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BUILDING EFFECTIVE PROGRAMS

The 2000-2001 school year has been an active yearfor the Oregon Deafblind Project. As you are “windingdown” on the 2000-2001 school year, please rememberthat the Oregon Deafblind Project continues support andtechnical assistance during the summer months. Please letus know of your requests for support.

I’d like to introduce the members of our AdvisoryCouncil for the 2000-2003 grant period. The Council,represented by parents, consumers, and professionalsacross the state, assists in promoting all project activities,and provides input into ongoing development and refine-ment of services we offer offered. The Council will bemeeting at least twice each year, with on-going contactmaintained via e-mail and phone. We value our AdvisoryCouncil, and look forward to our continued work together.

The Oregon Deafblind Advisory Council includes:� Shaunie Schmoll, Parent� Wendy White, Parent� Dennis Crepeaux, Oregon Commission for

the Blind� Lynn Lansdon, Lane Regional Program� Carol Greer, Mid-Oregon Regional Services

� Tambra Slack, Northwest Regional ESD� Carol Knobbe, Lane Regional Program� JoAnne Robison, Adult Representative� Marilyn Gense, Oregon Department of

Education� Jay Gense, Oregon Department of Education� Sylvia Carnes, Western Oregon University

My personal thanks are extended to all AdvisoryCouncil members for their work and insights!

This issue of the Oregon Deafblind Project Newsletter focuses on the subject of transition. We are specificallyaddressing the transition from school to adult services. It takes planning and perseverance to implement a successfultransition. Three of our articles relate directly to this subject. There is also a flyer with information about the OregonDepartment of Education’s Summer Institute. As part of the Summer Institute, the Oregon Deafblind Project is sponsor-ing a course on “transition” for students who are deafblind. Please refer to the flyer for additional information.

I believe you will find this issue provides excellent information on various aspects of the transition process. Thearticles by Jamie McNamara and Lorraine Wales appeared in other newsletters and are being printed with their permis-sion. Jamie has written an article on The American Association for the Deaf-Blind. She discusses the purpose andfunction of AADB and describes how such an organization can fill a need in the life of a person with deafblindness.“Planning for the Future: Ensuring a Successful Transition” is written by Lorraine Wales who is a parent. Although thetransition of her son took place in another state with different adult services, the process and planning that went into thissuccessful transition serves as an excellent model for everyone. The family is the most effective member of the teamwhen it comes to planning a quality of life transition. Finding out how she worked with other team members in thisprocess can provide us useful information about the role we have in this most important transition. Our third articlecomes from conversations with Andria Ferree and her mother, Sharee Zellar. Andria graduated from high school last year.Andria reflects on her high school experiences and her life as a student at Chemeketa Community College in Salem.

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Jay Gense, Project Director • Sylvia Carnes, State Deafblind Specialist/Editor • Summer 2001

�������������������American Association of the Deaf-Blind (AADB)

By Jamie McNamara

American Association of the Deaf-Blind (AADB) is a national con-sumer organization of, for, and by deaf-blind Americans. It currently hasa total of 600 members, of which 350 are deaf-blind. It has a Home Officeand is governed by a Board of Directors, the majority of whom are deaf-blind leaders.

The biggest activity AADB does is plan and sponsor national conferences for deaf-blind peoplefrom across the USA. The national conferences are a place for deaf-blind people from all walks of life to come togetherfor support, education, fun, and socialization. First-timers to the conference have been enthralled to find there are hun-dreds of people like themselves and they feel less alone as they adjust to life with deaf-blindness. I know because I amone of them! I attended my first AADB conference in ’94 in North Carolina and fell in love with AADB.

We just had our 25th national conference in Columbus, Ohio last August with a record 1,000 people, 300 deaf-blind,attending! Since Michigan is the northern neighbor of Ohio, there was quite a large entourage of deaf-blind Michigandersand their SSPs there. That made me proud because I am a native of Michigan myself. Our next conference will be inCalifornia in July, 2003. The exact dates and location will be announced later.

AADB has had teen programs during its national conferences in the past. At the most recent conference in Ohio,there was a seminar for teens who are deaf-blind which was sponsored by the National Technical Assistance Consortiumfor Deaf-Blind Children and Youth (NTAC). The major focus of this seminar was learning about self-determination.Fourteen teens, their mentors, and state deaf-blind project staff from ten states attended. The teens really enjoyed them-selves, especially meeting other teens and adults who are deaf-blind like themselves.

AADB also offers its members a quarterly publication called THE DEAF-BLIND AMERICAN, this is a magazinethat publishes articles of interest to deaf-blind people. Regular columns in this magazine include, Deaf-Blind PeopleCan…, Technology News, Conference Corner, Deaf-Blind Teen Corner, Recreation/Athletics, AADB Happenings, TravelNews, Coping, Legislation News, Resources, and Light Stuff, to name a few. The magazine is available in large print,Braille, and on disk.

Recently AADB was awarded $25,000 by DB-LINK to set up a mentoring pilot project. The goal of this mentoringpilot project is to train a small number of deaf-blind adults to be mentors to deaf-blind youth from their state, and thenhave these mentors train other potential deaf-blind mentors in their state. This is a collaborative project with state deaf-blind projects and deaf-blind organizations. A handbook based on the experiences of this project will be developed at theend of four years and disseminated by DB-LINK.

If you would like to get information on future AADB conferences and be in the loop on what’s happening in thenational deaf-blind community, you are encouraged to join AADB. Membership dues are $15 a year. For more informa-tion or to get a membership form, please contact:

AADB Home Office Phone: (301) 588-6545 (TTY) 814 Thayer Ave., Suite 302 E-Mail: aadb@erols.com Silver Spring, MD 20910I am available to answer any questions about AADB and can be reached at: 102070.3546@compuserve.com

� ������������������������������������������� �����������By Lorraine Wales (parent)

Michael is now 26 years old (imagine). He transitioned into Adult Living at the age of 21. I started working on thisprocess, actually very early. I met with folks from the department of Mental Retardation (DMR) before Michael was ateenager. They told me I was too early, but I wanted them to know Michael was coming along. I invited DMR to all ofMichael’s Individualized Education Plans (IEPs)—they showed up. I have been connected with the New England CenterDeafblind Project—since I don’t know when. They provided Orientation & Mobility training, attended IEPs, and madevisits to Michael’s programs.

When Michael was between the ages of 14 to 15, I met Susan DeCaluwe, who again offered training, support andinvaluable resources. Around age 18, Mara Evans, a former NEC consultant, started going around to Adult Programswith me, checking and rechecking. I would encourage families to invite as many resources as then can to IEPs(i.e…Department of Mental Retardation, Massachusetts Commission for the Blind, New England Center Deafblind

Project, your son or daughter’s physical therapist, occupational therapist, or related specialists). An important thing Ilearned, was to be cautious during the transition from school to adult services (688 process). My school system was onlyaware of one agency signing on as the Lead Agency, and that was DMR. I was unaware that this was the time to get theMassachusetts Commission for the Blind (Deafblind Unit) to sign on as the lead agency and consequently DMR waschosen. This issue did get resolved with a great deal of help. MCB provided me with one of their Orientation & Mobilitystaff, who knew the day programs out there and we went to see them, spent time observing these programs, talked withpeople, and shared ideas. Michael and I were blessed with a bounty of insightful and dedicated advocates/helpers on oursearch. And we succeeded!

I started visiting Michael’s options early and often. This endeavor proved to be exciting and sometimes difficult anddisappointing. However, it’s crucial. So—keep looking, listening, asking questions, and visiting programs during the day,evening, and weekends…Go to each day program that is proposed, spend some time there, look at other participants, andwhat they are doing. Get a feel for staff and administration. Ask other parents, ask to sit in on a parent group, and ask ifthere are parent groups.

So—here’s my advice:1. START EARLY, prior to the age of 14.2. BE DILIGENT, record all conversations and request all correspondence in writing.3. Write down what your dreams/wishes are. We developed what would be a “PERFECT DAY” for Michael and

presented it to the agency we were considering and asked them if and how they would implement it.4. You don’t have to take NO for an answer. If you experience ongoing problems and if you can afford it, hire an

advocate.Overall, the transition process was probably the most worthwhile process I’ve ever been through. It will be worth all

your efforts. My son has such a good life! He lives in Plymouth, with 3 other adults who are deafblind, and a wonderfulstaff around him. The agency that provides for him through MCB, Deaf/Blind unit has been great! Michael has experi-enced so many incredible people and places. There isn’t a day that goes by, that I’m not grateful to all the people whohelped us. Every time I hear about how well Michael’s days are and about the things he’s done and places he’s gone, I’mgrateful I went through this process. It was worth every minute of it. I can now say the words we all want to say, “Myson has a wonderful life”.

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Andria Ferree joined the ranks of the adult world last June when she gradu-ated from high school. She is now attending Chemeketa Community College inSalem. We spoke to Andria and her mother Sharee Zellar on the transitionprocess. When asked what was the most helpful assistance they received duringthe transition years, both agreed it was the support of the Deafblind ConsultingTeacher and the Commission for the Blind Counselor. The relationship withthese professionals provided support, guidance and friendship.

The Oregon Commission for the Blind developed summer work programsfor Andria from the time she was 16 years old. These jobs allowed Andria theopportunity to discover types of jobs she might like to pursue as an adult. Shealso learned the kinds of jobs she would not want to do. This is also an impor-tant piece of information to know.

The Oregon Deafblind Project helped support Andria’s attendance at AADBtwice. In both instances, she participated in the Teen Leaders seminar. Andriaenjoyed the experience. The environment provided an opportunity for socializa-tion with peers dealing with the same issues as Andria. Her mother states thatAndria returned a more mature young woman after each conference.

When Andria was asked if she had any advice to give, she encouraged others to work hard in school. She realizeshow important good reading and writing skills are. She wishes she had worked harder on these subjects. Andriarecommends going to college. She believes you do not have the skills you need to get a good job when you get out ofhigh school. She is on the track team and enjoys the competition.

Andria wants to work full time this summer and continue attending Chemeketa Community College for two moreyears. After that she wants to transfer to the National Technical Institute for the Deaf in Rochester, NY. Good luck,Andria! Thanks for sharing your ideas and opinions with us.

��������� �!�"• On April 9, 2001 Dr. J.P. Lowery presented a workshop entitled “Functional Vision Assessment and Develop-

mental Strategies for Students with Multiple Disabilities”, delivered statewide via the V-Tel network. V-Tel is astatewide video-broadcast system; the medium allows a greater level of participation because individuals don’thave to travel far to “tune-in”, and allows live two-way audio and video broadcast. The Deafblind Project wantedto explore the use of this medium for statewide training.

Dr. Lowery’s knowledge in this field makes him a great presenter on this subject, and a great “first-attempt” inusing the V-Tel system. The workshop was broadcast to 8 different locations across the state. There were someminor “technology glitches” and problems that need to be addressed before another presentation; however, thisformat for training was very well received. The southern and eastern regions especially appreciated this method.Many more people were able to participate, and the cost was free. We will do more of this in the future-using theknowledge from our first experience to make it better. Thank you, Dr. Lowery, for your interesting, practicalpresentation.

• …a note from Sylvia…

“I just returned from a conference sponsored by NTAC on the subject of Assessment and Intervention forCortical Visual Impairments and Auditory Processing Disorders. It was a wonderful conference with excellentinformation. Please contact me if you would like information on this topic.

FEEDBACK/RESPONSE CARDThis edition of “Building Effective Programs” was:

( ) very useful ( ) somewhat useful ( ) not useful.I would like to see the following topics addressed in future editions: __________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

❏ Please add me to the mailing list:

Name____________________________________________________________________________________

Address __________________________________________________________________________________

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E-mail: ________________________________________ Phone: _________________________________

Fill out, photocopy and send to: Sylvia CarnesOregon Deafblind Project345 North Monmouth Avenue Monmouth, OR 97361

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This course is designed to assist teams working with middle and high school aged students who are deafblind and/ormulti-sensory impaired. The focus of this 3-day workshop will be on defining the outcomes that address the student’spreferences, interests, and capabilities, and designing the strategies within the IEP to achieve those outcomes. The targetaudience includes the IEP Team, collectively or individually, including: 1) the student and/or a family member; 2) schoolrepresentatives, including classroom teachers, responsible for transition planning; 3) adult service representatives, such asthe student’s Developmental Disabilities case-manager; and, 4) regional program specialists. Areas such as person-centered planning, incorporating transition into the IEP, employment opportunities, housing options, and funding for adultservices will be covered. Teams will be allowed ample opportunity to work together to apply information.

To register for this course, use either method described below:1. via the internet; register online at:

http://www.ode.state.or.us/events/login.htmOR2. via mail: register “traditionally” using the registration form in the Summer Institute brochure. You can

receive a brochure by contacting:Debbie KenyonTeaching Research DivisionWestern Oregon University503-838-8293e-mail: kenyond@wou.edu

The Oregon Deafblind Project will be award-ing a limited number of scholarships for participa-tion in this course; these funds can be used tosupport travel and tuition costs. Anyone interestedin scholarship funding can contact:

Sylvia Carnes, Oregon Deafblind ProjectTeaching Research99 West 10thSuite 370Eugene, OR 97401CALL: 541-346-0589 for more information

����#�� ����������������$ ��%����&����'�� �Our grant is the blueprint that drives the activities and training that the Oregon Deafblind Project provides. This

newsletter is addressing goal 4: All Oregon students age 14 and older who are deafblind will have transition plans thataddress post-school life options, including living skills, leisure skills, community participation and employment options.

• Collaboration with the transition effective practice site in the Eastern Oregon Regional Program to assist indeveloping and disseminating training modules, materials, and effective transition practices to other regions.

• Coordination with the Oregon Commission for the Blind in developing person-centered transition plans for allstudents age 14 years and older.

The Oregon Deafblind Project and the Oregon Commission for the Blind have developed a tool called the “TransitionMatrix” that provides suggested objectives in a variety of domains. This matrix can help IEP Teams prepare the studentfor the transition into adult services. It is a document that can be changed to fit the particular needs of a student, but itserves as a guideline for both families and professionals. The Commission and the Oregon Deafblind Project have used itin transition meetings. Many people have found it very helpful.

If you would like a copy of the Matrix, please e-mail or write:

Sylvia CarnesState Technical Assistance SpecialistOregon Deafblind Project99 W. 10th Ave., Suite 370Eugene, OR. 97405carness@wou.edu

The Oregon Deafblind Project is funded in part through grant #HO25A950013-98, U.S. Department of Education, Office of Speical Education.

Oregon Deafblind ProjectOregon Department of EducationDepartment of Special Education255 Capitol Street NESalem, OR 97310-0203JR69