–Gerry Hinson, Service Coordinator/Nursing Home Transition & Diversion Waiver Program
As a Service Coordinator within a Medicaid Waiver program, I work for an Independent Living Center. Under this program’s rules, set by the DOH, each participating person with whom I work in this program must have a Plan for Protective Oversight (PPO). Some parts are quite sensible, especially evacuation & disaster contingencies, identifying emergency contacts, & listing Health Care Proxies, and living wills. The intent is unarguably benevolent: ensure that anyone being supported in community living is not alone in the world. Someone with reliable contacts & resources usually has a better quality of life, both health- and safety-wise, than someone who is basically isolated, or with far distant contacts. However, the road to hell is paved with good intentions. If I am simply listing family members, locations, & phone numbers as reported by that Program Participant for the sake of completeness & contingency, there is no problem. However, I am expected to have each such person sign the PPO, as if they are involved in—and are needed as ‘protection’— thus infantilizing the participant. I have had Participants object to these people being regarded as their ‘protectors’, and these same contacts object for the same reasons. In exploring this dilemma I am inspired to reflect on its impact on the Independent Living Philosophy
Independent Living? Or, simply Community Living?
In the course of everyday life and ordinary thinking, hearing the word ‘Incident’ brings to mind severe accidents, disasters (natural or not), crimes, or serious negligence. In the world of funded health programs, however, the range of additional conditions or situations which are categorized as Serious Reportable Incidents includes Illness requiring hospitalization or treatment, falls, seizure episodes, and Death (even if from a progressive illness or a sudden heart attack or stroke). Serious Reportable Incidents require a formal Investigation process and report, including Witness Statements under separate conditions, submission of hospital Discharge and Treatment Plans or Death Certificates, projections for prevention (including recommendations for nutritional Counseling, smoking cessation clinics, dietitian consults, & other options). The current Investigation format was put into effect about 2 years ago, and was mandated by the NY State DOH Incidents and illness are considered mostly preventable with tighter oversight and control. One episode of falling from a sofa or a wheelchair in a Participant’s own home, which had been discussed in a round-table meeting, proposed for consideration a plan to prevent that person from trying to stand at will, even to the point of using a seat belt or other restraint means to insure fully against falling. Are we to consider our participants not capable of taking responsibility for their decisions and the risks they take?
Is this typical of most persons living in the community who aren’t in funded programs? Ed Roberts, the father of Independent Living, though on a respirator, swam with the dolphins, certainly not medically advisable. Many people, including myself, at some point have expressed the well-known sardonic observation: “Birth Causes Death”; or “Living life to its fullest means taking risks”. A person who desires to leave an Institution (or wants to stay OUT OF one), and requests the help of formal support agencies and programs, to provide the services needed to enable home & community living must often have health care professional sign off on a plan.
My recent Transition work leads to a radical question: Is ‘Independent Living’ now a realistic or useful goal?
Does it describe our work, or the mission of our agencies, accurately? Can we re-frame the model to be less dependent on medical professionals? Perhaps we should strive for ‘Autonomous Living.’: One can manage her own affairs with as little help as is possible, makes her own decisions and takes as many initiatives as she is able, & requests assistance, whether from me, her relatives, or friends, only when it proves necessary. To the extent possible for each person, in my judgment (not speaking for others) this would be the proper framework, aim, & outcome of our work—and our movement. By contrast, I would label other situations or outcomes as either ‘Supervised Living’ or as ’Controlled Living’, corresponding to lessening degrees of autonomy.
The Social-political impact
Looking at the status of many of my consumers, co-workers and other colleagues have raised the issue: ‘Can you really call it “independent living” when someone needs this much assistance, and personal care?’ I can vouch that the life changes for my consumers have been positive: they have returned to, or, remained in the community, & have shown that institutional care, with its life limitations and loss of self-direction, is not necessary for them or for others with similar circumstances. In the current social and political battleground (sorry, but there’s no other way to characterize it), the very idea of rights held by persons with disabilities, has become an issue of argument. Conservatives ask: Can our nation afford the cost of support?; Are budget deficits burdening future generations? Some lawmakers are using ideas dating from the times of Poor Richard’s Almanac about the immorality of deficits, and our duty to not be a burden. I’ve heard expressions of spite: ‘They want Independent Living? Then let them live independently, & not on my dime!’ You can hear such attitudes on ‘talk radio’, or see them as posts in issue threads, as I have. Traditional liberals often question whether persons with physical disabilities are at risk in community living. Both of these warring ideologies undermine the underlying independent living philosophy and question its validity.
As to the future of our Movement: when pushing for reforms in the public sphere, an essential tool is framing the issue and getting attention—and then, holding attention. “Independent living” has a bite to it, a very clear contrast to what had been the limited expectations & practices foisted upon persons with disabilities. It has clarity of image in the public mind. In this respect, it has served its purpose well. For those reasons, changing the label, whether formally or informally would be distracting and less effective in the forums where the Movement’s advocates interact with social power structures. However, in terms of direct service & programs, posing ‘Independent Living’ as our aim a) is an unrealistic description of the possible outcome, and b) merely has given ammunition to the opponents of our movement, allowing them to claim that we want funding for impossible and deceptive aims.
So, the current social climate (for political tides do not flow from a vacuum) may be serendipitous, causing us to come to a reckoning with our framework & practice which was both inevitable, and potentially beneficial. The vast majority of people, I believe, will identify their potential life stages with others who currently and visibly receive supports to live alongside them. Presenting the aim more realistically makes public acceptance more likely (hopefully!)—and is more in keeping with the actual historical conditions of civilized life. [The battle has been joined—rhetorical weapons only please!]
(Inspired by Justin Dart, Ed Roberts, Frieda Zanes, Marian Saviola, Disabled In Action, Scott Smith and Mel Tanzman)