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March 9th PHA annual legislative meeting summary and photos

On March 9th, 2019, PHA hosted its Annual Legislative Meeting at the Hanna Boy’s Center in Sonoma. Legislative leaders attending the event include Sen. Mike McGuire, Assembly Member Marc Levine, and Sonoma County Supervisor Susan Gorin. Also attending was Ms. Nancy Bargemann, Director of the Department of Developmental Services. 

The speakers had an opportunity to discuss their thoughts about the closure and their vision for moving forward now that the last resident has left Sonoma Developmental Center. Speaking on behalf of the new Health Center in Santa Rosa, Dr. Anne French was able to provide an update about new services, including dentistry that are being added to clinic services.  PHA President Kathleen Miller served as the panel moderator and meeting facilitator. 

Many members of the audience commended SDC staff and service providers for making the final moves go smoothly and many families reported good outcomes to date.

However, issues were also raised by PHA members present including concerns for consistency of services going forward, expansion of model programs to other counties (such as the Santa Rosa Health Center, chaplaincy services for individuals with developmental disabilities who have severe behavior issues, and mental health services modeled after the Puente Clinic in San Mateo County). 

Also noted were issues related to the lack of employment or meaningful work opportunities, the need to expand recreational opportunities including the strong recommendation to have a regional outdoor recreation option developed at Camp Via, and the ongoing need to expand appropriate medical and dental services including both sedation and anesthesia dental services. 

There were also questions raised about the death data study and whether or not there are lessons to be learned that would be helpful to home/facility care providers and physical/mental health care providers in treating clients in the future. Members present felt it important to have full disclosure of the reasons for the spike in deaths during the closure period including the marked increase in deaths following the wild fires. The state legislators present indicated that they would be following the study and offered any help they might provide. 

Approximately fifty people attended the Annual Meeting including representatives from local regional centers. We plan to continue the Annual Legislative Meeting tradition in March 2020. 

Photos from the meeting have been contributed courtesy of PHA member Christian Pease and are available at https://photos.light11b.com/p416533609 The password is PHA (case sensitive). 

Release of Rate Study Report

Release from DDS regarding their rate study report:

From: “Wall, Amy@DDS” <Amy.Wall@dds.ca.gov>
Date: March 15, 2019 at 6:20:25 PM PDT
To: “Wall, Amy@DDS” <Amy.Wall@dds.ca.gov>
Subject:Release of Rate Study Report

Dear Colleagues,

Today the Department of Developmental Services (DDS) submitted the rate study on the provision of community-based services for individuals with developmental disabilities (available online here) to the California Legislature.

The rate study includes four parts:

·        Part 1 summarizes the various methodologies for establishing rates for home and community-based services and outlines current rates and methodologies in California.

·        Part 2 provides an overview of the study, including the project’s timeline, principles adopted to guide the study, and data sources used to inform rates.

·        Part 3 covers the major components of the rate models, including direct care worker wages, benefits and productivity, indirect costs such as program operations and provider administrative costs, and adjustments to account for regional cost differences.

·        Part 4 provides a summary of the rate study results.

We welcome you to submit public comments on the rate study through April 5, 2019. Comments should be specific and include substantive feedback, such as services identified as missed in development of the rate models or mischaracterized services.

To help streamline the public comment process, Regional Centers, Vendor Advisory Committees and several provider and advocacy organizations will collect input from vendors, families, consumers and other interested parties. These designees will summarize and submit the comments to Burns & Associates, the health care consulting firm that conducted the rate study.

•             The instructions and template for submitting public comments can be found here.

•             The list of designees accepting public comments is available on the DDS website here.

We appreciate your continued collaboration and input on the rate study process.

Thank you,

Amy Wall

Amy Wall

Assistant Director, Developmental Center Closure

Department of Developmental Services

(916) 654-1946 (Direct) | Fax: (916) 654-2167

Kathleen’s speech for the PHA legislative meeting this weekend

As some of you who attended this year’s legislative meeting this weekend are aware, we ran short of time so I was not able to deliver my speech. I think it does include some key elements that were a part of today’s meeting. Therefore I am forwarding it on in the hope folks will take a moment from their busy schedules to read it. It does not capture everything but it does summarize much of what was discussed and it also points to the immense task that still remains-watching over the community care system.
Enjoy
Kathleen Miller, PHA – Co-President

March 2019 Legislative Event

We are now rapidly nearing the end of the first quarter of 2019 and there is much to be thankful for!

The good news is most former residents of Sonoma Developmental Center are in now well-served in lovely homes, by able staff.

I want take a moment to personally thank our legislators and a special thanks to Director Bargmann!

When the home my son was to be moved into installed a backyard consisting mostly of woodchips, she requested it be improved and upgraded into much more welcoming and comfortable gathering place for clients and staff alike.

And so it was.

And as a result, the quality of life for everyone living there and the work experience of those who assist them is enhanced.

It is so important that our legislators – and the Department – hear from us when things go well.

Another example is the new clinic in Santa Rosa – for those who have access to it.

We want our guests all to know how much the decisions you make matter to us and to those we love.

Now, after nearly 13 decades Sonoma Developmental Center has closed its doors.

There will never be another place like it.

No matter if you saw it as a unique, peaceful, and caring place – or as an expensive relic – one cannot help but feel a certain emptiness in the absence of a constant, reliable, and quietly beautiful location, where so many lived over so many, many years.

And for individuals like my son and others, it was a place of refuge and of last resort.

It is also important to understand there is an important legacy that does not cease with SDC’s institutional closure.

Two aspects come vividly to mind:

We are now joined with local voices asking that SDC’s historic cemetery – where thousands are at rest – be treated and respected as the sacred place it is.

 Department cannot or will not step-up and see to it that its grounds are surveyed, cleared and all those buried within them are named in remembrance – then provide us community access and we will see to it.

There is also Camp Via – unique in the access it once provided the disabled – including the severely disabled – to the wonders and tranquility of the out-of-doors.

In our view, Camp Via must be reborn, redesigned, and rebuilt and revitalized to 21st Century standards and then reopened to many including those individuals with disabilities.

These are two obvious elements of a legacy which must be honored!

So- going forward, it is imperative that we make sure you hear from us when things go well and make that recognition clear for all to see.

But we also need to come to you when we have concerns. The system of care will be impacted for generations by the closures and issues will arise.

For example it is a major concern for us that so many have not survived the SDC closure. It has taken the clarity of data to show how many died and that data is the basis for our demand that an outside agency take a look, explore contributing factors, and make clear recommendations. This must be done in the effort to slow SDC deaths and also to prevent similar numbers happening during future closures or transitions.

Dental care is another significant example.

Access to good dental services is a problem for many in our society, but for the disabled, especially those who require sedation or anesthesia, the wait can be much too long.

And you may hear concerns about day programs, a lack of recreation opportunities, or how many disabled have no regular access spiritual care.

And you may also hear about how some Supported Living Services providers are strong and good, while others should be closely scrutinized – even shut down, based on histories of repeated and serious failures.

So, no doubt, over time such concerns will arise.

It is also true that many families now care for their disabled loved ones at home.

Trending thought, opinion, and attitudes support this and suggest people with disabilities should be part of a family and by extension, embraced within their local communities across all levels of need.

And this is a most beautiful and loving thing when it works and goes well.

So we are thankful the days are now behind us when families were told they should send away a special and different child to a large state or private facility.

In many cases, especially when a disability is mild, this is the most appropriate course.

But what about families who – for reasons of physical or emotional demands – struggle to care for a seriously disabled family member?

What happens when all the able adults in household must go off to work, sometime to multiple jobs, just to make ends meet?

Or what happens when ageing parents experience increasing medical issues of their own?

And what about families dealing with a disabled loved one who, under stress, becomes aggressive, even violent?

When families choose home care, then they should absolutely be supported in this: A most personal, committed, and righteous choice.

But those who need a different path may find but few options, or none at all, leaving them trapped in quiet desperation.

That reality is decidedly not thing of beauty.

These families need our support so they know they are not alone.

No, we do not raise issues to make ourselves difficult, although at times it may seem so.

Instead, this advocacy in favor of critical, quality services is our reason for organizing ourselves, for standing together.

We know how much we depend on you: our legislators, the Department, its regional centers, and their providers.

What you do is essential to us and we know the heavy responsibility the choice to work with our loved ones entails.

Thus, if we have any one most important message for it is to let them know how much what they all do matters to us.

But what we do matters as well.

It was the families and friends of the disabled who advocated Sonoma Developmental Center into existence; that fought for the Lanterman Act, and much, much more that is sometimes taken for granted.

It is these friends and families – along with self-advocating communities of the disabled themselves – that must continue to watch over our system of care in order to help make it the best that it can be.

Because when the system of care works well, our society benefits as a whole.

But when existing services fail real people suffer.

So let us all be vigilant together and continue to work together in the spirit and purpose of a better California for all.

Thank you.

Kathleen Miller, PHA Co-President

Looking Back and Moving Forward

Post by Tracy Salcedo in Eldridge for All blog

February 15, 2019|SDC/ELDRIDGE COMMITTEE

 – Tracy Salcedo, Glen Ellen, CA

It’s been nearly a year since the Glen Ellen Forum’s SDC/Eldridge Committee hosted a workshop to explore the community’s hopes and goals for transformation of the Sonoma Developmental Center in Eldridge. In the year since the workshop, which drew 260+ participants, the committee has done its best to advocate for Glen Ellen’s vision with movers and shakers in the policy and political arenas. Now, with SDC in warm shutdown and questions swirling in the void, we thought we’d look back at what’s been accomplished, where things stand, and next steps.

To date, the committee has:

  • Synthesized and collated feedback and follow-up input from the April 2018 workshop, which focused the committee’s mandate on preserving the property’s open spaces, advocating for site-specific land-use planning for the campus, and promoting governance that includes a strong Glen Ellen voice. 
  • Participated in the state’s site assessment process with consultant Wallace Roberts & Todd (WRT).
  • Strengthened working relationships with the Sonoma Ecology Center, the Sonoma Land Trust (SLT), and the Glen Ellen Historical Society, and fostered collaboration with the SDC’s Parent Hospital Association (PHA).
  • Represented the Glen Ellen Forum at SDC Coalition meetings.
  • Sent letters to county and state officials, appointed and elected, reiterating the community’s goals and asserting its willingness to be proactive in all aspects of the property’s transition.
  • Met with county supervisors and attended public meetings to support countywide understanding of the impacts redevelopment will present locally, and to reiterate the importance of comprehensive planning for the site.
  • Talked with and/or attended meetings with other organizations with aspirations for the property or its assets, including the Eldridge Ecovillage Association, CEPEC, and the Valley of the Moon Water District.
  • Circulated a petition asking then-Governor Jerry Brown and state officials to support the community’s priorities and ensure adequate funding for the planning process. To date, more than 3,500 signatures have been collected. A letter-writing campaign took place in tandem with the petition drive. The petition and letters will be delivered to state officials.
  • Supported SDC staff, the PHA, the Eldridge Portrait Project, and the SLT in commemoration events honoring closure of the 127-year-old institution.

Arguably the most productive thing the committee has done—and the most promising thing we’ll do moving forward—is participate in the SDC Coalition’s Leadership group. The Coalition is a broad-based collection of organizations—county offices, nonprofits, fire and water districts, and others—convened by Supervisor Susan Gorin to help guide and support Sonoma County as it grapples with the complexities of Eldridge’s redevelopment. 

We can say, without hesitation, that Supervisor Gorin and county staff hear Glen Ellen loud and clear. When we bring issues to their attention they listen and, more importantly, translate our concerns to officials at the state level. Through these contacts, as well as the letter-writing and petition campaigns, we are confident officials at the state level also know who we are and are aware of our priorities.

In April 2018, the community clearly stated that Eldridge’s open space lands should remain open, and that redevelopment should be compatible with the surrounding community and honor the site’s cultural, historic, environmental, and economic legacy. Preservation of the open space, protection of the wildlife corridor, and recreational access are all in good hands, with stewardship of those resources spearheaded by the land trust, the ecology center, county parks and open space departments, and local nonprofits including Jack London Park Partners and Sonoma Mountain Preservation. The committee will continue to support these efforts. 

Ensuring redevelopment of the campus is thoughtful and harmonious within its community and historical context is the bigger challenge. Securing governance that includes a local voice and initiating interim use on the property also remain tricky and delicate. We believe a community-driven visioning and planning process, as promised by state and county officials, needs to take place before any special interest land-use proposal is considered. We are prepared and determined to help make this happen, in any and all ways possible.

Looking ahead, we will host another community workshop to consolidate an enduring and actionable vision for Eldridge. The goal is to build consensus among ourselves and within the broader community—Sonoma Valley, Sonoma County, and the greater North Bay—to guide thoughtful and responsible transition of a place so central to our identity, well-being, and prosperity. 

Please let us know if you have specific questions or concerns you’d like us to address before the visioning effort begins. We may not have answers, but we’ve got ears—our own and those of our colleagues on the SDC Coalition and beyond. We’ve created a website, EldridgeforAll.org, where you can learn more, sign up for action alerts, subscribe to a blog, and become better educated about all the issues surrounding the future of this complex and beautiful property. We look forward to your feedback.

https://eldridgeforall.org/f/glen-ellen-forums-sdceldridge-committee-takes-stock