Kathleen Miller, PHA President, testified at the Senate hearing on developmental centers on Tuesday, October 23rd, in Sacramento. Below is her statement to legislators.
I have been asked to give the perspective of the families and friends of Sonoma Developmental Center residents on recent events at SDC, including the current licensing survey. First though, I need to give a brief background about the majority of SDC families. We, as family members of developmental center residents, frequently hear that we dropped our children off at birth at and never looked back. We hear that we fear alternative placements because we don’t know what is available outside the centers. The truth is that most residents have involved families and many residents have had experiences with private placements outside the centers. Families continue to choose the centers for their loved ones because they remain convinced that is the best, safest, place for them. The day I see a better alternative for my son, a resident of SDC, is the day I start packing his bag. This is why it is so difficult to hear the latest in a long series of myths about developmental center families-that we are so eager to keep the centers open, we are willing to overlook abuse that occurs within them.
Nothing could be further from the truth. We have learned, often from years of negative phone calls, to dread bad news and no news is more hurtful than hearing your loved one has been the victim of abuse. But we do not believe that private placements outside the center offer any greater protection or safety, and we know that often it is far worse. We join with everyone here in wanting to explore ways that will help with prevention of incidents of abuse both inside and outside the centers.
I have been asked to give the family perspective on how such abuse can be reduced, or avoided at SDC and by extension, the other developmental centers. Sonoma has two populations: medically fragile nursing residents and behavioral residents. Licensing has been looking in depth at behavioral residents the incidents cited have taken place on maybe two or three units within those programs. They have not occurred on the nursing side. It is important to note that the residents involved have serious behaviors and would be challenging and expensive to serve in any setting.
The first step in preventing or addressing issues of abuse is to make sure that it is easy, and not punitive, for staff to report potential abuse if they see something suspicious. The reporting process needs to be clear and streamlined. We have been assured that this has been addressed and are happy to hear this. It is mainly line of care staff who in a position to notice and report and they are the most busy dealing with residents. The process must be clear and simple for them-not just the administration.
Next is the issue of staffing. I have written repeatedly about how line of care staffing levels have sunk to dangerous levels and how staff are repeatedly held over to work double shifts on the units. The good news is that after years of hiring freezes SDC is now in the process of hiring. Families are relieved to hear this. One issue that remains unaddressed, However, is the reduction and elimination of programs and opportunities for behavioral residents to engage with others, work, be challenged, and have new experiences, including access to the greater Sonoma community. As program after program has been reduced or eliminated the world of the behavioral residents has shrunk, and boredom has become the new normal. Unfortunately, when our behavior residents are bored they can come up with behaviors to deal with that. There is a reason licensing continues to cite active treatment as a condition that is out of compliance. Consider the scene on these behavior units: Short staff and tired, overworked staff, few activities, bored behavior residents. It can be a recipe for abuse. Thus, families want the issues of staffing and programming addressed.
A related issue is the lack of willingness by some in administrative positions to continue to provide varied and new work and leisure experiences for Sonoma residents. I know you are all thinking that this is just another money issue, yet another plea for more funds. It is not. There are many opportunities already available on SDC grounds to provide this work variety, there are vans to take residents on community outings, there are creative ways to have residents help on the farm, bring in volunteers, stretch the world for SDC residents, but ideas are too often discouraged or abandoned. I feel there has been a slow but steady decline in the willingness to take on new ideas and challenges. There are too many reasons why things can’t happen and too little support to assure that they do. This all ties in directly to the active treatment issues cited by licensing and the boredom that leads to escalated behavior problems and potential for abuse. The message from the top must be one of openness, engagement and support for those who are trying to enrich the lives of the residents at SDC every day in every way. These attributes made SDC a fruitful and thriving community. The families want that back.
The last issue families are focused on is the persistent lack of communication and inclusion at SDC. I admit that I have not done enough to seek out regular meetings with the SDC administration and they in turn have chosen to communicate only at the regular PHA meetings, rather than one on one. I believe there is room for improvement. Communication to and inclusion of families is a serious issue. All too often significant changes impacting the residents are simply announced to families as final decisions, not arrived at as part of the team process involving families. At times changes have happened without any notice to the family/conservator. Let me be clear-this is against SDC policy and it is against the law. Further, it is impossible for us as family members to protect and advocate when we are not informed. We are part of the team and must be included in the decision-making process. We are the front line in advocacy and prevention of abuse. We need to be included and to have full and regular disclosure in order to best exercise our role as responsible advocates.
Finally, families need access to and regular communication with you. You need to hear from us and we need to hear from you. I feel a regular bi-monthly communication would help us all to track the concerns of DD population both inside and outside the centers. We all need to work together and communication is the key first step.
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