Previously Submitted Questions (most recent first)

I have a transitioning 21 year student in need of a job. She lives in Northern California. Can you tell me about the possibility of placement for a year long or less at the Helen Keller Center in Sands Point NY? (Costs, Grants, Type of services, Training) Or perhaps another training facility in or out of state?

Can you tell what you offer perhaps as assistance in this rural area of California? What can you do for us?
(The student is registered with you.)

Maurice Belote - Project Coordinator

picture of Maurice Belote - who is answering the question

Thank you for your questions. To clarify, you are asking about what services we offer and if they are available in rural California, more information on transition and training programs with specific questions about the Helen Keller National Center, and if there is any information about costs associated with this type of program. Let me try to answer all of them individually:

1) We are a statewide service so we cover everywhere here in California, rural and urban. For a list of our services and frequently asked questions and answers, please see the "Services" section of our website at:  http://www.cadbs.org/services-servicios/

You mentioned that this student is "registered". Thank you for participating in the Annual Child Count ( http://www.cadbs.org/census/ ). This is the counting of children and youth (age birth to 21) in the state with combined vision and hearing loss. Having this information allows us to know where these youth are, what school LEAs may need assistance, and share population information with the state and federal government to help allocate funding for assisting California youth with with these situations.



2) Hellen Keller National Center (HKNC) is a comprehensive training program, in that it can cover daily living, O&M, technology, communication, braille, vocational assessments, etc. I recently wrote a chapter about transition resources for a publication by the California Department of Education. Here is the information about the HKNC:

========================================================
Helen Keller National Center
http://www.hknc.org/
141 Middle Neck Rd.
Sands Point, NY 11050
516-944-8900

Mission: To enable each person who is deaf-blind to live, work and thrive in the community of their choice.

Helen Keller National Center (HKNC) offers individualized evaluation and training which will assist consumers in achieving their own definition of success. The trans-disciplinary team works in partnership with each consumer to design a program to meet his/her needs, desires, preferences and abilities. The emphasis for the consumers in the program is to participate in learning opportunities which will lead to successful employment and a full, enriched and independent life in the community. The philosophy of the Center is one of self-determination for all consumers.

Consumers may receive individualized services in a number of ways:
1) participate in a full or partial day vocational training program at our headquarters in New York;
2) receive short term training in their home community
3) participate in a 2-week summer seminar for high school students who have combined vision and hearing loss
4) attend an 8-week summer evaluation before completing high school.

Applications to the HKNC program go through the HKNC regional representative. Most students are sponsored by their state vocational rehabilitation program.

Region 9 – Southwestern Region (includes all of California)
Cathy Kirscher, Regional Rep
http://www.hknc.org/FieldServicesREGREPADD.htm#Region9
9939 Hibert St. #108
San Diego CA 92131
V/TTY: 858-578-3800
VP: 858-397-5522
========================================================

Your best bet is to contact Cathy Kirscher at the number above for specifics about the onsite training program. Cathy is a wonderful resource in the Western US.

It is my understanding that the Dept. of Rehab. pays for people to go back to the NY center for training, including housing, travel, etc. There shouldn't be any costs for the individual as far as I've ever heard. Cathy should be able to answer more specifics about the programs and funding.




There is another option that focuses more on living skills - the Hatlen Center, which is located here in the Bay Area so a lot closer than going all the way to NY. Here is what I wrote about it for the same CDE resource:


========================================================
The Hatlen Center for the Blind
http://www.hcblind.org/
2430 Rd 20
San Pablo, CA 94806
(510) 234-4984

Students at The Hatlen Center for the Blind are truly living on their own: paying their own rent, choosing and cooking their own food, and traveling to meet real-life needs. Students are encouraged to solve their own problems, choose their own lifestyles and experience the consequence of their choices. We are witness to the fact that undertaking these challenges in a supportive environment is the best way to build a student’s confidence. Every part of the Hatlen curriculum is designed to address the individualized goals that will lead students to the last transition: a life of their own.
========================================================

The Hatlen Center doesn't focus specifically on deaf-blindness, but they have always served deaf-blind clients very well and they have a great reputation. Perhaps you are already familiar with them. If not, please contact them to get more information.

Can you please suggest some resources for me to share with a parent who has a child with CHARGE syndrome, regarding hearing aids and feedback?

Question:  Can you please suggest some resources for me to share with a parent who has a child with CHARGE syndrome, regarding hearing aids and feedback? This child is experiencing constant feedback from the new aids and the mom has been told by the audiologist that this is to be expected, that the shape of her ear makes the fit poor, and within seconds of inserting them, it's giving feedback. Is this normal? What might she be hearing when this is happening? Is their a way to reduce this from happening?

Gloria Rodriguez-Gil, Educational Specialist, and Dr. Barbara Franklin, Principal Investigator, respond: 

It can be normal for children with CHARGE to have problems with the fitting of behind-the-ear hearing aids because their ears cannot adequately support the placement of the aids. The feedback may be occurring because the earmold may be moving in the ear when the child moves, or the dangling hearing aid may be pulling the ear mold out of its precise placement.

 Here are some ideas that may be helpful:

1. Ask for new ear molds to possibly get a better fit.  Be sure to ask for a solid ear mold which reduces the possibility of feedback.

2. Secure the mold(s) with tape. Some possible brands of tape include TopStick, and Coban wrap.

3. Turn down the volume of the hearing aid slightly, although this should not be done without consulting with the audiologist.

4. Post the question to the CHARGE Listserv to look for practical solutions that parents have used with their children. This is an active, online support list for individuals with CHARGE, parents, family members, caregivers, doctors, therapists, or anyone with an interest in or is working with a person who has CHARGE syndrome. This is the link to the listserv:  http://health.groups.yahoo.com/group/CHARGE/

5. If nothing else works, perhaps look at one of these three alternatives:
    a. An open-fit hearing aid that uses a different type of mold that doesn’t require the same kind of fit. When first introduced, open-fit aids were used for individuals with mild to moderate hearing losses, but now they are being used with individuals with severe hearing losses. There are many websites with information about these new hearing aids, including: http://openfit.com/hearingaids/
    b. Bone Conduction Hearing Aids (BCHA).  BCHA can be used with mild to moderate hearing losses.  They may not be used with severe to profound losses.  Here is a link that explains this hearing device: http://www.atresiamicrotia.org/hearingdevices/ 
    c. Bone-Anchored Hearing Aids (BAHA). BAHA can be used with mild to moderate hearing losses.  For infants and preschoolers, they can be attached to a headband (a) and for children older than five they can actually be implanted (b).  Option (a) is non-invasive and (b) is invasive.  Here is a link that explains this hearing device: http://www.umm.edu/otolaryngology/baha.htm\
 

 

Question: I teach a young child in my preschool classroom who has hearing aids and an FM system. My program specialist is also recommending a sound field system for my classroom. Can the sound field and FM be used at the same time? Could there be feedback problems if the student is receiving sound from both systems? And would I wear two microphones or is there a way to merge the two systems so I only wear one microphone? Thanks.

 

Dr. Barbara Franklin, Principal Investigator, responds:

The Phonak Sound Field System allows a child who is wearing a personal FM system to receive sound from both systems without feedback issues. The two systems can be merged so that the teacher wears only one microphone. Unfortunately this can only be done using the Phonak Inspiro personal FM system. Further information can be obtained by contacting Phonak USA directly which is currently the only sound field system which allows for this flexibility and improved sound reception.

I would like information on lip reading. I want to learn this approach to acquiring speech and reading skills for hard of hearing people. Or if you know of someone or some place that I can seek help,please let me know. Thank you.

 

Dr. Barbara Franklin, Principal Investigator, responds:

I am an ASHA certified and California licensed audiologist. I remember teaching lip reading back in the 50s at the New York League for Hard of Hearing. At that time it was primarily a social activity although it is agreed that lip reading is taught best in a group situation. Lip reading usually focuses on those individuals who are adventitiously deaf, that is, individuals who had learned language prior to the onset of the hearing loss. That is why the term lip reading has been replaced by “speech reading.” Classes teach an individual how to incorporate what is seen on the lips and what is heard through the ears, aided or unaided. You learn how to use context to distinguish the homophenes that are sounds that look alike on the lips, such as “p-b-m” and “t-d-n”. Your best source of information is the organization “Hearing Loss Association of America”. This organization was founded in 1979 as “Self Help for Hard of Hearing People (SHHH)" and the name was changed in 2006. This organization is the nation's leading organization representing people with hearing loss. They can help you find the closest lip reading class, and the Northern California chapter coordinator is Cindy Jagger (707-422-3753) and the Southern California chapter coordinator is Nanci Linke-Ellis (310-829-3884). Please feel free to contact me directly if you would like additional information: Barbara Franklin, Ph.D., barb8881@aol.com.

 

In the last nine years of working with a student who is deaf-blind, we have taught each other so much! As interveners, do we know everything about how we interact with our students? Are we ready to accept changes as our student progresses?

Question:  In the last nine years of working with a student who is deaf-blind, we have taught each other so much! The folks who work with these children need to recognize the subtle signs these children and young adults use to communicate with us as they become older. This communication needs to be recognized, reinforced and developed. As children evolve their needs change as does the subtle adaptive communication they have learned. We need to be flexible and ready for the changes in our students' lives. The student I work with figures out new ways to communicate his needs. Sometimes it takes, say, a person working with someone else to see this student using a new adaptive sign and saying "Hey, I think he just asked for his glasses back on."  As interveners, we don't know everything about the student(s) we work with. We need to be flexible and listen to the help our peers offer us.  As interveners, do we know everything about how to interact with our students? Are we ready to accept changes as our student progresses?

David Brown, Educational Specialist responds:

This is a great question! All too often people assume that the intervener needs to know all that there is to know about the child, to such an extent that nobody else needs to be concerned or involved. The other part of your question raises another important issue too. Working as an intervener is like parenting a child or teaching a child, in the sense that it demands the forming of a close, supportive, emotional relationship so that the child can be helped to grow and learn and move towards maturity and independence. But, once such a relationship is formed it is surprisingly easy over time for the intervener to become over-protective, to assume an inappropriate sense of ownership of the child, and actually to resist the child’s growing independence and assertiveness in order to maintain what has become a very comfortable and mutually satisfying relationship. Sometimes the child themselves might collude with this, opting for the easy, predictable, comfortable, and familiar things with this ‘special person’ rather than wanting to open up to new and more challenging experiences. The collusion might also extend to the professional support system around the intervener and the child, so that the couple are left alone because people are busy, and they feel that they don’t understand the child very well, and they feel that the intervener is competent enough not to need their input.

So, how can we respond to these issues? Well, the intervener is always a member of a team, with a specific and unique role but still only one part of the complex social and professional structure that is the educational team. Because of the nature of the role, it is likely that the intervener will become the professional who knows the child best, but then the intervener has the extremely important responsibility of sharing that knowledge with others. They need to do this for two reasons. First, in order to help other members of the team fulfil their own specific and unique roles as well as they possibly can. Then the intervener also has the responsibility of helping the child to develop relationships with a growing number of other people. Just like anyone involved in a very close relationship, it might take somebody else with a different and more distant perspective to notice things and point these out to the intervener. When we train people in the concept of the intervener we always emphasize that the intervener must not be the child’s only communication partner, nor their entire social network, nor the only person who is confident and comfortable to work with them, nor the person who single-handedly makes all the decisions about the child’s education. However wonderful an intervener (or a parent) might be, children with deaf-blindness are so incredibly complicated that there can never be a single person who knows everything that needs to be known about an individual child. Just as the intervener must have support from the rest of the educational team, so the intervener must be offering support from their unique perspective to the rest of the team.