There's An Elephant In The Room!

There sure is and it's awful big. We're going to talk about it here.

One of the many things identified by the ongoing NY Times series on support to people with developmental disabilities is the dual system of the provision of these supports - namely the state of New York as one and the private, nonprofit or voluntary sector as the other.

Before we go too far though let's talk about this terminology. Two discussions are important - nonprofit and voluntary. Many times the general public and sometimes people in positions of great power think that nonprofit means a poor, underfunded, always on the brink kind of organization. There is a general perception that nonprofits should not run a surplus or make a "profit".  Sometimes people are surprised to find out that nonprofit status is really about "members" of the corporation, in many cases the Board of Directors, not making a profit. Instead all of the profits are to be reinvested back into the nonprofit entity. Some of that reinvestment is the development of "reserves" that help the nonprofit navigate in difficult times or that allow programs that run deficits to continue operations. These are important choices that have to be made by well informed Board members with the support of qualified and honest managers.

State Operated vs. Voluntary Operated
So why do we hear this terminology - State Operated and Voluntary Operated? Well this is the dual system of supports established many years ago in New York State. For many years New York State was the provider of services and supports for people with developmental disabilities. These services and supports were put in place over many years and were a mandated responsibility of government. Thus institutional care as a model - basically the need to house and take care of large numbers of people. But there was another model even before what's referred to as deinstitutionalization. That was the community support and rehabilitation model developed and practiced by many nonprofit organizations in the '30's, '40's and 50's and into the '60's. As deinstitutionalization began to occur, the state needed major assistance and turned to what was dubbed the voluntary sector - voluntary because these organizations were not mandated to provide these services and supports. They chose to provide them. I contend that there is a great difference between doing something because you have to and doing something because you choose to. I believe that basic difference is why there is a cultural divide between state operated and voluntary operated systems of support. It doesn't mean one group of people is better then the other but it does mean there are real differences and you can't pretend to be one vs the other.

Now the hard part that few want to talk about. When the real push for deinstitutionalization occurred, the state had an existing workforce of thousands of unionized employees. At the same time the state was looking to the private sector of voluntary, nonprofits to assist and most of these were non union entities. No surprise, a dual system of funding and reimbursement emerged. The agency responsible (under the law) for providing the supports, the Office for People With Developmental Disabilities, was now responsible for funding, developing and auditing/regulating the programs it ran and contracted for. They have tried valiantly over the years to figure out ways to do it - regional offices, set up a separate division, hire outside auditors and on and on. The reality is that it hasn't worked for a couple of reasons.

First and foremost, the system is just too damn big and diverse. Supports for 125,000 plus people provided by 13 or so regional offices operating their own programs and contracts for similar supports with 700 plus nonprofits. In addition there continues to be approval of more, smaller, less sophisticated nonprofits even today. A system like that is just too big and hard to manage.

Secondly, you can't have two workforces with different rates of pay and operating under minimally, two sets of rules. Just won't work and the proof is in the eating of the pudding.

So what are the possible solutions? For one, the state should be trying to resolve the workforce issue. From my perspective this isn't an anti or pro labor issue. It's a reality that needs to be dealt with, probably over time. The state should look at redeploying its workforce through attrition to other state agencies. That would be a start. I think there should be a commitment made by the state to get out of all but the most necessary of services and supports of people with developmental disabilities. The state should concentrate on figuring out how to manage all of the data it already collects as well as developing meaningful performance data that recognizes geographical, size and programmatic differences by support providers. There may be a temptation to turn the overseer, licensing function over to another state agency or entity. That would in my judgement be a mistake. The current Office for People With Developmental Disabilities does have an understanding of the constituency and the providers that has tremendous value. It just needs to be focused and supported properly.

There's the elephant. The big nut to crack as it were - State operated vs voluntary operated, a state workforce and a voluntary workforce, oversight vs operation. These are the discussions that have to begin taking place before any real and meaningful change can occur.