Paula's Story

In 1995 Paula Franklin (not the actual consumer name), who has visual and developmental disabilities, attended a Rehabilitation Research and Training Center (RRTC) symposium given by the RRTC on Workplace Supports at Virginia Commonwealth University (RRTC-VCU). It was during the symposium that Franklin attended a self-advocacy leadership training track focused on how to use self-advocacy skills to make real career choices.

At the time of the symposium, Franklin was unemployed, unmotivated, and unhappy in her domestic relationship. As she listened to presentations on employment rights, how to access employment services, and ways to use self-advocacy skills to take charge of her life, Franklin became more confident. Shortly after attending the training and using information from the sessions, her life took a dramatic change for the better.

Currently, she has a job with a public relations firm, is serving in a leadership role within her local disability services board, has become an accomplished public speaker through a Toastmasters club, and has gained custody of her children. Franklin is a shining example of a person becoming empowered through self-advocacy training—training she first learned about from the RRTC symposium.

The RRTC-VCU project identifies factors in the work environment that inhibit or enhance employment outcomes and shares the results with the business community; analyzes financial incentives to find those that encourage enterprises to hire or retrain workers with disabilities; measures the effectiveness of disability management and return-to-work strategies; assesses employers' need for information, training, and resources; conducts interventions that respond to employer needs; and determines the impact of changes in work structures such as telecommuting and self-employment on the employment outcomes of people with disabilities. This story was submitted by Ed Turner.

Antoinne's Story

May 19, 1994—the day before his high school graduation—was the day Antoinne Jones was involved in an automobile accident and sustained his spinal cord injury.

After graduating from the University of Missouri he began looking for a job in the business, financial, or real estate fields. "Looking for work had been a little rough and frustrating," Jones said. "Every employer wants you to be able to type 35–45 words per minute, and realistically I'm not going to get there. There are many individuals like myself who have the education and experience—all we need is a chance."

While job-hunting, Jones was working with a program called Think First, speaking to teenagers about the consequences of speeding and not wearing a seat belt. "Talking to teens was beneficial to me for two reasons," he says. "One, it gave me an outlet to get some frustration about my disability off my chest. And two, it gave me an opportunity to help prevent others from making the same mistake."

After hearing about Jones and his ability to get his message across effectively, the Missouri Model Spinal Cord Injury System (MOMSCIS) staff in Columbia, Missouri, hired him to help present the Individualized Management of Personal Assistant/Consumer Teams (IMPACT) Workshop to consumers and assistants. They believed his years of experience in dealing with personal assistants would be very beneficial to the project. He helped Kris Hagglund, PhD, and Michael Acuff, MD, present the consumer-assistant communications portion of the program at two workshops in Columbia in the fall of 2001.

"It can be very difficult to find the right personal assistant," Jones said. "A lot depends on your personality."

Jones also helped facilitate another workshop in March 2002 in St. Louis with MOMSCIS staff. "This workshop helps the consumer become more assertive and to have better communication with their assistants," Jones said. "Some consumers like to be passive and not tell their assistants what to do. These problems [that are discussed in the workshop] come up regardless—a gap in the bridge between two people."

The MOMSCIS staff was so impressed with Jones that they offered him a part-time position in May 2002. "I was pleasantly surprised when they called. I wanted to prove to everyone that a person with a spinal cord injury could be a valued member of a professional organization," Jones said. His position title was Editorial Assistant II, and his duties included updating MOMSCIS publications, data entry, and seeking new ideas for future projects. Now the position has expanded to include writing newsletter articles, conducting a monthly focus group with patients at Rusk Rehabilitation Center in Columbia, taking consumers to extracurricular activities (MU basketball and football games), and assisting with financial duties. Now Jones is a vital member of the MOMSCIS staff and hopes to be one for a long time.

"It's good to have the opportunity to put my education to use and to learn about MU's fiscal operations. This is not what I had envisioned myself doing coming out of college, but maybe this is what all the tough times I've been through was for, helping others with my same disability live a productive life," Jones said.

The MOMSCIS project develops, implements, and evaluates innovative research promoting independent living and community integration among persons with spinal cord impairment; studies the effect of a consumer-directed personal assistance services training intervention on consumer satisfaction, independent living, and community integration; and provides information on preventing and treating secondary medical conditions, employment-related issues, communication styles and strategies, assertiveness, and team building. This story was submitted by Larry Nossaman and Antoinne Jones.

---

Barb's Story

When Barb Schoen was 35 years old, she sustained a complete cervical spinal cord injury as a result of a motor vehicle accident. Schoen refers to the injury as a "wake-up call" intended to get her on the right path.

The first year following her spinal cord injury was filled with health maintenance, equipment decisions and purchases, and home modifications. During her rehabilitation at the University of Michigan Health System, she made many special connections with the staff and rehabilitation team and was first introduced to the NIDRR-supported University of Michigan Model Spinal Cord Injury Care System. It was there she met Denise Tate, PhD, co-director of the Model SCI Care System and director of training in rehabilitation research in the Department of Physical Medicine and Rehabilitation.

Schoen decided to take advantage of funding available to people with disabilities and returned to college to obtain an advanced degree. She entered the rehabilitation counseling program at Michigan State University. Dr. Tate offered her a practicum and then an internship and assisted Schoen in securing a joint internship at the Ann Arbor Center for Independent Living.

During her final semester in the master's program, Dr. Tate encouraged Schoen to apply for a research fellowship with the NIDRR Advanced Rehabilitation Research Training Program under Dr. Tate's mentorship. She seized the opportunity.

In addition, Schoen was asked to serve on the University of Michigan Model Spinal Cord Injury Care System Advisory Committee. She had no idea that this would lead her back to the university hospital to offer newly injured individuals her wisdom and comfort as they faced the same daunting task of getting life back on track after a spinal cord injury.

Schoen currently serves as co-investigator of the Stress and Coping over the Life Course: A Perspective on Women with Spinal Cord Injury NIDRR Field-Initiated Research (FIR) grant and is responsible for conducting in-depth semi-structured interviews with study participants. She recently presented a preliminary analysis of these women's social networks at the American Association of Spinal Cord Injury Psychologists and Social Workers National Conference in Las Vegas

Working closely with Claire Kalpakjian, PhD, project manager of the Model SCI Care System, Schoen will serve as co-principal investigator and project manager of a newly funded project, the University of Michigan Spinal Cord Injury Rural Health Education Initiative. Supported by the Christopher Reeve Paralysis Foundation and NIDRR funds, this project will focus on outreach and dissemination of educational materials developed by the UM Model SCI Care System to rural residents of Michigan.

With direction from Dr. Tate, Schoen published two consumer articles during her NIDRR fellowship. "Finding Freedom," published in ADVANCE for Directors in Rehabilitation in 2003, provides a historical perspective of the Model Spinal Cord Program and the Centers for Independent Living. "In Search of Mentors: Beyond the Casual Encounter," published in New Mobility in 2003, identifies the need for and potential benefits of a mentoring relationship and seeks to educate and empower women to identify personal and professional goals and seek out other women for guidance and direction.

In the six years since her injury Schoen has learned that living life with a spinal cord injury, while challenging, can be rewarding. "My SCI has been a catalyst helping me to accomplish great things. I am truly thankful for the support I've received through NIDRR, first as a patient going through rehabilitation and second as a research fellow. These programs through NIDRR have had a positive and profound impact on my life," Schoen said.

The University of Michigan Model Spinal Cord Injury Care System project provides a continuum of comprehensive, multidisciplinary services for persons with spinal cord injuries, from emergency medical services to long-term community follow-up, with a focus on maintaining health; demonstrates the effects of the continuum, focusing on its efficacy in promoting employment, health maintenance and wellness, independent living, and community reintegration; and demonstrates methods of community outreach and education in collaboration with the Ann Arbor Center for Independent Living (AACIL) to reach professionals, consumers, and families involved with other rehabilitation facilities and Centers for Independent Living in Michigan. This story was submitted by Dr. Claire Z. Kalpakjian.

---

Judy's Story

At the age of 43, Judy Palmer (not the actual consumer name) was in control of her active life. While single-handedly raising her son, she worked full-time as a top accountant at a major university. She volunteered at a local hospital, exercised regularly, bowled with friends, attended university football games with coworkers, planned church functions, and went on dates. She was a person who could be counted on to get things done right and on time. Raised as an only child, she learned the requisite planning and problem-solving skills she would need to become a self-sufficient, successful adult. Palmer loved every minute of her demanding lifestyle.

In one moment, she lost control of her life. On October 19, 1993, Palmer was involved in a car accident that left her paralyzed from the neck down. As she spent time in the hospital, she experienced being told when to sleep, when to sit up, and when to eat for the first time. Worse yet, she was told that she would be bedridden for the rest of her life. This was the last straw. Through careful planning, persistence, and self-advocacy, she defied prediction and regained her hectic lifestyle, but not without grave consequences.

Since sustaining her spinal cord injury, Palmer has had four serious pressure sores, three of which required muscle transfer surgery to close up the cavernous wounds. The reason for this high number of pressure sores was not inadequate medical care; she had a wonderful group of expert attendants who were diligent and reliable. Neither were the pressure sores due to a lack of knowledge regarding their prevention and treatment; Palmer clearly knew the warning signs and symptoms of all stages of pressure sores and knew, at least hypothetically, how to treat each stage of sore. Her home and work settings were accessible and she had state-of-the-art equipment, including a motorized, reclining wheelchair with a custom-fitted gel cushion and a foam-block bed. She did not drink or smoke. Palmer seemed to be living a model lifestyle, so why did she incur so many pressure sores?

To answer this critical question, Palmer joined the University of Southern California study Daily Living Context and Pressure Sores in Consumers with Spinal Cord Injury. This 3-year qualitative study used rigorous ethnographic methods to obtain new and detailed understandings of how everyday habits and practices, culture, moment-to-moment decision making, health care policies, and uncontrollable societal forces influence pressure sore development. In Palmer's case, she was definitely in control of her life again, but she may not have been making the best choices in regard to her health-related well-being. She went to work in the morning despite the appearance of redness on her buttocks. She spent long hours in her wheelchair during the tax season and even delayed a muscle transfer surgery because it interfered with her end-of-fiscal-year responsibilities. Palmer thrived on meeting critical deadlines and the satisfaction of a job well-done. She knew her colleagues and friends depended on her, and she was not going to let them down. Eventually, however, Palmer was forced to take time off work as she spent longer and longer periods of time in the hospital, lying completely prone on a hospital bed for weeks as her body recovered from pressure sore surgeries. At this point, her compromised health began to directly impact her overall happiness and satisfaction in life. Pressure sores were preventing Palmer from being involved in any of her cherished activities. She was unhappy, and being the problem-solver she was, she decided to make changes in her life to prevent the occurrence of any more life-stagnating sores.

Currently, Palmer has prioritized her own health above any work or home responsibilities. "Work is still important, but taking care of my health is more important," she said. She voluntarily stays home from work if there is any sign of redness on her skin. She delegates many of her responsibilities to others and limits her overall time in her wheelchair. When asked how her involvement in the study may have influenced this positive transition, she admitted that talking with the staff of the Daily Living Context and Pressure Sores in Consumers with Spinal Cord Injury Study have reinforced a lot of good habits and made her more conscious of routines. For Palmer, health and happiness are now inextricably related, and she is no longer willing to chance the formation of a new pressure sore. She has been free from sores for two years, and she plans to be pressure sore-free for life.

The Daily Living Context and Pressure Sores in Consumers with Spinal Cord Injury project examines the beliefs and practices underlying the activities, habits, and daily routines of 18 ethnically diverse consumers with SCI to document how personality, lifestyle patterns and choices, and environmental context interact in the lives of consumers to influence the development of pressure sores; investigates how pressure sores can be minimized through personally tailored adaptive strategies; and develops applied products, including a consumer-oriented self-help manual, a set of guidelines for rehabilitation practice, and a lifestyle-oriented occupational therapy treatment model. This story was submitted by Stephanie Mielke, with assistance from Dr. Jeanne Jackson.

---

Matthew's Story

The Bohl family loves the lifestyle they have in their small farming community in North Dakota, yet they are also familiar with the struggle shared by many rural families in terms of accessing health care. The Bohl's son, Matthew, was born with spina bifida.

Because specialty pediatric services are not available in their community, Bohl and his mother, Twyla, routinely travel long distances for the services that Bohl, now 13, needs.

Though he works with a physical therapist and a paraeducator at school, Bohl also sees a multidisciplinary team of doctors and therapists in Grand Forks, a 3-hour drive from the Bohl's home. On numerous occasions, Bohl's mother has taken him for treatment at the Mayo Clinic in Rochester, Minnesota. After each of these trips, she says she found it difficult to relay the complex information that she received from various doctors to her son's providers at home. She also felt that a lack of coordination among Bohl's many providers was slowing his progress.

In 1999, while attending a State Child Health Insurance Program (SCHIP) conference in Phoenix, Bohl's mother was intrigued by a presentation on the topic of telehealth. Thinking it might be a useful mechanism to help with some of the issues around her son's care, she decided to learn more about it. She contacted the University of North Dakota's School of Medicine and learned that they had equipment for videoconferencing. Videoconferencing allows clients or their health-care providers in rural areas to communicate in real time over a television monitor with specialty providers at a distant location. This can save families both time and money.

The opportunity to convene a videoconference for Bohl came in a slightly different way when a doctor recommended that he receive a special type of brace—a parawalker—that would enable him to stand and walk. Because Bohl would need to be fitted and trained to use the brace, it would still be necessary for him and his mother to make a trip, this time to Arkansas Children's Hospital in Little Rock, where they would stay for a week.

However, his mother knew that Bohl's medical and school providers would all have to learn how to help him use the brace as well. Even his physical therapist had not seen this particular piece of equipment before. "I wanted collaboration between my son's school and the medical personnel working with him, including his multidisciplinary team," said Bohl's mother. Before leaving for Arkansas, she arranged to have videoconferencing equipment sent from the University of North Dakota to the local hospital. Bohl's physical therapist helped coordinate a videoconference connecting his providers in North Dakota to the team working with him at Arkansas Children's Hospital.

Bohl's doctor and therapists, school superintendent, and teacher and paraeducator attended the one-hour videoconference. Physical therapy students from the University of North Dakota also linked into the videoconference from Grand Forks to observe.

During the session, the team in Arkansas answered questions from Bohl's providers, demonstrated how to use the brace, and explained what to expect in terms of the assistance he would need in order to progress. Bohl was able to demonstrate how he was walking in the brace. "It was valuable to see him achieve a new skill," said his physical therapist, referring to Bohl's walking upright and standing independently.

As a result of the videoconference, Bohl and his physical therapist felt they were able to connect better upon his return home. "Matthew was reassured that I knew what to do since I had watched him over the video in Arkansas," his physical therapist said.

Bohl's mother was also impressed with how smoothly things went when her son went back to school with the brace. "It might have been because we included the school from the beginning. My whole team got the same information at the same time as I did," she said. "It was a huge relief not to have to go home and show everyone what to do."

During the last year, Bohl's mother has taken her experience with telehealth in a new direction. Through her involvement with the Family Voices organization, she was introduced to researchers from Georgetown University Medical Center who are engaged in a study to examine the appropriateness of telehealth as a service delivery mechanism for children with special health-care needs living in remote communities. The study is at the NIDRR-supported Consortium for Children and Youth with Disabilities and Special Health Care Needs.

Bohl's mother now serves as a consultant to the project and is a member of the research team interviewing families and providers in rural areas about their experiences using telehealth. Partnering with a family member on this research study has proved invaluable, says Liz Williams, one of the project investigators.

"There was so much information in her story that helped us think about how we wanted to direct the research," Williams said. "Twyla always brings a perspective that is not quite the same as ours. Through her involvement with the project, we've learned to be better partners with each other, better researchers, and better at getting information that can really benefit people."

The Consortium for Children and Youth with Disabilities and Special Health Care Needs project investigates access issues and strategies to improve outcomes in pediatric rehabilitation; examines characteristics of health plans and access to services for children and youth with disabilities and spinal health-care needs; promotes promising practices in transition from pediatric to adult health care systems; develops effective telehealth strategies for interdisciplinary service delivery in remote areas; and provides training in assistive technologies addressing needs of children and youth with disabilities and special health needs. This story was submitted by Maria Woolverton.

---

Shirley's Story

Shirley A. Dyer recounts her personal journey of working with NIDRR-supported projects and with Dr. Sylvia Walker at
Howard University.

It was June 1981, and there I was being swept up in a dream of becoming a student at the great Howard University. I was accepted as one of 13, out of a total of 63 applicants, to work for my bachelor's degree through Howard's University Without Walls program. What an opportunity! But at that time, I couldn't see the greater good—the opportunity to raise the quality of life for my family. I was 41 years old and married for nearly 23 years at that time. Our son was 12 years old, and our daughter, 8.

We learned when our daughter, Shielda, was nearly 3 years old that she was autistic. We had always been responsible for caring for someone in our home—particularly my husband's mother. The overlapping events of my own mother's illness and Shielda's autism fit right in without us breaking a stride. Early on, even before I had a name for it, I started reading about Shielda's language development and her symptoms—glaring, rocking, noise-making, repetitive behavior, echolalia

Naturally, my greatest interest at Howard became special education. I met the late Dr. Sylvia Walker and asked her to be my academic advisor. She was the director of the Center for Disability and Socioeconomic Policy Studies (CDSPS) and principal investigator for the Howard University Research and Training Center for Access to Rehabilitation and Empowerment Opportunities (HURTC), a project sponsored by NIDRR.

The benefits my family received through this NIDRR project were not the kind that would have been announced to the world but were more grounded in our daily lives. Dr. Walker quickly included my family in her project's efforts to involve consumers. In 1981, with me as its president, the HURTC Parents Advisory Committee (PAC), a support/awareness group made up of parents of children with disabilities, was established. Professional speakers were invited to our forums to inform and train us. In turn, we helped others through seminars and presentations at schools, churches, Howard classrooms, and local and national conferences. We produced a newsletter, which highlighted personal experiences, success stories, and other information to promote awareness about disabilities and how families are affected.

Dr. Walker formed a group called "The Mighty Achievers." She saw this as a learning opportunity for the children and arranged for HURTC staff members to provide mentoring and activities for the children while their parents (PAC) met. This was beneficial to both the children with disabilities and their siblings. They were encouraged to participate in other activities and organizations over the years. Some were found to have special talents and were given opportunities to perform at project events. Several graduated from high school and college.

Around 1990, Dr. Walker assigned a research assistant to come to my office to mentor and tutor Shielda in a lab for two semesters (my daughter was delivered, by bus, from her program to my job). This was extremely beneficial to Shielda in terms of developing communication and social/emotional skills.

Shielda was one of the youth given an opportunity to work in the center office. During 1999, after Dr. Walker learned that Shielda had been in an office training program through the ARC (as part of her transition from school to work), she allowed her to work as a volunteer in the center office to continue her office training. Near the end of that year, Shielda was hired as a paid part-time secretarial assistant with the center's other NIDRR project, Leadership Development: A New Generation of Effective Leadership, a job she maintains today.

This NIDRR experience has impacted positively on Shielda's development. It has also enhanced my education about disabilities; increased my ability to intelligently express this knowledge as a parent; provided opportunities for me to share my knowledge with others through personal consultations and classroom and conference presentations; and helped remove the stigma that many families encounter.

Nearly 23 years have passed since I met the late Dr. Sylvia Walker. In the interim, with my husband becoming 100 percent disabled as a result of total blindness, Alzheimer's disease, diabetes, arthritis, and other associated disabilities, I still have a lot of hope for my daughter. She is nearly 31 years old now, and she and my family have continued to be nurtured through these NIDRR projects.

The HURTC project identifies methodological problems determining the rehabilitation needs of persons with disabilities from minority backgrounds and proposes strategies to address these methodological problems; identifies, develops, and evaluates rehabilitation methodologies, models, and interventions for specific minority groups and the implications for rehabilitation research, training, policy development, and services; assesses the outcomes of rehabilitation for persons with disabilities from minority backgrounds as measured by two or more variables (such as functional abilities, wellness, employment, health/wellness, and psychosocial status); and analyzes, using research findings, the affects of minority status on rehabilitation outcomes. This story was submitted by Shirley A. Dyer.

---

Timothy's Story

Timothy Pruce, a survivor of a traumatic brain injury (TBI), is a paid staff member of the New York Traumatic Brain Injury Model System (NYTBIMS), a NIDRR-supported activity that combines clinical care and focused research. Pruce is responsible for coordinating advocacy and peer support. He meets with newly injured individuals and their families at Mount Sinai Medical Center and Elmhurst Hospital, where he provides them a packet of information about TBI resources in the metropolitan area, including materials from the State Vocational Rehabilitation Agency, the local independent living centers, and the state and national brain injury Associations. He speaks with them as a survivor, and as he discusses life after TBI, he gives a reality to the potential for recovery. He answers questions and makes himself available for further contact via telephone. His phone number, for many families, has become an additional resource aiding them in the first months after injury. Pruce also facilitates weekly sessions in the day treatment outpatient program. There his focus is on reintegration into the community. He provides peer mentoring, resource literature and information on resources. He is a member of the inpatient TBI support group, both as a survivor of TBI and as an advocate and peer mentor. Below, in his own words, he describes his road to recovery.

Sustaining and surviving a TBI has changed my life in many ways. One of the biggest and most difficult changes had to do with my job and career. Prior to my injury, I had been a regional public relations manager in Southern California.

After I experienced an injury in a car crash in 1994, my immediate concerns were rehabilitation and therapy. This was a long, tedious process, and at a certain point it became painfully clear to me that I could no longer work in the same capacity I had for the previous eight years. Fatigue and memory and focus problems, among other things, made it nearly impossible for me to work full-time, let alone function at the high level I had before my accident. At one point, a vocational counselor told me that I shouldn't really get my hopes up in terms of finding meaningful employment. As I neared completion of my outpatient day program, I realized that I would have to find something to do, to establish a new career path, if for no other reason than to keep me busy and give me structure and routine. It seemed to me that the obvious choice would be doing something that I knew a lot about firsthand—something in which I had a deep personal interest. I wanted something where I could utilize the skills I had left, which in my case is talking ably to people. I also wanted to do something that would affect other people's lives. I decided that I wanted to become an advocate for people with TBI.

I had no idea how I could do this. However, at the time I had just moved to New York City and was looking for volunteer work. Through the Statewide Head Injury Program in Massachusetts, which had been instrumental in my rehabilitation, I had heard that there was a research group at Mount Sinai Medical Center that gave opportunities to people with TBI; in fact, this research group is another NIDRR-supported project that was focused on doing research to aid in the community integration of people with TBI. The volunteer position they gave me provided an opening—I just answered phones and made copies. As time went on, I was given more responsibilities, like scheduling interviews of people with TBI to find out about their lives. I also conducted many of the interviews after some training. I had access to a lot of different people and organizations within the community of people with TBI, including advocacy organizations and groups. I even got paid. Working with this project has given me the confidence and opportunity to become a guest lecturer at a local college speaking to Master's degree candidates in social work about experiences and perspectives as a TBI survivor.

In a strange way, my education in becoming an advocate has been similar to my rehabilitation experience. It took place slowly, one day at a time, over a long period and required assistance and support of people who showed a willingness to help and nurture. Now, almost five years after arriving in New York and at Mount Sinai, not only do I refer to myself as an advocate, but so do health care professionals who I work with regularly. My story and my current role in the New York Traumatic Brain Injury Model System gives me the opportunity to tell people that life goes on after TBI, and I can be an example and show them in person.

The NYTBIMS project advances the understanding of TBI and its consequences and improves rehabilitation outcomes; studies depression and fatigue, impairments that limit participation in community and vocational activities, and examines the efficacy of sertraline (Zoloft) in the treatment of depression and anxiety after traumatic brain injury; and investigates the components, consequences, and correlates of post-TBI fatigue and evaluates the benefits of modafinil (Provigil) to treat fatigue in individuals with TBI. This story was submitted by Dr. Teresa Ashman.

---

Tucker's Story

His football teammates call Tucker Hoge the "miracle man," and when he takes off his helmet you see why. A thick scar stretches from the top of his head to behind his left ear. It marks the spot where a neurosurgeon sawed open his skull after a January 2003 rollover car accident left the then-16-year-old with a near-fatal traumatic brain injury (TBI).

After undergoing lifesaving neurosurgery, which involved removing a part of his skull to accommodate brain swelling, at the University of Mississippi Medical Center, Hoge transferred to Methodist Rehabilitation Center's nationally recognized center for brain-injury treatment and research, home of the NIDRR-supported Traumatic Brain Injury Model System of Mississippi (TBIMSM).

"Because Methodist is one of only a few Traumatic Brain Injury Model System sites in the United States, Hoge was able to benefit from the hospital's participation in TBI research projects," said Dr. Mark Sherer, director of neuropsychology at Methodist. "Just the fact that patients are involved in projects here means there's more scrutiny, more communication, more coordination, and more follow-up. The knowledge we gain through research can immediately be applied to patient care."

The consequences of a TBI are far-reaching because it can affect someone physically, mentally, and emotionally. Families become frustrated because no one can tell them if or when their loved one will recover.

Two weeks after the accident, Hoge was brought out of the coma he was placed under to prevent further brain swelling. "We didn't know if he would know us," said Dawn Hoge, Hoge's mother. But he soon showed signs of his old self, even though a trach tube kept him from speaking.

"A key part of his recovery is because he got early rehab as soon as he was medically stable," said Kristi Goodson, a nurse practitioner for the brain injury program at Methodist. "That allowed us to take advantage of the healing brain. You usually see the most rapid improvement during the first six months."

To survive a brain injury, it helps if you're young and in good health prior to the injury. As someone who had been playing sports since age 3, Hoge was in top condition. He also had the personality to persevere. "Pain has never been an issue for Tucker," said Cam Hoge, Hoge's father. "He played soccer and football with a broken foot. When we were at rehab, I knew he was going to beat this thing."

As Hoge worked with physical, occupational, and speech therapists to improve his abilities, staff began educating his parents about what to expect. "The day they get here, the biggest issue for parents is: Will their child be able to go back to school?" said Goodson.

Many times the answer is yes, but staff members generally recommend a conservative time frame for a return to the classroom. "We don't want to send someone back if they are not ready to benefit," Dr. Risa Nakase Thompson said. Goodson agrees. "If we put someone back in the 12th grade and they're functioning at 8^th-grade level, we've set them up to fail," she said.

To help get back up to speed, Hoge followed his stay at Methodist with a stint at the hospital's Quest program, Mississippi's only community reintegration program for TBI victims. There he worked in the gym on his physical stamina and in the classroom on his cognitive skills and endurance.

"He had to build back to higher levels of attention and memory," explained Quest speech therapist Cassie Means. "After a head injury, we say you have to ‘remember to remember.' He was taught strategies such as using a day planner, written cues, checklists, repetition, and visualization."

"We laid the groundwork for a smooth transition back to school," said Quest admissions coordinator Joyce Leverenz. "In addition to working with Hoge and his family, we also provided the school staff with recommendations on how best to work with Hoge during the school year."

In more rural areas of the state, Hoge might not have survived the wreck, let alone recover enough to try out for the Brandon High School football team some 7 months later. But Hoge was fortunate to live near two medical centers with the highest standard of care for brain injury patients, one of which houses the TBIMSM.

"God spared Tucker for a reason," said his mom. "I think it was to help kids wake up and realize that life is a gift. It's not something you can take for granted or throw away by being careless."

The TBIMSM project investigates two medications with differing neurotransmitter effects in a parallel-group, double-blind, placebo-controlled, randomized] trial; studies the use of transcranial magnetic stimulation (TMS) to improve the characterization of motor disorders after TBI; and conducts a trial of an intervention to improve the therapeutic alliances between persons with TBI and family members and professional staff serving persons with TBI in a post-acute brain injury neurorehabilitation program (PABIR). This story was submitted by Jim Albritton.

Anthony's Story

In January 1997, Anthony Gamble was in an automobile accident that left him in a coma for 38 days. Once he was stabilized, Gamble left Detroit Receiving Hospital and was transferred to the Rehabilitation Institute of Michigan (RIM), where he completed both his inpatient and outpatient programs.

Gamble underwent therapy to improve his balance, walking, speech, and coordination. The brain injury he received from the accident also left him with some memory loss, which he still continues to work on today.

"It was something I never planned on," Gamble said. "I got tired of them always asking me what day it was, but when I look back, I realize it was all for my own good."

Today Gamble participates in RIM's Traumatic Brain Injury (TBI) Peer Mentoring Program, a research project led by the Southeastern Michigan Traumatic Brain Injury System (SEMTBIS), one of the TBI Model Systems supported by NIDRR. As part of the program, a newly injured TBI patient is paired with a "seasoned" patient who talks with his "buddy" a couple of times a week to offer advice, support, and friendship.

"This program is good because they make you want to get better for yourself," Gamble said. "It gives you someone to talk to, someone to listen to, and someone to just be there with you. I had family and friends, but [peer mentors] can help in ways family and friends can't because they haven't been in your shoes.

"Helping others keeps me on my p's and q's. The patient I'm working with is trying to get better," said Anthony. "I'm showing him how the medical center and he himself are going to pull him through this. This mentoring program is really good. I like participating in it because I like giving back what help was given to me."

The SEMTBIS project conducts projects developed with the help of SEMTBIS consumers and other members of the Detroit community; studies whether social support acts as a moderating influence on the well-being of persons with TBI; examines correlates of driving after brain injury (barriers, fitness to drive, and community rapport); and collects and contributes data to the uniform, standardized national database. This story was submitted by Deborah Wood.

---

Catherine's Story

In 2000, Catherine Arnold became a participant in a randomized controlled study, called the Home Monitoring Study (HMS), conducted by the NIDRR-supported Rehabilitation Engineering Research Center on Aging (RERC-Aging)on the effectiveness of providing assistive technology and remotely monitoring self-care needs. At the time, she was a 75-year-old widow who
used a wheelchair.

Arnold experienced the effects of post-polio syndrome and osteoporosis at her rotator cuffs, causing moderate pain in chair transfers, opening containers, washing her body, and putting on a shirt. She lived alone in her own home. Due to her restricted mobility, she could not attend church and other activities. She had five children, who are all alive. Her daughter and a grandson helped her a few times a week.

In accordance with the study, Arnold was randomly assigned to be in the treatment group. She received necessary assistive devices, home modifications, a computer with a Web-camera, an Internet connection, and computer education.

Here, in her own words through a monthly e-mail report, are her perceptions of the study.

6/30/00 "Absolutely no complaints. All goes well with increased interest in use of computer and all its information. I'm especially enjoying e-mail contact."

8/30/00 "As I become more acclimated to the aids and gadgets you provided, I find less discomfort in my shoulders. Also, I keep the flip light with me at all times; it's so good for security and locking up at night, as well as illuminating the inside of the oven."

10/27/00 "Since coming under the guidance of the University at Buffalo's Aging Project there has been a huge change in my lifestyle. I've been able to take charge and have confidence to reach out and communicate and do for others. It is gratifying to be requested to do crafts or make something from the kitchen for friends and family. I am always happy to go out, but if circumstances prevent that, I have plenty to do for my pleasure and contentment."

12/27/00 "I seem to have acquired more strength and endurance. The holidays have been very special and magical. In reflecting on the past year, the HMS program has given me courage and tools to do things that were previously impossible. Thank you for seeing the potential I didn't know existed."

1/30/01 "Life is good due in large part to the confidence and assurance I've acquired. At this point in life, one does not expect to gain self-esteem, learn creativity, and joyfully, once again have the strength and ability to care for my adored Julia, my great-granddaughter, and have an influence in her life and development. You've given me the tools to work with, thereby increasing my opportunity to give to others and be of service."

3/1/01 "The Print Shop program has given a great assist to my hobby of greeting card makingÉI LOVE it. It has opened a new world of technology for something I so enjoy doing. If it's possible to spoil a 76-year-old woman, you have. It's a lovely feeling."

4/1/01 "The computer has since become an extension of my life. It is always there for me to entertain, enlighten, and be a companion."

5/1/01 "A year ago, my biggest problem was frustration. Having been presented with the tools and ability to properly use them, along with your support and advice, the frustration has been minimal. All areas of assistance have combined to give me a degree of independence. I have learned that I can solve most difficulties myself.

"At one time a few years ago, I did some journaling, and I recently read it. The difference is unbelievable. The self-pity, unhappiness, and pessimism are long a thing of the past. With your helpful direction and the gentle nudging of family, I have found my niche. My happiness is my own responsibility, and I make use of what I have now and learned to maintain that state for myself and for those around me. This change in attitude and demeanor has brought its own special rewards."

Funding for the RERC-Aging ended in 2001. This story was submitted by Dr. Machiko Tomita and Kathleen M. Stanton.

---

Elizabeth's Story

The curtain opens, and the concert begins. Elizabeth Botner, a 16-year-old violinist, is well-prepared to play her part thanks to her personal determination, support of teachers and family, and Braille scores created by GOODFEEL from Dancing Dots, the world's first Braille music translator.

Botner began studying the violin at an early age. She was the only blind performer in her school's orchestra. Her music director felt strongly that Botner should learn to read music like the other students in the group. Of course, for Botner, scores would be written in Braille music notation. She and her mother learned about Dancing Dots, and with support from their local Lions Club, they obtained the GOODFEEL software to speed the process of converting printed violin parts into the equivalent music Braille.

Botner is one of thousands of students who are blind who can participate more fully in school ensembles and general music classes by knowing the score created automatically by GOODFEEL in standard music Braille.

GOODFEEL, first released in 1997, is the first in a series of products that broaden musical, educational, professional, and even recreational opportunities. Freedom Scientific, a company based in St. Petersburg, Florida, that manufactures and markets innovative technology-based products and services, carries products from Dancing Dots to complement their full line of assistive-technology products.

In 1993 NIDRR provided support for Dancing Dots Braille Music Technology, L.P., to create a software prototype of what would become the GOODFEEL Braille Music Translator. A Small Business Innovation Research (SBIR) Phase II award helped complete work for the first version of GOODFEEL, which was released for the DOS operating system in July 1997.

Dancing Dots has won subsequent SBIR funding to improve usability of its Windows version. The current GOODFEEL Braille Music Translator SBIR project will integrate SharpEye's scanning functions and Lime's editor with GOODFEEL to create a single application that allows scanning, editing, and transcribing of a printed page into the equivalent music Braille through a single-user interface equally accessible to both sighted or blind users. GOODFEEL is now in use throughout the United States and in 27 other countries. This story was submitted by William R. McCann.

---

Gareth's Story

Gareth Prebble is 30 months old. Like many children his age, he loves to read books with his mom or dad and play games like Go Fish or Concentration. However, Prebble faces significant challenges in his life. Due to a trauma during birth, he has cerebral palsy.

Prebble has very low muscle tone and is functioning at about a 4-month level in both his fine and gross motor skills. He had no gag reflex shortly after birth and to this day cannot swallow consistently. Because of this, he has a tracheotomy. He cannot speak due to the trach, and his low muscle tone inhibits his ability to use sign language. However, Prebble is not delayed cognitively.

When Prebble was 22 months old, his parents took the initiative to start a simple picture communication system with him consisting mostly of photographs of all his toys so he could choose with which toy he wished to play. He learned this system quickly and was happy to at last have some small way to communicate.

With the help of a speech language pathologist, his parents introduced some simple voice output communication aids to him as well. He was able to use all of these with ease, but it was clear that none of these devices provided the child with enough opportunities to communicate, nor did they allow him to communicate on his own.

When Prebble was 24 months old, his speech language pathologist introduced him and his family to Janice Light, a professor in the Department of Communication Sciences and Disorders at Penn State University. Dr. Light is the principal investigator on a research grant supported by NIDRR as part of the Rehabilitation Engineering Research Center on Communication Enhancement (AAC-RERC).

Through the NIDRR-supported research project, Light, Kathy Drager, and their colleagues investigate new ways to design AAC technologies to reduce their learning demands and increase their appeal for young children like Prebble. With improved, child-friendly designs for AAC technologies, it has been possible to intervene with children at much earlier ages to maximize their language development and communication.

As participants in the research grant, Prebble and his parents worked with the research team in weekly sessions at their home to develop appropriate AAC assistive technology to meet his needs, to implement these systems within his daily life, and to evaluate the impact on his language and communication development.

Prebble made rapid progress learning to use his new AAC assistive technology. When he first started in the research project at 25 months of age, he had approximately 50 pictures that he used to communicate, mostly to request favorite toys. He typically took approximately one turn in 5 minutes of interaction. After 12 weeks of intervention through the study (at 28 months of age), he had acquired more than 400 words/concepts. He learned to express a wide range of language concepts including people, actions, objects, places, social words, descriptors, questions, and relational concepts. In fact, he learned approximately 4–5 new concepts a day, keeping pace with rates of typical language acquisition. He began to combine concepts into two- and three-word sentences to communicate more complex ideas. He was much more active and engaged, taking more than 10 times the number of turns that he used to take in interactions with others. At 30 months of age he had over 700 words and concepts.

"The use of AAC technology was a natural fit as Gareth has inherited his father's love of computers," said Prebble's mother. "His enthusiasm was evident from the first time Janice brought the system during a visit. At first, the system was programmed with a few of Gareth's favorite songs and books. Gareth thoroughly enjoyed his new ability to sing and read through the system, and we delighted in listening to him!"

More concepts and choices were added to his system, including menus and levels of options, to accommodate his growing vocabulary. He started creating two- and three-word sentences using strings of images such as "bus go fast" in describing how he wished us to manipulate his toy bus.

Prebble now uses his AAC system to communicate with a variety of people. He can talk with other children, sing in groups, and use his system to engage in imaginative play. Others around him are now starting to realize his strengths and abilities and are interacting with him more frequently and for longer periods.

The AAC-RERC project advances AAC research in literacy, telework, specialized vocabulary, contextual scenes and intelligent agents; conducts research on improving interface performance and monitoring/simulating communication performance; enhances AAC development through projects that monitor emerging technologies, standards, and policies; studies AAC WebCrawling and ways to utilize the role of listeners in AAC interactions; explores the use of residual speech, dysarthric speech, gesture recognition, and brain interface technology; educates AAC stakeholders through the State of the Science Conference, AAC-RERC Web site, Webcast series, the ACETS Online through E-Coaching program, high school training, and the AAC-RERC Writer's Brigade; and shares information with stakeholders through the Web site, conference presentations, journal articles, exhibits, Webcasts, electronic mailing lists, the Augmentative Communication News and Alternatively Speaking newsletters, and other media. This story was submitted by Dr. Janice Light.

---

Gina's Story

Gina Jones (not the actual consumer name), the first child of a young couple from a small town in New York, was just 8 months old when her parents took her to a prosthetic shop in a nearby city. She was born with partial upper limb absence on one side. The prosthetist in the local limb shop heard that a new type of infant artificial hand called the Infant Easy-Feed Hand had been developed under a grant from NIDRR at the Rehabilitation Engineering Research Center on Technology for Children with Orthopedic Disabilities at Rancho Los Amigos National Rehabilitation Center in Downey, California. The prosthetist contacted the center and learned that they were about to start a clinical evaluation of the new hand and Jones was a good candidate for the study.

Jones wore the hand regularly throughout the 3-month evaluation. She used it to support her body, to clasp objects, and later to hold toys in her grasp while she played. The Infant Easy-Feed Hand allows her to push objects into the hand without having to operate a cable or other control system. Jones was too young to use a cable-controlled device, so this hand suited her well. Having a hand for their daughter was a big adjustment for her parents, whose relationship had been strained in the past. At first, having a child with a limb deficiency seemed like an overwhelming problem, and they worried about their daughter's future. Jones' father was an athlete, and having a child with a disability was hard for him to accept.

Jones' sunny personality and early use of the new hand became the highlight of family pride. The family even used the child's photo, showing her new hand featured prominently, on their holiday card. The Infant Easy-Feed Hand taught Jones that she does, indeed, have two hands and both of them can hold objects. At the end of the clinical evaluation, she was still wearing and using the Infant Easy-Feed Hand.

As Jones grows, she will need to have the prosthetic socket replaced. Also, she will need a more sophisticated hand when she can understand how to operate it. The RERC on Technology for Children with Orthopedic Disabilities is developing a toddler version of the Easy-Feed Hand for children who are ready to advance to a more functional device but still want a natural-appearing hand.

The RERC on Technology for Children with Orthopedic Disabilities conducts research to expand knowledge relevant to children with orthopedic disabilities; disseminates information regarding devices, interventions, and strategies to increase manipulation, mobility, and play/recreation activities; develops and tests prototype devices and transfers proven prototypes to the marketplace; and trains engineering students about needs of children with orthopedic disabilities. This story was submitted by Julie Shaperman.

---

Homer's Story

In March 2001, the family of Homer Ganz, a 102-year-old man residing in a Buffalo nursing home, contacted the University at Buffalo.The cause for their inquiry rested in the fact that Ganz repeatedly fell from his wheelchair while attempting to transfer to and from his chair. His family needed to find a solution to this problem before he was seriously injured. The fact that Homer was 102 years old reinforced the need for finding a solution to this obvious problem—and finding it quickly. The situation had reached a state of urgency due to the fact that Homer was no longer strong enough to engage his wheelchair's locks completely or would sometimes forget to try.

Personnel of the University at Buffalo's Center for Assistive Technology fielded the initial inquiry by the Ganz family, but knowing of no product available in the marketplace to address Homer's need, forwarded the inquiry to Jim Leahy, project manager for the Rehabilitation Engineering Research Center on Technology Transfer (T²RERC) Supply Push Technology Transfer project. The Supply Push project's mission is to facilitate the introduction of new products and technologies into the marketplace benefiting persons with disabilities.

In an initial competitive product search, Leahy and his team were unable to identify any automatic wheelchair braking systems that would prevent a wheelchair from rolling both forwards or backwards during user transfers. However, he believed this issue was important, so rather than cease his team's search, he took it to the next level and had his team perform an Internet patent search through the U.S. Patent and Trademark Office's Web site for the type of device Ganz needed.

Through this search, the Supply Push team was able to identify a newly issued patent on an automatic braking system for manual wheelchairs that would address Ganz's problem. The patent was issued to an Indiana resident who happened to be a regional operating officer for 10 nursing homes in the Indiana and Illinois area. He had observed firsthand the need for this type of device and had invented it to address the needs of the residents in his nursing homes. He had only a crude prototype, but it worked and was a valid proof of concept model.

Knowing the need for this device, Leahy forwarded a device intake package to the inventor for submission of his device to the T²RERC for commercialization assistance. Once the inventor had completed the submission package and forwarded it along with his working prototype to the T²RERC, Leahy's Supply Push team went to work. The team conducted its standard marketing, technical, and consumer evaluations on the device. Consumers, evaluating the device, immediately embraced it, while the technical review revealed a significant need for refining the prototype before it could be submitted to potential licensing companies.

In conjunction with the inventor, the T²RERC went about redesigning the braking system. Upon completion of the redesign, the inventor was so impressed by the work the T²RERC had done that he requested the T²RERC make 10 copies of the new system so he could purchase them for use at his facilities. He donated one of those 10 units he purchased to Ganz.

The T²RERC followed up with Ganz after one year of using the wheelchair braking system. Homer indicated that he had not fallen out of his wheelchair with regular daily use of the device. As of July 2004, Homer is no longer able to use his wheelchair due to his medical condition, but he is still going strong and enjoying life at 105 years old.

The T ²RERC project identifies critical success factors in assistive technology transfer cases and traces outputs and outcomes of a variety of federal technology transfer programs; provides a context for transfer opportunities involving the assistive technology industry by validating technology needs and introducing advanced technology solutions; facilitates participatory research and development approach to the movement of new or improved prototype inventions to the marketplace through licenses, sales, or entrepreneurial ventures; and establishes a pilot informatics infrastructure for communication, collaboration, and transfers among RERCs. This story was submitted by James A. Leahy and Robyn A. Washousky.

---

Juan's Story

In 1999 Juan Garibay was a former gang member who was determined to turn his life around but did not have the proper assistance. Through the assistance of Hands-on Experiences in Rehabilitation Engineering Outreach (HERO), a program of the NIDRR-supported Rehabilitation Engineering Research Center (RERC) on Technologies for Children with Orthopedic Disabilities, he was able to change his future and help others.

That year Garibay joined the project as a NIDRR Scholar and devoted his time to work side-by-side with California State University, Los Angeles' (CSULA's) mechanical engineering students on assigned projects. Participating in the mentoring program at a local middle school, he taught young students about life experiences, choices they have in life, and how to keep away from negative temptation. Garibay also patiently assisted the students on the rehabilitation engineering projects and gradually, with hard work and numerous hours of dedicated effort, worked his way up to become one of the two HERO managers. Today, Garibay and his colleague, Artin Davidian, are diligently exerting their efforts to expand HERO to reach more schools and communities.

"Before this great experience I was caught up in my gang life with no idea of my future. I'm very thankful to my colleague Artin Davidian and the staff here at the RERC for their support and for allowing me to be a part of this great program, which gives back to the community in the form of education and hands-on projects," Garibay said. "The HERO program has given me an understanding of what it feels like to have a dream and be able to pursue that dream with determination and discipline. It has also given me a better understanding of engineering and rehabilitation engineering concepts and allowed me to gain leadership skills to become a well-rounded individual and a role model for my daughter."

The RERC on Technology for Children with Orthopedic Disabilities conducts research to expand knowledge relevant to children with orthopedic disabilities; disseminates information regarding devices, interventions, and strategies to increase manipulation, mobility, and play/recreation activities; develops and tests prototype devices and transfers proven prototypes to the marketplace; and trains engineering students about needs of children with orthopedic disabilities. This story was submitted by Artin Davidian.

---

Michael's Story

Blind and visually impaired people can now travel independently and confidently due to the NIDRR-supported project Wayfinding Technologies for People with Visual Impairments: Research and Development of an Integrated Platform.

The fundamental goal of this project is to develop an accessible platform for GPS map information. In 2002, the first version of BrailleNote GPS, the resulting product from the NIDRR funding, was released.

Not only is Michael May the principal investigator on this grant, but he is also a blind individual who travels a lot for his job. May has kept a detailed travel journal to document his experiences with this technology. One story that illustrates the empowerment gained by having access to accessible maps is one of May traveling through Europe. The following is an excerpt from his travel journal.

I have been to Barcelona a half dozen times before and was looking forward to exploring the city with GPS maps on the BrailleNote for the first time. I wasn't even sure the maps would work until I got outside the airport and sure enough, there we were on the map, at the Barcelona Airport. How about that?

My favorite way to see a city is walking, eating, and walking more. Barcelona definitely has some big-city mobility challenges. Most of the streets in this section of town are not at 90 degrees to each other. It is easy to think you are heading in one direction only to learn after a while that you have significantly curved. Many of the streets are very wide with inconsistent types of islands and placement of crosswalks. Pedestrians cross streets whenever they want and aren't to be trusted as a means of knowing when the light is green. In short, it is pretty chaotic on the streets of Barcelona, and getting around independently as a blind person is not for the faint of heart.

I was intrigued to see how well the automatic route calculation would work with the latest version of the GPS software. I started mid-way down Las Ramblas and set our hotel as my destination by typing in its address, 142 Carrer De Balmes, Barcelona. The route consisted of four significant turns over the course of 30 waypoints. I had never walked, or driven for that matter, this route before. Off I went, following the BrailleNote directions like, "Waypoint 15, Provenca and Ramblas, left 129 meters."

Because of the offset street crossings, I made a couple wrong turns but was quickly informed by the GPS that my target waypoint was "behind and to the left." After a couple of these missed turns and absolutely no sighted assistance, I heard the comforting announcement on the BrailleNote GPS, "Arrived at destination." I was 10 meters from the front door of the hotel. It is nice to be 49 years old and still feeling like a kid ("I did it myself"), not to mention saving a few Euros on a taxi ride and the frustration of bad directions from well-meaning sighted pedestrians.

Now, thanks to the support of NIDRR, blind people everywhere can be armed with the means to know about their surroundings and to travel with the same amount of confidence and independence as a sighted person.

The Wayfinding Technologies for People with Visual Impairments: Research and Development of an Integrated Platform project develops a hardware and software platform that provides accessible location and navigation information for people who are blind or who have visual impairments who are traveling in indoor and outdoor environments; develops an effective user interface and a common hardware and software platform that exploits the global positioning system (GPS) and other current and emerging navigation technologies; and develops a platform that accesses information from other devices, including Talking Signs-type devices, intersection signalization controls, an indoor digital sign system to be developed during this project at the University of Minnesota, a spatialized tactile stimulator to be developed at the University of California, Santa Barbara, a dead reckoning pedestrian navigation system, and cellular phones with GPS capabilities. This story was submitted by Kim Casey.

---

Minette's Story

Minette Hendler first became involved with the NIDRR-supported Rehabilitation Engineering Research Center on Technology for Successful Aging (RERC-Tech-Aging) at the University of Florida in 2002 when her husband was recruited to participate in a study involving persons with mild to moderate cognitive impairment.

She recalls that she was intrigued by the project, which sought to reduce caregiver burden by providing increased independence to older persons with cognitive impairment through the use of a prompting device/system that would provide the necessary cues for safe completion of daily living activities.

Following her husband's participation, she requested that she be contacted as well about any upcoming studies for which she herself might qualify. She was soon enrolled as a member of the center's "participant recruitment core" to potentially serve as a research participant in future studies. Soon thereafter, both she and her husband were invited to participate in another NIDRR-supported study being conducted by the center called "Needs and Barriers to Home-Based Monitoring and Communications Technology."

In this study, the Hendlers were interviewed about their use or potential use of various types of home monitoring and communication devices (cell phones, PDAs, etc.). Once again, Hendler expressed her appreciation for being included in the project.

Sadly, in 2003 Hendler became a widow after 53 years of marriage. At the time of her husband's death, she had served as his caregiver for more than 10 years as he battled dementia. Though she experienced increased mobility problems following her husband's passing, she tried to remain optimistic about her own health and well-being. During that time she said, "Although I am physically disabled with sleep apnea, fibromyalgia, and arthritis, mentally I am ready for whatever comes my way."

Hendler has found that remaining active has been invaluable in helping her cope with the loss of her spouse. Shortly after her husband's death, she volunteered for another NIDRR-supported study being conducted by the RERC-Tech-Aging entitled "Partnerships with Industry: Honeywell's Independent Lifestyle Assistant Program." This study sought feedback regarding Honeywell's Independent Lifestyle Assistant with regard to its value to older persons and the impact of the system on overall health, functional, and psychosocial status.

Prior to volunteering with the center, Hendler joined several support groups within the community and served as the volunteer coordinator for the Gainesville Police Department and the area coordinator for the AARP Volunteer Income Tax Program. She strongly maintains that one of her favorite volunteer opportunities has been serving as a Consumer Advisory Board member for the RERC-Tech-Aging as a consumer representative. She has now served on the board for two years. As a board member, she was invited to travel to Washington D.C. in December 2003 to attend the Second International Conference on Aging, Disability, and Independence. Her appreciation was evident, as she called the center a number of times both before and after the conference thanking Dr. William Mann and his staff for including her in this "once-in-a-lifetime opportunity."

Since the conference, Hendler has helped pilot protocols being developed by the National Older Driver Research and Training Center (NODRTC), also run by Dr. Mann. Additionally, she has expressed a strong interest in "reserving a spot" to serve as a live-in research participant in the Gator-Tech Smart House. The Gator-Tech Smart House, another NIDRR-supported project conducted by the RERC-Tech-Aging, is located on the campus of a continuous care retirement community (CCRC) being developed by the University of Florida. The home will serve as a research/demonstration home, incorporating universal design and high-tech home-monitoring features.

Hendler continues to thank the center for the opportunities it has provided her, and in turn, the center thanks her for her valuable contributions. Her willingness and dedication to participate in important aging research has contributed to a strong consumer presence within the center's studies and activities. She has truly helped make the RERC-Tech-Aging a success.

The RERC-Tech-Aging project conducts research and development on smart technology to assist older persons with disabilities in maintaining independence and quality of life, with a focus on smart phones and smart home technology, and identifies needs and barriers in home monitoring and communication technologies. This story was submitted by
Cathy Locklear.

---

Patricia's Story

The Community Research for Assistive Technology (CR4AT) project at the California Foundation for Independent Living Centers (CFILC) was designed to interview and survey people with disabilities who use assistive technology. It was also developed with the express intent to involve people with disabilities as researchers.

A few of the trained researchers were asked for their comments on what they learned. Patricia Neumeyer, assistive technology program coordinator with the Independent Living Resource Center in Santa Barbara, California, was one such researcher.

At the start of the training, Neumeyer said she had "research background from my graduate work in sociology, ‘soft science,' and in speech and hearing science, ‘hard science.' Therefore, I knew the difference between qualitative and quantitative research methods. I looked forward to moderating focus groups because I feel very comfortable in front of people. I was a teacher, so I felt confident that I could guide the discussion and keep it on track."

Making the research process accessible was part of the commitment when the grant was awarded, but this still involved a learning process. Neumeyer not only helped the research project make itself accessible to her but also developed ways for her to actively participate in the project.

"I had to request that all materials be provided to me in .txt or .doc format so my screen reading software could fully access the information," said Neumeyer. "Next I made Braille cue cards so I could stay on track with the questions during the focus groups. I used the services of an assistant to drive me to some of the meeting sites, which were located throughout the tri-counties. We compiled all the signed consent forms and filled out the expense paperwork to receive the incentive money prior to the focus groups. I typed in my notes on my accessible computer and e-mailed them to the office."

Reaching out to underserved populations is one of the research priorities being pursued by the CR4AT project. This meant many community researchers had to venture outside of their comfort zones in order to collect data. Neumeyer had the unique experience of conducting a deaf focus group as a blind individual. This was one of the more memorable experiences for her on the project.

"I described my interesting focus group session with 10 deaf participants, who all communicated to me their utter amazement that I could function so independently with low vision," she said. "Since deaf persons depend so heavily on their eyesight, and since they usually say exactly what they are thinking, I felt a little bit like the main attraction at a freak show. I noted that some persons with disabilities are just as capable of ignorance and uninformed attitudes as other, non-disabled people. I recognize that there is a tension between the blind and deaf communities based on our mutual dependence on a respective compensatory sense. My focus group with the deaf folks was a baptism by fire for me. The American Sign Language (ASL) interpreter was nearly overwhelmed by the rapid-fire pace of the discussion because everyone insisted on talking at once. I was unaware of their constant interruptions because I could not see their sign language, and the interpreter had to voice a mile a minute to catch as much of the cross-talk as possible. It was a circus, but I had fun anyway. I felt bad for the person who had to type the lengthy transcript of that focus group! So, my words of wisdom would be to get as much of an orientation about the cultural aspects of a particular disability group before jumping in with both feet like I did. I recognize that I learn best on the job, but it would have been better if I knew that I could be more firm with the deaf folks, and I could have expanded the ASL interpreter's role to make an accommodation by informing me when the participants were cross-talking so I could step in and be a more effective moderator. Despite the roughness of that group, I feel that all of us came away with a better understanding of each other's disabilities."

As a member of the CR4AT research team, Neumeyer has been called on for multiple presentations about both the research data and her experiences. "I think it would be great if future consumer researchers would be required to read about our experiences so they know what they are getting involved with," she said. "I believe that our core group of researchers had a passion for the goals of the study and a courageous streak that compelled us to overcome the challenges and follow through with our commitment to the research. Those qualities are necessary for future researchers to have. Finally, the support of my independent living center was crucial for me. Without it, I would not have been allowed to devote the block of time I wished to this project."

The CR4AT project increases the capacity of the independent living community to collect research data on access and use of assistive technology to improve the lives of people with disabilities; uses an ecological model to develop cumulative research data on the use of and access to assistive technology by people with disabilities; trains participants in research methods and assists with data collection and analysis; and conducts focus groups, surveys, and action research in community advocates' respective regions. This story was submitted by Myisha Reed.

---

Steve's Story

Historically, one of the most troublesome tasks of preparing food has been that of opening vacuum-sealed jars. From pickles to mayonnaise to sauces of all kinds, a large variety of prepared foods and condiments in today's supermarkets are packaged in jars. Not one household can say it hasn't faced difficulty in opening jars of food at least once. People of all ages and ability levels have struggled. However, the struggle is now over and life just got easier with the introduction of the Black & Decker Lids Off Automatic Jar Opener, a product made possible by a project supported by NIDRR.

In early 2000, personnel of the University at Buffalo's Rehabilitation Engineering Research Center on Technology Transfer (T²RERC) Supply Push team came across a listing for the award recipients of the BF Goodrich Collegiate Inventors Competition and became interested in a winning jar-opening device called the Twistmaster. The Collegiate Inventors Competition is an international competition designed to encourage college students to stay active in science, engineering, mathematics, technology, and creative invention while stimulating their problem-solving abilities.

The Supply Push's mission is to facilitate the introduction of new products and technologies into the marketplace benefiting people with disabilities. The T²RERC contacted the inventor of the Twistmaster, and the next step was to get Black & Decker involved. The T²RERC convinced Black & Decker that an explicit need did exist for an automated jar opener that would both grip the jar and lid while twisting with minimal user effort.

Once Black & Decker was on board, the T²RERC held consumer focus groups comprising a cross-section of potential users, including consumers with arthritis, multiple sclerosis, carpal tunnel syndrome, Parkinson's disease, and the general public. Black & Decker received a listing of 29 specific design and functional features from the focus groups. They incorporated 27 of these into their final product design. Official product introduction was in fall 2003, after three years of perfecting the design. The Lids Off Automatic Jar Opener is now available in retail stores, on the Internet, and on shopping channels.

The product is especially beneficial to the elderly and disabled but is a transgenerational device to be used by all people. Since product introduction, consumers have positively received the Lids Off Automatic Jar Opener. They have called it ingenious, simple to use, and great for those whose hand strength has weakened.

For one consumer in particular, Steve Truesdale, the Lids Off Automatic Jar Opener has been a lifesaver. Truesdale has the use of only one hand and can operate the device entirely with his dominant hand. He is able to use it in series, meaning that each step in the operation is independent of the next, again allowing for one-handed operation. Truesdale uses the opener 2–3 times a week on a continuous basis. Before being introduced to the Lids Off Automatic Jar Opener, he would try to wedge the jar between his arm and chest to break the seal, which could be quite difficult. He has difficulty opening jars with a wide circumference and cannot grip them to hold them upright. Without the Lids Off Automatic Jar Opener, Truesdale had to have his aide open all the jars he purchased while grocery shopping immediately after returning home. There is no longer immediacy in needing to open jars right after shopping when an aide is present, and the refrigerator does not have to be cluttered with a lot of opened jars.

"The Lids Off blurs the line between what is disabled and what is a consumer choice," he said.

Truesdale has been using his jar opener for almost a year now. For him, it is the simple things that count. It's good to know that he no longer has to neglect putting the pickle on his hot dog just because he could not get it out of the jar.

The T ²RERC project identifies critical success factors in assistive technology transfer cases and traces outputs and outcomes of a variety of federal technology transfer programs; provides a context for transfer opportunities involving the assistive technology industry by validating technology needs and introducing advanced technology solutions; facilitates participatory research and development approach to the movement of new or improved prototype inventions to the marketplace through licenses, sales, or entrepreneurial ventures; and establishes a pilot informatics infrastructure for communication, collaboration, and transfers among RERCs. This story was submitted by James A. Leahy and Robyn A. Washousky.

---

Tracy's Story

Tracy Rackensperger is a determined young woman with a bachelor's degree in radio-television and a master's degree in communication. She also has cerebral palsy, which significantly impairs her motor skills and speech intelligibility.

Rackensperger uses augmentative and alternative communication (AAC) to interact with other people. While her disability has at times made completing her academic activities and her search for employment more challenging, Rackensperger has always been interested in using her knowledge of disability resources and strategies to assist others.

Dr. David McNaughton, a Penn State faculty member and member of the Rehabilitation Engineering Research Center on Communication Enhancement (AAC-RERC), first learned of Rackensperger's skills when he read her postings to an electronic mailing list that focuses on the experiences of individuals who use AAC.

Knowledge of Rackensperger's writing skills led McNaughton to ask her to join an AAC-RERC research project, TECH 2010. The goal of the project was to gain a better understanding of the challenges and supports of effective AAC device use as reported by individuals who use AAC and the parents of such individuals.

Rackensperger fulfilled a wide variety of roles in her work with the TECH 2010 project. She worked with the team to develop the research questions for the project; acted as a moderator for two Internet-based focus groups; recruited participants for the two focus group discussions; assisted in the analysis of the focus group discussions; presented the research findings at conferences; and assisted in the development of two manuscripts to be published. Results of the study served to highlight the importance of a consumer-driven approach to assessment and to the provision of appropriate supports (including learning from peers, professional support, and opportunities for use in the community) for successful device use.

The collaboration has been a success on a variety of levels. "We were very pleased when Rackensperger agreed to help us with this project," McNaughton said. "Our goal was to gain an insider's perspective on learning to use an AAC device—participants in a focus group are more likely to share information with someone who has a common life experience." McNaughton noted another way that Rackensperger's participation helped the AAC-RERC. "We were determined to develop new research methodologies that would enable us to live up to the principle of ‘nothing about us without us'—the idea that any research about people with disabilities should include people with disabilities in leadership roles," he said. "We believe that this project has been a successful implementation of this principle and provides more useful information as a result."

The results of this study have been of high interest to individuals who use AAC, their parents, and device manufacturers. To date, Rackensperger has made three national presentations highlighting the main findings of the project, and two manuscripts are in preparation. "We titled the first manuscript [which features the views of individuals who use AAC] ‘When I First Got It, I Wanted to Throw It off a Cliff: The Challenges and Benefits of Learning AAC Technologies as Described by Adults Who Use AAC,'" said Rackensperger with a laugh. "This is an actual quote from one of the participants because it really can be a love-hate relationship with an AAC device. When they work it is great, but it is so frustrating when they break down. Fortunately, things are getting better, and devices are getting more powerful and more durable."

Rackensperger's experience with the AAC-RERC was her first with a federally funded research project and has led to many new developments in her life. Along with her work on the presentation and publication activities associated with the TECH 2010 project, Rackensperger has also started work on two other AAC-RERC projects. She acts as the AAC-RERC liaison to the Augmentative Communication On-Line Users Group (ACOLUG) electronic mailing list, and she also is a charter participant in the AAC Writer's Brigade, an initiative to involve individuals who use AAC in writing and disseminating information on AAC-RERC activities.

"Becoming involved with the TECH 2010 project has led to experiences that have benefited me both on a personal and professional level," said Rackensperger. "For me personally, my involvement with the project has enabled me to take an active role in furthering a research agenda that includes meaningful consumer involvement. On a professional level, becoming involved with the TECH 2010 project aided me in acquiring the skills to begin a career involving research and writing."

The AAC-RERC project advances AAC research in literacy, telework, specialized vocabulary, contextual scenes and intelligent agents; conducts research on improving interface performance and monitoring/simulating communication performance; enhances AAC development through projects that monitor emerging technologies, standards, and policies; studies AAC WebCrawling and ways to utilize the role of listeners in AAC interactions; explores the use of residual speech, dysarthric speech, gesture recognition, and brain interface technology; educates AAC stakeholders through the State of the Science Conference, AAC-RERC Web site, Webcast series, the ACETS Online through E-Coaching program, high school training, and the AAC-RERC Writer's Brigade; and shares information with stakeholders through the Web site, conference presentations, journal articles, exhibits, Webcasts, electronic mailing lists, the Augmentative Communication News and Alternatively Speaking newsletters, and other media. This story was submitted by David McNaughton and Tracy Rackensperger.

Alice's Story

"I personally know how hard it is to find attendants and apply for personal assistance services," says Alice Wong, a graduate student in the Department of Social and Behavioral Sciences at the University of California, San Francisco (UCSF). Wong uses that personal knowledge as a student researcher at the Rehabilitation Research and Training Center for Personal Assistance Services (PAS), which is supported by NIDRR and based at UCSF.

The Center plays a main role in her training as a researcher. There, Wong organizes and conducts focus groups of people who use personal assistance services. "People with disabilities want to have the same range of choices as everyone else when it comes to housing, education, and employment," she said. "Living independently with adequate personal assistance, people with disabilities have more control over how they want to live and opportunities to participate in society. Our focus groups reflect those sentiments, and it has definitely been true in my own life as well." She also conducted focus groups and interviews of people with disabilities as a research assistant at the UCSF Disability Statistics Center for their New Measures project.

Wong's main research interests are qualitative methods, disability studies, and women's health. She finds the Center to be a good fit for her life experience and her future goals. "The Center provides an invaluable experience for me as someone committed to conducting research about disability," she said. "When I first came here to UC-San Francisco, I knew that a health sciences campus would expose me to a number of experts from various academic disciplines that fit my interests. The faculty at the Center examines the most current and salient issues facing people with disabilities regarding PAS-the data produced by the Center can have a considerable impact in the way policymakers understand PAS issues."

She emphasizes that the inclusion of people with disabilities who are PAS users is crucial to valuable research and dissemination efforts. "By including the voices of consumers in our advisory board and producing qualitative research about people with disabilities, the Center involves the life experience of people with disabilities into every aspect of its research. This can only enrich the quality of data that is produced," Wong said.

She finds her work at the Center not only rewarding but also a strong basis for her future. "The Center will help prepare me for a future in academia by introducing me to various research methods and how to disseminate that research to diverse communities. It is my goal to share knowledge with my colleagues at the Center and use my research skills to help expand the field," she said.

The PAS project focuses on the relationship between formal and informal personal assistance services (PAS) and caregiving support and the role of assistive technology in complementing PAS; investigates policies and programs, barriers, and new models for PAS in the home and community; and develops workplace PAS models that eliminate barriers to formal and informal PAS and assistive technology at work including recruitment, retention, and benefits. This story was submitted by Lewis Kraus.

---

Maggie's Story

Maggie Dowling is a long-time disability community activist and advocate. She has strong feelings about community involvement. "Policymakers and legislators often overlook the advantages of involving consumers when programs and policies are developed," Dowling said.

She had never been involved with a research or policy project that included highly respected researchers as well as people with disabilities. The NIDRR-supported Rehabilitation Research and Training Center for Personal Assistance Services (PAS), based at the University of California, San Francisco (UCSF), offered a unique opportunity to be a part of just such a team.

"At the Center, I feel that I represent an important element to our work, the consumer's or stakeholder's views. I think it benefits everyone involved with the grant including the research teams and Center's target audiences," she said.

Two years ago, Dowling discovered work being done at UCSF for the state regarding the In-Home Supportive Services Program and the Olmstead planning. She felt the work was of critical importance and quickly established a short-term volunteer relationship with UCSF researcher Robert Newcomer. Shortly thereafter, the NIDRR grant was proposed and awarded. Dowling was asked to join the UCSF team.

Dowling needed some level of personal assistance services to do the proposed job. Discussions ensued between the State Department of Vocational Rehabilitation (DVR), UCSF, and herself to determine what she would need in the way of job accommodations, computer needs, and training. An assessment was conducted and paid for by the DVR. The hardware, software, and the peripherals she needed were co-purchased by the DVR and UCSF.

Along with her basic knowledge of computer programs, Dowling used a reader and note-taker 10 hours a week to help her through the training period using standard software until she could use the new software. Her note-taker hours were reduced by half after the training component ended. UCSF picks up the cost for her note-taker. He is essential for accessing Web sites and taking notes during team meetings.

Training was an important component for Dowling, as her ability to review and produce more material became evident the more adept she became with her new software. She works at home to reduce commute time. It also offers flexibility to work day or night and enables Dowling to take her required time for breaks. Team meetings are conducted by telephone conference calls, enabling Dowling to communicate effectively from her home base.

Dowling's job has actually afforded employment to two people with disabilities. Besides Dowling, her note-taker, Chris Cotter, is a person with spina bifida. Cotter has never been employed before this job; he had only done volunteer work. The job offers him new and different benefits: an income, the status of being employed, learning appropriate basic business communication skills, and most important, improving his computer skills, making him more employable in the future.

He has particularly enjoyed the increase of income and savored the benefits that come with a higher income. Dowling said, "It is my strong belief that if a person never experiences employment and its benefits, there is little incentive to work. Volunteer work is helpful to learn the limited basics, but paid work experience will entice people to learn a work ethic and pride in their abilities." Dowling feels that by working for UCSF she has helped a person who would not have sought employment otherwise. "Chris is living independently, something his family never anticipated happening," she said. "My UCSF job has given me the opportunity to encourage this turning point in the life of another person with a disability, proving that working in a consumer-friendly work environment offers compensation beyond imagination."

For herself, Dowling feels good working again and strengthened by her employer's interest in the appropriate accommodations to ensure maximum job performance. Her wish to find a job where she can telecommute has been realized and is a tremendous benefit to her independence. She said, "My employment benefits the disability community and especially those who have not worked as a team member of viable research. I think we can ultimately change employment concepts to encompass more people with disabilities and their specific work accommodation needs, maximizing their ability within the world of employment."

The PAS project focuses on the relationship between formal and informal personal assistance services (PAS) and caregiving support and the role of assistive technology in complementing PAS; investigates policies and programs, barriers, and new models for PAS in the home and community; and develops workplace PAS models that eliminate barriers to formal and informal PAS and assistive technology at work including recruitment, retention, and benefits. This story was submitted by Lewis Kraus.

---

Marvin's Story

Marvin Moss is a 58-year-old man with mental retardation who has been working as a member of the Rehabilitation Research and Training Center on Aging with Developmental Disabilities' (RRTCADD's) Advocate Advisory Group. Advocate advisors suggest what kind of research, training, and information the RRTCADD should develop to improve the lives of older adults with developmental disabilities and their families. The following story is an account of Moss' participation as told to RRTCADD's Alan Factor.

Working on RRTCADD research and training projects taught me how the service system works and how to work with others to improve the lives of older people with developmental disabilities. I helped the RRTCADD develop and conduct its "Voices That Count" training, which prepares people with developmental disabilities to present to boards, committees, and other decision-making groups. Adults with developmental disabilities learn how to become part of the decision-making process that affects their own lives. I also teach other people with disabilities about making choices later in life. I helped develop the RRTCADD Making Choices as We Age peer training program. We train people with disabilities and their co-trainers on how to teach other adults with mental retardation about making healthy choices, rights and responsibilities, and things to do in their free time.

I live on my own in Cincinnati, Ohio. My parents died in the 1980s. My closest relative is my 62-year-old brother, Leon, who has severe mental retardation. Leon lived in a state institution for 30 years and was discharged to a nursing home in Dayton, Ohio. Because the RRTCADD taught me how to be a better advocate, I was able to get the state to move Leon to a nursing home in Cincinnati so I could look after him. With help from the Arc of Hamilton County and Ohio's Protection and Advocacy Agency, I am now advocating for the state to allow Leon to live with me.

The RRTCADD has helped me speak better, dress better, tell people what I think, and get out more. By working with the RRTCADD, I've developed new job skills, such as using a computer and sending e-mail. I've also become a better advocate. Now I work for the Arc of Hamilton County as an advocate for people with developmental disabilities, which is a lot more rewarding than my previous job cleaning hotel rooms. I am the only person with a developmental disability on the board of Ohio's Protection and Advocacy Agency. I do a lot of public speaking about aging and developmental disabilities. Recently I presented at a conference of Ohio physicians about the health-care needs of adults with developmental disabilities. In October, I presented at the RRTCADD's National Sibling Conference on how I help my brother.

I meet new people, learn a lot, and make new friends. It feels good to teach other people, too. I had to learn a lot of things the hard way, and I hope I can make it easier for kids today. When my life is over, if I can say that I helped people, if I can say that I helped even one person a day, I did good.

The RRTCADD project improves the health and function of adults with intellectual and developmental disabilities (I/DD) by promoting healthy behaviors, planning and targeting health services, and eliminating barriers to care; develops and evaluates progressive policies and interventions to expand consumer-directed family support and future planning for adults with I/DD and their families; and promotes state-of-the-art aging and disability friendly environments to enhance participation in community life for adults with I/DD. This story was submitted by Alan Factor.

---

Pam's Story

Pam Mackie has worked with several intervention research studies supported by NIDRR at the Baylor College of Medicine's Center for Research on Women with Disabilities (CROWD) as a peer co-facilitator, most recently a trainer of facilitators for the Depression and Rural Women with Disabilities: Testing a CIL-Based Self-Management Program. Below, Mackie describes her experience as a peer facilitator.

I do not know where to begin. I am so appreciative of the opportunity I was given to be a facilitator for the NIDRR-supported group intervention research projects and others sponsored by CROWD. The workshop interventions being evaluated in various grants addressed health and wellness, aging with disability, self-esteem, and depression.

Being a workshop facilitator has helped me on so many different dimensions. I truly cannot describe the numerous positive effects on me and my being. Living with a spinal cord injury disability for more than 17 years, it is easy to get caught up in the frustrations of daily living and the inability to accomplish everything one may want. Facilitating these workshops helped me reinforce to myself important aspects of self-care that enhance quality of life and improve daily living. Just like the other women with disabilities I have worked with, I may have heard or known a lot of the information before the workshops, but the workshops reinforced the importance of the information. Each time I presented in a workshop, it was more of a reinforcement and validation that I had abilities to affect my quality of life and a responsibility to do so. One example is my goal of exercising every day. It took 4 years of trying, action planning, and trial and error, but I have achieved a routine of 20 minutes of aerobic activity every day. I also speak much more assertively. Now I do my best to honor and respect my needs instead of always asking permission to have needs, much less asking for them to be met.

I am very grateful for NIDRR's funding, which enabled me to help countless other women with disabilities and to help myself become a better person. I believe this experience has also contributed to my success as a graduate student in counseling by giving me rich opportunities to be involved in mental health intervention research, such as the projects on self-esteem and depression. Finally, being a workshop facilitator has made me more accepting of my disability and the needs created by having a disability.

The Depression and Rural Women with Disabilities: Testing a CIL-Based Self-Management Program project evaluates a depression self-management intervention for reducing and preventing depression in rural women with disabilities; develops and implements a depression self-management program for women with physical disabilities. This story was submitted by
Dr. Rosemary B. Hughes.

---

Waver's Story

Waver L. Franklin is a health educator/peer support liaison in Chicago, Illinois. Below she writes about her involvement with the NIDRR-supported University of Illinois Medication Adherence Program Study (UIC-MAPS).

As a person living with HIV/AIDS for over 22 years, I am conscientious of the need for programs that address the multiple needs of people with HIV/AIDS, particularly mental health concerns. I first became involved with the University of Illinois Medication Adherence Program Study (UIC-MAPS), supported by NIDRR, when MAPS staff described their project at our monthly community meeting at my residential program. I was impressed with their knowledge as well as their willingness to learn from us about our experiences. I wanted to be part of the study because I am an advocate and peer educator myself. I also recognize how participating in studies like this can improve services provided to those infected in the future. I signed up that same evening. As a result, I am a more informed person living with HIV/AIDS.

Given my fragile health, I was able to participate in the study because the MAPS medication specialist met me at my home. Being in such an intimate environment, my tiny apartment, we were able to establish a sisterhood that exceeded the basic MAPS expectations. My adherence was greatly and permanently improved because of the way the medication specialist used her respectful and persuasive skills to help me change some of the habits that led me to miss doses here and there. She asked questions about the reasons I would miss any of my medications. I shared with her that I could become lackadaisical. I would think to myself, "I'll take it in a few minutes" or "As soon as this movie goes off, I'll take my pills" or "When I'm done with my shower, dishes, phone call, etc." I would just look over at all those medication bottles and it seemed like such a job that I dreaded going through the motions. Working with her, I realized that I put off taking my medications by saying I would take it later, and I would keep doing that until I ended up missing my dose. We talked about just taking my medication when it was time, and even though that seemed like a simple thing, it made a big difference in helping me become more adherent.

The MAPS medication specialist also suggested that I keep track of what meds I have taken by using a better packaging method. As a result, I changed to a pharmacy that sends my meds by personal messenger, pre-dosed, and pre-packaged. Since they send them in a case of 7 days each, in packs of four doses per day, I no longer have to deal with bottles or reading the dosages or anything that can get me mixed up or permit me to miss a dose. The medication specialist also explained what happens in my body when I am late or miss a medication dose. She showed me a graph of the half-life of particular meds and how that affects the replication of the virus and its mutation speed. That picture remains in my mind. I am absolutely sure that it is because I was treated with such respect and admiration from MAPS staff that I have made these decisions to be diligent about my medication adherence.

I have a better feeling about my own achievements in many ways. Because I am more empowered with the knowledge I gained in the MAPS program, it has become a part of my way of life. I am very grateful to have been in this NIDRR program and spent so much time talking about things that concern me and my personal behaviors and actions.

In collaboration with Chicago House, a community HIV/AIDS service organization, the UIC-MAPS project examines the effects of a multifaceted curriculum designed to improve adherence to medication and treatment regimens, explore attitudes regarding physical health and treatment planning, and improve the ability of participants to return to work; develops an educational workshop consisting of three 1-hour modules regarding health information, use of anti-retroviral medications, treatment planning, maintaining health, detecting early symptoms of illness progression, and other topics; develops individualized medication plans and meetings with clients and their identified sources of social support to address medication and services issues; and conducts a comprehensive evaluation designed to make significant contributions to the state-of-the-science literature regarding employment and adherence among people living with HIV/AIDS. This story was submitted by Marie Hamilton.

Joshua's Story

When he was 3-and-a-half years old, Joshua Parker (not the actual consumer name) was tested for developmental delays. After he was deemed untestable by the school psychiatrist, his parents enrolled him in the district's developmental preschool.

Parker's mother, a former teacher, would often try to teach him different vocabulary words at home and would ask the teacher how to increase the number of his spoken words. Parker's first preschool teacher told her she was wasting her time and she needed to get him to calm down first. The two clearly did not see eye-to-eye on issues involving Parker.

The teacher frequently gave Parker's mother advice on strategies, especially regarding sensory stimulation, like reducing sounds to get him to settle down. However, the teacher shared little on how to increase his academic skills or vocabulary.

Because the teacher's tone often seemed accusatory, Parker's mother soon learned not to trust her very much. The teacher also suggested that Parker start extensive occupational therapy at school, but his mother was reluctant. She started to doubt whether his teacher knew anything about what he needed.

Just about the time that his mother was at the end of her rope with the teacher, a new speech therapist was hired by the school district. The new therapist, Diane Whitmore (not the actual consumer name), worked much closer with Parker and after a week of school was able to sit down with his mother, compare notes, and give suggestions.

They both noticed that Parker's outbursts in the classroom were frequently preceded by loud noises and that he hated to be touched. Together, based on Whitmore's recommendations, they developed a program to provide Parker with therapeutic strategies using sound and touch at home to have him get used to different levels of stimuli.

In a more relaxed state, Parker would be able to enjoy the frequent vocabulary lessons with his mother. Whitmore also recommended that he be put in the school's occupational therapy program with the school occupational therapist, Lois Bueller (not the actual consumer name). This time his mother readily agreed.

Parker's mother learned that Whitmore and Bueller had been students in a class that was based on the research of the NIDRR-supported Rehabilitation Research and Training Center on Policies Affecting Families of Children with Disabilities, housed at the Beach Center on Disability at the University of Kansas. The teachers incorporated what they learned in the class into their teaching.

Soon, Parker's mother was adjusting her home lessons with her son based on regular reports from school on his progress. The teachers even helped her find a therapeutic clinic outside of school where Parker could receive additional therapy.

Through a coordinated intervention of home-, school-, and clinic-provided therapy, Parker progressed rapidly. The therapy intervention made his strengths bloom. By the time he was 4-and-a-half, Parker was talking in small sentences. By the time, he was 7, he was attending a regular first grade class, and he tested out of the private clinical therapy. By the end of first grade, he received only speech and occupational therapy once a week through school.

Parker is now 11 years old. He needs little outside assistance with the exception of once-a-week speech therapy, and he is very close to testing out of that program. He receives mostly As on his report card and is beginning to develop good relationships with his peers.

Someone asked Parker's mother what she thought most contributed to Parker's remarkable success. She thought long and hard and realized that the single biggest factor in her son's progress was the trusting and active partnership she had with the preschool.

"We both followed the advice and research of the Beach Center over at KU. Their research reveals a lot about the benefits of treating parents as partners. Diane and I often try to follow their guidelines," Bueller said.

The RRTC on Policies Affecting Families of Children with Disabilities project investigates the effects of the policies of governments, systems, networks, and agencies on the family quality of life and community integration (FQOL/FCI) of families who have children with developmental disabilities and/or emotional-behavioral disabilities; and addresses policy challenges such as whether the applicable federal and state policies and practices and the applicable network policies advance FQOL/FCI, whether the policies across education, social services, and health care are mutually consistent with each other and advance FQOL/FCI, and whether the practices of agencies in those systems advance FQOL/FCI. This story was submitted by Sandra Padmanabhan.

Kelly's Story

Kelly Buckland of Boise, Idaho, first contacted Through the Looking Glass' National Resource Center for Parents with Disabilities (NRC) in 1999. First funded by NIDRR in 1998, the NRC provides technical assistance, publications, training, and networking opportunities for the nearly 9 million parents with disabilities with children 18 and younger with an overall goal of more disability-appropriate resources for these families.

Buckland is a father with quadriplegia and the executive director of the Idaho State Independent Living Council (SILC). He requested the NRC's help to address ongoing discrimination against parents with disabilities as well as the lack of appropriate resources in his state. Comparable to situations existing in other states, Idaho child custody laws reflected the historical bias against parents with disabilities, implying that parents with disabilities are incapable of properly caring for their children. Buckland had previously been a child protective services worker and understood the factors that should be considered in child custody cases include abuse, neglect, and abandonment, regardless of whether the parent has a disability.

In order to create a consistent process that guaranteed that no parent would lose custody of his or her children solely due to having a disability, Buckland organized the committee for Fathers and Mothers Independently Living with their Youth (FAMILY). This was a statewide committee of Idaho disability advocates, legislators, attorneys, consumers, members of disability organizations, and state agency representatives. The committee was created to remove any inappropriate disability language from current law, build into current law protections against discriminatory actions because of a parent's disability in child custody legal proceedings, and create a support fund to pay for the necessary services to support parents with disabilities.

The NRC has provided technical assistance, information, and training to this committee since its inception in 1999. Telephonic technical assistance to the statewide committee expanded into on-site consultations and training. At Buckland's request, NRC staff reviewed and assessed for disability appropriateness the Idaho child protection system's risk screening document.

The committee proposed revisions to various statutes governing child custody in divorce, dependency, guardianship, and adoption cases. The revisions removed disability-hostile language and replaced it with appropriate language. The revisions, in the form of House Bills (HB) 577 and 579, became law on March 22, 2002. This historic legislation guarantees disabled parents' rights equal to non-disabled parents in the context of child custody proceedings. It also codifies the right of disabled parents to provide the court with evidence of adaptive equipment and supportive services, which help disabled parents care for their children.

Additionally, further revisions in the form of HB 160 and HB 167 became law in 2003. The former amends criteria and deletes discriminatory language from statute sections governing actions to terminate parental rights, including deletion of references to mental illness or deficiency. The latter amends statute sections governing child protection actions, including inclusion of a non-discrimination statement protecting disabled parents and statutory definitions of key terms and concepts, and codifies the right of disabled parents to provide the court with evidence of adaptive equipment and supportive services, which help disabled parents care for their children. This legislation amended that portion of the statutes concerning multi-disciplinary teams to both require the use of appropriate family investigation protocol and allow the use of persons conversant with adaptive equipment and support services for disabled parents.

The NRC has continued an ongoing working relationship with Buckland and the state of Idaho. In 2001, NRC staff conducted statewide trainings for health professionals to begin improving services for parents with disabilities in Idaho. Also in 2001, NRC co-director Megan Kirshbaum co-presented with Kelly Buckland on the developments in Idaho at the 2001 National Council on Independent Living (NCIL) Conference in Washington, D.C. Buckland also presented at the NRC's Second International Conference on Parents with Disabilities in 2002, providing a model for use of the NRC's technical assistance and training in addressing statewide change.

Through the Looking Glass was recently funded for a new 3-year cycle by NIDRR as the NRC. NRC staff will conduct statewide training for Idaho's child protective service multi-disciplinary teams to support the implementation of the legislation's mandated disability-appropriate practice. Also, as vice president of NCIL, Kelly Buckland will collaborate with the NRC to facilitate online and on-site trainings for Independent Living Center (ILC) workers nationwide. The goal is to encourage ILCs' involvement in the national development of state task forces focused on parents with disabilities and supported by linkages to the NRC's training and technical assistance.

The NRC project provides acgcessible and disability-appropriate information regarding parenting with a disability to parents, potential parents, disability advocates, and legal, medical, and social service providers; provides training to parents with disabilities, potential parents, and service providers; provides technical assistance that increases informed practice and
informed decisions; and provides program consultation that increases local and regional services that are accessible and disability-appropriate. This story was submitted by Dr. Paul Preston and Dr. Megan Kirshbaum.

Cheri's Story

Cheri Hofmann describes her experiences while working with the Southeast Disability and Business Technical Assistance Center–Region IV (SEDBTAC).

I am an individual with a significant hearing loss. Never in a million years did I dream that providing technical assistance and information over the telephone would become an essential job function. The Southeast Disability and Business Technical Assistance Center (SEDBTAC) made that happen. SEDBTAC has been the wind beneath my wings for nearly 5 years!

In 2000 I began actively working with the independent living movement as the advocacy/outreach coordinator for the center for independent living in northwest Florida. Soon after I began my work I found out about SEDBTAC and discovered that I worked for one of several organizations designated as their affiliate in Florida. My job required a lot of technical research on the Americans with Disabilities Act (ADA), but my expertise was limited at that time. It didn't take me long to realize the staff at SEDBTAC had more than enough experience and were the gold mine I needed to complete many projects. My success in this position was due largely to them. I was successful with the community, the consumers, and even the state of Florida. I won the Florida Advocate for Outstanding Community Advocacy Award, and participated on many committees as an expert for the ADA on the local and state level.

With the guidance and assistance from SEDBTAC, I was able to start several successful ADA programs and coordinated many ADA workshops and events in northwest Florida, including the Parking Accessibility Resource Committee (PARC), the ADA Advocacy Council, the University of West Florida ADA Accessibility Committee, and the Northwest Florida Spirit of the ADA. In addition, I became a recognized voice in a four-county region for businesses, people with disabilities, commissioners, and legislators for my growing knowledge with the ADA.

With the assistance of the SEDBTAC, we held one of the largest ADA business workshops in the region. This workshop attracted people from four counties and even made the local news. Calls poured in after the workshop, as many people wanted to know more about the ADA and SEDBTAC services. SEDBTAC was there for me every step of the way, providing advice, technical expertise, and literature. The SEDBTAC network administrator, Jack Humburg, was a keynote speaker at this event. He was crucial to its success! The event was recognized at the annual SEDBTAC meeting as a "promising practice."

I used to call SEDBTAC at least one to three times a week. The staff were quick to respond and always gave clear and accurate information. Because of this, I was able to get the needed information to the individual quickly as well. I had a SEDBTAC poster in every office. The staff were always just a call away. I used to help the other peer counselors with ADA questions, but I began stressing the need for them to call SEDBTAC, too. When I first started at the center, I would go to the executive director and ask ADA question after ADA question. He would say, "Call SEDBTAC." So I did. I am blessed with my association with SEDBTAC and can't say how many times the staff there helped me with my job, but I know our relationship strengthened over the years. I think they had a hotline just for me!

To end this story, I would like to say that without SEDBTAC, I would not be where I am today. I officially began working with them as their full-time training manager on January 20, 2004, and couldn't be happier.

The SEDBTAC project provides expert technical assistance to promote voluntary and effective implementation of the ADA among entities with rights and responsibilities; facilitates widespread use, particularly in educational entities, of accessible and usable electronic and information technology (IT); facilitates the expansion of training programs by incorporating enhanced distance learning methods, including teleconferences, Web-based training, and electronic discussions, that are designed in a fully accessible and useful manner; and identifies and disseminates best practices in employment and IT to encourage and support replication. This story was submitted by Shelley Kaplan.

---

David's Story

David Raley, a concession stand owner in Tuscumbia, Alabama, has taken the initiative and made his ramp accessible with the advice of the Southeast Disability and Business Technical Assistance Center (SEDBTAC).

Raley owns and operates a concession stand at Spring Park in Tuscumbia. He had installed a ramp to his stand but was unaware that the 2-3/4-inch lip at the base of his ramp made it inaccessible for wheelchair users.

While conducting a SEDBTAC project on June 6, 2004, at Spring Park, Raley met with project representatives Betty and Bob Ingram. During the course of the meeting, the SEDBTAC staff praised Raley for having the ramp but pointed out the fact that it was not accessible because of the lip.

Within two weeks of the SEDBTAC's meeting with Raley, he had installed a cement incline to make his ramp fully accessible.

The SEDBTAC project provides expert technical assistance to promote voluntary and effective implementation of the ADA among entities with rights and responsibilities; facilitates widespread use, particularly in educational entities, of accessible and usable electronic and information technology (IT); facilitates the expansion of training programs by incorporating enhanced distance learning methods, including teleconferences, Web-based training, and electronic discussions, that are designed in a fully accessible and useful manner; and identifies and disseminates best practices in employment and IT to encourage and support replication. This story was submitted by Betty L. Ingram.

Angelique's Story

Angelique describes below her experiences while working with the University of Illinois–Chicago (UIC) National Research and Training Center on Psychiatric Disability (NRTC).

After graduating from college, I thought I was ready to conquer the world. I did exceptionally well in school and had a very active social life. I had always been successful at whatever I put my mind to, so I figured starting a career and living in the real world wouldn't be that much of a challenge. Shortly after graduating, I began having anxiety attacks. Sweaty palms, heart racing, extreme nervousness, and the inability to concentrate were some of the symptoms I experienced. I was scared and began doubting myself and my abilities. All my life I had been an overachiever and a perfectionist. I had the tendency to put too much pressure on myself. I began going to therapy and learning how to relax and enjoy myself. Everything seemed okay.

I was still in therapy when I began to have these strange thoughts. I had no sense of reality. I began going on extravagant shopping sprees. I would stay out all night at hotels and not tell anyone where I was. I felt God-like; no one or anything could touch me. I had tons of energy. I would go days without sleep. My parents and friends were worried. I was hospitalized twice before they figured out what was wrong with me. I got the news: I was manic-depressive (also known as bipolar).

I had no idea what this illness was or how I got it. I was never one for medication, so when my doctor told me I may have to be on medication for the rest of my life, I was very angry. It didn't help that the medication made my usual slim frame gain 80 pounds. I had a lot of work to do on myself to help me learn to live with this illness. I had to look deep inside myself to find the love I needed to get me through the rough times. I also had to learn to let go of the past and live in and appreciate the present. I am now 28 years old, and I know I have the rest of my life ahead of me. The label of "manic-depressive" doesn't make me who I am. I create my own reality and experiences. I choose to live a fulfilling life.

That is why I am so grateful for being given the opportunity to participate in research projects like the ones NIDRR funds. The fact that NIDRR funds projects that involve consumers in various aspects of mental health-related research is extremely empowering and beneficial for consumers. Currently, I am a research interviewer for the University of Illinois–Chicago (UIC), NRTC, for a study that examines mental health clients' satisfaction with the services they receive from a large mental health agency located in Chicago. The study, which is an independent project funded by NIDRR, is titled, Differences in Mental Health Service Satisfaction Among Clients Interviewed by Consumer and Non-Consumer Researchers Using Computer-Assisted Personal Interview (CAPI) Technology, otherwise known as the CAPI project. As a mental health consumer myself, I am able to relate and work well with those who may also be dealing with issues involved with having a mental illness. Many of the clients that I have interviewed have told me that they feel more at ease speaking with someone who is also a mental health consumer. In addition, clients have said it is inspiring to see other mental health consumers working and living active lifestyles because it shows them they can do so as well. This experience has made me realize that I want to make a full-time career working in social service. In the meantime, working on this project has led to other employment opportunities as a research interviewer. In addition to my employment with the CAPI project, I am currently working part-time on a project for the University of Wisconsin–Madison that deals with youth in the foster care system. It gives me great joy knowing that I can help others. Through the NRTC and the CAPI Project, NIDRR gives us mental health consumers an opportunity to make a living and help other consumers in the process.

The NRTC project conducts a comprehensive series of research and training projects that focus on increasing self-determination for persons with psychiatric disabilities; develops outcome and measurement tools for key outcomes and program policies related to self-determination; trains consumers, families, and rehabilitation, education, and mental health service providers in issues related to self-determination; and provides information for public policy initiatives. This story was submitted by Pam Steigman.

Anna's Story

Anna Carey's "power scooter" sure wasn't living up to its name. The scooter would not hold a charge long enough for Carey to travel safely without fear of getting stranded.

Carey's credit history did not allow her to qualify for a traditional loan, so the Orlando retiree applied for a Florida Alliance for Assistive Services and Technology (FAAST) low-interest guaranteed loan to purchase a new power scooter.

Carey now has a scooter that is larger, faster, and more reliable. The new scooter provides her with more comfort for her dollar. It sports bigger tires, a large basket for carrying shopping bags, and lights.

Powerlessness is a thing of the past. Carey's new scooter provides the convenience of a plug that can fit into any wall outlet. Since she no longer has to transport a large and heavy adapter box, Carey can travel up to 15 miles on a charge and then plug her scooter in anywhere to get a fast recharge for the trip back home. She has gone from charging her scooter two to three times a day to two to three times a week.

"This is a big improvement in my life," Carey said. "I feel more safe and secure knowing I'm not going to get stranded."

The FAAST project promotes access to, awareness of, and advocacy for assistive technology (AT) by providing comprehensive consumer outreach, awareness, and services and provides AT products and services that enable people with disabilities to participate fully in independent living, education, work, and recreation. This story was submitted by Jane E. Johnson.

---

Candace's Story

Candace Chavez took advantage of the new alternative financing program through BancFirst of Stillwater, Oklahoma. The program offers a low-interest loan for the purchase of assistive technology.

Candace Chavez is a teacher and single mother of 16-year-old Bryan, who uses a wheelchair. Due to her son's growth, it became increasingly more difficult for Candace to transfer him to their vehicle. She applied for a low-interest loan to help her purchase a van and a motorized lift to facilitate the transfer of Bryan and his wheelchair into the van. Chavez said the application process was very quick and convenient. She worked with Peggy Jenkins at BancFirst. The bank provided two checks to Chavez: one to purchase the van and another for the business that provided the van modifications and lift.

The alternative financing program is made possible by BancFirst, Oklahoma ABLE Tech, and the Oklahoma Assistive Technology Foundation.

The Oklahoma ABLE Tech project increases access to assistive technology (AT) for people of all ages and all disabilities through a variety of consumer-responsive systems-change activities and provides information and referral, AT training and technical assistance, AT loan and device reutilization programs, and AT advocacy to improve laws and policies providing access to assistive technology. This story was submitted by Milissa H. Gofourth.

---

Diane's Story

Claudia Sineath is Diane's mother. She recounts her daughter's experience with assistive technology and working with the
NIDRR-supported South Carolina Assistive Technology
Project (SCATP).

My daughter's autobiography naturally begins with the details of her birth: when and where she was born, the labor, and that awful period after delivery when she could not breathe. About it she writes, "I did not die. Thank you, God. That is how I got be CP [cerebral palsy], but I am not MR [mentally retarded]." Such words are a miracle to me, not because she can write them, but because my daughter can finally say them aloud.

Diane is an intelligent, healthy, 51-year-old woman who loves conversation. She uses several kinds of assistive technology, including a wheelchair, but this story is about Diane's experience with augmentative communication. Her mind is like a sponge, and she has always wanted to talk with people. She has opinions to be shared in every discussion and wonderful stories to tell. While our family can understand her speech about 99 percent of the time, that doesn't mean everyone else can. Diane has cerebral palsy accompanied by oral-motor difficulties, so she cannot speak in whole words. A keen listener can figure out what she is saying through facial expressions and oral postures. For words that are more difficult to articulate, Diane will spell them out, but she first blinks to let the listener know that she has begun to say letters rather than words. Before we acquired a communication device, the easiest way to talk to her was by asking yes/no questions. However, this prevented her from initiating topics for conversation or expressing her own thoughts and opinions. Because Diane has so much to say, she has never stopped looking for new ways to communicate.

At 5 years old, Diane learned to type on an electric typewriter using a stick attached to a hockey helmet. While this served a purpose, this makeshift piece of equipment could not be lugged around on a wheelchair. As modern technology developed, our family saw some amazing tools being used by people with disabilities. Unfortunately, Diane could not easily use the new gadgets since they usually required hands or voices to activate them.

We didn't know where to turn for help because, sadly, Diane was usually lumped in with services for the mentally retarded. A friend at a state agency concerned with severe disabilities urged me to apply for services, telling me, "Things are different now." He was so right. Diane's life began to change when a group of people from different agencies started to work together on her communication issues. The South Carolina Assistive Technology Project (SCATP) coordinated efforts with people from the Department of Disabilities and Special Needs, the Midlands regional office, the Disabilities and Special Needs Board of Richland/Lexington, the Head and Spinal Cord Injury Division (HASCI) of the Department of Disabilities and Special Needs, and a contracted speech therapist. They all realized that most important thing they could do for Diane would be to help find a speech tool for her. They looked at Diane's capabilities, tried different things, and came up with an effective solution.

Diane got a demonstration and loan of a communication device, the DynaVox 3100. The man who delivered the last component hadn't even gotten to his car when we heard a computer voice saying, "My Life Story, by Diane Sineath." Diane was off and running and hasn't stopped since.

This augmentative communication device has a 12-inch screen with a picture of a keyboard on it. Unlike traditional keyboards, the on-screen keyboard includes word prediction and lots of icons representing whole phrases, which helps speed up typing. The screen is accessed by an infrared attachment. There are many different ways to activate the screen, but Diane does it using a little dot of sensitive material stuck on the end of her nose, referred to as a "head mouse." In essence, she becomes a human remote control. When Diane moves her head, the computer mouse arrow moves about on the screen. A letter or phrase is "pressed" by pausing on it for a few seconds, her "dwell time." Then the letter or phrase appears in a message space. After Diane is finished composing her message, she pauses on the message space to activate a synthesized voice (nicknamed "Ursula") that says aloud exactly what she typed. The first thing Diane wrote was about her speech pathologist ("I love Debbie"). When she saw this, Debbie said, "My long years of training and experience were worth that single moment of human emotion."

When the 2-week trial period ended, Debbie wrote a report recommending this device as something Diane needed to expand her communication abilities. She then filled out the paperwork required to get the device ordered. We also purchased a wheelchair mount so that Diane can take it with her wherever she goes. It can be plugged into our computer so that she can surf the Internet, send e-mail, print, and more. This new technology allows Diane to easily participate in discussions with her peers. No longer will she be forced to endure people talking to her because now they can talk with her. The professionals who work with her are now asking her for her opinions on whatever is discussed and recommended. She is their peer and loves being treated as one. The joy in hearing her chat with her longtime friends is indescribable.

Diane can finally set free all the words she has held inside for so many long years. We are thankful for all the people from different communities and agencies who have worked together to make a tremendous difference in Diane's life. We continue to get tremendous encouragement, support, and practical help from the SCATP. Its electronic mailing list has been an invaluable source for networking with other people throughout the state as we continue to help Diane live a more active and independent life.

Most of all, I am thankful for the example Diane gives everyone around her. Her intelligence, motivation, persistence, and enthusiasm are contagious, and she finally has a voice to express all her wonderful qualities.

The SCATP project collaborates with state agencies, policymakers, and private entities to overcome barriers that prevent people from getting the devices and services they need for living full and productive lives. This story was submitted by Janet Jendron.

---

Floyd's Story

Floyd Robinson was the main attraction at a Florida Alliance for Assistive Services and Technology (FAAST) vehicle modification training held last spring in conjunction with the Florida Brain and Spinal Cord Injury Program.

"I enjoyed showing my truck. I had my hand controls, and it was very nice to meet people and give a demonstration of how they work," said Robinson.

He's come a long way from being reluctant to ask for help.

As a result of help from FAAST, Robinson can travel independently. He received an assistive technology evaluation of his home and vehicle. The staff at FAAST showed Floyd the technology he would need to be able to be able to drive his red pickup truck again.

"If it wasn't for FAAST, I wouldn't have the hand controls. It's the only way I can drive," Robinson said.

The FAAST project promotes access to, awareness of, and advocacy for assistive technology (AT) by providing comprehensive consumer outreach, awareness, and services and provides AT products and services that enable people with disabilities to participate fully in independent living, education, work, and recreation. This story was submitted by Jane E. Johnson.

---

James' Story

James Emerson, a retired veteran, was isolated in his rural area home and had to rely on others for transportation for doctor appointments, grocery shopping, and emergencies. Since his power chair didn't fit into most vehicles, Emerson would use his manual chair when he rode with others. As a result, he reinjured his right wrist, which had been surgically reconstructed while on active duty in the military. Additionally, he could only tolerate sitting up in his manual wheelchair for 3 to 4 hours at a time.

Through his service-related injuries, Emerson applied to the Veterans Administration for funds to purchase an accessible van, but his application was denied. He heard about the Florida Alliance for Assistive Services and Technology (FAAST) alternative financing program from a friend who had received a FAAST loan. His application to FAAST was approved. Emerson used the FAAST guaranteed loan to purchase a van with a power chair lift. With his accessible van, Emerson can travel with his power chair and prevent further injury to his wrist.

Reliable transportation means Emerson has full access to his community. When there are early morning hospital visits that require Emerson to travel long distances, he is now able to drive to his destination the night before, sleep in his van, and make his appointments on time.

Another bonus the van provides is that Emerson's time with friends is no longer time spent just doing errands. "Because I now have reliable, accessible transportation, I have the independence to be able to hold up my equal share of a relationship. I have the freedom and security to go out to dinner and not have to depend on others," Emerson said.

The FAAST project promotes access to, awareness of, and advocacy for assistive technology (AT) by providing comprehensive consumer outreach, awareness, and services and provides AT products and services that enable people with disabilities to participate fully in independent living, education, work, and recreation. This story was submitted by Jane E. Johnson.

---

Jonathan's Story

Jonathan Fleming was born with prune belly (Eagle-Barrett) syndrome. He has had numerous surgeries, including a cochlear implant and a kidney transplant. He is homebound because of his suppressed immune system.

When Abbeville School District's special education director, Ann Davis, was presented with Fleming's situation, she thought creatively about how his needs might be met. She took the challenge to the information technology director. Their first thought was, "If high schools could use distance education, why couldn't the same kind of thing be done from someone's home?"

They worked with the local cable company and an Atlanta company to connect Fleming's house with a regular class at the elementary school. They also worked with the South Carolina Assistive Technology Project (SCATP) to determine what other assistive technology would best enable him to access his computer.

"It took a matter of seconds for people to latch on that this was something they really needed to do and what it could mean for public relations in their firms. That's how we got the phone company, the cable company, and the software company involved. They realized immediately that this use of technology could really change a child's life," Davis said. "Everyone got excited and started asking, ‘How can we get this going?' We needed to have this in place by the time the school year started, so they moved quickly. Trainers came up from the software company in Atlanta to train the teachers, therapists, and his mother. They installed the equipment, and we were off and running by the time school started."

Fleming has a home classroom set up with many of the same materials his classmates use. He uses an enlarged color-coded, simplified keyboard and trackball to access his computer himself. He works with his mother at the computer and can see the regular classroom at any time during the day. He can move the trackball to see any corner of the classroom. Fleming can participate in class activities as they are going on, and students can interact with him at the same time. He does exercises with them in the morning and responds to questions during instruction and circle time. He can be seen and heard by his classmates on their classroom monitor.

His teacher comes to his house once a week for one-to-one instruction and works with him individually during the day during her classroom planning period and recess.

Linda Flores, his speech therapist, works with him at home. She explains how assistive technology, enabling him to interact with his peers, has improved his language development. "Jonathan has access to some social interaction with other children that he would not necessarily have here in the home. And as far as the language is concerned, he is being exposed to a variety of situations that also improve his ability to communicate and give him the experience he needs in order to develop language skills," Flores said.

One reason Fleming is moving toward grade-level work is the fact that he's able to do his class work consistently. "He is below grade level right now, but he's moving ahead quickly, and he's picked up quite a bit in the last couple of years. For example, before he had his implant, he had no expressive language at all. Since then he's moved forward significantly," Davis said. In the newly begun school year, Fleming has been able to attend school a few hours a day. He is repeating kindergarten with the same teacher he had last year so the classroom is the one is was "in" last year. Davis points out, "He has interacted so well with the others and knows his way around all the centers. It is amazing. This will continue as long as his health remains stable."

Davis emphasizes, "We could not have begun or completed this effort without the training and support we received from the SCATP, The project has also been invaluable in sharing our story with others in the state. Recently they included our story in an interactive CD-ROM that was produced for distribution to South Carolina's school districts. This will lead to tremendous opportunities for networking among school districts for innovations through technology."

The SCATP project collaborates with state agencies, policymakers, and private entities to overcome barriers that prevent people from getting the devices and services they need for living full and productive lives. This story was submitted by Janet Jendron.

---

Josh's Story

Josh Lange is living with progressive mitochondrial disorder and uses a Jazzy power chair with a tilt and reclining seating system. Three days a week, he works at High Desert Family Services in Albuquerque, New Mexico. He also goes to therapy appointments and attends support groups and many social activities.

He and his mother, Susan, were helped through a coordination of services by the New Mexico Technology Assistance Program (NMTAP) and the New Mexico Division of Vocational Rehabilitation to purchase an accessible van to help Lange get to work and his many activities.

Lange's mother contacted NMTAP, and through the low-interest guaranteed financial loan program with First State Bank they were able to purchase a 2003 Dodge Grand Caravan. This is just another example of funding for assistive technology needs through the loan program.

"The van is incredible! Thank you so much for helping us get it," she said.

The NMTAP project examines and works to eliminate barriers to access, availability, and funding for assistive technology (AT) in New Mexico; assists people with disabilities to locate, secure, and maintain AT that can increase, maintain, or improve their functional capabilities; and provides resources both for people requiring assistive technology and those that manufacture and provide AT devices or services. This story was submitted by Caroll Cadena.

---

Joy's Story

Independence, privacy, and strong family relationships are common goals for young people as they reach adulthood. They are certainly important to Joy Crimmins of Dubuque, Iowa, and her family.

Crimmins is a young woman of 20 who has special needs, including the use of a wheelchair. Her parents, Jackie and Vince, knew their home would not accommodate a wheelchair, so they decided to build a ground floor addition, adding a bedroom and bathroom specifically designed for their daughter. This addition meets her special physical needs while giving her the independence and privacy desired by all young adults. It also keeps Crimmins at home, helping maintain her strong relationship with her close-knit family.

"Our first priority was for Joy to have more independence. We also made a decision as a family to keep her close to home and not to place her in a community living setting, " says her mother.

Crimmins receives services through Iowa's Medicaid Home- and Community-Based Waiver Services for Persons with a Primary Diagnosis of Mental Retardation (MR), which is commonly referred to as the MR Waiver. Keeping individuals with disabilities at home with their families is the heart of the MR Waiver. The various Medicaid waiver programs available in Iowa provide Medicaid coverage and additional waiver services to individuals, and one of the components of the MR Waiver is funding for home and vehicle modifications.

Vince and Jackie decided to access the MR Waiver to help them pay to make their new addition accessible. However, when they applied they were told that they would not be able to use the home modification dollars to make their daughter's addition accessible. The family then began looking for potential funding resources, and their search led them to Iowa COMPASS, an information and referral service on assistive technology, funding, and disability services that also provides legal advocacy.

During the telephone conversation with Jennifer Britton at Iowa COMPASS, it became clear that there were questions as to what services should be available through the MR Waiver, so Vince and Jackie received a referral for legal advocacy. The Iowa Program for Assistive Technology (IPAT) has two legal advocacy projects, one through the Assistive Technology (AT) Legal Project at the University of Iowa College of Law and one through Legal Aid of Iowa. The Crimmins family was referred to the AT Legal Project. The advocacy help they received clarified that the accessible toilet and shower were indeed covered items under the home modification component of the MRWaiver. "What we did through the AT Legal Project was to foster clear communication," says John Allen, the professor who oversees the project.

Crimmins says she is very proud of having something of her own and feels good about the independence and privacy it affords her.

The IPAT project conducts awareness and training programs and collaborates with other systems-change efforts; provides information on new and used adaptive equipment and funding and publishes a newsletter; works closely with the state's Olmstead Project and Centers for Medicare & Medicaid Services (CMS) funded projects to improve funding and access to assistive technology devices and services; works with the state's department of education to improve access to devices; and works with the state on the implementation of the state HAVA plan activities. This story was submitted by Amy Mikelson.

---

Kirk's Story

Kirk Garrett Jr. can't walk or talk because of cerebral palsy. He has extremely limited dexterity in his hands. However, none of his physical challenges have kept him from completing high school and college courses with honors, earning an online college certificate in computer technology, and working as a computer technician.

Garrett's father, Kirk Garrett Sr., encouraged the use of assistive technology early in his school years and continued to help him find the best solutions using a full range of assistive technology. "He can't pick up a pencil or pen and write, so the computer and keyboard became his pencil and paper," he says.

When Garrett was in elementary school, his father connected with the South Carolina Assistive Technology Project (SCATP) and learned about the many assistive technology options available to him. Garrett currently uses an enlarged keyboard with his computer.

"There is no way to measure what the SCATP has done for us," Garrett's father said. "Every year we learn about new possibilities when we attend the South Carolina Assistive Technology Expo. One year Kirk brought his employer to the expo to give him an in-depth view of how people with disabilities can work in various settings. The SCATP AT Online Network has saved us time in researching new technology and connected us with people and other resources throughout the state."

Garrett's father, who serves on the Assistive Technology Project's Consumer Advisory Board, recalls when Garrett was enrolled in the online Web design program. "His special keyboard leveled the playing field. While it took him a lot more steps to complete an assignment, no one else knew that," his father said. "The technology was the equalizer that gave him the same empowerment as everyone else."

Garrett uses an enlarged keyboard for his computer. For the mouse function he currently uses a joystick, soon to be replaced with a wireless infrared mouse configuration that will allow him to use his power chair joystick as his primary mouse. This should increase both his speed and accuracy for mouse functions initially by at least 35 percent, and this will definitely improve with practice.

Garrett is currently using a Lightwriter Cherry as his augmentative communication device. He said, "We are searching for the best mounting system that will work with my new power chair that is equipped with a tilt and recline system. This does present a challenge, but it is not a showstopper."

Garrett sums up his feelings about being able to work. "By having this job, I have been given the chance to prove myself and my abilities. That is what is so important for people like me. We disabled people get looked upon as being different and unable to do things like those that are not disabled," he said. "I owe a lot to my employer for taking the time out of his schedule to visit the South Carolina Assistive Technology Expo to explore new technologies available. It is very rewarding to work with someone who really does care and is willing to make accommodations for individuals like myself."

The SCATP project collaborates with state agencies, policymakers, and private entities to overcome barriers that prevent people from getting the devices and services they need for living full and productive lives. This story was submitted by Janet Jendron.

---

Loretta's Story

Loretta Wesley recounts her experiences working with the Florida Alliance for Assistive Services and Technology (FAAST).

On February 23, 2003, my 23-year-old son, James, was severely injured in an automobile accident, which rendered him a quadriplegic. Immediately after bringing James home, we realized that our home was no longer able to accommodate him.

With mounting bills, no money, and insufficient credit, we had no idea how we were going to accomplish the enormous task of remodeling our home. My instincts told me that my son's quality of life would quickly deteriorate if he were forced to live in a nursing home environment. The Florida Alliance for Assistive Services and Technology (FAAST) and Brain and Spinal Cord Injury Program (BSCIP) collaborated and provided the funding to make the much-needed modifications in order to accommodate James.

The FAAST program also provided a computer so that James would be able to stay connected while he pursues his education. James is now able to function more efficiently within our home as well as around the campus of Tallahassee Community College, where he is currently enrolled.

The FAAST project promotes access to, awareness of, and advocacy for assistive technology (AT) by providing comprehensive consumer outreach, awareness, and services and provides AT products and services that enable people with disabilities to participate fully in independent living, education, work, and recreation. This story was submitted by Jane E. Johnson.

---

Peg's Story

Peg H. Radcliffe (not the actual consumer name) is 80 years old. She developed her hearing loss in her early teens and was sent to oral school to learn to lip read and use her residual hearing. She functioned without any amplification until she was 54 years old.

Radcliffe's audiologist recommended hearing aids for her, but her insurance company would not pay for them. She needed two aids costing approximately $1,000 (for both). She was about to cash in her life insurance policy so she could buy the hearing aids when four of her daughters chipped in and bought them for her.

Those aids lasted over 20 years; there were some minor repairs, a few adjustments, and new ear molds, but they lasted. Unfortunately, Radcliffe's hearing deteriorated significantly to where the aids just were not working for her anymore. She was re-evaluated, and her audiologist recommended newer digital hearing aids that cost approximately $1,500 each.

The audiologist gave her information on some funding sources, but she didn't qualify. Radcliffe then contacted the Massachusetts Assistive Technology Partnership (MATP) Center and was referred to a potential funding source for hearing aids. She informed MATP that the source couldn't help her but instead referred her to the Vocational Rehabilitation Agency for the state.

Pat Hill, then the information and referral specialist at MATP, gave Radclfgaret iffe the agency's policy on homemaker goals, explained what the policy meant, and discussed her options. Radcliffe asked Hill to contact the agency on her behalf. The agency did an intake and made contact with Radcliffe.

A worker went out to meet with Radcliffe and at first said there wasn't anything that could be done. However, the worker called her office to talk to her supervisor. The supervisor instructed the worker to open Radcliffe's case as a homemaker goal under vocational rehabilitation. Once this was done, Radcliffe could receive some services—in particular the hearing aids.

Hill went to visit Radcliffe about a week after she received her hearing aids. "We were sitting and talking in her back yard. She stopped talking for a few minutes and was looking around the yard. She asked me, "What's that noise?' At first I wasn't sure what noise she was talking about. She described the sound as a chirping-like noise, but it didn't sound like a bird," Hill said.

"I realized Peg was hearing the squirrel chirping in the tree. She started to cry tears of joy. She never heard a squirrel chirping, never heard the birds before, nor had she ever heard the sound wind makes as it blows the leaves around," Hill said.

Radcliffe is now able to communicate on the telephone, make her own doctor appointments, and attend Mass (she had stopped going because she could not understand what the priest was saying during the service). She watches her favorite TV shows, goes to an occasional movie, and enjoys going out to restaurants with friends and family. All these were activities she had stopped doing because she could not understand what people were saying to her.

The Massachusetts Assistive Technology Partnership (MATP) Center increases access to assistive technology for people of all ages and all disabilities through a variety of consumer-focused activities. The MATP Center conducts statewide project activities, including needs assessment, public awareness, information and referral, training and technical assistance, funding and policy development, individual and systems advocacy, and project coordination. This story was submitted by Pat Hill.

---

Philip's Story

An alternative financing program (AFP) low-interest loan through BancFirst made it possible for the Goree family in Tulsa, Oklahoma, to easily acquire a loan to purchase hearing aids for their 10-year-old son, Philip.

This is the first set of hearing aids Goree has ever worn. Goree's father knew that his son had some difficulty hearing, but after it became apparent a few months back when the birds were flocking in the Tulsa area that Goree could not hear them, he knew he needed to do something.

Goree chose a clear plastic style so everyone could see the inner electronic workings; he thinks that is a really cool feature. Now he can hear the birds and much more. His father said, "The fact that this program exists made our decision much easier. Philip's hearing loss was not profound, but he needed hearing aids, and we did not have ready cash for this type of purchase. This program made it possible."

Oklahoma recently passed a law that states that businesses with 50 or more employees will provide hearing aids through health insurance coverage for employees' children up to the age of 18; however, Goree's father is not employed by a company with more than 50 employees.

Independence is priceless. The BancFirst low-interest loan program provides better access to the equipment and devices people need to live more independently. BancFirst, Oklahoma ABLE Tech, and the Oklahoma Assistive Technology Foundation make the alternative financing program possible.

The Oklahoma ABLE Tech project increases access to assistive technology (AT) for people of all ages and all disabilities through a variety of consumer-responsive systems-change activities and provides information and referral, AT training and technical assistance, AT loan and device reutilization programs, and AT advocacy to improve laws and policies providing access to assistive technology. This story was submitted by Milissa H Gofourth.

---

Samuel's Story

Samuel Sardes learned about the Florida Alliance for Assistive Services and Technology (FAAST) alternative financing program from the Multiple Sclerosis Society.

In 2002, Sardes' toilet tank broke while he was in a nursing home recovering from heart surgery. His condo flooded, which caused mold and extensive water damage to the walls and floors.

Sardes applied for a FAAST loan to fund home modifications. Sardes, who has an amputated right leg, multiple sclerosis, diabetes, and depression, uses a manual wheelchair for his mobility. Thanks to the FAAST loan, he was able to replace the broken toilet with a new accessible toilet. He also replaced the damaged carpet with vinyl tile, making it easier to move around with his wheelchair.

Sardes had grab bars installed around his home and replaced the mold-damaged walls and shower stall. Before these improvements, he often fell in his home. Since the home modifications were completed, Sardes' life has become much less stressful.

"My disabilities are numerous; however, my condo is under control, which means my safety has improved dramatically," Sardes said. "It is my opinion that the logic behind the loan program was excellent. In summary, the FAAST loan program rose to the occasion of making my life happy."

The FAAST project promotes access to, awareness of, and advocacy for assistive technology (AT) by providing comprehensive consumer outreach, awareness, and services and provides AT products and services that enable people with disabilities to participate fully in independent living, education, work, and recreation. This story was submitted by Jane E. Johnson.

---

Scottie's Story

Scottie Wilson (not the actual consumer name) wanted to write. His parents wanted him to write. His teachers in the Joplin, Missouri, school district wanted him to write. Yet as hard as they tried, finding a method to allow Wilson to write had eluded everyone until an occupational therapist in the school district suggested borrowing an AlphaSmart 3000 from the Equipment Technology Consortium (ETC) Program for this elementary school student with autism.

Missouri Assistive Technology, a NIDRR-supported project, operates the ETC, a short-term assistive technology equipment loan program for school districts and agencies in Missouri.

There were three primary barriers that conspired against Wilson writing: he applied little pressure, he had no regard for boundaries, and the characters that he did get on paper were not legible. Prior attempts to improve his writing through the use of low-tech solutions such as hand weights, adaptive pencils, and adaptive markers had all fallen short of their intention. Wilson, as a result, experienced great frustration with the process, which resulted in an increase in negative behaviors such as loud vocalizations, rocking, and throwing objects.

By borrowing the AlphaSmart 3000 through ETC, the school district was able to try a different approach, one that ultimately proved successful for Wilson. Upon receiving the device, a trial was set up so that data could be collected and used to evaluate Wilson's success using it and to justify the purchase of an AlphaSmart 3000 if the outcomes were positive. An AlphaSmart 3000 is one of several portable word processors that have shown to be effective and appropriate assistive devices for individuals who struggle when using traditional tools for writing. At the completion of the device trial, the data clearly showed that through the use of the AlphaSmart 3000, Wilson could independently spell words for the first time. This event was such an unexpected surprise that Wilson's mother was skeptical until she was shown a video of her son using the AlphaSmart 3000.

Nearly two years have passed since Wilson was first introduced to the AlphaSmart 3000. The school district, which purchased an AlphaSmart for him, reports that he willingly utilizes it as his primary writing tool and that he is now able to complete assignments in a timely manner in a regular classroom.

Missouri Assistive Technology provides adaptive telephone equipment and adaptive computer equipment; provides assistive technology (AT) low-interest loans; operates an AT equipment loan program and an equipment recycling program; runs an assistive technology reimbursement program for school districts; and provides training, technical assistance, and policy advocacy such as providing information on the AT lemon law, sales tax exemptions on AT, managed care reform, and accessible state information technology standards. This story was submitted by David Baker.

---

Stacey's Story

Stacey McCoy feels guilty when she misses a class. She has an easy smile and will fall into conversation with you as effortlessly as with an old high school friend. She does well in school and catches a B2A880 occasionally. When she graduates, she wants to become a speech pathologist.

Just 2 years ago, McCoy did not think she would ever go to college. At 23, she underwent surgery to remove a brain tumor. During the operation, McCoy suffered a stroke, which caused paralysis on the left side of her body, peripheral blindness, and occasional seizures.

McCoy received rehabilitation, and with the aid of educational funds from Florida's Division of Vocational Rehabilitation, she enrolled in Tallahassee Community College last year.

Getting to campus requires 2 to 3 hours of preparation in addition to the time it takes for her transportation to arrive. For this reason, McCoy decided to take some of her college courses at home. She needed a personal computer that would fit her needs since commuting to a computer lab was just as difficult as getting to class.

McCoy's counselor at the Florida Division of Vocational Rehabilitation encouraged her to apply for Florida Alliance for Assistive Services and Technology's (FAAST's) Computer Recycling Program. FAAST approved McCoy's application, and she received a refurbished Dell just in time for the fall 2003 term. Now McCoy writes term papers, does research, and participates in distance learning independently.

"It took me a long time to even have a conversation with my friends because of cognitive differences," said McCoy. "Now I feel like as a person I've completely changed. Before I wasn't able to go to school; now I can."

The FAAST project promotes access to, awareness of, and advocacy for assistive technology (AT) by providing comprehensive consumer outreach, awareness, and services and provides AT products and services that enable people with disabilities to participate fully in independent living, education, work, and recreation. This story was submitted by Jane E. Johnson.

---

Tina's Story

Tina Bloomfield (not the actual consumer name) is a typical 19-year-old who wanted to be employed, but she needed a Hoyer Lift at her work site. Since Bloomfield is not a client of the Iowa Division of Vocational Rehabilitation Services, there are no funding sources to purchase the lift. Nancy Thomas, community care coordinator with Child Health Specialty Clinics, called Iowa COMPASS, which is an information and referral service through the Iowa Program for Assistive Technology (IPAT).

Jennifer Britton at Iowa COMPASS provided information on various agencies that might have a Hoyer Lift for loan or purchase. After only one more phone call, the equipment was secured at no cost. Bloomfield looks forward to going to work each day and is proud that she is earning her own money.

The IPAT project conducts awareness and training programs and collaborates with other systems-change efforts; provides information on new and used adaptive equipment and funding and publishes a newsletter; works closely with the state's Olmstead Project and Centers for Medicare & Medicaid Services (CMS) funded projects to improve funding and access to assistive technology devices and services; works with the state's department of education to improve access to devices; and works with the state on the implementation of the state HAVA plan activities. This story was submitted by Amy Mikelson.