Project Alex: Hurry Up and Wait

My wife and I do not necessarily want to rely on the federal and state governments for Alex’s future housing and other major needs. Ideally, we’d love to get together with other parents of disabled children and work together to set up a place where all of our kids can live, pooling our resources so that trained staff can come in and help out. For various reasons (which we’ll get to in future posts), this utopian concept would be a mighty hard go in real life. Maybe that will change in the next ten years, but for now let’s take it as a given that caring for Alex as an adult will require cooperation between his parents and the state.

Except no. Because the state of Connecticut — despite a Department of Developmental Services budget of $1.1 billion, the second highest per-person in the country — has no resources to help people like Alex. As things stand now, when Alex is grown, he will not move into a group home or his own apartment. He will be placed on a waiting list. And then he will wait for a long, long time.

I recently attended an eye-opening meeting of The Arc of Connecticut. They’re an advocacy group that focuses on improving the lives of people with intellectual and physical disabilities — and specifically focuses on exposing the state’s disastrous mismanagement of resources.

How disastrous? How about this: Currently, there is no residential support whatsoever for disabled adults except in cases of dire emergency. None. Zippo. Instead, there is only the waiting list, with over 2,000 people on it as of June 2014.

The 2,000 people fall into one of four categories: E, P1, P2, and P3. E stands for Emergency. These are disabled adults with absolutely no resources of their own: Their parents have died, and they have no other family able or willing to care for them. The law (and simple, human compassion) requires the state of Connecticut to find a place for these people to live. As of March 2014, there were about 30 people classified in this way.

The P of P1, P2, and P3 stands for “Priority.” A disabled adult classified as P1 is supposed to get help within one year. This never happens, so you can imagine what sort of hope the P2 and P3 cases have.

So where, you might well ask, is that $1.1 billion dollars going? Is anybody getting help in the state of Connecticut?

Of course! The people who are already in the system are getting help. It’s simply that there is no room for anybody else. And why is that? Well, let’s take a closer look at the numbers — provided, once again, by Arc.

Services in Connecticut flow from two sources: The state itself, and a number of private providers. Each gets about half of the giant pool of money budgeted each year by the state government. But the two sides are using that money very differently. According to a report from Connecticut’s own Department of Developmental Services (acquired by Arc via a 2014 FoIA request), the state is spending $367,000 per person to maintain 937 disabled individuals in various residences. Private group homes, on the other hand, are helping closer to 3,000 people… at a cost of just $129,000 per person.

In 2012, a study sponsored by the Connecticut General Assembly came to the blindingly obvious conclusion that maybe the state should rely more on private providers, and close down its public institutions. The Arc estimates that doing so would eliminate the waiting list. But the results of that study have been ignored. (Or, well, maybe it’s been read a bunch of times, and frowned over appropriately, but nothing major has happened as a result.)

Now, I don’t think an entirely privatized system will instantly solve Connecticut’s DDS-related problems, all at once. For a start, one reason for the huge disparity lies in the salaries of those working with the disabled tenants: In the public sector, a starting salary might be $22/hr plus benefits. In the private sector, someone might start at a mere $10/hr, and I have a hunch that a salary that low does not come with health insurance. I don’t know about other parents of disabled kids, but I’d rather go to bed knowing that the people looking after my son are paid somewhat better than a Walmart stockboy. On the other hand, there are limits to my gratitude: The Arc spokesperson told me that some public workers are making $150,000 in overtime.

No matter how long you play with numbers, though, it’s plain that the public institutions need either a top-to-bottom rethink, or they need to be shut down in favor of a greater reliance on private organizations. So why hasn’t this happened?

For lots of reasons, starting with the fact that not everybody agrees with these conclusions. The people working at the public institutions, for example, are pretty happy with the status quo and would like to see it continue indefinitely… and these folks are represented by fairly powerful unions. The families of the people served by public institutions are similiarly in no rush to see their disabled relatives, for crass budgetary reasons, uprooted and moved to new homes. Finally, closing down an institution like Connecticut’s Southbury Training School is not simply a matter of waving a magic wand and saying “You’re closed!” It’s going to be expensive, and I suspect that the resulting savings will not be immediate.

Longterm, however, it’s the only possible way to go: In the late 1990s, the Southbury Training School was prohibited from taking in any new residents. They had about 800 residents back then; now they’re down to 380. Hopefully the politicians will take action before Southbury becomes another Fernald Institute. Located in Massachusetts, Fernald was closed only recently, in November of 2014. At the time, it had 13 residents remaining… and the cost-per-patient had climbed to nearly $1 million per year.

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2 Comments

  1. Posted January 5, 2015 at 8:48 am | Permalink

    Eric, you tore a page right out of the Pennsylvania playbook ! Well written. We too have a waiting list characterized by similar categories- about 3000 people are in the dire “I needed services yesterday” dire emergency category. Overall there are about 15,000 people on the list. we serve adult day, community residential, and several other programs- and have been flat funded for 5 years. The state institutions enjoyed nearly a 10% increase- there are about 1000 people served in the 5 remaining state run centers ( down from 15,000 and 10 or 12 Centers when I began my career)- and there are about 70,000 served in community . It’s just not fair. Keep advocating. Host a legislative breakfast with all your local reps to keep pushing the issue.

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  2. Eric Berlin
    Posted January 5, 2015 at 9:46 am | Permalink

    The Arc is hosting a legislative meeting a couple of weeks from now… unfortunately on a day when I’ll be traveling. But I certainly hope to go to the next one. In the meantime, I’m sending these blog posts to my state government representatives in hopes they might actually get read and considered.

       0 likes

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