Eking Out Justice From A Bureaucracy!

This is a long and complicated story. It goes back two and a half years ago when stories started appearing in the New York Times by reporter Danny Hakim about abuses in services and supports for people with developmental and intellectual disabilities in New York State. These were not stories about dark and dreary institutions where people were warehoused like farm animals. No, that was in our past. Willowbrook, the notorious institution that helped inspire the closure of large institutions across the country had been closed for decades. These new stories were about abuses occurring in community settings - settings like community residences and day programs around the state. The stories were based on whistle blower type reports and involved both state operated and non-profit, private providers of supports. They also were driven by the frustration and anger of Michael Carey, the father of a young man who died from abusive actions by staff at a NYS Developmental Center. In addition to abuse and neglect, the series included examples of highly paid executives and other questionable administrative practices.

As with many series or exposes there was sometimes excellent and sometimes questionable reporting. As also happens, an entire field as well as large numbers of hard working employees, direct support staff and agency administrators, were all painted with the same brush. The actions of a few brought the actions of the vast majority into question. I know a lot of people in this particular field and they are some of the most dedicated and hardworking people around. They live and breath what they do. They establish relationships with people who many others in our society choose to ignore. They work and fight for families everyday. But there were, have been and probably will always be some rotten eggs along the way.

So the story took some fairly normal courses - government and the public were outraged. This had to stop. A newly elected Governor who seemed to exist on the fumes of good press/bad press and public relations in general took the bull by the horns. He had already appointed a new commissioner of the agency responsible (Office for People with Developmental Disabilities) and now he was tasking her with fixing internal issues. In addition, he appointed a respected individual, Clarence Sundram, to look at a whole host of issues related to the treatment and reporting of abuse and neglect of vulnerable populations in New York State.

Sundram took the necessary time and looked at data and interviewed a broad range of people. He identified a hodgepodge of  reporting systems as well as state agencies where very little reporting of abuse and neglect even existed. In the end, the Office for People with Developmental Disabilities, did quite well in terms of systems, procedures and reporting mechanisms. Sundram made solid recommendations relative to consistency across state agencies dealing with vulnerable and special populations including children, the elderly and people with mental health, physical and developmental disabilities. Sundram's report can be found here. It is an important document and should be referred to continuously.

The major result of all of this was Governor Cuomo's announcement in 2012 of the creation of the NYS Justice Center for the Protection of People with Special Needs. The announcement was classic Cuomo. Supporters, State Agency Heads, advocates, legislators and of course the press filled a room where the Governor announced his proposal. Applauds from everyone, for who could be against such a noble charge and goal. Advocates and private agencies were given pre approved quotes and a short time to agree to their use. And so it went. All of this required legislation that was passed easily in June of '12. Although the legislation was passed things began to slow down. Staff were transferred from other state agencies to begin staffing the Justice Center. This also reduced some state agency budgets and built the $40M plus budget for the Justice Center.

With this as a backdrop, the NYS 2013 Budget contained a surprise for people supporting people with developmental disabilities. The Governor proposed a $120M cut to these services and effectively ended up with a $90M cut. With these cuts came lots of rhetoric about how these cuts could be absorbed in administrative areas by non profit providers. Another legislative fight took place and the NY Senate and Assembly thought they restored much of these dollars. Surprise - they weren't truly restored but that's another story.

So, close to twelve months after the announcement and approval of the Justice Center, a Director is hired and the Center is scheduled to open on June 30, 2013. The Governor's announcement is here. It has proven to be a bureaucratic nightmare. I base this on antidotal information from providers and from communications I have seen from state agencies, providers and the Justice Center itself. It seems the Center wasn't really completely ready to open. There didn't seem to be any idea of how many reports they would be receiving on a regular basis. Part of the legislation calls for a statewide registry of people found guilty of abuse and neglect and agencies need to submit names of new employees so they can be cross checked against this list. Now the fact is there is a lot of hiring on an ongoing basis in this field of work (another story). Agencies regulated by the Office for People with Developmental Disabilities had for numerous years already been getting criminal background checks on prospective employees. Now these names are all being sent to the Justice Center so they can be checked against a list that currently doesn't even exist (this has been recently fixed to some degree). Fax machines have been designated as secure communication devices rather then email and the machines couldn't keep up.

There are more examples but the bottom line is that government is trying to legislate a solution to a very serious problem and legislation along with bureaucracy are only tools. Sadly they sometimes are the wrong tools.

Recently, Danny Hakim of the NY Times has revisited the issue of abuse and neglect in these areas. He continues to point to problems, many created by the union protecting state employees. The Albany Times Union has also reported on some of the issues facing the Justice Center. All of this has caused me to really think hard about underlying reasons for all of these problems.

There are some things that flow pretty consistently through Clarence Sundram's Report as well as actions that the Office for People with Developmental Disabilities took over the past year. These are also things that many in the private, non-profit community have been saying for years and years. The actions of employees in organizations large and small are driven by values, culture, training and retraining. You cannot mandate or legislate values and culture. It just isn't possible. People have to walk the talk and respect the people they support. If they don't get it, they need to find another career. Supervision is difficult in community settings where people are depending on building relationships with others throughout the community. But again, values and culture have everything to do with expectations and supervision. Training is absolutely imperative but re-training, ongoing training and reenforcement are critical and difficult to commit to continuously. Finally, administrative bashing may make people feel good but it doesn't solve anything. Who do people think are filling out and trying to make sense of all of the new and old administrative mandates from the Justice Center and other entities. It just doesn't add up - reducing dollars and adding administrative responsibilities.

The other issue that's out there is state operations of these programs vs private, non-profit operators. Some will say there's no difference but there is. One set of providers are called State Operated and the other sector are called Voluntary Agencies. I've said before that language is important and here's another great example. Sometimes people use words so often, they forget what they mean. State Operated programs are just that - they're programs that are operated by the state of NY because the state has a mandate to support and take care of its most vulnerable populations. Institutional care is an easy state response. Large numbers of people housed and fed. All of that is what has led to institutional scandals and closures. Public opinion, the courts and other pressures forced these changes. Voluntary providers do what they do voluntarily most of the time driven by strong missions and beliefs in what they do and why they do it. They can be pretty independent and even walk away if necessary. Over the past number of years voluntary providers have become so reliant on state funding that lines are getting blurred.

In addition, NYS built a huge labor workforce in institutional care over many year. Prisons, Developmental Centers, Mental Hygiene facilities have all been staffed and have become economic drivers in many local communities. They have also driven a state budget that can't be supported according to many. Conspiracy theorists could make a pretty good argument that all of the bad press and resulting pressure on labor organizations could be just what Gov. Cuomo wants. It helps build the case for the state to get out of the business of providing supports to people with disabilities. Turn everything over to the private sector. Maybe, but I don't think so.

But the labor issue is real in the latest reporting and controversy. The union involved, CSEA, is making it difficult for the state of NY to terminate employees where there has been pretty clear abuse. The Gov. and the union should be able to work this out and resolve the issue. If they can't, they should be ashamed of themselves. This isn't a pro or anti union issue. It's pro people and anti abuse - so get it done.

I started this piece frustrated at the direction the Justice Center took or was taking. The articles I referred to appeared while I was doing this writing which caused me to go into some new and different directions. I'm convinced, however, that the real issue is that you can't mandate justice. You really have to work at it. You can't and shouldn't create a whole new bureaucracy to replace or worse, duplicate some good things that are already happening. Cameras sound good initially but we need to be cautious. It's an institutional response. I have faith in the vast majority of people supporting people with developmental disabilities and no tolerance for the ones who abuse and neglect.

I'm most disappointed in state wide provider organizations who should be speaking out on all of these issues. They aren't. Partly because they're scared of people in power and partly because they've become dependent on government support. As supports and services move toward managed care worse things can and probably will happen. I hope some voices are left to speak out.

Individualized supports that are person centered and allow for real choices are hard to supply and can be expensive but that's what people deserve. We're not there yet. My fear is that the newest round of bureaucratic responses will make this journey more and more difficult.