Sonoma families spent the morning meeting with legislators and the afternoon at the task force meeting. Many offered heartfelt testimony at the meeting about how Sonoma Developmental Center has served as a haven for family members for decades. In reporting back on the day's activities, PHA President Kathleen Miller said, "I was proud to be associated with PHA and such articulate and loving family members." Kathleen also serves as a member of the task force.
Offering both personal testimony and a unified message from PHA was a goal of the group. Below is the information presented that day to legislators, and anyone else interested in PHA, its goals, and concerns. All PHA members are welcome and encouraged to use the statement in any way.
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WHO IS PHA?
Parent Hospital Association of Sonoma Developmental Center is a group of families and friends of Sonoma Developmental Center’s residents and former residents. We advocate for choice and individual supports for all regional center consumers.
PHA Core Beliefs
- Transparency -- PHA members know that there has often been a climate of secrecy around issues surrounding both the developmental centers and community care. Decisions about funding and creation of services for individuals with developmental disabilities need to be guided by data and a clear understanding of what works, what does not, and where gaps in services exist.
- Communication -- PHA members believe that open communication is key to resolving and preventing problems. Individuals and families need to be included in decision making. Decisions made without including those most affected are not in the best interests of anyone.
- Options -- PHA supports consumer choice. Choice is only possible when positive options for living are available. PHA members support both developmental centers and community-based service options and believe the decisions about where to live should be based on individual needs and choices.
Current PHA Concerns
PHA members have concerns that the community system of services has gaps. We believe that the deflection policy from developmental centers has led to some individuals in the community to be denied a needed safety net. The current patch work of services for some challenging individuals, particularly those with behavior issues and dual diagnosis, represents very real risks to those individuals. Current plans to create locked perimeter delayed egress facilities are of grave concern as they are more restrictive than developmental centers and have less oversight.
Also of concern are medically fragile individuals, many of whom may not even make it to a community home but die during the closure process. There is a lack of data to supports that medically fragile survive in community settings at the same rate they do in developmental centers.
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Read more about the task force on this blog:
California Health and Human Services to Establish Task Force for State Developmental Centers
Appointments Announced to Task Force that Will Consider the Future of California's Developmental Centers
First Meeting of Developmental Center Task Force Today in Sacramento
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