Championing Choice for Individuals with Disabilities

by Madeline Smith
PARC

Increased community awareness and tolerance are needed to foster greater freedom of choice for individuals with disabilities.

Among all of the changes facing the healthcare industry in Illinois and across the country, it is notable that one local nonprofit is paving the way with its own changes. PARC (Peoria Association for Retarded Citizens) has been providing services to individuals with disabilities in this community for more than 60 years, and while many are familiar with its programs, a large segment of the community is unaware of the specific obstacles the organization faces.

At the Heart of the Matter
With clients almost exclusively on Medicaid, the struggles faced by individuals and families alike are not unique to PARC participants. But what is unique is the way a shift in service delivery is being aggressively pursued—one that’s overwhelmingly person-centered, rather than disability-focused. At the heart of the matter is choice. While massive strides have been made toward options and choice in this sector of services, there is still a lack of freedom and choice for individuals with disabilities, even in the most independent of scenarios.

Where does choice fit into a day that’s driven by contractual provisions and staffing constraints? “We must change the entire way of thinking about services,” says Doris Hayes, vice president of quality improvement. “When we want to go to the doctor, we open the phone book, find nine doctors, figure out who is covered by our insurance, and find the one that best fits our needs. Our task is to find a way to enable that sort of choice for our individuals, as the obstacles they face are different. If they want to find a new doctor, they are limited by who will take Medicaid, who is willing to see an individual with a disability, and in some cases, even which offices are handicap-accessible.”

Whenever choices can be facilitated by PARC, they are. Choice is enabled through a new way of measuring outcomes based on an individual’s goals, which are articulated by the participants and the people closest to them. The structure for these outcomes and the services supporting their pursuits are rooted in a devotion to providing individuals with a sense of freedom, goals and outcomes. This is evidenced by the transition from a focus on protection of our individuals—restricting them to what is safe and easy (diet, exercise, medication, etc.)—toward a new emphasis on choice. This new way of service provision looks no different than the choice we face when we leave the physician’s office having been told we should adjust our diet or begin a new regimen. Yet none of this change will have an impact if the ingrained mentality toward services for individuals with disabilities does not change—and frankly, if there is not newfound community tolerance and awareness, with an emphasis on inclusion and acceptance.

Rebranding: The “R” Word
The proverbial elephant in the room is the unspoken belief that individuals who are “retarded” can’t make decisions. It is that word and that mentality that PARC seeks to dissolve through a revived concentration on choice and through a rebranding process, both internally and externally.

At its inception, the term retarded was more of a medical term than the distorted adjective it has become in the years since. A single visit to PARC makes it obvious that this term does not represent the people, classes, work, learning and growth that goes on here. It is the desire to disaffiliate with the “R” word and its meaning that prompted this rebranding process, which will culminate in a new name unveiling in March. After more than six months of collaborative work with the local marketing firm Gelia, PARC will announce its new name and tagline that more accurately represents its mission, values and work. While the name will be new and free of insulting connotations, it will represent both the history and future of PARC’s programs and advocacy for individuals with disabilities in this community.

What quickly became evident through the research and brand discovery phases was a deep awareness of the “R word” and its implications to all audiences, including participants, staff, families, board members, community partners and volunteers. It was clear that everyone knew what it stood for, but it was almost unanimously disregarded because it does not accurately or appropriately describe what PARC’s work and mission represents.

Words like growth, potential, change, dreams, hopes, goals, love, acceptance and dedication ring much truer to the organization’s mission. Those who come to PARC to build vocational skills, learn acrylic painting techniques, earn a paycheck doing data entry, or study world religions are not concerned with staffing restraints, or how legislative change affects services, or who is underfunded. People with disabilities care about the same things everyone cares about when beginning their day: their appearance, what to wear, transportation, being on time, their next meal or snack, being nervous or excited for a big meeting, seeing their friends, and looking forward to their weekend plans.

PARC’s responsibility is to create a safe place for there to be options and the freedom to live a fulfilling life. The community’s responsibility is to acknowledge potentially inaccurate assumptions or lack of awareness, and move toward a willingness to face any intolerance, whether at work, the grocery store or even the doctor’s office. iBi

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Source URL: https://www.peoriamagazines.com/ibi/2013/feb/championing-choice-individuals-disabilities