)

By Kate Moss, Texas Deafblind Project

Abstract: Students with Usher Syndrome from around the state gathered for a three day special program at TSBVI, during which they learned a lot and had plenty of fun.

Key Words: family, deafblind, Usher Syndrome, students, TSBVI

Every two years, Texas Deafblind Outreach offers a special training event for students with Usher Syndrome and their families. This year for the first time, the event was developed in collaboration with Special Programs here at the Texas School for the Blind and Visually Impaired. Students came to TSBVI on Thursday evening January 22nd and stayed on campus through Sunday January 25th to participate in a variety of activities and training sessions. The students' families joined them on Saturday evening and everyone participated in a social sponsored by the Usher Syndrome Support Group of Texas and Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) . On Sunday their parents participated in a workshop session on genetics, presented by Robbie Blaha from Texas Deafblind Outreach.

The Usher workshop events are always very special for everyone involved, but this year seemed to be the best one yet. Because they stayed longer, the students were able to really take on some new challenges while they were exposed to new information about Usher Syndrome and deafblindness.

climbing-wall Students conquer the climbing wall.

The students learned about technology, self-advocacy, college and technical training opportunities, and had an introduction to Orientation and Mobility basics. But their favorite activity was going to a rock climbing gym. Everyone took a turn climbing and belaying. A person who belays helps manage the climbing ropes and provides a counter weight so the climber won't fall if he or she slips. In addition to this breathtaking outing, the students had fun exploring the University of Texas campus, bowling and getting pizza.

On Sunday morning the students helped create and present a Power Point presentation for their families that contained photos of all their experiences throughout the weekend. Rosie Yanez, one of the mentor leaders, signed the song during the presentation, while the families and all the other participants reveled in the pleasures of seeing the students having so much fun and learning new things.

Coming to terms with a vision loss when you are already deaf or hard of hearing and very reliant on visual communication is a very difficult thing for the students and their families. Having the opportunity to be with other young

adults and older adults with Usher Syndrome while you learn about strategies for continuing to be a full participant in life is an extremely beneficial experience. These students who participated in this weekend demonstrated that they have what it takes to overcome the challenges living with Usher Syndrome can bring.


By Stephen Schoen, Program Consultant
Deaf-Blind Multiple Disabilities Medicaid Waiver Program

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. The waiver program had its roots in a deaf-blind program that began in 1984 as a result of self-advocacy by parents of children who were deaf-blind with multiple disabilities due to Rubella Syndrome. As their children graduated from public special education, parents realized there would be no specific program that could serve their grown children. The parents advocated to the Legislature for the development of a residential program tailored to meet the needs of adults with deafblindness. The Texas Commission for the Deaf and Hard of Hearing (TCDHH) first administered the program in three group homes located in Houston, San Antonio, and Dallas. After one year, the Texas Rehabilitation Commission (TRC) took over administration duties. Under TRC's direction, the program expanded service area to more areas of the state. In 1995, TRC converted the program into the Deaf-Blind Multiple Disabilities Medicaid Waiver program, which expanded the number of people served and the types of services delivered. In 1999, the Legislature moved the program to the Texas Department of Human Services (TDHS). The program is currently serving 143 individuals.

Frequently Asked Questions

1) What is a Medicaid Waiver?

A Medicaid Waiver is a long-term care program, which provides services in order to prevent people from being institutionalized.

2) Which waiver should I choose for my son or daughter?

There are 4 major waivers operated by the Texas Department of Human Services (DHS) and 1 waiver operated by Texas Mental Health and Mental Retardation (MHMR). The DHS waivers are: Community Based Assistance (CBA), for adults eligible for nursing home care); Medically Dependent Children's Waiver Program (MDCP), for children eligible for nursing home care; Community Living Assistance & Support Services (CLASS), for people of all ages who have developmental disabilities other than mental retardation; and the DB-MD waiver for people who are deaf-blind with multiple disabilities. The Home & Community Support (HCS) Waiver operated by MHMR serves people who have mental retardation. A â¬SConsolidated Waiver⬠combining all of the above-mentioned waivers is being piloted in the San Antonio area. Frequently, people who are eligible for the DB-MD Waiver are also eligible for some of these other waivers. Factors in making a choice between waivers include: your number on the waiting list, private provider choice in your geographic area, and services available from each waiver. One thing is clear: Most people are better off with waiver services than without. I would advise people to get on all interest lists for which they may be eligible. Before making a choice of waiver, I would talk to professionals from school, public agencies, advocacy groups such as the Deaf-Blind Multihandicapped Association of Texas (DBMAT), and other parents.

3) Who is eligible for the DB-MD Waiver?

Consumers must be age 18 or over and have a disability of deafblindness with a third developmental disability such as mental retardation or autism. This disability must result in a need for long-term care to prevent institutionalization.

4) How are services provided in the DB-MD Waiver?

Services are provided by private vendors who contract with the Department of Human Services to provide all services from a menu of services.

5) What choices are available?

Within the DB-MD Waiver, individuals have a choice of private providers, type of residence, type of support service received, and location of delivered service. Providers are available in all major Texas metropolitan areas and in many rural areas.

6) What services are available in the DB-MD Waiver?

Services include: assisted living (24 hour care); residential habilitation (support to help individuals do activities for themselves); intervener (assistance in relating to other people and the community); orientation and mobility (training to navigate more independently); therapies (including occupational therapy physical therapy, and speech therapy); and behavior communication specialist (consultation with specialists in the field of deafblindness).

7) Where are the individuals served?

Individuals can be served in the home of their parents or guardians, an apartment, or a group home with six or less people.

8) Are there other services provided by the DB-MD Waiver?

The DB-MD Program provides an annual summer week-long camping experience for people who are deaf blind. It also partners with the DBMAT and other Texas state agencies to conduct an annual family conference, which is usually held in early October.

9) How long may a person receive services from the DB-MD Waiver?

Services from the DB-MD Waiver program may last for a person's lifetime.

10) When should a person apply for the DB-MD Waiver?

A person should put their name on the DB-MD Interest List or database immediately. Even though the waiver only serves individuals who are 18 years old and over, we encourage children who are younger to be on the database so we can plan for future services.

11) What is the difference between the DB-MD Database and the DB-MD Interest list?

The DB-MD database is used to plan requests for future funding for the DB-MD Waiver. People under 16 years of age are placed on the DB-MD database. The DB-MD Interest List is the official on-line list of people interested in DB-MD services. People who are age 16 and over are placed on the DB-MD Interest List. When a person on the database turns 16 years old their families are contacted. If the families continue to desire DB-MD services, the person's name is placed on the DB-MD Interest list. When funding becomes available, people on the interest list are offered slots in the waiver.

12) How long will I need to wait if I put my name on the Interest List?

At this moment, the DB-MD Waiver has filled all 143 slots allocated by the Legislature. If any slots open up, people on the interest list will be contacted in the order of their application to the waiver or the date of their sixteenth birthday. While there are few names on the interest list, we can't predict when funding will be available.

13) I'm already in another Medicaid Waiver (or Intermediate Care [ICF] group home). Can the DB-MD Waiver also provide services?

No. All Medicaid Waiver or ICF services are delivered using the same type of Medicaid Long Term Care funding. A person can only receive one of these types of programs at any time. A person can switch from one waiver to another as long as he is eligible. But, he must realize that he will be subject to a long waiting list if he tries to switch back.

14) My child receives services from Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) (TCB), and/or the school system. Can she also receive services from the DB-MD Waiver?

Yes. Programs from the TCB and the DB-MD Waiver can supplement each other to the benefit of consumers. For example, job placement and supported employment may be provided by TCB while long-term support is provided by the DB-MD Waiver.

15) How do I apply for or get more information about the DB-MD Waiver?

Call me, Steve Schoen, the Program Consultant for the DB-MD Medicaid Waiver, at (512 ) 438-2622; or send an e-mail to <>. I will send you a brochure and Interest List Survey Form. Once I receive your completed survey form, your name will be placed on the DB-MD Interest List or database.

Updated 12/29/03

Summer 2003 Table of Contents
Versión Español de este artículo (Spanish Version)


DB-LINK has announced that the final version of HomeTalk: A Family Assessment of Children Who are Deafblind is now available for your use.

HomeTalk is an assessment tool for parents and care providers of children who are deaf-blind and have other disabilities. It is designed to help them participate in their children's education by giving them a way to provide a broad picture of a child's skills, special interests, and personality. Home Talk was developed by the Bringing It All Back Home project, a collaborative effort of Design to Learn Projects at the Oregon Health and Science University and the College of Physicians and Surgeons at Columbia University. It is available for free from DB-LINK. Phone: 800-438-9376. TTY: 800-854-7013 E-mail:

The project has one request: if you plan to use HomeTalk for an educational meeting (e.g., IEP meeting, annual review, transition meeting), please provide some feedback about your experience. They have a short form that they will mail or e-mail to you to complete, or they can interview you by telephone (10-15 minutes). Please contact Harvey H. Mar, Ph.D (, 212-523-6235) or Charity Rowland, Ph.D. (, 503-238-4030) if you are able to assist.

Eric M. Bost, Commissioner

The Texas Department of Human Services (DHS) has a program that helps people who are deaf and blind with multiple disabilities become more communicative and independent. The Deaf Blind with Multiple Disabilities (DB-MD) program serves people across the state on a first-come, first-served basis depending on the availability of service providers and funds.

The DB-MD program transferred to DHS from the Texas Rehabilitation Commission in September 1999.

Eligibility

To be eligible, an individual must:

  • Be age 18 or older.
  • Meet financial criteria.
  • Meet the description of deaf and blind with multiple disabilities:
    • Deaf:  can't understand speech, even with amplification.
    • Blind:  less than 20/200 vision in the better eye, with correction, or a severe visual field defect.
    • Multiple disabilities: at least one other disability, such as mental retardation or autism, that impairs independent functioning and requires 24-hour-a -day support.

Residential support options

Clients, with assistance from their families and program providers, choose one of these options for residential support:

  • Reside in their own apartments or homes, with support.
  • Reside with their parents or guardians, with support.
  • Reside in a group home, with support.

The following support services are provided to help ensure the success of the residential care:

  • Habilitation - help with daily living skills throughout the day and evening.
  • Intervenor - a bridge between the individual and community.
  • Chore provider - help with home maintenance.
  • Assisted living - all three previous services provided as a bundle in group homes.
  • Case management - eligibility determination, plan of care development, and service monitoring.
  • Specialist consultations - consultations for physical and occupational therapy, orientation and mobility, nutrition, skilled nursing, and behavior and communication problems.
  • Respite care - support for the primary caregiver.
  • Medical equipment - equipment used to increase interaction with the environment.
  • Environmental accessibility - home or apartment modifications.
  • Medications - prescribed medications.
  • Family training and respite - annual family conference for parents and siblings and people with deafblindness.  (This service does not reqire entrance in the Medicaid Waiver.)
  • Summer camp - specialized camp with communication support and skill training.  (This service does not reqire entrance in the Medicaid Waiver.)

To request services

Contact DHS Community Care Services at 512-438-2622 or 1-877-438-5658 and ask for a DB-MD program referral form.

Return the completed form to the DB-MD program specialist at the Texas Department of Human Services.

There is a waiting list for services.  Clients are enrolled on a first-come, first-served basis.  When your name comes to the top of the waiting list, you will be contacted by DHS to begin the eligibility determination process and select a provider.

Choose a provider from the list, and arrange for an interview.

After eligibility is established, help the provider develop a plan of care.

Once the plan is approved by DHS, services will begin.

For more information

Contact the DB-MD program specialist at:

Texas Department of Human Services
Mail Code W-521
Attn: DB-MD Program Specialist
P.O. Box 149030
Austin, TX 78714-9030
Phone: 512-438-2622 or 1-877-438-5658
E-mail:

In administering its programs, the Texas Department of Human Services does not discriminate, directly or through contractual or other arrangements, on the grounds of race, color, national origin, age, sex, disability, political belief, or religion.

Media Services 9P234
Sept. 2000
Publication No. DHS-565

Are you an occupational or physical therapist working in the Texas public school system? Do you need more information about how to best contribute to the education of deafblind students?

If so, you're not alone.

Whether you're receiving your first referral for OT or PT evaluation and services for a deafblind student or your 50th, it's a fairly safe bet that you are not as prepared as you would like to be. This website is designed to give entry level and experienced therapists theoretical and practical assistance that will better equip them to be productive members of the educational teams for children with deafblindness. Because so little information about visual impairment, and specifically deafblindness, has found its way into pre-service curricula at the universities that offer OT and PT programs, many of us find ourselves wondering how best to translate what we know as clinicians into appropriate educational strategies for the DB student. OT and PT have much to offer the DB student when they work from a base of knowledge about the ways in which deafblindness impacts learning and social relationships.

This website will familiarize you with:

  • Basic information about the conditions that cause DB and how they impact learning
  • Available assessments, and how to use them
  • Theoretical frameworks that may help you interface meaningfully with the DB student you serve
  • The roles of other service providers often involved with DB students, and how you, as physical or occupational therapist, can collaborate with them
  • Strategies for communicating and teaching skills to the DB student
  • Basic Orientation and Mobility information
  • Developing and writing IEP goals for the DB student
  • Defining literacy for the DB student, and defining your potential contributions to literacy and communication
  • A glossary of terms associated with deafblindness
  • Resources and references for further reading, so that you can educate yourself on concepts and theoretical applications that are important to the education of the DB student

Last revision: 3/28/2007

By Beth Fox

Reprinted with permission from VIBRATIONS newsletter of Colorado Services for Children Who Are Deafblind, Fall 2001 Edition: Focus on Interveners

VIBRATIONS Editors Note: Beth attended the 2001 Summer Institute on Deafblindness and this is the paper she turned in for university credit. Beth captured many key points that were made by Linda Alsop during the two-day training. Thank you, Beth, for putting your notes in such an easy to read format about the role of interveners.

Who is that child sitting alone in the corner of the room?

It may be a child who is deafblind. Deafblindness is a complex disability, which is characterized by a combined loss of vision and hearing. The vision and hearing loss is compounded exponentially when there are additional disabilities to create extreme challenges in the areas of communication, development of interpersonal relationships, behavior, sensory integration, and motor and cognitive development.

Why does this child need extra help beyond conventional special education?

Due to the child's dual sensory loss, she lacks access to information. This challenge may prevent the child from interacting with her environment and encourages isolation and internalization with focus upon self-stimulation. The less a child interacts within her environment, the fewer chances she has to learn.

What will it take to help move the child forward and closer to his or her classmates?

A person who can consistently bridge the gap of sensory deprivation so that the child can receive information and become linked to the world around her is needed. This person is called intervener. The intervener can provide information to child so that she may better understand her environment and act appropriately within it. The intervener serves to interpret information from the child and also acts as a conduit for communication between the child and others. An intervener could be described as a consistent filter, communication cable, facilitator, or bridge.

An intervener does not control, create dependency, make decisions for the child, or stand as a barrier between the child and others.

Is the intervener presented with many challenges in assisting the child along the path toward his classmates?

The intervener must learn all about the child who is deafblind and appreciate her uniqueness. This person should have a secure understanding of the child's vision and hearing and how information is received. Much time will be spent learning about the child's personal system for information exchange. These things will be the basis for building a communication system that will eventually link the child to her environment and the people who are active within it.

Why is this interface between the child and intervener so important?

A monitor and keyboard are cabled to a CPU of a computer so that information can be entered and returned. These pieces are not unlike the relationship between an intervener and the child with combined vision and hearing loss. The child, like the CPU, is a full of power but can only make an impact with the proper access pieces, otherwise, it will be left in the corner and the potential to positively impact the environment will be left undiscovered.

How will the intervener guide the deafblind child to the middle of the room?

The child will gravitate toward her peers through learning. Curiosity equals learning and the intervener can fuel the child's motivation for curiosity. The intervener will help the child understand concepts and facilitate this transfer from the home environment so that concepts may be generalized to a variety of situations. The intervener ensures that the child has access to the results her trial and error learning so that education can occur. The constancy of the intervener will discourage stress in the child and allow her to learn more easily.

Can this child exhibit behavior that is suitable for a classroom setting?

An intervener can chart behavior so that it can be understood as a means of communicating why the child is frustrated, hurt, etc. "Inappropriate" behavior is generally due to lack of information. Once the behavior is understood and communication systems are established then the proper information can be conveyed to the child.

How will an intervener significantly improve the life of a deafblind child with regard to their peers and classroom experiences?

An intervener can include a child with combined vision and hearing loss in class activities and limit problems of isolation by providing information to child and allowing her to interact with classmates. The intervener plays an important role in facilitating introductions of new people to the deafblind child and, over time, can release child to the new person. An overwhelming portion of learning is tertiary (comes from simple observation) and this incidental learning does not occur in individuals with sensory deprivation unless an intervener is constantly present to inform the child about who or what is around her and what is occurring with these people, situations, or objects.

Is the intervener a classroom teacher?

The intervener is not the classroom teacher but provides no less a vital service than his or her counterpart. The intervener is under the direction of the teacher and the relationship between the two must be emotionally strong. It may take much effort for each person to be able to discuss, explore, and work together to create the best possible learning situation for the child. The teacher and intervener must respect each other and all people who work in various roles with the deafblind child. When this practice occurs teachers, interveners, and all students will meet at the center of the room and will benefit greatly.

An Interest in Interaction: It may not be obvious at first because of how difficult it can be to communicate, but most children want interactions, and DB students do, too. ASSUME that the child wants interactions and proceed with the idea that one of your main goals is to establish a relationship. Everything you do will work better if you take the time to make relationship first, to secure an attachment that will make both of your comfortable.

Extended periods of play on the body  At the times when other children begin to move through and explore their environments, DB children sometimes prefer to stay in one place and keep themselves occupied by engaging in vocal or sensory play. This may continue through the first year of life if there is no intervention to help the child develop an interest in, and the skills to maneuver in, her environment. PT and OT can be a huge help by providing age appropriate motor activities, adapted for absence of vision and hearing, and focusing on interactive strategies.

Atypical motor skill development: Largely because of the tendency to extend play on the body well into the first year, instead of learning to crawl and explore, motor development milestones are often reached later than might be expected for sighted, typically-developing peers. A few of these motor features are:

Muscle tone: Were not sure exactly why, but children with low vision often have low muscle tone, especially at the proximal joints.

Static and dynamic balance: Visual, tactile and proprioceptive input is bundled as it travels through the nervous system, which means that many DB students will have balance problems.(See CHARGE Association info)

Non-purposeful movement: The social signals that teach us how to (and make us want to) control non-purposeful movements such as flicking a pen, or wiggling a foot, are largely absent for the DB child. Without the social constraints, there is little to compete with the pleasure of the movement itself.

Gait pattern deviations: Children with visual impairment, blindness and DB are prone to:

Toe walking:
Walking on tip toes. This is often a sensory strategy. Try it: Youll see immediately that by walking on your toes, you get amazingly more sensory information (through calf muscles, across the metatarsal heads) than using a heel strike. Toe-walking is part of typical motor development, usually diminishing within 4 6 months of full weight bearing. If you work with a DB child of child with visual impairment who is still toe-walking a few months after they begin ambulation, its time to intervene. Many of these children respond well to a short course of supramalleolar AFOs.
Toe-out gait pattern:
Because many DB children use wide-based gait patterns due to instability at the hip (low proximal tone and sometimes muscle weakness), it is not uncommon to note a toe-out gait. Toe-out is a compensatory adaptation for weakness or lack of sensation in the hip, alignment problems at the knee, etc. If it persists as long as 6 months after ambulation begins, an orthopedic check is indicated.
Pronation at the midfoot:
Toe-out gait, and weakness or internal rotation at the hip, can cause a child or adult to walk with foot pronated, which later can cause hip and back problems. There is no period in which walking in pronation will be beneficial to the child, and it should be addressed early.

Need More Info? See:

Strickling, Chris. "Motor Focus: Promotiing Movement Experiences and Motor Development," in Early Focus: Working with Young Children Who are Blind or Visually Impaired and Their Families. Rona L. Progurnd and Dianes Lfazzi, editors. American Foundation for the Blind, 11 Penn Plaza, Suite 300, New York, NY 10011, pp 287-325.

Versión español de este artículo (Spanish Version)

doctor-childA child with a hearing loss relies heavily on his vision to compensate for what he cannot hear. He may read lips or facial and body language, sign language, speech cues, print, and pictures. He relies on his vision to detect cars he cant hear approaching, flashing alarms instead of the typical fire alarm, and many other things. Most of his instruction is adapted to make use of the vision channel for learning or to support his use of residual hearing. In other words, good vision is an important thing for a child with hearing loss!

Anyone, even children with hearing loss, can experience problems with their vision at any age. As a parent or teacher you are the one most likely to notice some of the subtle signs that your child is having problems with his vision. Here are some of the things to be on the look out for related to vision problems:

Problems Seeing at Night

  • Cant see when coming in from the bright sunlight for a longer period of time than normal
  • Trips over things when the light changes or gets dim
  • Stays near light in a dark room or at night
  • Positions himself so light falls on the face of the speaker
  • May express a desire to enter a room before it is darkened (e.g. movie theater)
  • Avoids conversations in a darkened area
  • May appear to stagger or lose balance after an oncoming car has passed at night
  • Has problems reading under some lights or in dimly lit areas

Problems Seeing a Full Visual Field

  • Stumbles on stairs and curbs
  • Bumps into people, tables, and chairs
  • May have accidents or spilling at mealtimes with objects placed to the side
  • Startles easily
  • Seems to hold eyes in different directions when looking at some things
  • Turns head while reading across a page
  • Uses fingers to mark place while reading
  • Cant find small objects that have been dropped
  • Fails to glance at another persons hand waving from the side
  • Is quiet or may edge to one side when in a large group
  • Frequently misses or fails to understand group instruction

Problems with Glare

  • Squints and shades eyes in bright lights or fluorescent lighting
  • Likes to wear sunglasses even in a building, but especially in bright sunlight
  • May appear awkward when exiting from a building (when faced with bright lights)

Problems with Contrast

  • Has difficulty reading light copies or ditto copies
  • Cant see stars at night
  • Often spills when pouring liquids

Problems Seeing Clearly

  • Holds book close to eyes, or bends to read
  • Sits near blackboard

Other Behaviors Sometimes Related to Problems with Vision

  • Exhibits anxiety in new areas or unfamiliar places
  • Often last to enter room
  • May have repetitive behavior or routines at particular times
  • May fail to participate fully in group activities associated with new situations in the dark (e.g. evening football game, movies)
  • Frequently hesitates at the top or bottom of the stairs
  • Avoids walking or running in unfamiliar areas especially in bright sunlight or darkened areas
  • Constantly appears to be visually scanning a group
  • Tilts head, covers or closes one eyes for critical seeing
  • Holds printed material in unusual position

APPEARANCE of the eye

  • Eyes turn in or out
  • Crusty or red eyelids
  • Different size pupils or eyes
  • Swelling of eyelids
  • Conjunctivitis (Pink eye)
  • Drooping lid(s)
  • Any other observation about "eyes that just don't "look right"?

(Davenport, 1994 and VibrationsNewsletter of Colorado Services for Children who are Deafblind, Winter 2000)

If your child seems to exhibit some of these problems, discuss your concerns with your educational team and/or your family doctor. It is a good idea to periodically take your child to a certified optometrist or ophthalmologist for a thorough eye examination. Be sure to take along this list to share any concerns you might have. It is very important to make sure your child with hearing loss can see as well as possible to ensure his success in school.

If you would like the names of qualified optometrists or ophthalmologists in your area who work with children with disabilities, ask your special education program to put you in touch with a local teacher of the visually impaired. Other resources for finding one of these professionals in Texas include the regional Education Service Center Vision Consultant or a Childrens Specialist at the Department of Rehabilitative and Assistive Service  Division of Blind Services in your area.