In 2009, the Robert Wood Johnson Foundation (RWJF) named David W. Carey a RWJF Community Health Leader in recognition of his work as an advocate for people with disabilities and his role as a founder of Inspire, a human-services cooperative.
The problem. People with disabilities face many challenges in their pursuit of independent and meaningful lives. These range from public transportation and built environments that do not always accommodate them to a lack of control over the design and execution of the human services—such as assistance with bathing or household chores—that they depend on.
A life-changing accident. A three-sport athlete in high school, 6-foot-4-inch David Carey moved from Bay City, Texas, to Phoenix in the spring of 1988 to attend Scottsdale Community College. The school was the first step toward an important collegiate goal: playing baseball at Arizona State University.
But tragedy struck on March 7, 1989, ending his baseball aspirations. Carey’s roommate—who had returned to the apartment they shared after a night of drinking—was playing with a gun, which he didn’t know was loaded. He accidentally fired the gun, hitting Carey, who was asleep in his bed. The accident left Carey a quadriplegic with only slight movement in his hands.
Determined to be independent and active. Such an outcome would have been enough to cause many people to give up—but not Carey. He graduated from Scottsdale Community College in 1993 and earned a degree in physical education from Arizona State University in 1997. During his tenure at Arizona State, he created a resource manual for other students with disabilities and organized the university’s first assistive technology exhibition.
“Assistive technology helped me go back to school and get into the workforce. Before this technology, people like myself would be stuck at home watching TV all day,” Carey says. (Assistive technology is a broad category that includes motorized wheelchairs and specialized computer hardware and software.)
Sara Wilson, executive director of Inspire, says that Carey “is the least inclined person to be cooped up in the house. He is very active.”
His experience as an athlete buoyed his optimism as he learned to live with his disability. “I didn’t know what to expect and maybe that was a good thing,” Carey says. “In baseball if you go to hit the ball and have two strikes, as long as you keep going, you have a chance. If you haven’t had a hit in the last fifteen at bats, you always feel the next time is your time.”
Career as a leader and advocate. Since college, Carey has channeled his energy into helping other people with disabilities live full lives. “What happened to him in college has made him a powerful person today for the disability community,” Wilson says. “He can think from the perspective of a person living with a disability and all of the challenges that come with it. He can advocate, with strength, for all of them.”
Carey’s first job after college combined two part-time jobs. He spearheaded outreach to minorities with disabilities through a grant-funded job at Arizona Bridge to Independent Living, a nonprofit advocacy and services organization in Phoenix for people with disabilities. He also worked for the state of Arizona answering questions from the public about their rights under the federal Americans with Disabilities Act.
After a year, he transitioned to his current full-time position as an advocacy specialist for Arizona Bridge. In this job, he advocates for public policies favorable to people with disabilities. He also organizes conferences designed to show people with disabilities what products and services are available to help them. In 2012, 1,500 people attended a health fair and about 500 attended an assistive technology conference he organized. He also helps people resolve personal issues—such as disputes with landlords or vendors of durable medical equipment.
A focus on public transportation. Much of his advocacy work has revolved around making public transportation accessible to people with disabilities. For example, in 2012 Carey—along with Phil Pangrazio, president and chief executive officer of Arizona Bridge, and others—persuaded local public officials to authorize a feasibility study on adding a light rail stop outside of Arizona Bridge’s facility.
“We are located in an area with the longest stretch (two miles) without a stop,” he says. The light rail stop would make it much easier for people with disabilities to get to Arizona Bridge and access the organization’s services, which include employment counseling, a sports and fitness center, and computer lab.
Carey also routinely examines existing public transportation systems to ensure they are accessible for people with myriad disabilities. “With new buses, we have to make sure there is enough space to move around with wheelchairs. When it comes to light rail, we make sure there are no obstacles to get on the light rail and that there is adequate signage for someone who is visually impaired. We also make sure they can access the ticket machines,” Carey explains.
Carey himself is a good example of the degree of mobility people with disabilities should expect and demand. “He will get anywhere. He does not have limitations,” Wilson says. “Other people are inspired by that. He encourages people living with a wheelchair to not let the wheelchair limit where they go. You can still get there. If you find out you can’t get there, you need to advocate for the accessibility so you can get there.”
Community Health Leader perspective. In 2009, RWJF named Carey a RWJF Community Health Leader, an award that recognizes individuals who overcome daunting obstacles to improve health and health care in their communities.
Carey used the $125,000 award to help develop Inspire. “That money was very timely—during the recession in Arizona—and kept us afloat,” Carey says.
Inspire grew out of a grant from the Centers for Medicare & Medicaid Services to deliver human services—such as personal assistants who help people with activities of daily living—through a cooperative model in which members decide what services will be offered. Wilson, who managed the grant project, helped launch the Federated Human Services Cooperative. Federated provides technical support, group purchasing, educational opportunities, and other services to a network of local, member cooperatives.
To persuade local groups to launch human services cooperatives that would become members of Federated, Wilson routinely gave presentations. “David was one of the advocates who attended one of those group sessions,” Wilson recalls, and as a result, Carey and four others created Inspire in 2006. Hired in 2007, Wilson was appointed Inspire’s full-time executive director in 2011.
Inspire provides four types of services to members:
- Attendant care—personal assistants help members with services ranging from light housekeeping to bathing and dressing.
- Habilitation—focusing on special developmental skills, behavioral intervention and sensorimotor development personal assistants help members learn essential life skills for hygiene, health, safety, and self-sufficiency.
- Music therapy—therapists use music to help members modify or change behavior or improve skills.
- Respite—personal assistants fill in for a primary caregiver on a short-term basis.
Inspire—with annual revenues of $530,000, 80 employees, and 55 members—is primarily funded through a contract with Arizona’s Department of Economic Security, Division of Developmental Disabilities.
Through an annual process, the department and disabled individuals jointly develop an individual services plan, which details how many hours of what services, such as personal assistance, the state will pay for. The individuals then hire a state-approved agency, such as Inspire, to provide the services.
Next steps. Inspire plans to re-incorporate in 2013 as a nonprofit organization. Under the new structure, the organization would still be member driven but also would be able to apply for grants from private and public sources to augment state funding.
As Carey—who is chairman of the board of both Inspire and Federated Human Services Cooperative—explains, “We are a relatively young group. We are still trying to work out the kinks and keep our heads above water.”
In addition to Inspire and Federated Human Services, Carey has served on other local boards, including the Arizona Spinal Cord Injury Association in Phoenix, the Phoenix Mayor’s Commission on Disability Issues, and the Centers for Habilitation in Tempe.
When asked how he found the strength to move forward after the accident, Carey says, “I had a good support system from family, friends, and members of the public who reached out to help.” Carey’s parents and sisters relocated from Texas to Phoenix right after the accident to help him.
“Often, we say that people should pick themselves up by their bootstraps and make their own way, but the bottom line in society is, if you don’t have the programs and services to help people empower themselves, no matter what they do, it is going to be very difficult if not impossible to succeed.” Carey points to the fact that vocational rehabilitation gave him the skills he needed to go back to school and then get a job.
“Unfortunately, a lot of states like Arizona have taken away a lot of the money for vocational rehab,” he says. “As a result, a lot of individuals are not getting served and are not able to get jobs.”
RWJF perspective. RWJF recognized the first 10 Community Health Leaders in 1993. They are unsung and inspiring individuals who work in their communities—often among the most disenfranchised populations—to address some of the nation’s most intractable health care problems. The formal recognition of these Robert Wood Johnson Foundation Community Health Leaders and their programs often launches them to greater levels of influence and extends their reach to serve more vulnerable populations. For more information on the program see Program Results Report.
Under the RWJF Community Health Leaders award, each year RWJF has provided a $125,000 award to 10 individuals and their organizations ($105,000 supports a project at their organization and $20,000 goes directly to the leader for personal development). RWJF also connects the RWJF Community Health Leaders with each other so they can continue their work with the support and experience of their peers and previous award winners.
“Community Health Leaders are characterized by three specific traits—they are courageous, they are creative, and they are committed,” says National Program Director Janice Ford Griffin. "The Foundation recognizes the tremendous resource of experience among the leaders and we look forward to mining that resource as we consider future initiatives.”
“Through the Robert Wood Johnson Foundation Community Health Leaders award, we at the Foundation have the opportunity to recognize innovative and courageous local leaders behind ground-breaking efforts in communities across the United States,” said Sallie George, MPH, program officer at RWJF. “These individuals remind us that one person can have a powerful impact on health and health care within their communities.”
The last round of leaders was chosen in the fall of 2012.