Considering the Closure of a Developmental Center

On February 23, SDC Parent Hospital Association President Kathleen Miller delivered these remarks to a California State subcommittee —

Thank you for the opportunity to speak today. I have been asked to explain the service gaps for developmental center movers and specifically for Sonoma Developmental Center (SDC) movers.

Even though each regional center has its own unique challenges, some challenges are common to all regional centers. Access to dental care is one such challenge. Regional centers sometimes obtain the services of dental hygienists to do cursory cleanings and xrays, but are not able to obtain consistent dental care for those who need cavities filled or root canals. Sedation dental care, necessary for most of the DC movers, is difficult to obtain. Currently, the only access to anesthesia dental outside the DCs is in a hospital setting. There are long wait lists and when a client finally does get in, teeth end up being extracted. We need dental care in an outpatient clinic setting so clients can access meaningful care that allow s them to save their teeth. Dental health is critical to quality of life for many regional center clients.

Medical care outside the Developmental Center is a complex and massive issue that cannot be fully discussed in the short time I have. Many individuals with developmental disabilities require more time than HMO medical providers can give them. Critical issues are too often missed. The sharing of critical health care information has proven another challenging issue for clients who are nonverbal or who have behaviors and limited understanding of what is going on in their bodies. Such information too often is not available to those treating them.

Medication management for our most medically fragile and dual diagnosis clients is well beyond knowledge of providers in HMO settings. Challenging medical and behavior clients need primary care providers who know them and their issues. In order for physicians to successfully treat our most difficult to serve, they need to spend time with them to gain critical understanding of their complex medical histories, and to be made aware of current problems as they occur. If things are missed, the medically fragile can end up in the hospital or dead. The mentally ill end up in psychotic crisis that displaces them from their community residence. When this happens they begin a downward spiral to increasingly restrictive and expensive placements.

Additionally, regional centers maintain it is the responsibility of the equipment providers to repair medical equipment. This does not work when the equipment must be vastly adapted to fit the needs of many of our DC movers. So far, the only plan is to hope the adapted equipment doesn’t break. This is will leave many DC movers bed ridden. One solution is to give SDC adaptive engineers a provider number allowing them to work in the community system. Such a provider could operate a mobile component of larger clinic.

Yet another concern is underpaid and unprepared staff which too often leads to high staff turnover and inadequate care in community settings. The state staff program implemented as part of the Agnews DC closure served as a buffer for Agnews movers and appears to have led to more successful placements overall. The state staff program at Lanterman DC was a failure. Few staff followed Lanterman movers. Lanterman staff lost hope and left Lanterman shortly after closure was announced leaving Lanterman unsafe. We must take the necessary steps now to avoid the untimely loss of dedicated, highly trained individuals working at the centers during the developmental center closures and transition process.

The lack of reliable data presents another serious problem. When PHA was able to access the risk assessments from the Lanterman closure, it was discovered the process of data collection was deeply flawed and much of the data was meaningless. The remaining data was inconsistent, incomplete and presented in a confusing way. Without appropriate data and analysis, the understanding of issues related to closure is anecdotal at best and at worst is boldly inaccurate.

Finally, simply put, not all developmental center clients can be maintained in their community placements. In the Lanterman closure it appears there were at least 10 individuals who failed in their first placement in a matter of a few months. We currently have SDC residents who did not last even 48 hours outside the center. Some former developmental center residents are initially successful and then their mental illness creeps back and things fall apart. My son is such an individual.

I want to share the story of one young man who never was allowed to live in a developmental center. Mikey was an autistic young male regional center client who was raised at home. It is unknown if Mikey developed an untreated mental illness. He lived at home with his parents until sometime during puberty when his behaviors escalated and he became violent. His father became afraid to leave him at home alone with his mother. His parents appealed to his regional center for help. No community facility was equipped to take him. It was agreed he would live in the family home, and that his parents would move out. The regional center brought in round the clock staff-it is called the supported living model-to care for him. Sadly, the supported living staff was not really equipped to deal with someone like Mikey. Staff turnover was high. When Mikey was supposed to have two on one staff, only one would show up. The provider began to hire large males who knew how to handle themselves to work with Mikey. This strategy only made Mikey more aggressive. Finally the provider quit, stating they could no longer provide services for Mikey. The regional center tried other providers-none would take on Mikey. His
parents requested that he be placed at SDC. Their request was denied. Instead Mikey was placed in a lockdown psych ward in Southern CA. This facility was 13 hours away from family- the only support system he had ever known. Mikey stayed in lockdown for about two years. During that time he did not have access to family, the outdoors, or any of the things that make life worth living. This facility was not inexpensive-its cost is on par with the developmental center in cost per client, as are many inappropriate last ditch options for behavior individuals. One day Mikey’s parents got a call that Mikey was dead. The circumstances of his death remain cloudy. Mikey was only 25 years old.

SDC has a number of folks very like Mikey-his story could have been my son’s story. The DDS plan for these individuals has not been tested, it is restrictive, and it may well prove unsafe for those who are confined in their delayed egress-secure perimeter facilities. The federal government does not want to pay for or have anything to do with these proposed facilities. As an alternative, the Sonoma Coalition is suggesting a small residential site be created on SDC land where residents will have access to the beautiful outdoors, professional staff, day programs and more-in other words real treatment. Today we have critical choices to make. This is not really an issue of money. Dental services in hospital settings are very expensive and the expense assures that disabled individuals will have teeth yanked instead of getting the real dental services that you and I would expect. Repeated visits to emergency rooms due to poor medical care, does not save money or lives. A lack of mental health services where dual diagnosis clients end up in jails, psych wards, hotel rooms, or emergency rooms is not only expensive for the taxpayers, but inappropriate and inhumane. The Sonoma Coalition is working to come up with real solutions to provide services needed to close these gaps in services. Please consider carefully before you make decisions on moving forward with these closures. Please consider carefully any proposed solutions. Lives are at stake.