A closer look at the SDC survey

(Editor’s note: Kathleen Miller is president of the Parent Hospital Association at the Sonoma Developmental Center, where her son is a resident. What follows is her analysis of the survey conducted by the California Department of Public Heath that now threatens a cutoff of $2.5 million a month in federal funding.)

The Parent Hospital Association (PHA), composed of family and friends of Sonoma Developmental Center residents, looks forward to the annual survey by the Department of Public Health (DPH). It usually allows us to see the outcome of continuing efforts to assist our relatives and friends at Sonoma Developmental Center.

This year was a different experience. What happened? The recent survey resulted in the threatened decertification and loss of federal funding for over half the residents.

Thus far, I have declined requests to comment on this development because I wanted to take the time to review the findings prior to forming any conclusions or making any public comments. Upon reviewing the survey results several things stand out for me.

First, much of the survey results focus on minor issues. Overall, the survey cited a few instances of non-compliance and then repeated them over and over in different sections, making a 207-page survey seem disastrous. There is a great deal of focus on paperwork, and such issues as uneven sidewalks, bees circling a bush and even ants.

There were issues of late reporting that were clarified as the difference between calendar days required by DPH and those required by SDC, understanding that work days were sufficient. There were statements that SDC staff should report potential issues to the local office, even when there is no one there to receive the report.

As a parent, I was concerned about some of the issues. For one example, bowel care can be a major, and potentially life-threatening, concern for residents who use the toilet independently but can’t communicate when things are not working. Even the slightest misstep can make a difference. It appears there were some errors related to tracking, and following up. This strikes me as an area that needs some work.

Second, federal oversight is lacking in community homes. While the federal dollars that go to developmental centers are linked to extensive state and federal oversight, no such federal oversight exists for federal dollars that go to care in community homes, where many SDC residents may eventually be placed. The state is given the responsibility for that oversight.

In many cases, any oversight for community homes is limited or lacking. In fact most, if not all, of the concerns listed in the recent survey would not be even reviewed in community care facilities. Thus, families get frustrated when they hear others, including some legislators, asking, “Why not close the centers and place everyone in the community?” as thoughthese same issues do not exist in community care settings.

Third, who is to blame for SDC loss of federal funding? From my perspective, there is enough blame to go around. I have concerns about a lack of specific, effective training in clients rights, client protection and client outcomes, all of which are critical in maintaining certification. Staff, some of them new, need to be able to articulate these concerns. They also need to step in if they see a resident who is having an issue, instead of backing away in order to avoid trouble, as appears may have happened in a few instances cited in the survey.

I am most concerned that SDC administration played a role in issues associated with the survey. I am heartened by the new Department of Developmental Services (DDS) Administration and look forward to working with Santi Rogers, the new director of DDS, who seems open to the concerns of the Sonoma community and SDC.

I am, however, concerned about the role middle management at DDS has played. They have repeatedly replaced directors at SDC, as if that alone would resolve the complex issues of funding, staffing and other resources beyond the director’s control. DDS needs to look beyond the administration at SDC and look at those responsible for the oversight of the developmental centers. The truth is that SDC is not unique, and shares many of the issues cited with the other developmental centers. It is the focus simply because it was the first to come to the attention of the feds.

Fourth, I am concerned about federal oversight. Federal program officials play a key role, demanding that residents at a large Intermediate Care Facility like SDC meet extremely strict requirements, for which the state receives matching funds. But federal authorities sidestep responsibility if a developmental center client moves to a community group home, for which the state receives federal “waiver money.” There, they leave oversight to the state and play no direct role. The federal agency has created a bifurcated system.

In this recent SDC survey, some of the information cited was inaccurate and overstated. From my reading of the information, there was no preponderance of evidence that there was substantial non-compliance identified throughout the residences. Rather, the feds have seemed to focus on minor issues that do not greatly impact the provision of care. This only seems to highlight the difference in oversight as part of a duel system.

Further, I am very concerned that this “evidence” will be used to argue against the mission of the developmental centers. Comparisons are thrown around, but federal oversight stops at community care providers.