by Norman Reim

What Are We Waiting For? Waiting Lists and Community Infrastructure

There are still waiting lists for residential supports for people with developmental disabilities. We say we don’t like the fact that they are waiting. We should be even more concerned about the systemic problems in the broader systems of support they are waiting for.

According to a report from UCP national released earlier this year there are 268.000 waiting now as compared to 137,000 in 2007.

As we’ve all said time and again, this is a trend that does not come as a big surprise. With populations aging individuals with developmental disabilities are living longer and healthier lives, unquestionably a good thing, but the same time marching for them in their advancing robustness is marching on for their families and taking the toll all that marching does.

Also, in a trend that should be less of a given but seems to be so more and more these days, public dollars for support of residential supports is being perpetually ping-ponged in ongoing politically charged budget battles.

Finally, there has been a long, slow but consistent movement toward supporting individuals with developmental disabilities as such; as individuals with their own discrete needs and desires, not defined by their connection with a group of other people, including their families. That’s a good thing, but it does put additional strains on the systems as funders and providers struggle to support older models while attempting to promote the newer ones.

So, while the staying power of waiting lists is predictable, it is still a concern, but often for different reasons than in the past. As usual, caught up in the middle of the all the studies and politics are people with developmental disabilities and their families who are simply trying to manage their daily lives and plan for an uncertain future.

The  waiting list in New Jersey used to be a flashpoint. Waiting families came out to testify at public hearings. Budget campaigns centered on the plight of aging parents struggling to care for a son or daughter with severe and profound developmental disabilities. Images of elderly individuals and couples with their children, often times visibly in need of significant physical caretaking, promoted public outrage with lawmakers promising to see the list ended once and for all.

All that’s pretty much died out with the waning of traditional press coverage and a shift in the way the state’s Division of Developmental Disabilities manages the waiting list. Some of that’s good. The whole obsessive focus on the waiting list became a fulcrum for leveraging money for community services. Perfectly legitimate as such but it ended up being a distraction. As stories usualluy do it simplified a complex set of issues. It was incomplete and masked the systemic problems that have continued to grow.

Many of the people on the list didn’t need or want services anytime in the near future. Those with really urgent needs were dependent on the much more complex problem of the broader funding issues, made worse by continuing to run running large institutions at the expense of the community infrastructure and the state’s ongoing revenue roller coasters.

The state, to its credit and in line with national trends, has moved toward managing the people on the list now that the hyteria to get rid of it has died out.

The current goal is to move people off the waiting list and onto the Community Care Waiver CCW). The CCW is how Medicaid funds residential placements in community homes—waving the institutional bias written into the original Medicaid laws.

Once that happens the recipient can get in-home supports or, theoretically, an out-of-home situation. As discovered when the waiting list started to be examined more closely, many people signed up for it because of the fear of the long waits but were not ready for any move. So now, much of the individual and family choice on how to use the CCW support is based on what they want and need at that time. That’s good.

But it is also true that the state community infrastructure is a bit of a mess. There are some serious long term investments that have been on hold for many, many years and providers are past feeling the pinch. Last I heard they had to make some serious management choices daily around physical plant needs, staffing, extras, all the stuff that makes a supported home work.  So, while it’s true that most of the people opting for in-home supports genuinely want to keep their situation as is, there is no doubt a reluctance to choose an option that is lacking.

For the long term sustainability of this CCW plan, significant investments would need to made if there are going to be appropriate out-of-home living options for people when they are ready for them.

The state tells me there are 100 to 150 people coming off the waiting list on to CCW a year on average. Last year it was 173. Of those, 90 now receive in-home support; 26, residential and support; and, 57 declined any new services. They contact more than 300 in order to add about 130 onto the waiver. According to them there is always a high number who decline services or have moved. Some take a long time to decide on what they want and need. Life goes on for all of us whether ideally or not and we all need to roll with our own behaviors as well as that of others.

Bottom line though is that as of March 2014 there were 3,789 people on the priority waiting list for the Waiver. Priority—it used to be called Urgent back when—means that both parents are over 55 or there is a specific circumstance that needs to be addressed with that family more urgently. As a side comment I think that in this day and age we should be able to know which situations are truly urgent and which not. Having both parents over or under 55 doesn’t mean much. We all know parents in their 30s in situations that are dire and those in the 60s who are doing fine. A topic for another day.

In that March snapshot the general portion of the waiting list was 2.801. There doesn’t seem to be much specific info about them. That’s a resource issue I realize. But I wonder who they are and what their situations are. It is also interesting in a worrisome way that the priority number is nearly a thousand more than the general. May not mean anything but it may also be another minor caution of continued rising need. Also, nearly 20 percent of the individuals on the list are children, including those who signed up before the transfer to the Department of Children and Families.

They are all wanting to not get left behind. They want to be considered for the supports and housing they will need through the years.

Getting on the waiting list or getting on a federal funding stream is only helpful however if appropriate services are available. If they aren’t it’s only a paper moon.

No matter how long someone has been on a list, what their designation is or what series of letters the funding source uses as its designation, if there is not a reasonable home to live in with competent, caring appropriately paid support staff, and competent, enthusiastic public employee staff to manage the coordination and oversight of those services and supports, it’s not going to work. It’s that simple.

There needs to be a long range plan for shoring up the state’s community infrastucture so that it can best serve those currently in need of its support and will be ready for those relying on it to be there for them later. If there is such a thing I apologise for having not yet heard about it. If not, I repeat, there needs to be.

What do you think?

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Disability in Focus