What follows is a treatise on governance that is relevant to all those who govern and those who are governed. It grew out of a meeting a week ago between county officials and people with disabilities.
The county had established a policy that put eleven hundred people in the Consumer-Directed Personal Assistant Program under the surveillance of the Medicaid Fraud Unit solely because they were the members of a group, not because of any individual wrongdoing.
The person Agnes, who is referenced herein, is an adult with four children; she is also a Christian and an advocate. She has cerebral palsy and her speech is compromised. She also has a fashion sense that I envy.
A person working as an advocate recommended that because of her disability Agnes should not be included on the committee established to have oversight of the surveillance issue.
In the past decade I have spent thousands of hours working with county, state and federal offices to get county services upgraded to the level that the law requires. The most important lesson I have learned is the problem in governance is that the end-point user of services—i.e., the citizen—is never heard.
Most laws—federal, state and county—are good. They are crafted by legislators who listen to people who provide the top social and technical data and research. The laws are then moved out of legislation and into the executive branch for implementation. That’s where the problem begins.
As these laws–that are intended to serve the citizens–are passed down from one level to another, they become corrupted. Maybe the department head has his own agenda so he downplays one portion of the law. Next, the manager is too busy to take the time to really understand what is required, and passes the implementation down in a more limited form. The supervisor who gets the job is not half as smart as the legislators who designed the service and she’s carrying a load of bias and bigotry, so she’s not about to let certain people do certain things. Finally, the service is delivered to the end-point user by a high school dropout being paid minimum wage who has no idea what the law intended that she should do.
Consequently, the citizen/consumer/end-point user is not getting what the law intended. This was first made clear to me the day Frank Kobliski, executive director of Centro bus company (with its $40 million budget) stood in his office and said to me, “There was an executive order to get it done—I know because I’m the executive who gave the order.”
To which I replied, “And I’m the consumer who rides in the back of the bus, and I’m here to tell you it’s not happening.”
The single biggest problem with delivery of government services is that there is no feedback from the endpoint user. People at the top of the chain are giving orders but there is no system for informing those administrators that their orders are not being carried out. The people in the chain of command certainly are not going to tell their bosses that they’re not doing their jobs.
The solution: every chain of governance should carry with it the requirement that management must skip two steps and listen. What that means, for example, is that in the bus company, the director of operations should be required to meet monthly with a committee of people who ride the bus. In case management, the supervisor should meet semi-annually with every client her case managers are seeing. How are you going to know if your employee is doing her job unless you ask the person for whom the job is being done?
My single most effective tool in getting things done is to go over people’s heads. Once I report to an upper level of management what its lower level is actually doing, then things start to change. That is a matter for effective advocacy.
What is essential for the rule of democracy is that those who are governed sit in the same room as those who govern. Agnes, or an equally disabled person, must be on the committee—a dozen “Agneses” should be on the committee! The law exists for us! The Consumer-Directed Program, on which hundreds of thousands of dollars is being spent, exists to care for disabled people! We are what it is all about!
Did you not hear Dept. of Social Services Commissioner Sutkowy repeatedly say, “I didn’t know people were being hurt?” How is he to know if he doesn’t sit in the room with us? Honestly, I think we could do away with all the lawyers and legislators. Just lock the administrators in a room with a hundred disabled people for two hours, then see what the administrators decide to do.
And you do not exclude us from the table just because we don’t speak clearly, or have difficulty getting recognized. My sister-in-law was crippled by polio and I learned that if I was to enjoy her company, then I’d have to walk more slowly so I could stay by her side.
It is incumbent on those who govern to walk at the pace of those who are governed. You do not put us in the back room and treat us like objects to be worked around because we can’t keep up. Governance is not a game that is reserved for the healthy! And you know why not? Because one day those of you who are fighting at the committee table are going to be as old and weak as those who need services. Are you creating a world you will be comfortable living in? I think not.
And the reason I should be on the committee is because I will ensure that persons of lesser ability get heard equally with those of greater ability. When there is injustice in the room, I am the loudmouth for truth, fairness and equality. I am absolutely fearless in the fight for services for people who are poor and sick.
In the body of Christ, each member has a different function. Sometimes my function is to fire shots at the heads of guys who are pretending the truth is not what it is. There are others whose skills are for diplomacy, tact and cooperative effort. My skill is for keeping what is real and true in the forefront of the dialogue. On the bus on the way home after the meeting, Michael kept repeating, “Ten out of six hundred.” While the commissioner spoke glowingly of the district attorney prosecuting wrong-doers in the program, I kept repeating the truth: only ten people were prosecuted out of six hundred people working in the program—an awesomely low level of bad deeds! My words, oft repeated in the meeting, had captured Michael’s mind as being what it was all about.
Socrates was a social and moral critic in pursuit of justice and goodness. He told the Athenians that the gods had attached him to the city like a gadfly to a horse, to ‘arouse, persuade and reproach.’ I am so called to wake those who sleep. The government is for the people. The people belong at the table.
Those who make policy must do it in full awareness of those who will be affected by it.