In recent days Governor Andrew Cuomo has proposed major legislation to protect the most vulnerable citizens in New York State - the elderly, people with disabilities, children and people impacted by substance abuse among others. The protections the Governor seeks are a reaction by the Governor and government to stories of neglect and abuse that appeared over the past year in the New York Times. Now the Governor doesn’t present it that way. He insists that this is his initiative, etc. It’s really here nor there. The stories in the Times were of course disturbing. They identified a culture and a bureaucracy that many working in the field of developmental disabilities have been aware of for a number of years. They were an effort by a responsible journalist to uncover the truth behind allegations that some people brought to his attention. Ultimately, they followed a pattern that occurs when those outside of government or organizations make allegations to the press. As investigative processes unfold, those in responsible positions are not transparent and in the process, make fact finding difficult. Freedom of Information requests have to be filed resulting in redacted information as well as adversarial relationships. As hard as they try not to let this impact them, journalists become frustrated.
The reality is that there were problems with the articles. There were lots of generalizations and in my opinion, not enough emphasis on alternative voices in identifying issues, causes and potential solutions. They did however bring light to a subject that still needs the scrutiny that a shining light brings. They also pointed out that non profit providers of supports for people with intellectual and developmental disabilities, most of whom do great work everyday, are leaderless as a group. They have no real spokesperson and so, they sat and took it. "It" being the generalizations and allegations of rampant mismanagement, out of sight executive compensation and on and on. This at a time when they were being strangled by regulatory oversight and major funding reductions from, guess who, government. It became evident early on that people who should have been speaking out were going to hold their tongue. The arguments were familiar. The Times had an agenda. The reporter was biased. The Governor, the Commissioner, the State would get angry. The Governor has a temper - and oh yes, we do have some skeletons in our closet.
There are many stories that weren’t told due to this lack of direction or leadership. The rich history of the non profit movement in this particular field, the advocacy movement itself, the conflict between state operations and non profit supports, the shifting of costs and revenues by government that have caused real harm to individuals and families, the changes that are necessary and the ones that will hurt people. The list is large.
But that is all water under the bridge as they say and here we are with a Governor’s proposal for justice for vulnerable people. A proposal that no one can be opposed to or even question. That said, no one will probably even read it before it is passed by the legislature. Ultimately government has become the advocate for this vulnerable population. Am I the only one who sees the irony. Government that built the institutions, that created the regulations, that set the rates, that hired the people, that hid the people, that created the culture, that abused and neglected and continues to abuse and neglect has become the advocate. Obviously it’s important for government and government leaders to speak up and try to change their system but let’s remember it is their system.
Lets face some facts. The state of New York, through the Governor, through the Commissioners and through the Legislature is in fact reacting to a scandalous situation. That’s what this is, a reaction by people and entities who were and have been responsible in this area. Personally, I don’t think any of these parties are really aware of the long range consequences of their actions - good or bad. It will be interesting to see how it all plays out but it’s sad that so many people will be impacted in many ways without the dialogue that really needed to take place and without the true advocacy that they need.