Today we’re going to math class. I know. I hear the collective groan. But United Cerebral Palsy recently released a report on how states are doing in terms of some areas of money and numbers and while it may turn you off as deadly dull, these are the kinds of stats and trends that tell us where we are and where we may be going with services for people with developmental disabilities in our state.  It is stuff we need to know, think about and act upon.

As is often the case with reports of these kinds, there’s some good news and some bad. And I think both tell us some things that as advocates, we need to be aware of and question further. Right now I think what the bad news tells us outweighs the good.

Briefly, it shows that the state has been drifting in its promotion of community living options and supports for people with developmental disabilities. It shows how that lack of focus is having its most serious effects on those living with their families; both those waiting for other residential options and those planning to stay with their families for the foreseeable future. Stay with me on this as it unfolds.

First though, an update. After this was posted, in answer to my question about the steep drop in the numbers of families getting support, it was pointed out to me that drop might be due to the transfer of children with developmental disabilities to the Department of Children and Families. That makes sense. I would hope in the future when a reputable national disability organization like UCP asks for numbers that they and the state would allow for such administrative shifts, but that’s not my prupose here. Fair enough to say that those children and their families, 15,000 or so, are now recieving those supports outside of the ones they recieve through the educational system through DCF. Questions still linger about how those are shaping out but I’ll raise those later.

Some of the trends highlighted by the UCP report are related to the state’s slow movement over the past 10 plus years in promoting community based and inclusive options for people. The hope is that the closure of North Jersey and Woodbridge developmental centers will help spark that along. But as these numbers confirm, and what we all knew, it has been sluggish at best. And, due to the long delays in getting those efforts back on track, many individuals and their families cannot wait for that lengthy process to infuse new energy into the system.

First some high and low lights.

New Jersey’s overall ranking in this report is 15th. That’s not bad for the state that still had the highest per capita state institutional population.  But it’s also not so great for a state regularly in the top two or three of per capita income.

That institution population has crept down, dropping from about 3,000 in 2005 to 2,400 in 2012. If you add in the number of people served in other large congregate care facilities, like nursing homes and other ICF-DD facilities that are separate from the DCs, the population of those living in the most segregated settings actually has risen slightly over that period, to about 3,150. The number of people being served by the Home and Community Based Waiver has risen about 2,500. That’s a stagnant trend for a state that says it’s progressive.

I can feel you all beginning to go glassy-eyed on me but try to hang in there. This may seem dull, like state and federal budgets, but it is the numbers that often drive the money, and it is the money that drives the agenda. So it is important to take time to talk about reports like this one and to follow the number crunching going on between the administration and Legislature this, and every, budget cycle.

These kinds of casual snapshots can point out important trends and raise questions.  This one focuses on how the large amounts of federal Medicaid monies are directed and that is a major driver of policy, and indicator of priorities.

One thing this report says to me is that while we talk passionately about promoting more community based, inclusive and natural options for people with developmental disabilities we’re not actually doing  that much to push that agenda along.

Certainly the administration and the Department of Human Services get kudos for the proposal to close the two DCs. They deserve it. But it is a quietly slow and un-championed process, at least publicly, and I believe that while that may be politically prudent, it leaves an advocacy vacuum across the whole DD services arena.

I think that political prudence may be at the root of the missing waiting list stats as well.

The 2008 totals were significantly up from the two years before that, by nearly a thousand. If that trend continued over that next four years it would put the issue back front and center, as it should.  But that would be uncomfortable publicly and politically. That’s too bad. There are times in social services when the needs of the people served or, in this case, in desperate need of services, must trump those public relations concerns.  That trend is uncomfortable with good reason. It means that what we have been doing is not working and needs to be changed. It is why information about our social services efforts must be accurate and readily available. There are people’s lives hanging in the balance.

There is volatility in per person costs for people in institutions and the overall trend had been up, predictably, with a dip and a spike over the past two years. Volatility is a sign of instability. That and the overall trend upward will continue and drag out if these populations are simply allowed to dwindle out by attrition over protracted periods of time. The home costs have risen more steadily, in line with societal costs and modest efforts to expand despite stagnant resources. Still, this trend is consistent with some of those above that show an overall policy of maintenance and stewardship rather than active progression.

A final residential number of concern is the six percent drop from 2011 to 2012 in the ratio of community dollars spent to the number of people in need of support by those dollars. Not a huge percentage but this is after seven years of steady increase, including an 11 percent rise from 2010 to 2011. It bears watching. We have heard for many years how community providers have been struggling to make ends meet with increasing numbers of people to support and shrinking dollars to do it with. So any dip in that dollar to people equation can have serious, immediate effects.

The UCP report notes a drop in the number of families receiving support but no one bothered to tell them, and I guess they didn’t ask, why that drop occured. As we said above, the drop, while certainly not statistically significant–most, if not all, of those children and their families now being served through another department–it does kind of accidentially raise some questions about how such a significant structural change might be affecting those children and their families.

Families constituted a powerful partner in the DD structure in the past. Is that still the case? Are the DCF families part of that or do they have a similar structure set up? Does all that need to heppen? I believe the respected involvement of families during those robust years was a real asset to policy and funding development. It would be a shame to lose that, especially with the younger families. The way to build a responsive system of supports and services is consistently and over time. Younger families need to be a part of that ongoing discussion and, as we’ve seen historically, the promotion of that discussion needs to be built in to the bureaucratic structure somehow.

We’ll be exploring these issues further in future posts and I would love to hear what some of you think about it.

Finally, a hopeful note in the area of employment. Surprisingly, to me anyway, the number of people in supported and competitive employment jumped nine percent between 2009 and 2011. That bears looking at too, for more positive reasons. Whatever helped spark that rise should be vigorously promoted and if, like sometimes happens, no one knows why it went up, maybe we should find out.

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Disability in Focus