The DeafBlind Power group has been investigating funding for HKNC. We are learning that funds are allotted specifically for HKNC; other similar programs do not have the opportunity to compete for the funding.
Image Description: Screen shot of text from appropriations bill (PDF). Helen Keller National Center. The Committee recommends $9,127,000 for the Helen Keller National Center for Deaf-Blind Youth and Adults. The Helen Keller National Center consists of a national headquarters in Sands Point, New York, with a residential training and rehabilitation facility where deaf-blind persons receive intensive specialized services; a network of 11 regional field offices that provide referral and counseling assistance to deaf-blind persons; and an affiliate network of agencies.
Folks from DeafBlind Power will have a booth at the upcoming International DeafBlind expo in Las Vegas, July 30-August 2nd! Come and visit us! We are interested in sharing information with you and will film any stories that you may want to share. Facundo Element will be there with us.
Great news! Fundraiser hosted by Roger Poulin and Nancy Sommer was a huge success. At least $1,095.00 raised (more funds expected online). Over 50 people attended and many folks volunteered. Thank you all so much for your support!
Next plan is to host a booth at the upcoming International DeafBlind Expo in Las Vegas- July 30-August 3rd, 2014. Please continue to donate to help fund this trip. DeafBlind Power will be present to answer any questions you might have and film any stories you may want to share. We look forward to meeting you there!
Special thanks to Roger Poulin and Nancy Sommer for hosting a breakfast fundraiser this morning! Over 50 people expected! We are grateful for the outpouring of support!
If you want to donate, you can either go to the "support" link on this web page and donate online, or mail a check to Facundo Element (Memo: DeafBlind Power) to: PO BOX 1793 Boulder, CO 80306. Thank you for your ongoing support!
Video link: http://youtu.be/ZXcEjBh6KGw
Vlog Content/Footage Note: 11 minute video – vlog style- of Allyson Snow. She is wearing a dark top. The video has a dark blue background.
A big hello to DeafBlind, Deaf, and hearing folks, staff and interpreters, thank you for watching my vlog. My name is Allyson Snow. [name sign = “A” goes from forehead side in downward direction to chin side, “snow”] I am DeafBlind with Usher’s Syndrome. I am here to share my experience at Helen Keller National Center (HKNC) for the Deaf-Blind adults. FCC – Federal Communication Commission – and HKNC signed an agreement that HKNC is one of national free equipment distributor for DeafBlind people. Iphones, Samsung, laptop and various equipment are part of the program. HKNC has a coordinator called NYDBEDP –New York Deaf-Blind Equipment Distribution Program. The coordinator’s name is Christopher Woodfill [name sign= tap “C” and “W” cross over on opposite shoulder]. He is also DeafBlind. He is a caring person and we are at ease with each other. He treats me well. I feel as his equal. Prior to him getting the position as a coordinator, he treats me just the same. We share our experience as the DeafBlind person and enjoy our rapport. When he got the coordinator position, he came over to conduct an interview assessment. His conduct and manner remains unchanged before and after his getting the coordinator position.
He asked me what kind of phone services I wanted to use. I told him that I wanted to use AT&T. He gave me a list of names of instructors to choose from to train me on laptop and Iphone just in case if I decided to order them. It is best that I receive the training. I notified him that I requested James Feldmann. [name sign = “J” across from forehead side to other forehead] He is a Deaf person who uses ASL, so it will make our communication go smoothly. He has worked as a Technology Instructor for the DeafBlind people at HKNC for many years. That’s why I chose him. Christopher put down James’ name on the request form. He warned me that it will take around 3 months to process the request form. I said, “That’s all right”.
After 3 months passed, Christopher notified me that there was some delay with my request and I was ok with that. I finally received the Iphone and I was excited. When I tried to use it, I realized that I couldn’t see the screen too well. I asked Christopher if it was allowed to make a replacement with different equipment and he said, “Sure”. I was thinking about my problem I was having and realized that HKNC should have the demo of Iphone, Samsung, and various equipment available. For example, a demo laptop can be looked at and use hands-on, so a DeafBlind client can figure out if s/he can see well what’s on the screen. Each DeaBlind client has various vision loss, so it is not uniform vision type for everyone. It will be easier and efficient if a DeafBlind client has an opportunity to evaluate each demo equipment to figure out if it meets her/his needs before ordering. With this current process, there is no demo equipment being available and it is done via providing a list of equipment name to choose from and placing an order at the client’s home. That’s all. At that time when Christopher interviewed me for my need assessment, he provided me the list of equipment names. I found it challenging without having an ability to do a hand-on experience with the equipment. I just knew from what I wanted to try – I wanted Iphone and laptop. I didn’t have an opportunity to explore the equipment to know which ones fits my needs well. Originally, I thought Iphone would meet my needs, but I had hard time reading the screen. I wasn’t happy about finding out that way. Christopher understood and asked me which phone I wanted to replace, I was relieved that I was able to do so. I decided to take an action on my own by going into the AT&T store because they have demo phones that I can actually test to find out if I can see the screen well. The written list of equipment and even via verbal were not helpful for me to determine which ones meet my needs. That didn’t work too well. When I was at the AT&T store and checked out several phones, I decided on a Samsung phone because I was able to see the screen very clearly. I notified Christopher and James that I preferred the Samsung phone. My request was accepted to replace my Iphone, however it took another 3 months to process. It was really a test of my patience by waiting a bit longer. I am amazed by the length of this process. I am surprised that the process to deliver my Samsung phone took longer than my Iphone. I just couldn’t believe that. I followed up from time to time and was told that it was normal that the process for Samsung phone takes more time than Iphone. I am skeptical, but what choice do I have? I said all right.
I contacted James asking about the status on my Samsung phone from time to time. I felt bad and sorry for him for putting up with my wanting to know the status. However, over the time, I gave up asking for the status as I began to lose my patience. Out of the blue, a different coordinator at HKNC who also works under NYDBEDP. He wrote an email saying, “Hello, I have your Samsung phone.” I was surprised and asked him when he received it. He replied he received it two weeks ago. I didn’t understand why he didn’t get in touch with me right away as he received the phone. It could have saved me from being impatient and my bothering James for the past two weeks. James has been diligently checking the status of my phone for the past two weeks and didn’t see it had been received. Ryan Odland knew about my phone’s arrival and got in touch with me at much later period of time. I was ready to get started with my training on my phone and asked him to give my phone to James. Ryan said “No, it is not possible and I must work with you.” I was perplexed and notified him that I already asked Christopher to put down James’ name on the request form specifically asking for him to train me on my equipment. I also notified James Feldmann my wish for him to train me. Ryan said there is a change, so I am taking over the training program. He was going to work with me. I told him no, I was not comfortable with this arrangement. At that time, his demeanor made me feel like I was not treated well. Therefore, it made me feel uncomfortable. Just for your information, he was also DeafBlind. His conduct of communication via email was in superior manner, not in layman’s language. It made me feel inferior trying to follow his written communication. His communication indicated that he was staff at HKNC, therefore he was an important person and I must work with him. I felt deflated. The funny thing is that we were social before he got that position and we treated each other well and as each other’s equal. After getting a job, his attitude changed. Remember that I mentioned previously about Christopher Woodfill, our relationship remains unchanged before and after him getting the position. It was not the case with Ryan. He acted like he held a higher position with important status. I felt that with his behavior may not be well-received among the DeafBlind students at HKNC. I sympathize with the students who may have to deal with Ryan. They may feel unimportant. Perhaps, few of them may feel inferior. Not only did this occur with Ryan, but also with other DeafBlind staff at HKNC that did similar things – treat the students poorly.
Now back to the point of my story, we had some challenging discussion between us, but it is going to be another long story to share. I am not going to share it at this time. My point is that I felt that HKNC is not being efficient with placing an order for the equipment. I ordered AT&T Samsung phone. Ryan relented and gave my phone to James. James gave my phone to me and I noticed immediately that the phone services was with T-Mobile. I didn’t understand why. I contacted James to inquire why did I received T-Mobile Samsung phone. James was not pleased with mixed-up and verified with the request form that it was AT&T Samsung phone. It proved my point of “inefficiency”. What’s up with that? It created another long discussion and James deferred to his supervisor of the Technology Department named Debbie Harlin [name sign= tap “D” and “H” cross over on opposite shoulder]. Debbie was apologetic at this oversight and said that I should go ahead and try to see if I can get my phone working since “T-Mobile is under AT&T”. They are the similar phone services, she said. I said ok, I will give it a try, however I was not 100% confident that it will work. James and I went to the AT&T store to hand over my phone to AT&T technician. The technician made some attempts to activate my phone, but discovered that it cannot be done. With the obstacle of being able to use my phone, I became very upset because I have been waiting from the Fall to the Spring to be able to use my phone. Now, I cannot use my phone and had to return it to HKNC and FCC. It means that in order to receive a new phone, I must wait another 3 to 6 months. I said no way to go through this process for third time. I told James to forget it and I do not want to deal with NYDBEDP and HKNC anymore. The hassles of the situation took up much of my time and virtue.
I went ahead and purchased the phone with my own money. I was in need to able to use my phone, so my only option was to take action on my own and use my money to make this happen. I finally got my AT&T Samsung phone working. Even though I was excited about this, it left me with a bitter taste for what I went through for past few months.
My purpose of sharing my experience via vlog is that DeafBlind people need to be empowered to take charge of their situation. Some DeafBlind people are accepting of how HKNC staff treat them poorly. It must be stopped. It is time for them to become assertive and speak out about their needs and rights. Some of them are quiet, not say something about it, and yet continuing not happy about how they are treated. It remains with them after leaving HKNC and in their home place. Where is their sense of independence? It didn’t happened. We did in the past tried to provide feedback on how to improve services at HKNC. It didn’t take place. Since 1995 and many years before and after my time, I witness the services at HKNC worsening.
I heard about the announcement with Executive Director of the HKNC being available. I want to see the history happening with a DeafBlind person becoming Executive Director of the HKNC. It would be incredible! With that change of Executive Director, there is a hope of attitude change and better treatment. I am so optimistic, so I encourage all of you to speak out as to what is a correct model for the DeafBlind students at HKNC. Historically speaking, HKNC has caused students to feel inferior. If it continues, it becomes a dangerous practice for one’s emotion well-being. I am thinking to make sure I have said all what I wanted to share with you all and I think that’s it. I hope my vlog helps you to understand about my experiences. I encourage you to share your vlog about your experiences at or with HKNC. Do not remain silent! Some of you are supporters, Deaf, hearing, staff and professionals, it is time for you to show your support toward DeafBlind people. If you are interested in making some donation, please do visit the website. The name of the website is www.deafblindpower.com. There are several vlogs and written statements. Thank you and have a nice evening. Good-bye.
From: "Snyderman, Mark" <Mark.Snyderman@ed.gov>
Date: June 4, 2014 at 3:14:29 PM PDT
To: Jelica Nuccio <email@example.com>
Cc: "Jones, Deanna" <Deanna.Jones@ed.gov>, "Turner, Sonja" <Sonja.Turner@ed.gov>, "Finch, Tom" <Tom.Finch@ed.gov>
Subject: RE: Summary
Dear Ms. Nuccio,
It was a pleasure to meet you at our meeting on May 19th. We appreciate your coming to Washington to meet with us in person. I sincerely apologize for the issues with the interpreters. Although we arranged for two interpreters who are certified to communicate with individuals who are deaf-blind for the previous meeting that you had to cancel, there was a breakdown in communication regarding the arrangements for the May 19th meeting. Thank you for being gracious and making the best of the situation.
I would like to take this opportunity to reiterate some points and to respond to the items in the summary you provided related to the content of our May 19th meeting. At that time, I explained that the Helen Keller National Center (HKNC) is funded through a direct appropriation made pursuant to the Helen Keller National Center for Deaf-Blind Youth and Adults Act, as amended (29 U.S.C. §§1901-1908). These funds are not awarded competitively and cannot be used for another purpose or to fund other service providers. I also briefly summarized enforcement mechanisms that are available to the Department if a grantee is found to be out of compliance with the authorizing legislation, Federal rules and regulations, or the grantee’s approved application. For example, the Department would have the authority to place a temporary hold on grant funds until a grantee comes into compliance. However, this is an extreme measure that would require extensive findings and notice to the affected grantee. We currently have no plans to implement such a measure with the Federal funds awarded to the Helen Keller Services for the Blind (HKSB) to operate HKNC.
We also discussed some of your concerns regarding the operations and administration of the programs at HKNC, including training for staff in multiple communication methods. We are in the process of planning an on-site monitoring visit to HKNC for early fall. It is useful for us to have information from outside sources to help inform our monitoring process, including on-site monitoring. As you indicate in your summary, we agreed to look into the possibility of including a non-Federal reviewer as part of the monitoring team.
As you noted, we received the 22 page document you had shared previously. We take your concerns seriously and subsequently met with principals from HKNC and HKSB, discussed some of the concerns raised in the letters, and requested additional information. However, we were not able to conduct the on-site monitoring visit to HKNC scheduled for the fall of 2013 because the staff member assigned to conduct the monitoring terminated his employment with the Federal government. We hope to pursue the issues more fully when we conduct an on-site monitoring visit currently planned for early fall of 2014.
At our May 19th meeting, we also discussed some of the specific actions we have taken. For example, we encouraged HKSB to include representatives from the deaf-blind community on the search committee for the new executive director, and it is my understanding that three deaf-blind individuals are on that committee. We also stated our expectation to HKSB that it will maintain an independent website for the Center that may be linked to the HKSB website, but can also be accessed directly.
In addition, we discussed the search process for the new executive director of HKNC. As I indicated, we do not have control over the process or selection. However, we provided input to HKSB regarding qualities and experience that we would expect the individual to have and plan to inquire about the status of the selection process. Federal regulations at 34 CFR §74.25(c)(2) also require HKNC, as a recipient of Federal funds, to seek approval from the Department of any change in key personnel. HKSB will be required to submit the resume of the individual proposed as the project director for the grant to the Department for approval.
Regarding your expenses, I regret that we do not have a source of funds available to help you cover the cost of your visit. While the Department is happy to meet with outside organizations and individuals, it is not our practice to reimburse outside groups for travel costs.
At our meeting, I was pleased to introduce you to our new staff member, Deanna Jones. She will be assuming the project officer position related to HKNC. She will be working with me and Sonja Turner, our grants specialist, in our efforts to administer the grant and monitor the Center.
We appreciate your input and would be happy to meet with you again sometime in the future, either in person or electronically.
Chief, Service Programs Unit
Rehabilitation Services Administration
U.S. Department of Education
550 12th Street, SW
Washington, DC 20202
202 245-6768 (voice)
202 245-7591 (fax)