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9Volume 2, Issue 1

Please submit comments or news items to ucedd@email.arizona.edu.Please submit comments or news items to ucedd@email.arizona.edu.

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Dear Friends & Colleagues 1

pa

ge

New UCEDD Interdisciplinary Training Program

1

look who’s new! UCEDD Staff 2

Region IX Autism Summit 3

SLA Conference 3

Project SEARCH ‘Pilot’ at UPH 4

meet our trainees! 5

The DD Network 6

Dear Friends and Colleagues,

This has been a challenging year for individuals with develop-mental disabilities (DD) and their families. The economic downturn and Arizona budget crisis has meant a threatened reduction in crucial disability related services for some and the loss of health insurance, school related programs, or employment for others. Everyone is con-cerned about the future uncertainty of disability related supports in our state and what that will mean to individuals, families, and com-munities. The Sonoran UCEDD is working to respond to community expressed needs through a variety of programs and initiatives. These efforts are described on the following pages and we’d like to highlight a few:

▪ Bringing the innovative employment program Project SEARCH to Ari-zona, thereby increasing access to competitive employment for individuals with developmental disabilities.

▪ Expanding our medical home for adults with DD to provide our pa-tients with a developmental disability skilled and coordinated care, with assistance from the UCEDD social worker in navigat-ing service systems and developing information and resources for the patient.

▪ Partnering with the other DD Network agencies to ensure disability groups and organizations in Arizona have access to information and a coordinated response to budget cuts.

▪ Promoting a thoughtful planning process for youth with DD as they transition to adult living through our Southern Arizona Person Centered Planning Program, emphasizing the value in utilizing community supports for youth as they embark on this journey.

▪ Collaborating with communities along the Arizona-Mexico Border to create low cost assistive technology options for communities that have limited resources.

These efforts along with other initiatives undertaken by individ-uals and organizations across the state ensure that Arizonans with disabilities have somewhere to turn in these trying times. We appreciate your support and look forward to working with you in these and other promising areas to strengthen our shared commitment to ensure that people with developmental dis-abilities are included as full and valued members in our communities.

Best wishes,

Leslie Cohen, JDDirector, Sonoran UCEDD

Tamsen Bassford, MDPrincipal Investigator, Sonoran UCEDD

Please submit comments or news items to ucedd@email.arizona.edu.

A quarterly newsletter of the Sonoran University Center of Excellence in Developmental Disabilities

in this issue

New UCEDD Interdisciplinary Training Program

This year saw the development and implementation of the Sonoran UCEDD Interdisciplinary Training Program. The program launched on January 15, 2009, with a first cohort of five trainees represent-ing the following disciplines: family stud-ies, rehabilitation, public health, medicine, and information and library sciences. The program’s core curriculum – composed of didactic, clinical, leadership, and research components – is designed to provide mul-tiple opportunities for trainees to engage in learning activities that present issues they will face in practice such as account-ability, outcome-based approaches, family/person-centered models, collaboration, and interdisciplinary decision-making. Vari-ous training components complement each trainee’s discipline and level of knowledge and skill.

The fundamental objective of the pro-gram is to prepare students from a variety

(continued on page 4)

We are very pleased to have several new Sonoran UCEDD staff starting in July.

Paul McLaughlin has joined our administrative staff as a program aide. In this position, Paul provides necessary assistance to our program staff in preparing packets for training; responding to requests and inquiries; and performing clerical duties. His previous job was at Home Town Buffet where he got dining tables ready for customers and assembled holiday promotional materials. Paul says that he is excited to join the UCEDD staff. In his spare time, he enjoys putting puzzles together, bowling with Wii, painting, and hanging out with his friends. Paul is also known for his talent and love for grilling.

Laura Henry Feld, MSW, MPA, is our new Southern Arizona Person Centered Planning Program Coordinator. Laura has a wealth of experience in the disability field and in program coordination. Most recently, she was Special Projects Administrator at Arizona Department of Health Services. She has also worked with individuals with developmental disabilities in the Medical Home Project of the Office of Children with Special Health Care Needs as well as working with a DD provider agency. Laura takes over for Kristie Melkers who recently left the coordinator position to return to the nursing profession. We are certain that Laura will be able to build on the work Kristie had started to ensure families in Southern Arizona have the tools they need to plan for their young adult’s future.

Alberto Guzman, PhD, has joined the Sonoran UCEDD as a post-doctoral researcher serving in two important capacities. He coordinates the Sonoran UCEDD Interdisciplin-ary Training Program (see cover story) and assists in UCEDD research activities including the Aging and Transitions Project for older caregivers and persons with developmental disabilities. Alberto recently obtained his PhD in Disability Studies from the University of Illinois, Chicago, and is interested in the nexus of Disability Studies and disability service provision in postsecondary education. His doctoral work explored the percep-tions held by postsecondary education disability service providers on the implementa-tion of program standards delineated as best practices. A manuscript of this work is being reviewed for a special issue of the Association of Higher Education and Disability (AHEAD) slated for publication later this year.

As a university based community-oriented organization ensuring that equal opportunities and a quality of life are accessible to all persons with developmental disabilities, we rely on the gen-erosity of supporters like you to help further our mission.

If you would like to learn more about making a tax-deductible gift to the University of Arizona Foundation to benefit the Sonoran UCEDD, please contact Leslie Cohen (520-626-0080; ljcohen@email.arizona.edu).

Thank you for considering the Sonoran UCEDD an organization worthy of your support.

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look who’s new !

Region IX Autism Summit

The Act Early Region IX Autism Summit took place in Sacramento, CA, June 8 -9, 2009. Les-lie Cohen, Sonoran UCEDD Director, coordinated the Arizona teams efforts. Those participating in the summit from Arizona included representatives from the AZ Early Intervention Program (AzEIP); American Academy of Pedi-atrics AZ Chapter (AzAAP); both Uni-versity Centers for Excellence (Sonoran UCEDD and AzUCED at NAU/IHD); AZ Department of Health Services, Office of Children with Special Health Care Needs (OCSHCN); Southwest Au-tism Research & Resource Center (SAR-RC); AZ Governor’s Council on Devel-opmental Disabilities (GCDD); AZ Health Care Cost Containment System (AHCCCS); AZ Department of Educa-tion (ADE); and Southwest Human De-velopment (representing Head Start).

During the course of the summit we had the opportunity to meet with colleagues working in the field of au-tism from other states and to share experiences, promising practices, and

resources. We heard presentations from national experts from the Learn the Signs: Act Early cam-paign and Combating Autism Act Initiatives as well as informa-tion from data col-lected nationally on early identification and screening for autism disorders.

The AZ team was particularly concerned that our state had the high-est median age of identification of au-tism of any of the 10 states taking part in a national surveillance study (2002 Autism and Developmental Disabili-ties Monitoring (ADDM) Network). We met as a team over the two days to dis-cuss what needs to happen in Arizona to truly address the early identification and screening and treatment issues. As a result of our discussions, the AZ Au-tism Summit Team has agreed to con-tinue to work together to increase pub-lic awareness of autism and screening

in AZ and to bring other stakeholders together to address these important is-sues.

More information on the sum-mit, including links to all presenta-tions can be found at http://www.aucd.org/template/event.cfm?event_id=1758&id=379&parent=379. To learn about the Learn the Signs: Act Early cam-paign, go to http://www.cdc.gov/ncb-ddd/actearly/index.html.

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Staff/Trainee Jacy Bell Participates in Special Libraries Associations Conference

As a UCEDD trainee this past spring, I have been working on various projects exploring information accessibility and library services for individuals with disabilities. Summarizing my efforts, I created a poster entitled, Information Accessibility & the Disability Community, that highlights the barriers to accessing information in both virtual and physical environments for the purpose of informing librarians of their role and responsibility in alleviating such barriers.

On June 14th, 2009, I had a unique opportunity to share my work with current and future information and library professionals at the Special Libraries Association (SLA) Annual Conference, Inspiration and Diversity – SLA Around the Globe held in Washington, DC. I participated in the poster session and open house for SLA’s Social Science; Museum, Arts, & Humanities; and Education Divisions. Attendees voted on their choice for the best poster with the winning poster’s author receiving a one-year SLA

membership. Unfortunately, I didn’t win but was first runner up — exciting considering this was my first poster!

I had a great time at the conference and would like to thank the Sonoran UCEDD for supporting my participation.

To view my poster, please visit http://sonoranucedd.fcm.arizona.edu/resources/Information_Accessibility_Poster_SLA09.ppt.

AZ Team at the Autism Summit: Front row (left to right): Lourdes Mendes, GCDD; Kim Elliot, PhD, CPHQ, AHCCCS; Jan Cawthorne, ADE; Karen Nelson Hunter, AzEIP; Kristina Almus, OCSHCN. Back Row (left to right): Trudi Norman-Murch, PhD, CCC-SLP, Southwest Human Development; Sydney Rice, MD, AzAAP and UA Dept. of Pediatrics; Andrew Gardner, PhD, AzUCED at NAU/IHD; Leslie Cohen, JD, Sonoran UCEDD; Daniel Openden, PhD, BCBA, SARRC; Katy Beggs, MA, AUCD Facilitator.

of disciplines to become leaders and advocates in the disability field with an understanding and appreciation of the

principles of self-determination and meaningful community inclusion for all people with disabilities. According-ly, each trainee is assigned both a facul-ty member and Community Advisory Council (CAC) mentor with whom to work during their training experience.

For the complete list of topics and presenters, go to http://sonoranucedd.f c m . a r i z o n a . e d u / r e s o u r c e s /SeminarTopics_Spring20091.pdf and for more information about the program, please visit our website at

http://sonoranucedd.fcm.arizona.edu/traineeprogram.cfm.

While some of our trainees will continue in the program (see Meet Our Trainees! next page), we are currently seeking new trainees for the Fall of 2009. Undergraduate, graduate and doctoral level students are eligible to apply.

(Interdisciplinary Training Program — continued from page 1)

If you are interested in participating in the program or would like to recommend a candidate, please contact Alberto Guzman at albertog@email.arizona.edu.

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Project SEARCH Arizona Initiative – Pilot at University Physicians Hospital in August 2009

The UCEDD and its partners have been hard at work since the spring of last year to bring Project SEARCH to Arizona. Project SEARCH, a nationally recognized competitive employment training program for youth/young adults with a developmental disability, began at Cincinnati Children’s Hospital Medical Center (www.cincinnatichildrens.org/svc/alpha/p/search) in 1998 and has since been replicated in more than forty states across the US and in other countries. The cornerstone of the program is total immersion in a large business in which participants engage in 3-4 intern rotations in various departments within the chosen business site, gaining real-life work experience while learning employability and independent living skills. The anticipated outcome upon program completion is for interns to obtain competitive employment in non-traditional jobs, either at the host business or in the community.

In March 2009, after months of working through

program logistics with Project SEARCH consultants and developing partnerships, the AZ initiative brought Project SEARCH cofounder Erin Riehle to Tucson to present the model to potential host businesses and the community. The initial plan was to start with a transition program for high school students in their final year of school. Partners are moving forward in planning the high school program likely to begin in August 2010. However, University Physicians Hospital (UPH), eager to participate in this innovative program, has signed on to host a small pilot with young adults that will begin in August of this year.

We are extremely fortunate and pleased to partner with UPH in the pilot that represents the first of many anticipated successes in replicating the Project SEARCH model in Tucson and across the state.

For information about the AZ initiative, please visit our website at http://projectsearch.sonoranucedd.fcm.arizona.edu. June 10th information session with prospective

Project SEARCH interns and their families

Project | SEARCH

projectsearch.sonoranucedd.fcm.arizona.edu

Arizona

University Physicians Hospital

Spring 2009 Biweekly Seminar Topics (partial list) ▇

▇ Political, Social, Medical & HistoricalContext of Disability

▇ Disability Services and Supports▇ Disability Civil Rights Laws▇ Family and Self-advocate Experience

* Seminars serve as the program’s didactic component.

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I coordinate data and provide administrative support to the Sonoran UCEDD. My career plans have changed since I began pursuing my Master in Library Science. With a BA in Classics, I am interested in Special Collections, Museums, and Archives. However, I have increasingly pondered a career path involving the disability field.

As a trainee, I am working on several projects related to library services and information acces-sibility for the disability community. These include conducting literary research on library ser-vices available to individuals with disabilities, coordinating an interdisciplinary panel discussion on information accessibility and the disability community, and applying for research grants to 1) conduct an assessment of policies/procedures of public libraries in relation to disability services and accommodations and 2) to gauge user satisfaction, needs, and recommendations. Jacy Bell

Information Resources & Library Science, UAMLS Candidate, UA – Class of 2009

My goal is to provide medical care to women living in diverse and low income communities. As a trainee, I am working in collaboration with Dr. Duke Duncan to investigate the effects of visu-alization on uncontrolled movement disorders due to cerebral palsy.

Jessica Serrano-RodriguezPublic Health, Maternal and Child Health Division

College of MedicineMPH and MD Candidate, UA – Class of 2013

I want to work with families and individuals with disabilities in counseling and providing servic-es such as person-centered planning. In the distant future, I would like to establish a universally designed community center. As a trainee, I assisted with the Southern Arizona Person-Centered Planning Model Program and facilitated numerous plans.

Maya AsherRehabilitation Counseling

MA Candidate, UA – Class of 2009

I am interested in working with older adults, perhaps entering internal medicine and doing a fel-lowship in geriatrics. Before starting medical school, I was a member of AmeriCorps, working with homeless patients at the Metro Community Provider Network in Denver, CO.

As a trainee, I am working on a survey initially begun through the Medical Student Research Program entitled Providing Care for Adults with Developmental Disabilities. One of the goals of the Sonoran UCEDD is to establish a ‘Medical Home’ that provides comprehensive and coordinated care for persons with developmental disabilities. The purpose of this research project is to assess attitudes of health care providers and clinic staff at the UPH Family Medicine Center toward their patients with developmental disabilities. Our hope is that the survey will lead to increased provider training in DD.

Natasha BhuyanColllege of Medicine

MD Candidate, UA – Class of 2012

I am currently the Assistant Director/Instructional Specialist Senior at Artworks, an educational and professional field training program serving individuals with developmental disabilities. After I complete my PhD in Family Studies and Human Development, my goal is to secure a research position that allows me to pursue scientific research and to apply my knowledge in developing community programs serving populations of special interest: parents of adults with develop-mental disabilities and aging caregivers. Specifically, I am interested in promoting the quality of life and well-being of aging individuals (both caregivers and care-recipients).

As a research associate and trainee of the Sonoran UCEDD, I am working on the Aging and Transitions Project which includes a support coordinator survey, a caregiver study, and a com-munity education component.

Yumi ShiraiFamily Studies and Human Development

PhD Candidate, UA – Class of 2010

2009-2010 Sonoran UCEDD Interdisciplinary Training Progam meet our trainees!

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Summer 2009

Join our Mailing List!

The Sonoran UCEDD produces a variety of publications, in-cluding Sonoran UCEDD News, that communicate the ways we are connected to individuals and activities in Arizona and across the country.

If you would like to be added to our mailing list, please send an e-mail to ucedd@email.arizona.edu and type your name in the subject line or call 520-626-0442.

Current and archived issues of the newsletter can be accessed at http://sonoranucedd.fcm.arizona.edu/newsletter.cfm.

If you would like to receive this document in an alternate format, please call the Sonoran UCEDD at 520-626-0442.

The DD NetworkThe purpose of the

federal Developmental Dis-abilities Assistance and Bill of Rights Act of 2000 (the DD Act) is to assure that individu-als with developmental disabili-ties and their families participate in the design of, and have access to, needed community services, in-dividualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life, through culturally competent programs authorized under the law. The DD Act authorizes and Congress has funded three differ-ent programs in every state to carry out the act’s purpose — these pro-grams are: State Councils on Devel-opmental Disabilities; Protection and Advocacy Systems; and Uni-versity Centers for Excellence in De-velopmental Disabilities Education, Research and Service (UCEDD). These organizations together con-stitute the state DD Network. The DD Network collaborates on proj-ects and initiatives in the state to further the goals of the DD Act. On

May 27th, the DD Network coordinated a day-long re-treat with representatives from each organization at-tending to share informa-tion about current projects

and discuss new and innovative ideas for future partnerships.

Each of the agencies has a par-ticular role to play in carrying out the DD Act. The UCEDDs, are pri-marily engaged in research, educa-tion and training and information dissemination on disability. Some states, such as Arizona, have more than one UCEDD. The Sonoran UCEDD at University of Arizona and the Institute for Human Devel-opment/Arizona Center on Disabili-ties at Northern Arizona University have similar missions but different programs and projects. Our Protec-tion and Advocacy System is the Arizona Center for Disability Law, a statewide legal advocacy organi-zation protecting the rights of indi-viduals with all types of disabilities in Arizona.

The Governor’s Council on De-velopmental Disabilities (GCDD), the third entity funded by the Ad-ministration on Developmental

Disabilities under the DD Act, was authorized by Arizona statute to serve as the state’s planning and ad-vocacy agency for individuals with DD and their families. The Council, pursuant to federal legislation and state statute, is made up of indi-viduals with DD, family members, agency personnel, and providers, all of whom are appointed by the governor. Like many state statutes, the statute authorizing the GCDD had an end date and for the Coun-cil to continue pursuant to statute, it was required to be reauthorized by the legislature. The legislature did not reauthorize the GCDD as of June 30, 2009, and currently the Council offices are closed and the current Council has been disband-ed. The governor’s office is aware of the situation and will be taking steps in the coming months to re-constitute the Council.

Leslie Cohen, Sonoran UCEDD Director, has been a Council Mem-ber because of her position with the UCEDD. She would be happy to answer any questions you may have about the DD Network and our work via e-mail: ljcohen@email.arizona.edu.

Department of Family and Community MedicineUniversity of Arizona

520.626.0442 / ucedd@email.arizona.eduhttp://sonoranucedd.fcm.arizona.edu/

SONORAN UCEDDC e n t e r o f E x c e l l e n c e

In Developmental Disabilities Education, Research and Service