This month's regularly scheduled general membership meeting was PHA's annual Legislative Meeting. One of the many people who attended and spoke to the legislators and their representatives was a family member of a Lanterman resident. Below is her statement:
Statement for March 9, 2013 PHA Legislative Day meeting at Sonoma DC
My name is Jerry Hardy and my sister has lived at Lanterman Developmental Center for over 40 years.
I travelled to Sonoma today specifically for the opportunity to address families and legislators and to share briefly news about our closure and my concerns regarding the failed system of care.
Sonoma is currently in the spotlight but the problems are not unique to this DC. The problems are the logical consequence of failed department policies.
The Lanterman DC closure is not an improved version of the Agnews closure. In fact there is little resemblance to what good was accomplished there.
3 years into closure and 140+ community transitions but –
• no State Staff in the Community participants
• only a handful of clients in enhanced 853 homes
• confusing transition policies and procedures
• few claims of transition successes/no true census of all movers available
• intimated families
• diminished services/deteriorating care/unexpected deaths at Lanterman
• dramatic staffing shortages/ demoralized staff
• pressure on families to accept limited placement options or risk growing danger at LDC including increasing reports of injuries, SIRs etc
• many LDC residents who have NO placement options at this time
The exodus of staff problematic during the Agnews Closure was a danger identified in the Lanterman Closure BUT center wide staffing shortages exist at LDC acknowledged by the DDS as far back as March 2011 in a consolidation document.
In a consolidation meeting last month LDC reported hundreds of hours of overtime per week, exhausted staff, increasing mandated OT hours, staff working back to back shifts, staff floating from unit to unit. All of this the result of frantic attempts to cover all shifts. This is something I have seen personally on my sister’s unit. Even food and janitorial serves are understaffed.
The solution identified by the DDS is closing and consolidating one unit in a process we were told will take months. When asked directly if any other tools were being afforded by the DDS to address the issue immediately, the Clinical Director replied simply– No. In fact future unit consolidations cannot be anticipated but will occur as staff leave. Layoffs will also continue.
I share this today because I believe that your perception of the LDC closure must match reality. What is believed to have happened at LDC will be the new model and standard and justification for future DC closures. We cannot allow the facts to be concealed or the reality distorted. The remaining DC families must have a clear understanding of what to expect.
The “perception” of the LDC transitions to the community will shape the types, quality and availability of community services and policies effecting future DC movers too. The actual results of the LDC closure must be measured and the success/failures acknowledged and incorporated in the future.
When California spends millions for a closure that is unhealthy for the residents and results in transitions where equal or better services and supports are not available is a disservice to the disabled and the taxpayers.
Now to speak to the legislators and their representatives here today - I believe there is confusion when you hear families give glowing reports about DC care when it is obvious there are very serious problems at DCs. Your disadvantage is your perspective. Families of profoundly disabled know intimately the individual measurements for risk and success. In that context Centers offer the greatest reward – safety AND freedom.
I believe in the necessity to save AND improve the Centers. I think most families would agree.
The DDS has failed to maintain institutional control at LDC and Sonoma as is their obligation. I suspect the department has impacted the other DCs similarly. Staffing is challenging but there is no excuse for staffing crisis. The DDS minimally should be expected to manage personnel levels. Service “delivery” to the disabled requires a variety of service “providers” aka qualified staff.
Transparency and accountability from the DDS are reasonable expectations. Yet the DDS has failed in these at Lanterman.
Service recipients are your only TRUE resource for legitimate evaluation of quality. The DDS can no longer be allowed to write their own report card.
I believe there is one critical and urgent change needed. I encourage legislators to shift focus and eliminate the practice of hearing panels seated predominately with representatives of the DDS, Regional Centers, service providers, professional advocacy organizations and Union reps.
Service “recipients” (represented by family members) should hold your attention and the majority of seats because they are the EXPERTS and offer you first hand reports not professional evaluations. Plus their ONLY agenda is the health and safety of their loved one.
The DC system is well funded but poorly managed and operating without true oversight and accountability. Simple fixes will change the quality and effectiveness in all care settings in California.
Thank you.
A reminder to the families - We must remember that we represent not just the remaining residents of DCs but the families of profoundly disabled folks just like our loved ones who are desperate for a higher level of care. On size does not fit all and no average community can meet the needs of these special people.
