Being in, and of, the community: the power of the CMS rule and us

By Beth Mineo

What constitutes “community living?” There’s the sense, not just in Delaware but across the country, that battle lines have been drawn between those espousing opposing perspectives on this matter. On one side are those who celebrate the victories of the ADA, and the Supreme Court’s Olmstead decision, and the countless state and local efforts to ensure that people with disabilities have the right to be—and actually are—fully included in their communities. In education, employment, housing, transportation, recreation … in, a word, everything. The opposing faction frets that full community inclusion threatens the well-being of individuals with disabilities by exposing them to the realities of life as we know it.

This clash in philosophies has simmered for decades, but the stakes became much higher when the Centers for Medicare and Medicaid Services (CMS)—a major funder of residential and habilitation services—issued a new rule indicating that its “waiver” funds can only be used for services that don’t isolate people. So advocates for authentic community inclusion cheered “YAY!!!” while others cried “FOUL!”

Since the new rule went into effect, stakeholders across the country have been engaged in describing how their service systems will be transformed to ensure that folks with disabilities have real choice in deciding where they will live, with whom they will live, and how they want to spend their time. In Delaware, there have been public hearings and workgroups, and an uncharacteristic amount of mud-slinging and back-stabbing, which is just not The Delaware Way. In order to have real choice, however, there has to be a continuum of options available, and that’s where Delaware and other states are struggling. Our service system has not evolved at the same pace as society’s awakening to the hopes, dreams, rights and capabilities of people with disabilities. We do not have enough innovative service delivery models that support people to live the lives of their choosing, with supports appropriate to their needs. Because such innovative service delivery models are not the norm in Delaware (yet), people who need residential or habilitation supports often take what they are offered or do without.

And that’s where CMS comes in. The changes in what CMS will pay for incentivize the emergence of new, person-centered models of support. There’s no question: funding drives action. When the cost of cigarettes went up, that was just the push that many folks needed to quit the habit. In this case of funding for disability-related services, the pipeline of funding that has perpetuated isolation of people with disabilities is going to dry up, and in its place will be a stream of funding that enables the country to finally walk the talk. Systems can’t evolve until that evolution is enabled by a shift in funding.  I applaud our nation’s leadership for acknowledging that the federal government needed to be a part of the solution. We can’t talk about the ADA and inclusion and integration of people with disabilities into the fabric of their communities if the embedded infrastructures in our states and cities and communities continue to support service structures that serve to isolate people.

Yet while the re-direction of funding is necessary for achievement of authentic community inclusion, it is most definitely not sufficient. A person can be in the community without being of the community. And what changes the dynamic from “in” to “of”? Being connected, that’s what. The $64,000 question is how people get connected. Abundant research verifies what a lot of us already know: In towns and cities across America, people are becoming even more isolated. A recent study done by the Pew Research Center found that fewer than half of American adults know most or all of their neighbors. When survey respondents were asked if they knew the names of the neighbors who live close to them, 19 percent of adults said they knew all of their neighbors. Another 24 percent said they knew most of their neighbors. This left the majority of American adults knowing only some (29 percent) or none (28 percent) of their neighbors by name. Results of the most recent General Society Survey reveal that Americans have one-third fewer confidants than they did two decades ago (McPherson, Smith-Lovin & Brashears, 2006). These data are not about people with disabilities. They are about us as a nation. And I can relate.

My family recently moved into our new house near the University of Delaware campus. Not one neighbor knocked on my door. Not one caller with cookies came by. But then something that started out badly turned into something really cool. We have a 12-year-old poodle that we rescued more than 10 years ago from terrible living circumstances. One morning about a week into our residency in the new place, the back door was inadvertently left standing wide open, and Erin was gone in a flash. Family members fanned out through the neighborhood for hours, calling her name. A person living in the next block asked my husband what had happened, and next thing I knew, that person — Jamie — was at our back door wanting more information so that he could put an alert out on the neighborhood email list. Within an hour, a car pulled up in front of my house. First to emerge was another neighbor, and then Erin jumped down from the front seat! I then learned that in response to Jamie’s email, people had poured out of their houses to search for my fuzzy white dog. They spotted her, and surrounded her stealthily so she wouldn’t get spooked. Another neighbor drove up in her car, opened the door, and Erin jumped in. And then my beloved pup was delivered to my waiting arms. I hugged the person who brought her back—who it just so happened I knew from the University—and then I hugged Jamie, who had been a perfect stranger to me only an hour before.

If you haven’t already figured it out, the point of this story about Erin’s homecoming is that relationships arise from meaningful shared experiences. I didn’t meet Jamie because he showed up at my door the day the moving truck arrived out of some sense of duty. We met because we shared concern for a little lost dog.

The Center for Disabilities Studies at the University of Delaware is a proponent of authentic community inclusion, and we at the Center seek to be the change we wish to see in the world by offering a multitude of opportunities for people with disabilities to connect meaningfully with others—people with and without disabilities—as they discover shared interests, work toward common goals, and just plain have fun together. Our annual Artfest brings people with disabilities young and not-so-young together with University of Delaware students to unleash everyone’s artistic side while having a great time. Our Community Connectors program provides adults with disabilities a backdrop for the development of leadership skills as they collaboratively plan and execute outings, fund raisers, and service projects. This program is facilitated by CDS staff and students, and draws participants who live at home with their families, in group homes in Newark and elsewhere, and in supported and independent living arrangements in the community. Our Career and Life Studies Certificate (CLSC) program, geared for young adults with intellectual disabilities, provides academic and employment skill development opportunities in the context of the UD campus and surrounding community. Students are fully integrated into all aspects of campus life, including clubs, classes, athletics, and of course the social life on Main Street. Graduates from our program go on to other academic pursuits, get jobs (some at UD), and return to mentor other students.

And then there’s the Disabilities Studies minor at UD. While other universities have a similar minor, none of those universities can boast that it is the largest one on their campus. UD can. Students enroll in the minor because they want to enrich their career development or because they want to deepen their personal perspective on disability issues. Each year, as hundreds of students engage with the academic content and experiential opportunities afforded through the minor, they become ambassadors for inclusivity and civil rights. Through class projects, involvement in Best Buddies and engagement as mentors to students in the CLSC program, they forge authentic, enduring relationships with the people with disabilities with whom they connect. Take, for example, the bond between Jenn, a former student of mine in the Senior Seminar in Disabilities Studies as well as in a speech-language pathology course, and Kirtee. While other graduates partied down after commencement, Jenn headed up I-95 to North Wilmington to introduce her friend to her proud family members from out-of-state. As she noted in an interview with the Newark Post on graduation day, both UD students and the people with disabilities with whom they interact are enriched by the time they spend together. http://ow.ly/P3MCx

The data from our own programs is consistent with research findings on authentic inclusion in schools, in the workplace, and in the community. Inclusion enhances everyone’s life experience. It empowers us to conduct ourselves with grace in an increasingly diverse world. It leads to meaningful and mutually-supportive relationships, the kinds of relationships that each of us come to rely on as our safety net of support. Natural supports—the kind of support that people provide because they want to, not because they are paid to—are what emerge from people being of their communities.