Table Of Content

DOCUMENT RESUME EC 307 589 ED 436 915 Final Report. Arizona Deafblind Project, 1995-1999. TITLE Blind, Tucson. Arizona State School for the Deaf and INSTITUTION Washington, DC. Special Education Programs (ED/OSERS), SPONS AGENCY 1999-00-00 PUB DATE 41p. NOTE H025A50012 CONTRACT Reports - Descriptive (141) PUB TYPE MF01/PCO2 Plus Postage. EDRS PRICE Programs; *Deaf Blind; *Agency Cooperation; Cooperative DESCRIPTORS Identification; Elementary Delivery Systems; *Disability Involvement; *Family Programs; Secondary Education; Family Postsecondary Inservice Education; Needs Assessment; Assistance; Training Education; Public Relations; *Technical *Arizona; Usher Syndrome IDENTIFIERS ABSTRACT four-year accomplishments of the This final report describes (1) identify Project which attempted to: federally funded Arizona Deafblind (2) deliver technical assistance to all deafblind children in Arizona; service providers; and (4) (3) deliver technical assistance to families; with state and coordination, and collaboration enhance community oversight, accomplishments were the following: national organizations. Among specific Arizona about deafblindness and the increased awareness throughout Arizona identify statewide planning meetings to Deafblind Project; implemented two project's the membership and role of the needs and set priorities; expanded activities for early intervention, advisory committee; expanded training students; students; identified numerous new school age, and transition aged meet needs and develop strategies to utilized parents to determine family training parents and families; expanded those needs; expanded services for training; systematized and opportunities for parents; initiated Intervener Library activities; expanded the project Loan expanded technical assistance developed the information on deafblindness; and improved availability of Screening implementation of the Usher Syndrome project Web site; continued agencies; and with local, state, and national Project; expanded collaboration deafblindness. (DB) secured two specialists in that can he made Reproductions supplied by EDRS are the hest original document. from the Distributed by DynEDRS LL ROTT TES P),LOM armEmoz A N 10 2 -t-,6 Facnn Distributed by DynEDRS U S DEPARTMENT OF EDUCATION ecucerona efterc^ sle mtrowinest Cmce ARIZONA DEAFIBLIND PROJECT EDUCATIONAL RESOURCES INFORMATION CENTER !EPIC) This oocornent has been Fes:week/DA as reamed Irom the person or orgarozahon atqinating a FINAL REPORT 0 Mtn°, changes have been made to ongdove reprodattsan atratl 1995-1999 Points of we* Or opinions stated ol Mrs document do not necessarily represent official OERI posomn or POl'OY Executive Summary made on the Arizona Deafblind Project for the complete The purpose of this final report is to summarize progress will review goals of the Arizona 1995 through September 30th 1999. This report project period of October through accomplishments of the Project, describe activities Deafblind Project. provide background to understand and identify problems encountered in implementing the Project; which Project goals were accomplished, discuss for policy, practice asked that the report include implications how problems were addressed. In addition. OSEP has OSEP. and research, and provide recommendations to Some of its major in its service provision over the past four years. The Arizona Deafblind Project made great strides in this report. are highlighted below: accomplishments, which will be expanded upon further Major Accomplishments and related educational strategies throughout Arizona of deafblindness, its impact, - Increased awareness Project of services available through the Deafblind - Increased awareness Meetings to identify needs and set priorities of two Statewide Stakeholder Planning - Implementation needs and work toward solutions of subcommittees to develop strategies to meet - Development Project's advisory committee of membership and role of the AACDB. the - Expansion and transition aged students of training activities for early intervention, school age. - Expansion of numerous new students - Identification develop strategics to meet those needs of parents to determine family needs and - Utilization of services for parents and families - Expansion of training opportunities for parents - Expansion into and initiation of Intervener training - Investigation and expansion of technical assistance activities - Systematization of information on deafblindness of Project Loan Library and availability - Expansion Development of Project Web Site - Project implementation of Usher Syndrome Screening - Continued and national agencies of successful collaboration with local. state. - Expansion if for only part of the grant cycle Project Specialists trained in deafblindness, even - Securing two Description of the Project infants. toddlers, children. Project service delivery plan is that all The purpose underlying the Arizona Deafblind for their children: and statewide: families be empowered to advocate and youth who are deafblind he identified Project was. and continues to needs of these children. The Deafblind service providers be skilled in meeting the and the staff who work with dual sensory impairments. their families, be statewide in scope. serving students with with technical and local agencies to provide them Project staff work collaboratively with other state them. Page 1 of 25 JEST COPY AVAILABLE Distributed by DynEDRS agencies can provide comprehensive, quality services assistance. consultation. training, and information so these to individuals who are deafblind. four goals during the project period: The Arizona Deafblind Project focused on A. Identification of children who are deafblind. B. Delivery of technical assistance to families. C. Delivery of technical assistance to service providers. coordination, and collaboration with state and national D. Enhancement of community oversight, organizations. Context Within Which the Project Was Implemented the state major cities. two small cities, and the remainder of Arizona is a large state (114,000 square miles) with two 1) American Indian, 2) diverse cultural groups within the state: being either rural or remote. There are three very has quite different values and mores, particularly Hispanic, and 3) Anglo American. Each of these cultural groups of children family, and its role and responsibility within the life when it comes to the structure and function of the in a culturally appropriate manner, If cultural issues are not understood and then approached with disabilities. significant obstacles to service provision can be created. schools and fastest growing in the country. Many of the state's In addition, Arizona's population is one of the shortage growth. For a number of years there has been a communities are finding it difficult to keep up with this popular large the state, even in the two highly populated and of qualified special education teachers throughout teachers in professor, there are not now, nor have there been any cities. Other than Project staff and one university bridge between This leaves the Deafblind Project to be the the state trained specifically in the area of deafblindness. providers within the state. the issues of deafblindness, and the families and service For this the state of Arizona greatly value local autonomy. Furthermore, the communities and school districts in regardless of and agencies do not make use of outside assistance or resources, reason, many local school districts inroads into these staff. Developing relationships with, and making the positive impact it might have on students and might put the process back change of staff at the local. state, or Project level programs, comes at a slow rate. Any significantly. for awarded by OSEP to the Arizona State Schools Within this context. the Arizona Dcafblind Project grant was has the resources the recipient of this erant for over 20 years. and the Deaf and the Blind (ASDB). ASDB has been advantageous to The structure of the ASDB agency is through which to administer and assist the Project to grow. Phoenix of the award, ASDB had a Tucson campus. a the provision of services through the grant. At the time additional Coops have been with three Cooperatives (note that two campus, and the Statewide Services program of vision or ASDB Cooperative teachers certified in the areas added since the beginning of the project period). local school communities throughout the state. Most of the hearing provide services directly in schools within local staff and provide although some of the larger urban districts hire districts in the state subscribe to Coop services, their own services. of the Arizona Early the Interagency Coordinating Council In addition, ASDB is one of the five lead agencies on Page 2 of 25 16 Distributed by DynEDRS services to visually C services. As a lead agency, ASDB provides Intervention Program (AzEIP) to provide Part POP staff are toddlers through its Parent Outreach Program (POP). impaired and deaf/hard of hearing infants and birth to three year old impaired children since they see virtually every in an ideal position to identify dual sensory POP program and Project staff work closely with coordinators in the in the state with a single sensory impairment. identified, they children with combined vision and hearing impairments are its affiliate pre-school programs. When Deafblind Project. are routinely referred to the Services, has along with the addition of the Project to Statewide The sum total of all of these ASDB programs, reach most of the Deafblind Project. It has given staff of the Project a way to meant an increase in access for the Part C programs. pre-school vision and hearing impairments. either through children in the state with combined Cooperative programs located in local schools. programs, campus programs. or How Goals Of the Project Were Accomplish Project activities the four years of the grant through ongoing Significant progress was made on all goals during Continued input was needs identified as the Project:progressed. coupled with new activities developed to meet members. as well as service providers, and advisory committee received throughout the grant cycle from parents. when the Progress on grant activities was greatly increased through staff research into current effective practices. during the second half specialists and one halftime secretary, as it was Project was fully staffed with two deafblind and enabled Project full as opposed to half staff was significant. of the grant cycle. The difference in operating at opportunities to the state. actually offer new and more in-depth staff to do more than just tread water, but services. Individuals with actual staff also made a major Lill ference in The training and experience of said Project deafblindness. and to contribute the unique impact and needs of background in the field were able to understand the specifics of activities. New staff had only to learn about considerably to training and technical assistance did not have to acquire the and its strengths and weaknesses. They Arizona's service delivery systems, its politics, Specialists made deafblindness. Working as a team, the two Project extensive knowledge necessary to understand growth of deafblind services in Arizona. a dynamic impact on the Goals and Activities identification of Children who are Deafblind Goal A) within the state, and the resulting increased awareness of deafblindness Three circumstances lead to significantly First ASDB reorganized its outreach. dual sensory impairments. increase in identification of students with Subsequently, diagnostic single department called Statewide Services. cooperative, and deafblind services into a of Statewide Services, the Deafblind the department. As part of the network and low vision services were added to Second, for part of the by the teachers it was there to help. Project began to he recognized and understood more enabled staff to provide much more all of its positions filled, which project period, the Deafblind Project had the Deafblind the close long term relationship between comprehensive and timely services. Third, but not new, was services (POP). Project and the early childhood outreach Activities for Goal A Page 3 of 25 LEST COPYAVAILABLE Distributed by Pyomis Increase Numbers Public Awareness and Dissemination of Information to youth with dual sensory impairments, it was necessary to In order to identify more infants. toddlers, children, and through: community and service sectors. This was done expand the level of awareness of deafblindness throughout workshops, conferences, agencies, provision of awareness presentations (at university courses, meetings, inservice sessions, etc.) and workshops (Az AER. Az CEC, participation in poster sessions and display tables at conferences fairs, Parent Advisor Trainings. etc.) Az TASH, SEA Leadership Institute, transition development and distribution of new Project brochure development and distribution of Deafblind Descriptor Page publication of Project newsletters (two t per/year) creation and maintenance of Project Web Site brochures, workshop announcements, business development and use of Project logo on stationary. recognition cards, mailers, and newsletters to assist with name and distribution of brochures on projects and sharing information on state and national resources. including: agencies serving individuals who are deafblind, Perkins Program - Hilton NTAC - TAC and -NFADB - HKNC Outreach Program for the Deaf - Community - DB Link Services Administration - Rehabilitation (transition) - Inter Actt Arizona Outreach Program - Parent Intervention Program - AZ Early - ATTDB AACDB Increased numbers of students identified During the project children in Arizona was under-identified. Entering the grant cycle, the population of deafblind Arizona grew from 81 identified with dual sensory impairments in period of 1995-1999. the population of children through two year old population, but 62% increase occurred not only in the birth to 130 students. This significant due in large high school age levels. The growth of numbers was also in students of elementary, junior, and senior measure to the following activities. administrators and staff, early intervention providers. ASDB awareness presentations to AzEIP conferences, services staff, and participants at Special Education Directors, teachers, related workshops, and inservice sessions Outreach and collaboration with ASDB's Parent improved early identification through partnership in natural Program which provide family focused services Program and Arizona Early Intervention environments education agencies who serve the school age expanded partnerships with staff at local and state population DeaIblincl Registry and Annual Child Count completed an annual count children in Arizona identified as deufblind, and The Project maintained a registry of all following activities: made easier during the project period by the of these children. This annual activity was which goes to special education directors and simplified and streamlined child count mailer programs Page 4 of 25 BEST COPY 0 AVAILABLE Wstributed by EWSERS (included in the mailer) developed and distributed a brochure to explain the child count OSEP's changes in reporting developed and implemented a new data base system in response to tabulated based on queries instead categories (new data base allowed information to be electronically of hand tabulating it) coordinate and reconcile child count worked with staff from the Arizona Department of Education to data of follow-up doubled the response rate, thus lessened the number The results of using the new child count mailer information. phone calls Project staff had to make to get correct Usher Syndrome Identification project which grew significantly during the project period. The Statewide Usher Screening Program is a multi-phase had each building upon the ones before it. Variations It consisted of the implementation of several components, included: site initiating the program. Components to he considered for each agency and letters of explanation and notification to parents and staff distribution and collection of questionnaires to family student information and screening results (must he development of an Usher screening data base to sort compatible with each site's computer program) information, questionnaires, and family history records collection and categorization of audiological questionnaires. and family records entry to data base of audiogram type. Syndrome. characteristics, emotional and educational educational presentations to staff on types of Usher impact, and other critical information site or region development of local screening procedures specific to instruments recruitment and training of staff in each region on screening annual basis development of procedure to screen and update information on an year) Tucson campus this takes four days per school completion of annual Usher Screening (note: on the completed all cycle. Currently, the Tucson campus has Progress in all ASDB programs was made during the grant collected, and their phase: Phoenix has their studs l it information phases of the program. and is in the maintenance participated in an inservice the planning phase (administrators have data base set up: and the Cooperatives are in presentations on Usher of three Coops have received educational session and planning meeting. and staff Syndrome). in problem solving. with Dr. Sandra Davenport for her assistance In addition, the Usher Screening Committee met ophthalmologists and retinal presented on Usher Syndrome to During her consultation visit. Dr. Davenport educational video done with assistance from NTAC. The specialists from Tucson. Both of these activities were will he used for training staff of being edited for final production. and tape on Usher Syndrome is in the process throughout the state. Meetine Goal A: 1' Obstacles and Challettres Encountered in that totall deaf and totally blind. not understanding `luny local staff still think that deatblindness means difficult to identify ision and/or some hearing. This makes it more it can include children with some activities helped w ith this. but it is an ongoing children with dual sensor impairments. Public awareness children. iousl) been in 01% ed with deafblind issue of educating stall %% ho ha% en', pre% Page 5 of 25 21 13EST COPY AVAILABLE Distributed by zynEms is still under-identified. This gill become an According to statistics, the deafblind population in Arizona do o er the next four year population of the state doubles, which it expected to e\ en greater issue as the funding cycle. difficult to keep track of deafblind children when they Because state census numbers are local!) derived. it is the SEA. they would follow. the district. or out of state. If numbers were assigned at mows from district to has know where a child had moved (note that the SEA child around the state, and it would be much easier to districts the school district where they arc moving, and considered doing this). Often parents do not inform Typically though Project staff remind them to do so. don't think to notify the Project of a child's move, even that a student has moved. the Project doesn't find out until next child count December I Student the SEA staff responsible for Arizona's For the last three years of this grant cycle. made expectations of the SEA have changed. This has Census has changed. Therefore. each year. the Deathlind Child Count difficult. coordination with the SEA and reconciliation of the system. school districts, each with their own organizational Ariiona has elementary. secondary. and unified 13). that secondary district within same town falter child is When a student mo% es from an elementary to a recognize a dual identifying sensory disabilities. thus the may not district may have different standards for child is totally deal and totally blind. sensor> impairment unless the dcafhlindness and the grant c)cic in educating local staff about E% en though great strides were made doting People are unable public awareness continued to he an obstacle. the services a ai table through the Project, staff. growth of the population know what deafblindness is. Turnover of to identify children if they don't all contributed to this hiring untrained staff to fill critical vacancies. and teachers to work with them, and problem. Delivery of Technical Assistance to Families B) Goal of services in a coordinated, available to families a comprehensive array The intention of the Project was to make services in a parent cycle, staff made every attempt to provide family centered manner. Throughout the grant and home visits native languages, interpreters were provided. friendly manner, eg., information was translated to the staff felt that families under-utilized when families were available. Because were made during evening hours period. In order to help examined carefully during the project services of the Deafblind Project, this area was delineated below, were available to them. many new strategics, Arizona families understand what services were identified and tried. Activities for Goal B of Information and Dissemination Technical Assistance and technical assistance was families were responded to in a timely manner, As in the past. all requests from assistance was publicized in evident. The availability of technical provided upon request or as a need became workshops and conferences. Parents phone calls and meetings. and at mailings. newsletters. on the web page. in conducted, or to obtain resource conference, have a person centered plan who received services, whether to attend a newsletters so other of their experience to include in Project information, were asked to write a brief description Page G of 25 BEST COPY AVAILABLE _,EST COPY 22 AVAILABLE Distributed by DynEDRS distributed in available. Technical Assistance Request Forms were parents could see the wide variety of assistance Parents routinely received all and were available on the web site and at conferences. some issues of the newsletter, and including such items as newsletters, workshop announcements, mailings that went out to teachers and agencies, them methods of making parents aware of and encouraging legislative alerts. When all was said and done, these help in any way. impact on the numbers of families who requested to solicit assistance had a nominal Parent Input to Help Serve Families Project staff and use of Project services by families. Therefore, Project staff were frustrated at the lack of awareness Western Region them. Staff invited a parent to attend a decided to ask parents themselves how to best serve A wide array of TRACES, the focus of which was family services. Deafblind Project meeting, sponsored by which several projects discussed at the meeting. One successful strategy activities to meet the needs of families was staff on deafblind projects. were using was to hire parents as it A as deafblind specialist for the first two years of the grant, Because the Arizona Deafblind Project was short one hired was the Parent Liaison on a consultative basis. The parent decided to use some of the vacancy saving to hire a after the Project used primarily for the 14-21 age group. Later on, mother of a transition aged student, thus she was basis to hire a second obtained to use vacancy savings on a carry-over went through a Site Review, permission was services to child. The idea was to use her to help provide Parent Liaison. who was the mother of a very young children. families of early intervention and school age Parent-to-Parent NetworkinR families was parent-to-parent the country to provide appropriate services to A second method being used around faced with. other parents who had been through what they were networking, which enabled parents to talk directly to professionals couldn't. having a child with a disability that most Understandably, parents could relate to issues about might be facilitated in through which parent-to-parent networking To investigate the viability of, and means Specialist: Arizona, the Parent Liaison and Deafblind in Arizona) (which received federal parent education monies met with Pilot Parent agencies project services explained about deafblindness. its impact. and Pilot Parents services through collaboration with through made agreement to offer parent-to-parent and their existing network system Pilot Parents for their loan libraries provided resource information on deafblindness to Registry to determine of all students on the state Deafblind sent return postcard mailer to parents their interest in participating in the network in a parent-to-parent three parents were interested in participating The results of the survey were that only two or why. Many factors could information, and were unsure of the exact reasons network. Staff were surprised by this misunderstanding of who would parents. lack of disposable time, have contributed, such as existing demands on within the state. Because of these results. other parents. or the diverse cultural groups pay for phone calls to talk to It has not been dropped. but will pursued with the energy initially anticipated. the parent-to-parent activity was not cycle. Liaisons begin working together in the new grant he investigated again as the Parent Parent Grotto Development (TUD). the Community its Traditionally Under-Served Deaf grant Through its HKNC Affiliate program and and subsequently supported (COPD) sponsored parent focus groups, Outreach Program for the Deaf in Tucson Page 7 of 25 BEST COPY AVAILABLE 23 Distributed by DynEDRS form a group for parents of deafblind parents to reach their objectives. One of the identified objectives was to of a statewide parent group, individuals. The Deafblind Project collaborated with CORD to support the development agencies: which named itself the Statewide Parent Connection. Together, these two encouraged parents to take leadership roles interested assisted the group in developing a return postcard mailer to ascertain which parents were in having a parent group, and in what capacity they wanted to participate soliciting their budgetary assisted the group to write a proposal to the Hilton Perkins Project assistance (for brochures, mailings, phones. etc.) in (from successful parent obtained technical assistance from HKNC-TAC to bring a parent speaker group to share techniques and inspiration) and route them to the helped identify two parents willing to take phone calls at home for the group. in Phoenix. the other was appropriate parents (one was the Project Parent Liaison who was located the parent of an adult who was located in Tucson) bills for parent group business procured a method within their agencies to reimburse parents' phone Little by little however. parents stopped coming to At first the parent group seemed active and enthusiastic. consisted almost solely of parents of young adults meetings, and ultimately the group dissolved. At first, the group spread the benefits of parent group membership. from the Tucson area. In order to make the group larger, and offered the opportunity to join. Whether this diluted parents of students from birth - 22 throughout the state were and cultural needs: or it simply could not the focus of the group: it became too diverse in age. geographic area. situations of the parents in leadership positions sustain itself is unknown. What is known is that the needs and of parents of single sensory impaired changed significantly during this time. Additionally, much larger groups in Arizona. students have been unsuccessful in maintaining themselves . Familv Sen.ice Subcommittee in services throughout the states were identified and During the first Statewide Stakeholder Planning Meeting, gaps and family services. These two issues were prioritized. Two of the highest priority areas both related to parent Services was formed. This In direct response to this need, a subcommittee for Family collapsed into one. include having the Project Liaisons co-chair the subcommittee has only met a few times. but plans for the future develop a long range plan to guide services to committee. recruit members to serve, determine objectives, and of the subcommittee. Short term action plans and parent feedback will help determine progress families. Information Packet identification of their child as dcafblind. In order to provide more comprehensive information to parents upon of newly identified students. This packet included: Project staff developed an information packet to send to parents questions and of information form, a deafblind descriptor page. common an introductory letter. a parent release through it. a Project the Deafblind Project and the services available answers about deafblindness. information on brochure, and a form for requesting technical assistance. modifications to the letters and packet. A The next step will he to have the Parent Liaisons review and suggest work on documents and other projects via the computer. parent list serve will be started so that they can Parent Adrocaev Tallith's; advocacy training through Minnesota's "Partnerships The Pilot Parent organization initiated plans to offer parent Page 8 of 25 8EST COPYAVAfLABLE 24 Distributed by DynEDRS