by Kathleen Miller, PHA President
On May 22, Diane Dooley, secretary of California’s Department of Human Services,
announced she would establish a task force charged with developing a master plan that addresses the service needs of all developmental center
residents.
According to Dooley, the task force will explore the fiscal and budget implications of the developmental center population and the declining infrastructure, staffing and resource constraints; the availability of community resources to meet the needs of the specialized populations living in the developmental centers; a timeline for closures; and the statutory and regulatory changes that are needed to ensure the delivery of cost-effective, integrated, quality services for this special population.
According to Dooley’s announcement, this ambitious “master plan” will be accomplished in under six months.
In other words, this task force must accomplish in a very short time what the Department of Developmental Services, a system of regional centers, numerous past and current task forces and committees, and others, have worked on but thus far failed to accomplish over the course of many years.
As the parent of someone whose very life is in the sights of this task force’s focus, and as the representative of many families whose loved ones require developmental service care, I pray that this task force will honestly and objectively consider the life-sustaining needs of our loved ones and not be motivated by misleading headlines, fiscal considerations or political pressure.
In short, a task force with a preconceived outcome is, at best, window dressing that wastes taxpayer dollars and, at worst, puts California’s most vulnerable citizens at risk of abuse, injury, and death.
The Developmental Centers are the safety net for a complex system of services serving individuals with autism, and intellectual and developmental disabilities. Sonoma Developmental Center (SDC) has served the most severe and difficult to serve of these populations for decades, providing a haven for them in Northern California. SDC serves individuals who are medically fragile with complex medical needs and those with challenging behavior issues.
If history is any guide, closure will mean that a number of medically-fragile individuals will die. They will be unable to withstand the shifts and changes that closure brings. The future of “behavior” residents, those with often severe behavioral issues, is also bleak. The fact is that the community system is currently not equipped to deal with the severe behavior folks already in community placements. When they are not able to be served in their community settings, individuals with mental illness, or other severe behavior issues, are shipped to expensive and often distant and unsafe alternatives.
SDC residents share the likelihood that many will free fall into futures of illness, massive safety risks, abuse, despair and death when the safety of the centers is gone. Some of our elected leaders, like Assemblyman Roger Dickson, demonstrate a callous disregard for these patients with statements like, “You know there are going to be difficulties, but you just have to cut your losses.”
Families like mine think of our loved ones and wonder if they will become one of the “losses.”
It is a future that both frightens and saddens me.
My son is a behavior resident. He has autism and mental illness and currently there is not a placement outside the developmental centers that can hold him and keep him safe.
He has been in community placements twice, and twice he has been failed by those placements. The results of these failures were so painful I will not take the time to describe them here. He is not alone among SDC’s residents.
There is also some very real concern that individuals with profound needs are aging out of schools in great numbers. Clearly, the task of providing services for these citizens is not simple and will no doubt take resources – resources that are expensive, no matter what options are pursued.
The question should be asked: Is this task force necessary? There are organizations, existing task force groups (like the North Coast Regional Autism Task Force), provider groups, advocacy, and family organizations (like mine) and others who donate their time and energy to making things better for California’s individuals with developmental and intellectual disabilities, and individuals with autism. We all have one thing in common. We all want, and actively pursue services and support that ultimately provide a positive life for the difficult to serve individuals.
Sadly, there is no undoing Secretary Dooley’s task force, but it must connect and seek collaboration among those already engaged, including active groups. Many of these groups have been in place for some time and have been working on the issues that the Dooley task force is charged with solving in a few short months.
As the president of the organization that represents families and supporters of residents in the largest remaining developmental center, I present the following questions about the task force process:
1. Will the task force collect data so that recommendations are based on facts, reflecting what has worked and what has not? How many people outside the developmental centers are already experiencing problems with their placements and services, or lack thereof? How many end up in acute psychiatric settings, jails or prisons? How many die when a developmental center closes and how can this be avoided?
Transparency of data and outcomes is a major problem within the Department of Developmental Services. The task force must, at the beginning of its work, study existing outcomes for current community residents, and proactively address issues before moving people out. There must be complete transparency throughout the process.
2. How much money is allocated for the important functions of the task force? Millions have been spent closing the centers in the past. Can a fraction of that be spent hiring unbiased consultants to review these critical issues and collect data to guide the task force’s work and recommendations?
3. Can the findings be presented directly to the legislators – or even more important, the public – without first being screened by the administration? Many stakeholder groups created in the past have provided little or no feedback to those who have participated in the process. Instead, recommendations magically appear from the administration, raising questions about the efficacy of these groups and casting further doubt about the transparency of the process.
4. How will task force members be selected? More importantly, who will be included in the task force? Those most involved, such as family members of developmental center residents and developmental center consumers, clearly need representation. Those who stand to gain financially from possible closure must be viewed with scrutiny.
This task force must not end up a hollow exercise. This task force must value input from those with the most to lose. This task force must not start with an end in mind, but honestly, thoroughly and accurately collect data to support any conclusions or recommendations.
This time, the task force must be a fruitful, inclusive and meaningful process. This time it must be different. The lives of my son and others are on the line.
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This article also ran in the Sonoma Index-Tribune. To follow comments there, visit
Task force to study centers -- will SDC close? in the I-T.
