Regarding USDB ~ our family's experience

The following is a letter (sent 30 July 2008, after meeting with Christine Kearl in Governor Huntsmals' office (!) ) about our family's experience with USDB over the last 6 years with 2 deaf children. After I sent this we decided that our daughter 4 would NOT go back to USDB even though her language skills need more help. This was a hard decision. USDB is the only game in town for deaf children.

Our daughter is now going to a beautiful (hearing) pre-school 5 mornings a week, speech therapy at the U 0f U twice a week (the drive is a drag, the program is Great) and she gets to play with friends and work on projects with me in the afternoons. Benefits: Our schedule is simplified, she is learning pre-reading and math skills, we are not being constantly told what we are doing wrong, she is not constantly tested and I don't have to deal with the administration at USDB that doesn't Listen or work to change the facilities or services unless threatened by State Legislators. She misses her USDB friends and Lori and Nicole.

There is a bit more to report. About 2 weeks ago the USDB Trailers in Orem had some visitors. Margaret Dayton (State Senator) came by as did Representative Fowlke and Daw. USDB Superintendnent Tim Smith was there as well as the local director Marilyn Madsen. USDB is being watched, the facilities were inspected and this, although long over due and slow for the children's sake, is progress.

Do YOU have something to say? I am adding the email addresses so that you can tell your story.
Here is the Letter I sent to the following:
Christine Kearl - ckearl@utah.gov - Office of Governor Huntsman Deputy of Education
Patti Harrington - patti.harrington@schools.uah.gov - State Superintendent of Education
Karl Wilson - karl.wilson@schools.utah.gov Utah State Office of Education
Christine Timothy - Christine.timothy@schools.utah.gov - Assistant to Utah State Office of Education
Karl White Ph.D. - karl.white@usu.edu - Wizard behind Newborn Hearing Screening and Sound Beginnings in Logan
Lorie Fowlke - Local State Representative

It was an honor and a pleasure to meet with you to discuss USDB and options/plans for new facilities. Thank you again for meeting with USDB parents and administrators in the Governor’s office. It is encouraging to know that the Governor is so concerned about the disabled children in Utah.

On Monday, 28 July 2008, the Utah State Office of Education held a parent input session regarding legislation to change the administrative organization of USDB, as well as other changes. Legislation is not the solution to the real problems at USDB; as there is no mention of improving the facilities, services, lack of progress or change, and especially the basic incompetence of the administration. This is the statement I read:

N (7) and M (4) are the youngest of our 5 children. They are both deaf and have cochlear implants. Over the last almost 8 years I have seen many different aspects of USDB. I have researched, corresponded with, and visited other pre-school and elementary programs for deaf children around the country. USDB's lack of adequate facilities and services is a fact. Its resistance to change, improvement, inability to manage their budget and the repeated placement of incompetent leaders is tragic since the consequences effect, and often dramatically interfere with, the lives of so many children and families for years.

In short: Legislation to reorganize the administration is not the issue. More state money for facilities is not the issue. The lack of forward thinking, organized, professional, even passionate and caring leadership from the top of the USDB.

While other programs in the state are getting new facilities and offering not only speech therapy to their students three times a week in the summer USDB-South (Orem) is languishing in 25 year old run down trailers and not only did ANY summer programs to even the neediest deaf children, finding loopholes in the regulations to get out of it.

The following are examples specific to my experiences with USDB in Utah County. Perhaps this is harsh, but there are many examples of USDB's incompetence:

- Lost parent evaluations. When I spoke to Tim Smith (1/08) about reorganizing parts of the school he mentioned that they needed to do evaluations. I mentioned that we have been filling out evaluations for years, and I knew other parents had too. He said he had never seen them. I have talked to about 10 families who thoughtfully wrote, complained and even left their name on the evaluations. I emailed Mr. Smith a copy of one of my evaluations and his reply was that he would be "in touch."

- Lack of progress with many students. The bench-marks that USDB uses are “standard”, yet what they consider progress does not meet many parent's expectations. What is the number of students that leave the USDB program and move to other programs, counties or states for better services? One boy (5) is at a residential school in St. Louis. Another family moved to St. Louis and another family the mother and two youngest children moved to Logan to be a part of Sound Beginnings where their son receives better services and is making progress. USDB-South thinks all this is fine--perhaps fewer students. We have decided our pull our 4 year old out and put her in a private hearing preschool with extra speech (at the U of U) after school.

- Inappropriate bathroom facilities for boys and girls. This is unbelievable. There is a history of sexual abuse with deaf children. Why, with 3-6 year olds, blur the lines of privacy and appropriate social behavior? The facility issue could be expanded to include the noisy, dirty trailers and the lack of a playground.

- Watered down IEPs. USDB tells the parents, who at first know little or nothing about speech acquisition, what the child needs based on what they can offer, NOT what the child actually needs. Parents also know little about IEPs, everyone is nice and the papers are signed. Once the parents realize the child is not progressing they are bound by the IEP and need to fight.

- Biannual hearing evaluations, when sometimes weekly or monthly evaluations are needed. These take place in a trailer (on wheels) only in the Spring and Fall, since they can't drive the trailer in the heat or cold from Salt Lake City. Why not just have an audiology booth at the school?

- No services for cochlear implants (CI). A child's CI needs to be programmed/checked often. Without this service locally the parents need to travel hours for help. When USDB has been asked about this they state that Primary Children's has "a monopoly on this service" and they don't follow through. Sound Beginnings has had the audiologist visit their program once a month.

- Lack of hearing peers in the pre-school program. Again, there is an excuse... not enough space (there are only 4 deaf children per class), not enough time (they are only in class for about 2 hours a day). All children learn about speech and communication through peers.

- Failure to follow through on progressive ideas. An example of this is their use of materials. One year I saved all of the papers that came home from my son’s USDB pre-school (not knowing what he would be required to bring back), at the end of the year it filled three large black garbage bags! Other schools for deaf pre-schoolers create/use experience books that are not only compact and simple they can be referred to for years.

- Lack of academic pre-school curriculum. While trying to teach the children to speak there is no reference to the alphabet/written language/reading and writing. When I asked the teacher if we could do more of this in class, to reinforce what we were doing at home and encourage pre-reading skills she asked why I wanted my child to be reading so young. Nothing changed. Many deaf adults don't read beyond a forth grade level. Our son had a progressive hearing loss, when he lost his hearing we hoped he would be able to at least read a bit of what we were saying.

- Interference by USDB into parents organizing to improve facilities. Former superintendent Linda Rutledge and Marilyn Madsen (USDB-South director) told the Alpine School District's business administrator not to work directly with parents. Ms. Rutledge attended a DFCM meeting that Michelle Archibald (parent) and I spoke at, she stood up and interrupted our presentation stating inaccuracies. The interim superintendent Tim Smith says things are changing and to prove it he helps clean the decrepit trailer (that didn't have janitorial services (2006-07) for about 8 weeks) and yet their is no real sign of working with or encouraging parents on a consistent basis.

Journey to Hear is a foundation that has been created by parents to improve facilities in Utah County. As parents we don't want to open a school for the deaf, we have tried to work with USDB and in return we have been placated and frustrated. It is ironic that the Utah Schools for the Deaf doesn’t listen. Money could be raised for new facilities but what would go inside? As USDB currently exists it would not be worth the energy needed to raise the millions of dollars for a facility, no matter how willing the parents are, if the facility would be turned over to such a disorganized organization.

I appreciate you taking the time to listen. I hope that soon things will change for the better for deaf children in Utah.

Sincerely,
Hailey Liechty

ICE CREAM SOCIAL!

The following is from Norm Paxton, president of A.G. Bell, Utah Chapter

Come enjoy, socialize, ask or answer questions, make connections, let the kids play, enjoy ice cream, and have fun!
This isn't just for families dealing with deafness - professionals (SLP's, teachers, audiologists, etc) are welcome to come as well.
-Norm Paxton

AGBell-Utah will be hosting two ice cream socials in September:

SLC: Thursday, Sept 11
Sugarhouse Park (Central Terrace)
2100 S 1300 E, SLC
6:00 - 7:30
Orem: Thursday, Sept 18
Cascade Park
950 E 200 N, Orem
6:00 - 7:30

All who are interested in supporting or investigating spoken language as an option for adults and children that are deaf or hard of hearing are welcome.

Please spread the word to anybody that may be interested (parents, families, professionals).
- If you are a therapist, audiologist, teacher, or other professional, please spread the news to all families you work with who may be interested in this.
- If you are the parent of a child who is deaf, certainly, you know other parents of children who are deaf, who are looking for resources, but may not have heard about this.

USDB Is in hot water in SLC as well...

WOW. Check out this blog:
http://utahdeafeducation.blogspot.com/

A Party at the Pool!
for Utah County Parents and Children
who are Deaf or Hard of Hearing

When: Saturday 2 August 2008
Where: Central Clubhouse at 2720 Edgewood, Provo
Time: 4:00-7:00 p.m.
RSVP: Esther (Miriam’s mom)
ilovefelting@gmail.com

• BBQ Beef & plates will be provided
If your last name starts with:
A-F: please bring vegetables or fruit (cut please)
G-L: bread/buns
M-R: drinks (water will be available)
S-Z : desserts
• Also: Bring Swimsuits, Towels & All Your Children!

[NOTE ADDRESS CORRECTION!]
This meeting was originally going to be held in June in Taylorsville.
The following is the NEW information.

PUBLIC INPUT SESSION
Utah State Office of Education
for the
Utah Schools for the Deaf and the Blind
28 July 2008, Monday
7:00 - 9:00 pm
Provo School District Office
Utah Professional Development Center
280 West 940 NORTH
Provo

• Parents are invited to present for 3 minutes about Legislative Recommendations
What are the "Legislative Recommendations"?
To read the Legislative Recommendations (11 pages printed)
go to: http://www.schools.utah.gov/sars/laws.htm
at the bottom of the page there is a link to a file
--> USDB Legislative Recommendations MS Word 2003 pdf, posted 6/3/2008 Public Input Sessions pdf, posted 6/23/08
go to: www. schools.utah.gov
go to: the special education link
go to: laws/policies
go to: the last article: USDB Legislative Recommendations

• If you would like to comment ahead of the meeting you can fax your information to Karl Wilson at 801.538.7991 or email him at karl.wilson@schools.utah.gov

• This information is from:
Christine Timothy
Utah State Office of Education
Education Specialist
Sensory and Significant Disabilities
(801)538-7576
christine.timothy@schools.utah.gov

http://www.deseretnews.com/article/1,5143,700242350,00.html
This link is to the Deseret News editorial IN SUPPORT of new facilities for USDB -- in SLC.

Let's work on frying TWO fish at the same time. Wouldn't that serve our children, in Utah county, sooner and for less expense?

On Tuesday I attended a rally to support new facilities for USDB (Utah Schools for the Deaf and Blind). I'm not really the rally type of person but this is an issue that I have worked on for years only to meet with ineptness and lack of vision or intesrest by USDB. This time this was organized by someone else. I wanted to support them. It was worth it. A mover and shaker dad/salesman (Chris Bijou) arranged a meeting with Governor Huntsman ans several members of his cabinet. I asked if I could go and represent Utah County. Several of the people had seen the Journey to Hear blog and thought I could contribute. I think I did, asking some good questions about how Charter schools are built so quickly, private funding/donations of buildings and also the unique pre-school need deaf children have.

Journey to Hear could raise all the money needed for a new facility get it built and then donate it to USDB? THEM?! Hmmmmm. That doesn't seem to be the right solution.

SOUND BEGINNINGS in Logan (USU) has speech therapy THREE (3!) times a week in the SUMMER. USDB, Utah County, isn't doing anything for deaf children this summer. ZERO. No one seems to "qualify." This seems borderline evil.

Right now we need to figure out hat our goal is. Esther and I are bouncing ideas back and forth. We welcome any ideas/comments.

Parent Meeting in the works for:
a Potluck at the Pool
Saturday
2 August 2008
4-7:00 p.m.
2720 Edgewood
Provo

http://www.nidcd.nih.gov/health/healthyhearing/

This is information about the government's Healthy Hearing Campaign. Here is what the intro paragraph says:
Healthy Hearing 2010 is dedicated to helping people improve and protect their hearing health. It is a part of a public health campaign called Healthy People 2010, a national health promotion and disease prevention initiative from the federal government. Its goals are to increase the quality and years of healthy life and eliminate health disparities. It challenges individuals, communities, and professionals—indeed, all of us—to take specific steps to ensure that good health, as well as long life, are enjoyed by all.

Nice to know someone is thinking about Deafness as part of health rather than solely a culture or choice.

TOP 10 Things for Parents to Do with Deaf Children:

1. Device on during ALL walking hours!
2. Create an opitmal listening environment
3. Talk to the ear and teach the brain
4. Narrate all day long
5. Model desired language-have them imitate you
6. Repetition of desired language (say it 3 times or more)
7. Expand their language level/Talk just above where they are
8. Auditory bombardment for desired speech sounds-"P-p-p-push"
9. Acoustic highlighting: Emphasize what you want them to attend to
10. Believe! Trust the process

In case you are reading this because you have time on your hands... here is one more letter to write: (this is from the AG Bell newsletter)

Movement on EHDI Act of 2007
Originally enacted in 2000, the Early Hearing Detection and Intervention (EHDI) Act provides funding for early hearing detection and intervention programs nationwide. The U.S. Congress is currently considering reauthorization of this landmark legislation. On Thursday, March 13, the House Energy and Commerce Committee passed the EHDI Act of 2007 (H.R. 1198). It will now go on the entire House of Representatives to be voted on sometime in the first two weeks of April. Email your member of Congress and urge them to vote for H.R. 1198! To find your member of Congress, click here.

Karl White asked some parents to write to the Public Education Appropriations Committee of the State Legislature. The following is my letter.

Dr. White is an incredibly accomplished person, especially in the field of early detection of hearing loss and education. This last fall he opened, with the help of some of the very best deaf educators in the country, a new school and training center for deaf educators in Logan. It is called Sound Beginnings. He wants to create a satellite school in Utah County. (I like to think that my not-so-subtle nudging has helped! Also Michelle A moved half of her family to Logan to participate in his program!) The Legislature approved the funding... stay tuned. I don't want to get down on USDB... but, how can we NOT get better facilities in Utah County? I'm curious to see what kind of snafoos or hang-ups, explanations they can come up with. These plus 25 year trailers have to go NOW.

Dear Legislator,

As a parent of 2 deaf children I’d like to add my voice to the chorus of parents and educators who support USU's request for an ongoing appropriation of $300,000 to support the expansion of superior early childhood deaf education throughout the state. I am especially concerned about the deaf children in Utah county, who attend school (USDB) in plus 20 year old trailers.

The current state of most deaf education in Utah, fractured and uninspired, is especially troubling because with modern technology these children can achieve so much more.

My son is 7 and is mainstreamed in a regular first grade class. This is the good news. The bad news is that the school’s speech therapist describes his speech problem as “severe.” The diagnostic evaluation at the University of Utah, where he is currently receiving speech therapy twice a week, marked his speech development at 4 years 9 months. His story is not unique. He could be completely at his age level if he had received the comprehensive aural rehabilitation and oral education that Sound Beginnings is now providing deaf children in Cache county.

I have traveled and seen other schools throughout the country, hoping to provide better services for my children . I have also met with the USDB administration and also the State of Utah’s DCFM in hopes of finding a solution in Utah County. I was overjoyed when I heard that Karl White was creating a program to teach the teachers of the deaf and also could take my then 3 year old daughter into that program. After trying every possible way to move our family of 7 to Logan, or have her stay with another mother during the school week I realized that we couldn’t take advantage of Sound Beginnings. The thought of her, and us, spending such a crucial time of her life so far away from her family broke my heart.

It is clear that Sound Beginnings is not only cutting edge deaf education but also motivated to help children with permanent hearing loss succeed as never before.

Please vote in favor of the funding request from Utah State University when it comes up before the legislature.

Thank you for listening.

Sincerely,

Hailey Meyer Liechty