By Tony Swartz
One last time, I must preface my observations and comments regarding the state of services for the blind in Pennsylvania provided by private agencies with this disclaimer: my observations and comments are solely mine and do not necessarily represent the opinion of the leadership and membership of the Pennsylvania Council of the Blind.
In part one, I explained how member agencies of the Pennsylvania Association for the Blind, the predominant private provider of services to those with vision loss in Pennsylvania, have traditionally relied upon the charity model for the greater portion of their funding. I further explained that this form of funding is prone to significant fluctuation, and by the nature of its haphazardness and unreliability, dominates the efforts of agency boards, significantly influencing agency program planning. Furthermore, the constant chase for dollars leads agencies to take what they suppose as the path of least resistance in their funding appeal messaging.
In part two, in discussing messaging, I explained the difference between the sympathetic versus the empathetic funding appeal message and how the sympathetic message fosters the belief that the blind are best served through a custodial (“Our job is to take care of them.”) service approach. Though agencies relying on this form of messaging to the community may have garner more dollars in the past, this message now threatens to poison their path towards sustainable funding. Today’s funders, be they health insurers or private or public/governmental funding entities, are far less willing to interpret goalless recreational and social gathering events as fundable services. Rather, they are far more likely to consider funding services which promote as much as possible the resumption of independent life, together with the expectation of measurable outcomes. In other words, services which tend to fall into the fee-for-service category: a far more reliable and sustainable funding source. But the charitable model for agencies serving the blind has been built on the notion of holding on to their clientele, with services which tend to foster agency dependence. “Don’t worry, give us the money and we’ll take care of them forever.”
Feel free to consider me slow-witted, but it was only after my involvement during 2012 in a failed attempt to negotiate a merger between an agency for the blind and a for-profit health provider, that I finally came to see the economic unsustainability and budgetary disadvantages of the charity model. As I saw how other service agencies distanced themselves from the charity model and built their economic viability on a fee for service, I became convinced that if agencies serving the blind could not move to a fee-for-service model, they would wither and eventually fail economically. The problem however, is that historically, private agencies serving the blind in our state and much of the nation haven’t developed what I would refer to as a rehabilitation-based, fee-for-service infrastructure; an agreed upon set of core services, board member and service staff educational qualifications, and a mutually adopted set of standards for the provision of services and best practices. Instead, private agencies serving the blind have all too often accepted, and in their own interests, promoted the forever-held societal view that blindness is a dependent state of being, and that full rehabilitation to independent life is the exception rather than the expected outcome. As a result, other than vocational rehabilitation, we don’t even bother to ask why health insurers don’t interpret the onset of blindness as a condition for which there is a rehabilitative remedy.
As my views on funding methodologies have evolved, I began sharing them with Elaine Welsh, the then CEO of the Pennsylvania Association for the Blind (PAB). While Elaine and I kid about our at times contentious relationship, never doubt that our disagreements were on tactics and never about philosophy. I have had the deepest respect and admiration for Elaine, especially because of her effectiveness in taking on the unenviable job of attempting to hold together a band of privately governed agencies with disparate goals and service philosophies; cooperative on one issue, competitive on the next, the image of the proverbial herding of cats never more apt. In our conversations, we began to speculate as to whether agencies and the people they served could ever join to mount an advocacy effort to develop or if necessary, coerce funding sources for the support of fee for service. As a starting point, she suggested that I, as president of PCB at the time, discuss my views with the PAB board during its 2015 conference meeting. Elaine had scheduled that I meet with the board for an hour. But just a half-hour into my remarks, the then president of the board gave me the bum’s rush out the door. While Elaine apologized profusely, I left disappointed and humiliated. Looking back now, I have far more appreciation for the board president’s reaction. The majority of PAB Executive Directors know what they know only through their limited experiences. They are never intellectually challenged or guided by members of their governing boards whose knowledge of blindness and services for the blind is informed only by what they hear from their executive directors. Now I understand that what I was trying to propose was, to most of them, inconceivable and intellectually beyond their collective parochial imagination.
Now don’t misunderstand, most PAB agencies are well familiar with fee for service and have participated in fee-for-service ventures as far back as the 1970’s through the Title XX services program. But what I was proposing was for these agencies to eventually abandon their charity model funding and, together with the organized blind, work to build a fee-for-service infrastructure.
The bedrock of this infrastructure would involve a significant change in the service philosophy of all PAB agencies from custodial to rehabilitative. These agencies would all commit to the development of a core set of rehabilitative services. There would be standards and best practices developed for each core service. Educational requirements would be set for staff providing each of these core services. Each agency would recruit from their communities qualified consumers and individuals involved in rehabilitation services to serve as members of their boards. With this commitment towards rehabilitation (and frankly a professional standing) the organized blind would then join with the PAB to seek out sources of fee-for-service funding.
Despite what you might surmise from what I’ve written to this point, I do in fact believe that local agencies for the blind, the PAB system, is the most effective method for delivering services to those of us with vision loss. They are best poised to understand and respond to the specific needs within and challenges of, our communities. Should PAB member agencies be prepared to fully commit to the measures I’ve outlined above, every one of us with vision loss and our families should stand ready to formally support and join with them in their commitment to rehabilitative services and pursuit of funding to support those services. However, PAB member agencies must meet our first demand, to change their messaging about us! We do not belong to them. While we may have an appreciation for the services they provide, we are not, nor ever should be led to feel that we ought to be grateful supplicants. PAB agencies, stop telling your communities, that if not for you, we are lost! In your appeal messaging, you tell our communities that we are the problem. Contrast that with the messaging of the independent living movement where people with disabilities are viewed as part of the solution. Do you understand that professionals never foster in their clientele a sense of beholden obligation and, far more reprehensible, to have it serve as the basis of a fundraising appeal?
Over the last four years, I’ve served on the board of a center for independent living agency. I’ve seen firsthand the many advantages of moving from the charity model to fee-for-service. The board’s ability to concentrate on service quality issues is in stark contrast to the constant necessity to address funding shortages, the dominant preoccupation of the several PAB boards on which I served. Long-term service programs can only be planned and developed with funding that is reliable rather than hoped-for.
One last thought regarding the exploration of fee-for-service sources: Considering how we, both consumers and those agencies who serve us, have always bemoaned the disadvantage of being a low incidence disability, always last in line; when we go calling, is it possible to turn a disadvantage into an advantage? After all, we can make the case that there aren’t that many of us.
I believe that in one way or another, over the next half-decade, what we conceive of as health insurance will undergo a significant alteration, that rehabilitative services will gain even greater priority, as will the public’s concept of meaningful charitable giving. Private service agencies who recognize the future funding landscape and are poised to take advantage of it will flourish as providers of services of quality, those unprepared will be at best, consigned to mediocrity