The Institute on Disability and Human Development, Summer 2009
Alert!
In this issue (click on the titles below to read the full article):
- Welcome from the Director
- IDHD Awarded Grant for Interdisciplinary Leadership Training in DD and Autism
- LEND Students’ Perspectives on Interdisciplinarity
- 14 Weeks to a Healthier You!
- New Books
- Moving Mountains in the Desert
- Rehabilitation Engineering and Universal Design Hit the Streets
- Disability Perspectives in Higher Education
- U.S. signs U.N. Convention!
- Why People with Cognitive Disabilities Abandon Technologies
- Understanding People with Developmental Disabilities by their Support Needs
- Equip for Equality Advancing Rights of People with Disabilities
- Youth in Service
- Accessibility Expo Raises Awareness of Digital Technology
- Awards & Honors
- Grants
- Theses and Dissertations Defended
- Publications
- Alumni
- In Memoriam Annie Marie Hopkins
You can also download Alert as a PDF file here.
Alert Producer:
Vladimir Cuk
Alert Editors:
Kristen ConnollyVladimir Cuk
Tamar Heller
Katie Keiling
Amie Lulinski Norris
Mary Kay Rizzolo
Abigail Schindler
Special Thanks to:
Claudia DiazAlan Factor
Glenn T. Fujiura
Glenn Hedman
Joan Ingram
Sarah Rothberger
William J. Schiller
Tina Taylor-Ritzler
Larry Voss
Feedback
We welcome your feedback on our newsletter and activities. Please send your comments and suggestions to Vladimir Cuk. Also contact Vladimir if you would like to be added to our mailing list or would prefer to receive the newsletter electronically:
Vladimir Cuk
Institute on Disability and Human Development M/C 626
1640 W. Roosevelt Road
Chicago, IL 60608-6904
Phone: 312.413.1535
Email: vcuk2@uic.edu
Welcome from the Director
Training a new cadre of leaders across disciplines in the field of disabilities is a key mission of our Institute and academic department. Hence, we were very pleased to receive the federally funded Maternal and Child Health Leadership Education in Neurodevelopmental and related Disabilities (LEND) training grant. This grant enables us to better train students, families, and community practitioners in effectively serving individuals with developmental disabilities and their families with a strong focus on autism. In this issue we highlight this program and provide some insights of the student trainees regarding the value of interdisciplinary education. In addition to didactic sessions, these students have had opportunities to participate in clinical, research, and community advocacy activities. I had the chance to join some of the trainees as they first experienced visits to congressional offices in Washington, D.C. to advocate for progressive disability policies. Certainly, in these times of major budget cuts at both the federal and state levels the need to effect systems change and disability friendly policies has greatly increased.
This issue also includes information on technology and universal design. The Accessibility Expo held at UIC was a wonderful event that highlighted ways that universities can use digital technology to have classroom and distance learning instructional materials that are accessible to students with disabilities. The IDHD’s Assistive Technology Unit, through its mobile vans provides both adaptive equipment and home modifications that enable people to live more independently and to more actively participate in their communities. In a national survey that we conducted we found that while many technological devices exist to aid people with disabilities, many people with disabilities either have not accessed them or in many cases abandoned them due to feeling that these devices are “too complicated.” Thus, it is important to find technologies that match the needs of the individual and IDHD’s ATU does an exemplary job of this.
Finally, it has been a productive year for our faculty scholars who have produced several new books which range in topics from health promotion for people with developmental disabilities to issues pertaining to race, culture and disabilities; to the bio-cultural history of obsessive behaviors to funding for DD services. Each of these books forges new paths in disability practice and discourse.
In these challenging times, we, along with our sister agencies, community agencies, and advocacy groups continue to struggle to improve services for people with disabilities. We hope that our research and model programs help to further this mission.
Sincerely,
Tamar Heller, Ph.D.
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IDHD Awarded Grant for Interdisciplinary Leadership Training in DD and Autism
Image: LEND trainees at the Autism Speaks Walk
The Institute on Disability and Human Development (IDHD) received a three-year, $1.65 million federal grant to train students, professionals and family members to support families and children with developmental disabilities. This interdisciplinary Leadership Education in Neurodevelopmental and related Disabilities (LEND) training program is the first of its kind in the State.
The program is funded through the Health and Human Services’ Health Resources and Services Administration-Maternal and Child Health Bureau. Its aim is to prepare the next cadre of professionals and family members to address the needs of children with Autism Spectrum Disorders and other developmental disabilities. With the projected shortfall of professionals knowledgeable in this area, the project addresses an important gap in Illinois. “Children with special healthcare needs frequently experience emotional and physical health problems that could be addressed more effectively if their healthcare providers had adequate knowledge and resources available,” said Ann Cutler, MD, Clinical Assistant Professor and the project’s co-principal investigator.
Children with special healthcare needs frequently experience emotional and physical health problems that could be addressed more effectively if their healthcare providers had adequate knowledge and resources available. - Ann Cutler, MD
The LEND program provides specific clinical, community and leadership training to about 40 graduate students, medical students, family members and post-doctoral fellows across 12 disciplines. It emphasizes screening, diagnosis, treatment and support issues for children with Autism Spectrum Disorders. As part of community outreach another 400 professionals, families, and students state-wide receive training on issues related to developmental disabilities, including autism. Other training and services under the LEND program include producing training materials in Spanish and hosting cultural-competency trainings.
The LEND program prepares future leaders to serve children with disabilities and their families through coordinated, culturally-competent and family-centered care, as well as through public health services and policy systems change.
UIC’s partners in the LEND program include the University of Chicago, Rush University, The Autism Program of Illinois (TAP), the Illinois Title V MCH (Maternal Child Health) program, and several community agencies.
The program’s co-principal investigators are Elina R. Manghi, PsyD, Assistant Professor in Disability and Human Development and Peter J. Smith, MD, Assistant Professor of developmental/behavioral pediatrics at the University of Chicago. IDHD’s Kristen Connolly, MSW, is the project coordinator. Key program training sites are UIC’s Children’s Mental Health and Developmental Neuroscience Center and the UIC TAP Project on Autism.
For more information about the program, including admission and certificate requirements, visit www.illinoislend.org.
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LEND Students’ Perspectives on Interdisciplinarity
Image: LEND trainees
As my first year in the Disability Studies program at UIC comes to a close, I find myself reflecting on the remarkable experiences and opportunities afforded to me. Along the way I have learned a great deal about the value of interdisciplinarity as well as the challenges.
Interdisciplinarity opens doors to communication and discussion among peers allowing for diversity of thought, approach, background, and areas of interest. We sometimes get so used to the way we approach a question that we forget there are other perspectives. Dialogue between disciplines reminds us that not only are there other approaches, but other questions as well. It can be difficult finding a balance between open communication and respecting everyone’s differences. Everyone involved has to be flexible and consider that people are coming from different backgrounds. So while we benefit from those diverse experiences, we do not necessarily share common foundational experiences. This is another reason why it is important to have a shared focus or goal; to acknowledge that even though we are coming from our own fields, we are all working towards the same end. - Kate Caldwell, MA
Dialogue between disciplines reminds us that not only are there other approaches, but other questions as well. - Kate Caldwell, MA
One of the most valuable opportunities I have experienced as a result of an internship through IDHD, as well as the LEND, is working on an interdisciplinary team — incorporating various disciplines including health professionals, sociologists, and family members. I have made connections, increased my awareness of community services, and established professional relationships in order to further future practice. Working on an interdisciplinary team has not only proven beneficial to me professionally but also to the families I am advocating for.
The lives of people with disabilities and their families do not take place in a vacuum-neither can the work of the professionals that support them. Throughout my experiences in the Social Work program and course curriculum, I have had minimal opportunity to develop a thorough understanding of how my profession fits into various non-clinical settings. Social workers can fill many different professional roles and finding my path, up to this point, has been a challenge. However, through the LEND I have been working among professionals with different backgrounds exposing my own strengths and weaknesses, and highlighting the importance and value of the social work profession. While disciplines often work alongside each other, many do not work together. It is essential to respect the work and expertise of your colleagues while continuing to challenge beliefs, contribute to their development, and expect the same in return. - Jessica King, MSW
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14 Weeks to a Healthier You!
Last summer, over 700 people with disabilities and organizations completed the National Center on Physical Activity and Disability (NCPAD) 14 Weeks to a Healthier You program. The email and online program included weekly tips on topics such as nutrition, workout ideas, fitness equipment, weather, motivational tools, written and video resources, and more. Participants created a free individualized online fitness plan tailored to meet their personal long and short-term goals and had exclusive access to physical activity and nutrition experts who provided personalized guidance. For example, program participants contacted NCPAD staff via phone or email to ask specific questions related to their condition, clarify information on tips, or request more information on health promotion and fitness.
Program participants were shown how to log progress and receive motivational tips such as how to use healthy rewards for meeting goals. They were taught the value of journaling goals, activities, and feelings during the program in order to reflect on both accomplishments and future goals. Participants also had the opportunity to suggest specific topics to be addressed in future weeks, making the program responsive and relevant to each group.
Image: Participants lifting weights
One unique feature of the program was that it could be offered in a group setting allowing people who did not have internet access to participate and providing social support for local participation. Qualified group leaders had access to tip sheets that could be altered to meet the needs of their specific group. For example, groups were formed with content tailored to the needs of individuals with brain injury, developmental disabilities, spinal cord injury and older adults. Other groups were formed with a focus on walking or enhancing physical therapy outcomes. Also, local support groups were formed for participants from government agencies, research organizations, and public health departments.
If you work for an organization that services persons with disabilities and would like to tailor a 14-Week program for your participants, NCPAD would like to collaborate on this effort with your organization.
For more information, please visit
www.ncpad.org/fitt/fact_sheet.php?sheet=677
call 800-900-8086 or email mmccal1@uic.edu
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New Books
Health Matters for People with Developmental Disabilities: Creating a Sustainable Health Promotion Program, by Beth Marks, Jasmina Sisirak, & Tamar Heller. To order please visit: www.brookespublishing.com/store/books/marks-70007/index.htm
Health Matters: The Exercise and Nutrition Health Education Curriculum for People with Developmental Disabilities, by Beth Marks, Jasmina Sisirak, & Tamar Heller. To order please visit: brookespublishing.com/store/books/marks-69995/index.htm
Race, Culture and Disability: Rehabilitation Science and Practice, by Fabricio E. Balcazar, Yolanda Suarez-Balcazar, Tina Taylor Ritzler, & Christopher B. Keys. To order please visit: www.jbpub.com/catalog/9780763763374/
Obsession: A History, by Lennard Davis. To order please visit: www.press.uchicago.edu/presssite/metadata.epl?mode=synopsis&bookkey=283491
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Moving Mountains in the Desert
Image: At the workshop, from left to right: Vladimir Cuk, Miriam Rahali, Victor Pineda.
“I want you to know that we can speak, I want you to know that we can speak,” repeated the Saudi mother of a child with autism from Riyadh, while she patiently fixed her abaya. She was one of 70 participants in the Youth Leadership workshop organized by Victor Pineda of the Victor Pineda Foundation and myself. The workshop was part of the 3rd International Conference on Disability and Rehabilitation in Saudi Arabia. Looking around the room, I was overwhelmed by the excitement as local women, covered in black, passionately discussed the barriers that people with disabilities face in their communities. The room was filled with emotion, enthusiasm, and change in the making. It was so powerful I found it difficult to keep myself from crying. Even though our workshop was scheduled to end four hours earlier, people were still there, and as excited as ever. Throughout the remainder of the conference my mind kept repeating “we did something special.”
The Kingdom of Saudi Arabia has been investing a considerable amount of resources, including the interest of the Prince Sultan himself, into disability research and disability rights, particularly through the Prince Salman Center for Disability Research. Over 100 people from around the world joined several thousand Saudis at the conference under the patronage of Prince Sultan Bin Abdulaziz AlSaud.
The first part of our workshop addressed youth leadership. There were 18 students with disabilities from a local public school that were taught, for the first time, what their rights were as people with disabilities. The second half dealt with the UN Convention on the Rights of Persons with Disabilities, followed by a discussion on the social model of disability and accessibility issues. At the beginning of the workshop, the men occupied the seats around the conference table while the women occupied the spaces around the room. By the end of the workshop, however, women were leading discussions on barriers that exist for disabled people within Saudi Arabian society. Not only was our workshop about disability rights, but it also addressed women’s rights and human rights in general.
I was proud to represent the Institute on Disability and Human Development in this conference. We were invited by the Saudis to continue the momentum that we built during the conference by implementing 3 additional workshops in different regions in Saudi Arabia in the future. I was reminded of how wonderful it is to move mountains!
Vladimir Cuk, MS, and Tristan Oleynik, UIC student
For more information, please contact Vladimir at vcuk2@uic.edu.
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Rehabilitation Engineering and Universal Design Hit the Streets
Image: ATU modification to art program
The Assistive Technology Unit (ATU), provides community-based services in the areas of: Adaptive Equipment, Activities of Daily Living, Augmentative Communication, Computer Access, Environmental Control, Home Modification, Specialized Seating, Wheeled Mobility, and Worksite Modification. Services are provided by an interdisciplinary team which includes Occupational Therapists, Physical Therapists, Rehabilitation Engineers, and Speech-Language Pathologists. ATU, a clinical component of IDHD, provides 95% of its services in consumers' homes, schools, worksites, or places of recreation, using its fleet of seven Mobile Units. Three of these vans have shop equipment and raw materials on-board so that fabrication can take place on-site.
The ATU provides 95% of its services in consumers' homes, schools, worksites, or places of recreation.
Two of these areas of service bring the ATU's Rehabilitation Engineers front-and-center: Adaptive Equipment and Home Modification.
Adaptive Equipment is a catch-all term meant to cover any specialized adaptation to a commercially-available item or custom-design, custom-fabrication of a device. When assessing the match between an individual's abilities and the task needing to be performed, the ATU first considers commercially-available devices. If a match does not exist, the team tries to identify an available device which they can modify. A third and last option would be to customize equipment.
As an example, ATU Rehabilitation Engineers worked with several schools on their after-school art programs for students with and without disabilities. As the Rehabilitation Engineers worked with several students, they discovered that adjusting elements of the art- making stations benefited all students. For example, adjustments included the addition of rotating palettes and adjustable canvas holders pictured above. The ATU packaged such components in a kit, and offered them through an Assistive Technology product distributor in order to allow more people access to art-making.
The ATU provides Home Modification services to consumers when they need specific accessibility changes in the home. The specifications, in the form of a detailed report, summary, and scale drawings, are used to obtain bids from local contractors. After the work has been completed, the ATU conducts an assessment to make sure that the work was done as needed.
ATU Rehabilitation Engineers are on the streets each day, applying engineering, ergonomic, and universal design principles for consumers in Illinois and beyond.
If you are interested in receiving services, please contact the ATU at (312) 413-1555, (312) 413-1554 (tty), or atu@uic.edu
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Disability Perspectives in Higher Education
During the last few decades, Disability Studies scholars and leaders within the Association of Higher Education and Disability (AHEAD) have been simultaneously working towards providing state-of-the-art services and exploring the role environment has on the disablement of persons with disabilities. Despite efforts to reframe disability and promote universal design from an educational perspective, most postsecondary disability service providers continue to implement services using the individual approach which focuses on determining and then accommodating the individual’s ‘deficit’. Under this model, it is acceptable to ‘normalize’ the student with disabilities by retro-fitting him/her with technology specifically designed for the person’s individualized accommodations rather than eliminate barriers or re-design the environment. In contrast, the use of Universal Design emphasizes redesigning the environment to fit the largest number of people possible, which moves the focus from the individual to society. It also makes for an environment which is responsive and adaptable to individual differences.
Although both social and universal models perceive the environment as the main agent responsible for the oppression of persons with disabilities, their unique lenses create some paradoxes for using them in higher education settings. Using the ADA and Section 504 of the Rehabilitation Act to illustrate the point, many service providers could assume that the elimination of barriers on an individual basis satisfies a ‘rights’ model. The ADA does allude to accommodations as an appropriate solution to combat discrimination against people with disabilities, including students. It also defines disability, as an individual condition and not a social phenomenon. Therefore, it is probable that civil rights are often connected to the use of an individual rather than a social or universal approach. Therefore, it is important that AHEAD and its members move towards a universal approach, hence enabling all students to participate in an environment which allows them to go in through the same door and travel the path together.
For more information, please contact Alberto Guzman at albertog@email.arizona.edu.
Alberto Guzman completed his doctoral work in Disability Studies from the University of Illinois at Chicago. He currently has a postdoctoral position at the University of Arizona with the Sonoran Center for Excellence on Developmental Disability.
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U.S. signs U.N. Convention!
“Our Nation is once again poised to make history for people with disabilities. I am proud to announce that the United States will sign the United Nations Convention on the Rights of Persons with Disabilities, adopted by the United Nations General Assembly in New York on December 13, 2006. The Convention is the first new human rights convention of the 21st century adopted by the United Nations, and it represents a paradigm shift in protecting the human rights of 650 million people with disabilities worldwide. We proudly join the international community in further advancing the rights of people with disabilities,” President Obama (July 24, 2009).
On July 24, 2009, President Obama signed a proclamation celebrating the 19th anniversary of the American with Disabilities Act, in which he announced that the U.S. will sign the historical United Nations Convention on the Rights of Persons with Disabilities which has already been signed by 141 other countries. Our Institute's Director, Tamar Heller, who attended this event held in the White House's East room, reported that both Secretary of State Hillary Clinton and President Obama spoke eloquently about the importance of human rights for people with disabilities. On July 30, 2009, Ambassador to the United Nations Susan Rice signed the treaty. It will next be presented to the Senate for ratification, with a two-thirds majority required.
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Why People with Cognitive Disabilities Abandon Technologies
To ensure that persons with cognitive disabilities and their support persons use technology, it is necessary to understand not only their needs, but also the barriers that impede their use. Ongoing input from these constituencies is crucial. To examine these needs, IDHD, along with the Rehabilitation Engineering Research Center for the Advancement of Cognitive Technologies at the University of Colorado and the Institute for Matching Person and Technology conducted a project to: 1) assess the need for technology, current knowledge of available technology, use of technology, and barriers to its use from the perspective of people with cognitive disabilities and from their support persons; and 2) compare specific differences across two groups (Developmental Disabilities (DD), and Traumatic Brain Injury (TBI)).
To collect this information we developed an online survey. Six hundred twenty one persons completed the survey. Out of that number, 347 surveys addressed people with DD (including 304 surveys completed by caregivers or support workers of people with DD and 43 completed by people with disabilities themselves) and 168 addressed people with TBI (including 79 surveys completed by caregivers or support workers, and 89 by people with TBI themselves).
Graph: Use and abandonment of technologies by people with DD and TBI
For both of these groups we investigated which technologies were abandoned and the key reasons for discontinuing use. The chart above represents the percentages of people who used the technologies, and percentages of people who abandoned them.
Based on the results, the technologies still highly in use, with minimal or no abandonment, were the cell phone and the computer. Only 6% of people surveyed who had previously used the cell phone stopped using it. The main reason for abandoning either the cell phone or computer across groups was that the technology was too complicated.
In contrast, the technologies that were more likely to be abandoned were the telephone with pictures (57% across all respondents) and the tape recorder (42%). These were abandoned largely because they were replaced with another technology.
For more information contact Principal Investigator Tamar Heller at 312-413-1647 or theller@uic.edu.
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Understanding People with Developmental Disabilities by their Support Needs
The Illinois Council on Developmental Disabilities (ICDD) works alongside IDHD in pursuing systems change in Illinois by identifying promising practices and seeking ways to incorporate models with tested outcomes into our service system. No two people are alike, so we know no two people will need identical supports in their lives. As person-centered planning better addresses personal differences, service systems strive to equitably provide supports to everyone in need. ICDD invested in Personalized Supports and Needs Assessment and Planning in Illinois at Illinois State University to further research the efficacy of the Supports Intensity Scale in quantifying the level of need for support services within the individualized planning process.
There is an emerging consensus that the most important difference between people from the general population and people with intellectual and related developmental disabilities lies in the support needs of the two populations. That is, people with intellectual and related developmental disabilities need the types of supports that people from the general population do not need in order to (a) benefit from education and learn, (b) participate in and contribute to society, and (c) be protected from exploitation and abuse. A supports orientation emphasizes matching people with individualized supports that empower them to participate in life activities that are consistent with their interests and goals.
Drawing by Martha Perske
Matching people with proper supports is best accomplished through collaborative problem solving by the individual with the disability along with a team of people who care about him or her. A team’s work can be enhanced if members have tools that provide useful information about a person’s support needs. The Supports Intensity Scale (SIS) was designed to provide a standardized measure and profile of support needs. In the five years since the American Association on Intellectual and Developmental Disabilities first published the SIS, it has been adopted by 13 U.S. states and Canadian provinces, translated into 11 languages, and widely used in Europe, Asia, and Australia.
Component #1: Identify Desired Life Experiences and Goals. Use of person centered planning (PCP) to find out what is important to a person, including what is most important to change and maintain in the person’s current life.
Component #2: Determine the Intensity of Support Needs. Gather information on the nature of support that a person would require to participate successfully in an array of life activities.
Component #3: Develop the Individualized Support Plan. Here the discussion shifts from some day to now, and a plan of action is implemented.
Component #4: Monitor Progress. Ongoing, systematic monitoring to identify any inconsistencies between what was planned and what actually happened.
Component #5: Evaluate the Extent to Which Desired Life Experiences and Personal Outcomes Are Being Realized. This component is an acknowledgement that personal preferences and priorities change over time, and plans need revision when they no longer continue to meet a person’s needs.
To provide people in Illinois the opportunity to become familiar with the SIS, the ICDD recently funded a project to teach 80 professionals and 20 family members how to facilitate person-centered planning sessions and administer and score the SIS. Workshops were held at eight sites in diverse areas of the State.
For more information, please contact Jim Thompson at jrthomp@ilstu.edu.
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Equip for Equality Advancing Rights of People with Disabilities
Equip for Equality (EFE), the federally-mandated Protection and Advocacy System for Illinois, has had a productive year advancing the human and civil rights of people with disabilities.
Our new Special Education Clinic has been in operation for two years now. It was created in response to public comments during our annual priority-setting process urging us to represent more students at school meetings and due process hearings, as well as a recent Illinois study that found that education was the highest unmet legal need among low income families. The toll-free Helpline provides parents with timely answers to their questions, as well as legal advice and strategies to enable them to secure a quality education for their students tailored to their individual needs. The number of families we assist has risen over 75% since the Clinic’s inception.
In a smaller number of instances, the Clinic provides representation at critical school meetings and due process hearings. Seven leading Chicago law firms partner with the Clinic by inviting us to train their attorneys about special education law and processes on-site. To date, we have trained over 100 volunteer attorneys and assigned over 40 individual cases to them.
Equip for Equality and co-counsel continue to work on litigation (Ligas v. Maram) involving people with developmental disabilities living in private institutions. The agreement, had it been approved, would have given thousands of institutionalized individuals the choice to live in integrated housing in the community with needed supports. While a federal court decertified the class, the case has not been dismissed and the court is still determining whether Illinois is in compliance with the law. Two other class action lawsuits have been filed against the State under the Americans with Disabilities Act, one involving the unnecessary segregation of people with mental illnesses in private institutions and the other involving residents of nursing homes.
On another front, our independent investigation of the state-operated Howe Developmental Center for longstanding abuse and neglect, including dozens of deaths, eventually led to the former Governor announcing plans to close the facility last fall, but closure is now on hold, indefinitely. Despite the loss of federal Medicaid funding of the institution over two years ago due to grossly deficient care and treatment and rights violations, the new Governor decided to reconsider the issue. We are very concerned about any delays in closure, given the risk the residents face on a daily basis.
Seven leading Chicago law firms partner with the Clinic by inviting us to train their attorneys about special education law and processes on-site. - Zena Naiditch.
Finally, several weeks ago the Illinois General Assembly passed legislation to ban the sterilization of adults with disabilities under guardianship without due process. In so doing, the reproductive dignity of adults with disabilities under guardianship has been preserved. The bill has been sent to the Governor for his signature. After obtaining a landmark decision in the Illinois Appellate Court upholding the denial of a petition for involuntary sterilization of a 26-year-old woman, we set to work on obtaining a permanent statewide policy change. We worked in coalition with other organizations to draft the bill, and The Chicago Foundation for Women provided crucial funding to support our lobbying efforts.
Equip for Equality continues to work in close partnership with the Institute on Disability and Human Development and its ADA Center. Together, we are advancing the rights of people with developmental and other disabilities in Illinois.
Zena Naiditch, President and CEO
For more information please contact EFE at (312)341-0022, or the toll-free Helpline (800)537-2632, or contactus@equipforequality.org.
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Youth in Service
Image: Stephanie Sommers and a member of Grupo SALTO
Grupo SALTO honored Stephanie Sommers for her generous contribution to children with Autism Spectrum Disorders and their siblings. Stephanie, a 13-year old Florida resident, knitted 60 children’s scarves which she donated to the group. Stephanie received recognition during the end of the year Family Party. Children with Autism Spectrum Disorders and their siblings who attended the event were thrilled to pick their favorite color scarf from Stephanie.
Grupo SALTO is an independent support group for Spanish speaking families from the Chicago land area who have children within the Autism Spectrum. The number of families has grown to over 250. The main focus of the group is to provide training, education, and support for parents. Grupo SALTO, supported by the IDHD Developmental Disabilities Family Clinics’ Hispanic Program, provides child care while parents attend the educational portion of the monthly meetings. Educational meetings include the dissemination of best practice information in the field of Autism, as well as resources needed to successfully raise children with Autism. Many of the families have also participated in the Autism minority training with support from the Autism Program (TAP).
For more information on Grupo SALTO, Please contact Matie Ovalle at movalle@uic.edu or 312-355-0426.
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Accessibility Expo Raises Awareness of Digital Technology
On April 9, 2009, UIC hosted its first Annual Digital Accessibility Expo, featuring presentations by digital accessibility experts and exhibits from a wide variety of vendors linked by the common goal of raising awareness of and access to digital technologies for people with disabilities. The event, coordinated by UIC’s Disability Resource Center, was co-sponsored by IDHD including its DBTAC: Great Lakes ADA Center.
The exhibit hall was filled with vendor booths, information, and demonstrations presenting an impressive variety of assistive technology. The featured presentations included sessions on the basics of digital accessibility, creation of accessible classroom materials, development of accessible websites, and the availability of assistive technology on the UIC campus.
I attended the exhibits to learn about speech-to-text software to control my computer with my voice. Representatives from Assistive Technologies, Inc. who demonstrated and let me try Dragon NaturallySpeaking 10. The software enabled me to transcribe text in a word processing document, email, chat, etc. It even controlled the computer mouse, keyboard commands, and allowed me to browse the internet. I was impressed and cannot wait to get my copy! Looking around I could see that others were having similar experiences with vendors of their specific interests – Braille printing, text-to-speech, real-time captioning, video relay services, and more.
Clearly, the Expo was a resounding success for all involved. For more information on digital accessibility or assistive technologies available on the UIC campus, contact Kevin Price at the Disability Resource Center at (312) 413-0886 or pricek@uic.edu.
Randall Owen, MS, PhD Student in Disability Studies
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Awards & Honors
- Robin Jones, Project Director/Instructor, was elected to the Board of the National Association of Rehabilitation Research and Training Centers in May 2009.
- Fabricio Balcazar, Professor, received the National Association of Rehabilitation Research and Training Centers Special Commendation Award in May 2009.
- Chitra Gurung, MS Student, was awarded the 8th Annual Ann and Edward Page-El, MD Scholarship Award in May 2009.
- Mary Kay Rizzolo, Associate Director, was appointed Vice-Chairman of the Ray Graham Board of Directors in May 2009.
- Tamar Heller, Director, was awarded the 2009 Autism Ally for Public Policy Award by The Arc of Illinois and The Autism Program of Illinois in April 2009.
- Lennard Davis, Professor, was awarded a Liberal Arts and Sciences Distinguished Professorship award in April 2009.
- Beth Marks, Research Assistant Professor, received a Distinguished Alumnus Award from the University of Cincinnati College of Nursing Alumni Association in April 2009.
- Joseph Caldwell, Adjunct Research Assistant Professor, was appointed Kennedy Public Policy Fellow in November 2008.
- Katie Keiling, Community Support Coordinator/MS student, and John Kramer, alumnus, were chosen as co-chairs of the National Sibling Leadership Network in February 2009.
- Vladimir Cuk, PR and Advocacy Coordinator/PhD student, was awarded the Chicago Consular Corps scholarship in February 2009.
- Katie Keiling, Community Support Coordinator/MS student, was awarded the AUCD Anne Rudigier Award in November 2008.
- Two PhD students were awarded the Provost's Award for Graduate Research. Kelly Munger for her dissertation project "Exploring the Lived Experience of Stigma Among Individuals with Cerebral Palsy" and Edurne Garcia for her dissertation project "Increasing Participation of Adults with Intellectual and Developmental Disabilities in their Individual Service Plans."
- The late Annie Hopkins, MS student, was awarded Advocate of the Year by the Progress Center for Independent Living in October 2008.
- Lennard Davis, Professor, had his book Obsession: A History, named one of the five best books by Chicagoans in 2008.
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Bronwynne Evans, RN, PhD and Beth Marks, RN, PhD produced the documentary film "Open the Door, Get ‘Em a Locker: Educating Nursing Students with Disabilities," chronicles the experience of a nursing student who entered a baccalaureate program using a wheelchair. For more information please visit: www.nurseswithdisabilities.org |
Grants
- Ann Cutler, Clinical Assistant Professor, was awarded the Leadership Education in Neurodevelopmental and related Disabilities (LEND) Training Program grant in September 2008.
- Tamar Heller, Director, IDHD, was awarded a grant by the Illinois Department of Human Services entitled "An Analysis of Movement from State Operated Developmental Centers in Illinois."
- Robin Jones, Director, Great Lakes ADA Center, was awarded a contract to provide technical assistance to the 2016 Chicago Olympic Bid Committee regarding the accessibility of their website in September 2008.
- Robin Jones was awarded a grant by the City of Chicago for the development of their ADA Title II Self-Evaluation/Transition Plan. This will be a three year process which will commence in the Fall of 2008.
Lennard Davis, Professor, began hosting a PsychologyToday.com blog, "Obsessively Yours" in November 2008.
Theses and Dissertations Defended
The following students successfully defended their doctoral dissertations:
- Shilpaa Anand, "Delusive discourse: Tracing the conceptual history of disability in India."
- Denise Nepveux, "‘In the same soup': Marginality, vulnerability and belonging in the life stories of disabled women in Accra, Ghana."
- John Kramer, "People with disabilities and their siblings: Building concepts of support and transitions."
- Edurne Garcia Iriarte, "Participation of people with intellectual disabilities in empowerment evaluation: Process and impact."
- Alberto Guzman, "Exploring postsecondary education disability service's standards: Alignment with Disability Studies."
The following students successfully defended their Master's thesis:
- Kate Bacon, "Establishing an instrument to assess the need for home modifications to enable community access."
- Karen Eder, "Social enterprise in a nonprofit agency serving people with developmental disabilities: A case study."
- Sarah Franz, "Not Deaf enough: Experiences of oral Deaf individuals."
- Norma Jane Mejias, "The influence of a support group for young disabled women on members' sense of belonging."
Publications
- Balcazar, F. (2008). Transition years: An examination of outcomes for girls. In Parent, W., Foley, S., Balcazar, F., Ely, C., Bremer, C. & Gaylord, V. (Eds.). Impact: Feature issue on employment and women with disabilities, 21(1), 18-19. Minneapolis: University of Minnesota, Institute on Community Integration.
- Braddock, D., Hemp, R. & Rizzolo, M.C. (2008). The state of the states in developmental disabilities: 2008. American Association on Intellectual and Developmental Disabilities.
- Caldwell, J. (2008). Health and access to health care of female family caregivers of adults with developmental disabilities. Journal of Disability Policy Studies 19(2), 68-79.
- Heller, T., Kaiser, A., Meyer, D., Fish, T., Kramer, J., & Dufresne, D. (2008). The Sibling Leadership Network: Recommendations for research, advocacy and supports relating to siblings of people with developmental disabilities.
- Hernandez, B., McCullough, S., Balcazar, F., and Keys, C. (2008). Accessibility of public accommodations in three ethnic minority communities. Journal of Disability Policy Studies 19(2), 80-85.
- Lulinski Norris, A. (2009). Seven entries in Mullner, Ross, Tricia J. Johnson, and Robert F. Rich (Eds.), Encyclopedia of Health Services Research. Volumes 1 & 2, Los Angeles, CA: Sage.
- Kramer, J. (2009). I am not my brother’s keeper. In Don Meyer (Ed.) Thicker than water: Essays by adult siblings of people with disabilities. Bethesda, MD: Woodbine House.
- Minkler, M., Hammel, J., Gill, C., Magasi, S., Bristo, M., & Coleman, D. (2008). Community-based participatory research in disability and long term care policy: A case study. Journal of Disability Policy Studies 19(2), 114-126.
- Ostrander, R. N. (2008). When identities collide: Masculinity, disability and race. Disability and Society 23(6), 585-597.
- Rizzolo, M.C., Hemp, R., Braddock, D. & Schindler, A. (2009). Family support services for persons with intellectual and developmental disabilities: Recent national trends. Intellectual and Developmental Disabilities 47(2), 152-55.
- Taylor-Ritzler, T. (2008). School dropout and teen moms with learning disabilities. In Parent, W., Foley, S., Balcazar, F., Ely, C., Bremer, C. & Gaylord, V. (Eds.). Impact: Feature issue on employment and women with disabilities, 21(1), 19. Minneapolis: University of Minnesota, Institute on Community Integration.
Alumni
- Supriya Raman, alumnus, accepted a position at the Federal Aviation Administration as and FAA Civil Rights - ADA Specialist in April 2009.
- John Kramer, alumnus, accepted a job as a Research Associate at the Institute on Community Inclusion, the MA UCEDD at the University of Massachusetts, Boston.
- Jessica Kramer, alumnus, accepted a position as an Assistant Professor in the Occupation Therapy Department at Boston University.
- Edurne Garcia, alumnus, accepted a two year post-doctoral fellowship at the National Institute for Intellectual Disability in Dublin, Ireland in February 2009.
Edurne Garcia, PhD alumnus, and Tamar Heller, Director, presenting at the National Scientific Conference on Disabilities in Salamanca, Spain in March 2009
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In Memoriam Annie Marie Hopkins
October 6, 1984 - January 20, 2009
Annie Marie Hopkins passed away on January 20th, 2009. She was a Master’s student at the Department of Disability and Human Development, University of Illinois at Chicago.
I will always remember Annie as a great fighter, whether she was trying to convince the Department of Human Services to give her more services or hospital staff to treat her with due respect. Annie was smart, interesting, and was always excited about new projects, new plans, and opportunities to change the world. There are many battles to be fought and many projects that she started that her friends will carry on.
Vladimir Cuk
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Support IDHD/DHD
Your contributions can help promote the mission of the Institute on Disability and Human Development. Opportunities for giving include the following examples:
- Supporting the Ann & Edward Page El MD Scholarship Award for graduate students
- Advancing supportive interactions for children and adults with Autism
- Promoting the participation of people with disabilities through assistive technology
- Supporting the Disability Studies Colloquium Series.
For more information on making a gift to IDHD please contact:
Tamar Heller, PhD, Professor, Director / Head
Institute on Disability and Human Development (M/C 626)
University of Illinois at Chicago
1640 West Roosevelt Road, Chicago, IL 60608-6904
Phone: 312.413.1647, TTY: 312.413.0453, Email: theller@uic.edu