CPD salutes former director, welcomes new leadership
This month, the Center for Persons with Disabilities saluted Sarah Rule, who has stepped down as its director. The center has also welcomed Bryce Fifield as its new top administrator.
Fifield comes to the CPD and the Utah State University campus from Minot State University, where he served as the executive director of the North Dakota Center for Persons with Disabilities. He began directing the Utah CPD on July 14.
Rule will continue on at the center as a part-time liason with the Post-secondary Education, Employment and Research (PEER) program, so this is not really goodbye. Still, because she is leaving a high-profile job that she has held since 2000, the woman whom colleagues universally describe as quiet and unassuming has had to endure the fuss her colleagues at the CPD have made over the change in her job description. For some reflections on Sarah Rule, visit http://www.cpd.usu.edu/home/cpd_recognizes/index.php?id=1128.
As for the future, Rule said Fifield has come to the CPD and "hit the ground running." For more information on Bryce Fifield, visit http://www.cpd.usu.edu/home/cpd_recognizes/index.php?id=1129.
"It's been a huge asset in our lives," says Jodi Hansen, who has participated as a parent in URLEND for three years.
URLEND program gives trainees the whole picture on disability
Tina Persels is the mother of an eight-year-old child with multiple disabilities: hydrocephalus, cortical hearing disabilities, chronic lung disease, cerebral palsy and autism. When she became a family participant in the Utah Regional Leadership in Neuraldevelopmental Disabilities (URLEND) Program, it was a give-and-take situation.
One thing she gained was access to an audiology trainee who sat down and pored over her son's medical record. The trainee put together information that was already on file and reached this conclusion: her son's hearing problems were due to a break in the connection between his brain and his ear. It was a problem that a hearing aid would not help, and identifying it was a breakthrough.
In return, Persels and other parents gave the trainees "just the presence of parents being there and being able to answer questions. ... To have a parental outlook in a non-threatening environment."
The URLEND program is aimed at training post-graduate students and professionals to get a more complete picture of health care for children and adolescents with disabilities. Its approach is integrated, culturally appropriate and family-centered. The trainees are brought in from many fields. Family representatives are on hand, too, giving the trainees a look at the home life of children with disabilities.
The program is coordinated through the Center for Persons with Disabilities at Utah State University, the University of Utah Department of Pediatrics and Utah's Bureau for Children with Special Health Care Needs. The University Centers for Excellence on Developmental Disabilities in Idaho, Montana, Wyoming and North Dakota are also partners, along with Family Voices organizations in each of the member states.
This broad array of trainees and experts is brought together for training sessions by interactive video, since many of the participants are from outside Utah. In addition, trainees complete leadership projects in their field of study and spend time in clinical settings, gaining real-world knowledge in their field. All told, they log in 300 hours of classroom, leadership and clinical experience.
Trainee Christine Anderson loved her experience as a trainee. "It was just a great opportunity to network with other professionals," she said. Her leadership project collected information that would aid young adults with disabilities to move from the public school system to the adult world. This information was also needed in Spanish.
Anderson assembled information on transition services and issues that could be used by both families and professionals. She helped create a slide show that discusses transition topics in Spanish. She also developed a checklist for preparing students to transition into adulthood, telling families what steps to take, and when. Then she posted her material on a portal of the National Clearinghouse for Rehabilitation Training Materials website. (See http://ncrtm.org/course/view.php?id=61.)
Her work was one of 15 leadership projects posted on the URLEND website for the 2007-08 academic year.
All trainees are required to present their leadership projects to Spanish-speaking families of children with special health care needs. They develop a power point presentation that program coordinator Juan Carlos Vazquez translates into Spanish. He coaches trainees on making their presentations culturally appropriate, and if they do not speak Spanish he is their interpreter. It is an experience that has helped trainees understand cultural issues and helped family members better understand the causes of disability. It has linked families with the professionals they needed.
In addition to translating and interpreting, Vazquez teaches one of the weekly training sessions that deals with cultural competence. His focus is on the Latino/Hispanic culture, and one of his first messages is that people who speak Spanish come from a number of different countries and cultures. Trainees need to understand that while patients may share a language, they may not have the same heritage.
The language, too, will pose challenges both to trainees and to the Spanish-speaking people they serve. Utah has a lot of first-generation immigrants, so many of the adult patients and clients that professionals meet will not speak English, and they may bring along their own child to stand in as an interpreter. This can be a heavy burden for a child to bear, as she is asked to translate medical terminology or to deliver a new--and sometimes emotionally difficult--diagnosis to a parent. Vazquez urges trainees to have a qualified interpreter on hand. In some cases it is the professional's legal duty to provide one.
Both Spanish- and English- speaking family members play an important role in the program, adding to the discussion in a relaxed, open setting. Jodi Hansen has been involved in URLEND for three years. Every year trainees are surprised when she tells them two things: how much it costs to care for a child with multiple disabilities, and how overwhelmed parents can be with requests from specialists. One professional may ask a parent to do two things before the next visit, without knowing that several other specialists have also heaped their requests on the family. Hearing from parents helped the trainees understand that the parents are not negligent as much as they are overloaded.
The program has helped Hansen in a personal way. Her child's doctor is a URLEND trainee, and he has encouraged other professionals from his office to go through the program because he likes the perspective it has added to his practice.
"It's been a huge asset in our lives," she said.