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The Informal Functional Hearing Evaluation (IFHE) is meant to guide the teacher of the deaf and hard of hearing (TDHH), the teacher of the visually impaired (TVI), and the teacher of students with DeafBlindness (TDB) in determining the impact of a potential hearing loss on educational functioning for students with visual impairments and multiple disabilities.

The IFHE can serve as a guide for determining what accommodations are needed in the classroom, home, and community environments to promote student access to information. Because of the difficulty that a loss in both distance senses presents, a child who is deafblind may demonstrate a delay in identifying, understanding, and interpreting sounds and their sources. This delay can be pronounced, even if formal testing indicates a minimal loss of vision and hearing.

This evaluation tool was developed by Adam Graves, DeafBlind Consultant and Chris Montgomery, DeafBlind Consultant, with the Texas DeafBlind Project at Texas School for the Blind & Visually Impaired Outreach Programs in collaboration with the National Center on Deaf-Blindness.

If an educator is concerned that a student with a visual impairment may also have a hearing loss:

  • IFHE can provide information about how the child is currently using his/her hearing in a variety of settings and then guide the IEP team in developing instructional strategies to address the child’s dual sensory needs.
  • IFHE can document concerns when a student is unable to participate in formal testing (a lack of formal language, health issues, or concerns regarding sedation to test for an auditory brainstem response (ABR)).
  • IFHE can help shape programming considerations for a student with deafblindness.
  • IFHE can serve as a guide for determining what accommodations are needed in the classroom, home, and community environments to promote student access to information.
  • IFHE can be used as a compliment before formal testing to provide valuable information to the audiologist or ENT. IFHE should not serve as sole documentation of hearing impairment; formal testing is needed.

Download a PDF Version.

On February 21, 2013 a HANDSMATTER workshop took place with students who are deafblind and their interveners and teachers at the Texas School for the Blind and Visually Impaired in Austin. The workshop was led by the European artist Guido Dettoni.

Handsmatter at TSBVI Video can be seen on YouTube. Captions are provided in English. Transcripts of the audio is provided in English, Spanish and Italian

After you have viewed the video, please share your comments and interpretations on YouTube

 

.The artist also facilitated the Handsmatter workshops with participants at the Texas Symposium on Deafblindness in Austin, TX on February 22-23, 2013. An unexpected experience with 8 hands together evolved.  The 8 HANDS Video may also be seen on YouTube.


We invite you to share your comments and interpretations on YouTube after you view this video.

Thanks to the support of TSBVI, NESHER Stichting and FESOCE (Spanish Deafblindness Federation). Previously Guido Dettoni had performed with APSOCECAT the first Handsmatter workshop oriented to this community. Out of this experience arose a tactile symbol for Deafblindness, the DEAFBLINDSHAPE.

For more information on the Deafblind Tactile Symbol and/or the Handsmatter workshop, contact Jenny Lace at or .

 

reprinted with permission from
Barbara Sims, Director of the Center on Deafness, Springfield, Illinois and
Kathryn Raistrick, Coordinator of Deaf-Blind Services, Illinois Department of Rehabilitation Services, Springfield, Illinois
Spring 1996

What is Usher Syndrome?

Usher Syndrome is a genetic disorder involving the loss of both sight and hearing. Hearing loss occurs at birth or shortly thereafter. A progressive loss of vision due to retinitis pigmentosa (degeneration of the eye's retinas) begins later in life, but usually before adolescence. There is no way of knowing the exact time of onset or rapidity of the vision loss, but in most cases the result is legal blindness.

A person with Usher Syndrome has inherited the Usher gene from both parents. Usher Syndrome is an autosomal recessive gene, and both parents must pass the gene to their child in order for the child to have the condition. When both parents have the gene, the chances each child will have Usher Syndrome is one in four. While only approximately 3 per 100,000 people have Usher Syndrome, it is estimated that 3-6% of people who are congenitally deaf have the condition. Usher Syndrome accounts for over 50% of all cases of deaf-blindness, with approximately 10,000 known cases in the United States. In the general population, anywhere from 1 in 100 to 1 in 300 carry the Usher gene.

The two major types of Usher Syndrome are Type I and 11. The most common is Type I (almost 90% of all Usher), and is deafness with retinitis pigmentosa symptoms before adolescence. In Type II (almost 10%), moderate to severe congenital hearing loss is paired with retinitis pigmentosa symptoms after adolescence.

Why is it important to diagnose Usher Syndrome as soon as possible?

Identifying Usher Syndrome as early as possible is important because:

  1. The gradual decrease in vision may go unnoticed by an individual who may continue activities (such as driving or working in hazardous conditions) that cannot be safely done anymore.
  2. The individual, parents and teachers can plan for educational and vocational experiences and guidance that take into account the eventual visual difficulties.
  3. A diagnosis of Usher Syndrome in an older child allows parents to consider genetic counseling. Persons who have Usher Syndrome may also want to consider genetic counseling.

What diagnostics are needed? Where and how can we get them?

Several tests are used to determine whether a person has retinitis pigmentosa, and that is how a person who has a hearing loss is identified as having Usher Syndrome. These tests include a visual field test to assess side vision, testing to evaluate color vision, and dark adaptation. However, the definitive test of retinitis pigmentosa is electroretinography (ERG) which has been found to be 95% accurate.

ERG is the measurement of the electricity given off by nerve impulses in the retina. The test, which is painless, is done by having the patient wear special contact lenses while looking at a flashing light.

Many major medical centers perform ERGs. For further information, contact your local ophthalmologist or Texas Commission for the Blind.

Usher Syndrome screening characteristics: What are behavioral symptoms teachers and parents may see that suggest Usher Syndrome?

Characteristics Type I Type II
Hearing impairment Congenitally deaf Hearing impaired
Vestibular functioning Impaired balance Normal balance
Vision impairment Retinitis pigmentosa Retinitis pigmentosa
Genetic information Autosomal recessive (The gene location has been identified.) Autosomal recessive (The gene location has been identified.)
Night blindness Before the age of five Latter part of onset (at second or beginning of third decade)
Visual field loss Appears mid-childhood Less than 20 degrees probable by mid 20's Slower, but legal blindness probable at some point
Central visual acuity Progressive loss with early development of cataracts Less severe but great variation
Prognosis Variable, but light perception only is likely in later life Variable, some have considerable vision later, others only light perception by their 60's

In addition to the congenital hearing loss, a person with Usher Syndrome has increasing difficulty seeing in the dark or to the side. Vestibular problems (such as poor balance) may also be present. Problems with central vision may develop later. The following are characteristics which may indicate Usher Syndrome and can be used for basic screening:

Night Blindness:

  • Can't see when coming in from bright sunlight
  • Trips over things when light changes or light is dim
  • Stays near a light in a dark room or at night
  • Moves a speaker so light falls on face
  • May express a desire to enter a room before it is darkened (movie theater, etc.)
  • Avoids conversations in a darkened area
  • When walking along a road at night, may appear to stagger or lose balance after an oncoming car has passed
  • Has problems reading under some lights or in dimly lit areas

Glare sensitive:

  • Squints and shades eyes in bright lights or fluorescent lighting - complains that the light hurts his/her eyes
  • Likes to wear sunglasses even in buildings, but especially in bright sunlight
  • Avoids participating in outdoor sports when the sun is very bright
  • May appear awkward when exiting from the inside to the outside of a building (when faced with bright light)

Needs contrast:

  • Has difficulty reading light copies or ditto copies
  • Often spills when pouring liquids
  • Can't see stars at night

Restricted field:

  • Startles easily
  • Seems to hold eyes in a different direction when looking at some things (because of islands of vision)
  • Turns head while reading across a page
  • Uses finger to mark place while reading
  • Can't find small objects that have been dropped
  • Fails to glance at another person's handwaving from the side
  • Bumps into people, tables, and chairs
  • Stumbles on stairs and curbs
  • Is quiet in a large group or may edge him/herself to one side when placed in a group
  • Frequently fails to understand or misses groups instruction. Often relies on friends for information
  • May appear to ignore others standing by his/ her side
  • Prefers conversation at distances of 4 to 6 ft.

Problems with visual acuity:

  • Holds book close to eyes, or bends to read
  • Places face close to desk while writing
  • Sits near blackboard

Balance problems:

  • Can't ride a bicycle
  • Is considered clumsy
  • Loses balance easily in the dark

Other:

  • Frequently last in completing group activities
  • Exhibits symptoms of anxiousness in new areas
  • Often last to enter the room
  • May have some repetitive behavior (seems to do the same things in the same ways, or continues to order the same things at lunch)
  • May choose to stay home alone rather than be faced with the embarrassment of dealing with a new situation in the dark
  • May appear unconcerned and may fail to fully participate in groups activities
  • Frequently hesitates at the top or bottom of stairs (for orientation)
  • Avoids walking or running in unfamiliar areas, especially when there is bright sunlight or when in a darkened area
  • Appears to be constantly visually scanning a group

Hearing Loss in Usher Syndrome

Type l

  • Children are born profoundly deaf or with just a little hearing in the low tones at loud levels of sound.
  • Most but not all state that hearing aids help only a little or not at all.
  • Some young children are showing benefit from cochlear implants.

Type II

  • Children are born hard of hearing with a sloping audiogram so hearing high pitches is harder than hearing low tones.
  • Hearing aids are effective and most children are mainstreamed.
  • Hearing loss does not change over many years but may go down with noise exposure or with aging.
  • When vision gets bad, people think they are losing their hearing but, instead, they are losing the ability to lipread.

Typical audiogram for Usher Type II

How does Usher Syndrome impact on education?

If teachers, parents and students are proactive, education can prepare the student with Usher Syndrome for employment and independent living. As with all children, many factors come into play when determining the best educational placement. Programs should meet all the needs the individual may have in the future, and provide vocational and mobility training, as well as academics.

In general, a teacher should always be aware of the student's visual field, even though the student's ability to see may vary from day to day. Consultation with an itinerant teacher of children who are visually impaired is invaluable. Overall, always take into account the student's future dual-sensory impairment when identifying skills to teach.

Specific adaptations are helpful for many persons with Usher syndrome. The following suggestions are from “The Usher Syndrome Adolescent Implications for School Administrators, Teachers, and Residential Advisors” by Wanda M. Hicks, specialist at Gallaudet College, and “When You Have a Visually Handicapped Child in Your Classroom: Suggestions for Teachers” by Iris Torres and Anne L. Corn, for the American Foundation for the Blind.

Classroom Accommodations and Adaptations:

  • Lighting should be adequate without glare. Use full spectrum lighting whenever possible.
  • Teachers should provide group instruction from a non-cluttered background area, and avoid unneeded movement.
  • Windows should be behind students. Teacher should never be in front of windows.
  • Chalkboard should be cleared of unneeded marks, and regular printing (instead of all capital letters) used. Use white chalk only.
  • Colors should be softly neutral, yet textured,in the background of the teaching area. Floors and carpets should not be dark red or brown.
  • Furniture should be arranged to provide easy movement in open space. Keep drawers and doors closed. Discuss all furniture rearrangement with students. Seat students where they are comfortable (e.g., possibly front side so they can see the chalkboard and other students in the class).

Materials:

  • Print should be maximum contrast. Avoid dittos; if dittos must be used, give the student a yellow acetate overlay to use. Use 12 to 18 point type with non-glare paper.
  • Students may need individual copies of wallhung graphs or charts, or they may need time to examine these charts close-up.
  • Tests may have to be adapted for individual use, including allowing students to mark answers on test booklets or providing the test in a different format.
  • Low-vision aids may eventually be prescribed, and assistive listening devices can be used.

Techniques:

  • Others may have to adapt their sign language to adjust to the student's limited vision. Keep signs as small and concise as possible, and increase the duration of each sign. Eventually, tactile sign may be a receptive option.
  • Begin including more and more tactile and olfactory materials and cues for the student. A vision teacher and/or an orientation and mobility specialist may recommend techniques to use during specific activities.
  • When lighting is inadequate, a “sighted guide” can help the student move in unfamiliar areas.
  • For all tasks, students may need “time and a half” to complete the same work as their peers.

When doing repetitive academic work, students can be assigned half the questions or problems their peers are assigned to equalize the length of time spent in homework or academic drill.

What are the emotional issues, and where can students andfamilies get support?

It can be difficult to cope with the initial diagnosis of Usher Syndrome. When the diagnosis is made for a minor child, parents and doctors will want to take the child's age and maturity into account when telling the child. In general, children's questions should be answered honestly, but with a positive attitude, providing only enough information to answer those particular questions. Most professionals feel students should know their condition before going into high school, if it is diagnosed by this time. This way they can make educational and vocational choices that will compensate for their eventual dual-sensory loss.

Depression and anger may follow the initial diagnosis. The following are symptoms or behaviors that may occur:

  • Talking or thinking about suicide: While few deaf-blind people actually commit suicide, these feelings are legitimate and need to be addressed by all in contact with the person.
  • Increased isolation: Isolation may have been noted even before diagnosis. Coping skills already used may be expanded to include skills needed for increased night blindness and tunnel vision.
  • Other symptoms of grief: As in any traumatic situation, the person with Usher Syndrome will pass through, and alternate between, the stages of grief. The same applies to the person's family.
  • Perceptions of others: Deaf friends may feel the student with Usher Syndrome is ignoring them, intentionally acting “clumsy” or“stupid.” Explaining to students with Usher Syndrome how they can compensate socially for their decreased vision can help them develop new means of relating with friends.

Resources

DB-Link - National Information Clearinghouse on Children Who are Deaf-Blind
(800) 438-9376 (voice) or (800) 854-7013 (TTY)
Internet:
SpecialNet: TRD

Helen Keller National Center for Deaf-Blind Youths and Adults
111 Middle Neck Road
Sands Point, NY 11050

Texas Association of Retinitis Pigmentosa
P.O. Box 8388 Corpus Christi, Texas 78468-8388
(512) 852-8515 (voice, TTY, fax)

Texas Commission for the Blind
Deaf-Blind Services
4800 North Lamar Austin, Texas 78756
(512) 459-2575

Texas School for the Blind & Vsually Impaired
Deaf-Blind Outreach
1100 West 45th Street Austin, Texas 78756
(512) 206-9242 (voice) or (512) 206-9282 (TTY)

“Usher Around the World” newsletter
5801 Southwood Drive
Bloomington, Minnesota 55437
(612) 831-5522

What IS O&M

Orientation is knowing where you are and being able to plan how to go where you want to be. Mobility is the actual movement from place to place. Together, orientation and mobility are commonly referred to as “O&M.”

Every person who is deafblind can benefit from O&M instruction to help him understand the world around him, where he is in it and how to travel within that world as safely and purposefully as he is able. As the intervener, you are in the ideal position to help your student master O&M skills as you practice them in daily routines and activities. The O&M Specialist who is working with your student, either through direct services or by consultation, is the person who should consult closely with you to ensure your student is given the techniques and strategies needed. The O&M Specialist can also give you suggestions for how to help orient your student to objects and people and how to safely travel to reach them. He/She should also support you in learning techniques such as sighted guide or proper use of a cane.

What are Landmarks & Clues?

For a child to acquire independence during travel, he must have a solid orientation foundation. Orientation is made up of two essential elements – clues and landmarks. Both elements encompass all available sensory information (auditory, tactile, olfactory and visual).

Clues are temporary information

Landmarks are permanent or always present

To use clues and landmarks, the child needs to be able to identify common household and environmental sounds, smells, temperatures and textures. Some examples of clues are the sound of a lawn mower, smell of hotdogs cooking on a grill, balloons that mark the place for the party and light from windows. Some examples of landmarks are the feel of a wooden floor, a fire extinguisher box in a long hallway, the swing set on a playground and the curb cut at the crosswalk.

Ideas to try

Working closely with your student’s O&M Specialist, try to incorporate the following strategies into routines your student finds meaningful and recognizable to help the student gain a better understanding of how to use landmarks and clues to orient himself:

  • Choose a room in the home that the child needs to become better oriented in, so he can safely move about it on his own and find what he needs. This is also applicable if the child is not mobile, because he can learn to know where he is and feel more comfortable being left alone for a few moments in the room.
  • Take some time to analyze how that room is set up. Choose a few clues and landmarks that would help the child orient to that room. Below is an example of clues and landmarks chosen for a bathroom:
    • Tactile: tile floor (landmark), fluffy rug (clue)
    • Auditory: everything sounds louder (landmark), toilet flush (clue)
    • Visual: the bright checkered pattern of floor tile (landmark), bright lights reflecting in mirror when they are on (clue)
    • Odor: soaps and shampoo smells (landmarks), stinky toilet (clue)
    • Temperature: cold tile floor on bare feet (landmark), steamy feeling after someone has showered (clue)
  • Once you have chosen the landmarks and clues to point out to the child and have decided on a systematic way to introduce them to him, choose a time when he would be most willing to let you show him, or help him explore the clues and landmarks.
  • Tell/sign to the child that the room is going to be explored. Use a consistent name for the room, and always enter the room the same way. Proceed to explore the room with the child. If he is not mobile or tends to either just sit or wander about, it would be best if you systematically direct the exploration. This means exploring the perimeter around the wall areas first, and then what is in the middle. If the child is mobile and curious, let him take the lead. Take time to help the child learn about each landmark and the chosen clue; give him names for them. Take note if the child seems to show interest in one of the landmarks. That could become a home base for him in that room. Communicate when the activity is finished.
  • Do this more than once in the same room. Observe how the child begins to orient himself to the room on his own. Do you see him developing his own mental map?
  • Do this with every room and area in the home (or school) that the child spends time in. Sometimes to aid in orientation, create a new clue or landmark in an area. For example, using a bright strip of color that has a different texture than the rest of the floor to mark the top and bottom of the stairs can help the child know he is at the stairwell. This may also be a safety feature.
  • Choose an outdoor area in which to teach the child the use of specific landmarks and clues.
  • Help the child become oriented in areas that connect rooms such as the hallway or entryway. Outdoor connecting areas might be the area between the back porch and the backyard or the area between the front porch and the sidewalk in front of the house.

Ready to try? Drop us a line to let us know what you found most useful. That way we can share your information with others!

, 512-206-9242 or

Learn to Move – Move to Learn!

Adapted from Understanding Deafblindness: Issues, Perspectives, and Strategies Vol 2, Orientation and Mobility for Infants and Young Children, Linda Alsop, Editor, Ski- Hi Institute, Utah State University, Logan, Utah.

Have you wondered how you could get hooked up to resources about deafblindness without ever leaving your school building? Ever needed information about a particular student's hearing or vision impairment but there was no one around to ask? Would you like to connect with other interveners who provide the same kind of service you offer with deafblind students across the country?

Here are some great options for you to try:

· Check out state and national websites that provide incredible information on deafblindness. You may already be familiar with the Texas School for the Blind and Visually Impaired 's website. On the sidebar to the right, you will find a heading called Texas Deafblind Project. Click on that and it will send you to a page with many kinds of information, from an intervener resources section to varied materials on deafblindness.

· Nationally, there are many web-based resources. From the TSBVI website, you can click on “statewide, national and international resources”. That will lead you on journeys to the National Information Clearinghouse on Children who are Deaf-Blind ( DB-LINK , at , or the Helen Keller National Center .

· There is an Intervener listserv that is moderated from Utah and is open to all interveners to join. The SKI HI Institute is hosting a dedicated Paraprofessional and Intervener Training listserv . To join the listserv, simply go to the following website and follow the enrollment directions:
Once you have registered, go to: to submit postings.

Ready to try? Please connect with one of these resources and then drop us a line to let us know what you found most useful. That way we can share your information with others!

Cyral Miller, 512-206-9242 or

Children who are deafblind sometimes have difficulty bonding or feeling a connection with other people. The reasons for this are easy to understand.

The combination of hearing and vision loss causes children who are deafblind to miss information, or get distorted information from the environment and people around them. They may be unaware who is with them, or even if anyone is around. This can cause them to feel isolated and confused about what is happening, or what is about to happen. As a result routine events may catch these students by surprise, and cause them to not trust others. Second, because a child’s communication methods may be different than most, others may not take the time to (or be unable to) explain what has happened, or what to expect. Finally, because other people may have a had a difficult time understanding what the child is trying to communicate, the child may have decided that others aren’t paying attention, and as a result can’t be trusted.

In spite of these obstacles, here are some things you can do to connect with your student:

  • Make sure your student knows who is with him/her. Use a name sign or other method to identify yourself, and always let the student know when you have arrived and when you are leaving.
  • Give the student as much information as possible about what is happening, and what will happen in the future. How this is done will vary based on your student’s sensory and communication abilities. Use speech, sign, pictures, tactile/object symbols, calendars, or simply provide the opportunity for the student to explore. The more information the better, using as many methods as possible.
  • Pay close attention to what the student is trying to tell you, even if it is subtle. Acknowledge to the student that you have listened, and honor requests when possible.
  • Do activities together that encourage interaction and turn taking. Let the student know that activities are not one-sided—I tell and you do. Help them know that we’re all in this together. Have conversations—takings turns discussing or interacting with a common topic or object
  • Remember that their “topics” are valid too. Make time to do activities that the student requests or values.

Ready to try? Drop us a line to let us know what you found most useful. That way we can share your information with others!

Cyral Miller, 512-206-9242 or

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