Parent Praises Sonoma Developmental Center Staff and PHA Efforts on Behalf of SDC Residents

Bouquet de fleurs du jardin by Guy Moll
(Creative Commons license)

To the Sonoma Developmental Center and the Parent Hospital Association:

As some of you know, my daughter Ana Cuadrado, was a client at Sonoma Development Center and after a recent battle, she passed away peacefully last month. During my healing process, I want to thank you for giving me the opportunity to write a letter to all of you. 

In this letter, I want to share my sincere and heartfelt gratitude towards the immensely dedicated people that were Ana’s “SDC family” over the past five years. You all were an incredible force for Ana, myself and our family; and words cannot express how much our family appreciates your support and services.

From Cathy Conway, our fantastic caring and professional social worker, to the incredible competent and dedicated medical staff, led by Dr. Pecha and Dr. Mary Christensen in particular, and to the daytime and nighttime staff of Johnson C Unit. All of you were not only doing your jobs, but you went above and beyond, by showing extra compassion and kindness, even developing a special bond with Ana and myself. It takes a special person, with a special heart, to work with such integrity. These are characteristics that are often obscure, and many times missing in the world of health and social care. After so many years of dealing with developmental services, social services, doctors, nurses, and hospital systems; I found that such traits as “empathy” and “compassion” are often overlooked. I can honestly say, that the world of health and social care is a better place because of people like you. Furthermore, the world is a better place with the people like you that dedicate yourselves to working every day at the Sonoma Development Center.



I also would be remiss if I don’t mention the extraordinary work and efforts that the Parent Hospital Association does on behalf of the SDC clients, every day....Every. Single. Day. It takes an enormous amount of energy and dedication to fight against the ugly and powerful machinery of the government bureaucracy that has no room for consideration of the needs and rights of the individual people that make up the “disabled” population of California. All of your hard work does not go unnoticed for the families, and for that, I thank you from the bottom of my heart. I cannot stress enough for the need to continue the support for the above-mentioned HEROES, because without you, the future is very bleak for those who cannot speak for their own rights.

My daughter was, without a doubt, in the best possible place for taking care of her needs, and with the best people taking care of her. As I write this letter, and as I have known all along, I am at peace knowing that I made the right decision when I chose Sonoma Developmental Center for her home. And because Ana was not able to express that enough to let you know how appreciative she was, I am.

Thank you for the years of dedication that you provided to her.  I will forever be a supporter of SDC and PHA.

Warmest regards,
Ana Cuadrado's mother

Series of Regional Workgroup Meetings Planned as DDS Moves Forward on Task Force Recommendations

The California Disability Community Action Network (CDCAN) is reporting that a conference call was held this afternoon to provide more information on the series of regional workgroup meetings scheduled for the coming weeks that have been organized to consider the implementation of the Developmental Centers Task Force recommendations.

The “pre-meeting” conference call was hosted by the Department of Developmental Services (DDS) and was intended to review background information on the topics that will be discussed at the three upcoming regional meetings and help prepare representatives for those meetings. The general public was welcome to listen in on the conference call but will be excluded from the workgroup meetings due to space constraints, according to DDS.

CDCAN provided the following background information on the Workgroup sessions:

Earlier this month, the Department of Developmental Services announced a series of three two-day regional stakeholder workgroup meetings in Fresno, Los Angeles and Sacramento. The purpose of the meetings is to help lay the groundwork for the implementation of the recommendations of the California Health and Human Services Agency Task Force on the Future of Developmental Centers' January 13, 2014 report, "Plan for the Future of Developmental Centers in California.”  (Click on the link to access a copy of the report.)

From those recommendations, the Department of Developmental Services developed several proposals that were introduced with proposed revisions to the Governor's Budget in May and were signed approved by the Legislature and signed into law in June by Governor Brown as part of SB 856 -  the Developmental Services 2014-15 Budget trailer bill.

The Department of Developmental Services, as the next step in that process, has asked invited organizations and individuals to participate in a stakeholder process to provide input on these proposals and for the development of regulations related to these initiatives, in addition to input from the general public.

The series of three, two-day workgroup meetings scheduled in late August and early September is meant to  provide initial input on the following topics:

• New Models of Care for Challenging Behavioral Needs
• Enhanced Behavioral Support Homes
• Community Crisis Homes
• Acute Crisis Units at Sonoma and Fairview Developmental Centers
• Community State Staff Program Expansion
• Developmental Center Resident Transition Planning

The Department of Developmental Services indicated, in its announcement earlier this month about the workgroup stakeholder meetings that “…due to the limited capacity of the state conference rooms, these initial stakeholder workgroup meetings are limited to invited participants. There will be additional opportunities for public comment as the stakeholder process proceeds”.

According to the Department of Developmental Services, the series of three workgroup meetings will include representation from throughout California, including organizations representing consumers and consumer advocates, family members, regional centers, and other stakeholders. To ensure that a wide range of local community perspectives are represented, organizations were asked to appoint a different regional representative to each workgroup location (Fresno, Los Angeles and Sacramento).

The Department of Developmental Services also indicated in its earlier announcement that it was “…strongly committed to working with its stakeholders as it seeks feedback in support of the [Developmental Centers] Task Force Recommendations. No final decisions will be made at these workgroup meetings. They are intended as brainstorming sessions to gather input and ideas, not to confirm final solutions. Stakeholders and the public will have additional opportunities outside of this series of workgroup meetings to weigh in with concerns, questions or ideas.”

DATES:

AUGUST 27th and AUGUST 28th

FRESNO (by invitation only)
Hugh Burns State Building

2550 Mariposa Mall, Room 1036

Fresno, CA 93721


SEPTEMBER 3rd and SEPTEMBER 4th
LOS ANGELES (by invitation only)

Junipero Serra Office Building
320 W. 4th Street, Auditorium
Los Angeles, CA 90013



SEPTEMBER 10th and SEPTEMBER 11th
SACRAMENTO (by invitation only)
Department of Health Care Services
1700 K. Street, 1st Floor Conference Room

Sacramento, CA 95811

AGENDA:

To view the agendas for the three regional Workgroup meetings, click on http://www.dds.ca.gov/publicforums/docs/workgroupAgenda.pdf

DDS has outlined talking points for the meetings, including enhanced behavioral support homes, community state staff program expansion, and the acute crisis units proposed at Sonoma Developmental Center and Fairview Developmental Center. You can access that document here: http://www.dds.ca.gov/publicforums/docs/topicPoints.pdf

more BACKGROUND:

You can see a list of stakeholders invited to the Workgroup meetings here: http://www.dds.ca.gov/publicforums/docs/stakeHolderList.pdf

The trailer bill (SB 856) passed earlier this year that contains provisions regarding implementation of the Developmental Center Task Force recommendation can be viewed here: http://www.dds.ca.gov/publicforums/docs/sb856.pdf

Sonoma Developmental Center's Main Building a Valley Landmark

Main Building at Sonoma
Developmental Center

When the Main Building at Sonoma Developmental Center (the brick building at the top of Harney and directly in front of you as you come in the main entrance) was made a National Historical Landmark in August of 2000, the nomination papers for that designation included some of the history of the Center. As California continues to wrestle with role of developmental centers in the care of the State's developmentally disabled, we thought it was worth a look back and so have reprinted that bit of the Center's history below.

from the nominating papers, and courtesy of the Glen Ellen Historical Society...

The Sonoma Developmental Center (formerly known as the California Home for the Care and Training of Feeble Minded Children, Sonoma State Home, Sonoma State Hospital) was the first of its kind west of the Mississippi. Julia Judah and Frances Bentley were the driving forces behind the founding of the facility. Julia Judah was the wife of Henry Judah, a prominent railroad builder and Frances Bentley was the wife of a Methodist Minister. Both had Developmentally Delayed Children. Other early sponsors and directors included: Bishop Kip, (founder of Grace Cathedral in San Francisco), Leland Stanford, Henry Judah, Washington Bartlett, (then mayor of San Francisco and later Governor of California), Professor Warring Wilkinson, (Principal of the California School for the Deaf, Dumb and Blind), Col. William Harney, Oliver Eldridge and Mrs. Ariel Lathrop.

The facility was founded as a private institution and was first opened at San Jose, later at Sulphur Springs at Vallejo. Soon, outgrowing that site and realizing greater funding was needed the institution was turned over to the State of California and temporarily moved to Alameda and from there to Santa Clara. Again it was evident that more acreage was needed as the population had grown from 20 in 1884 to 108 in 1889. In 1889 funds were appropriated by the state for the purchase of at least 500 acres for the institution. Captain Oliver Eldridge and George Gibbs began the search. They found a beautiful 1670 acre ranch just south of Glen Ellen. The land was owned by Ex Senator William McPherson Hill. The ranch was acquired for $51,000.

Ground was broken for the first buildings and the corner stone laid in 1890. The original structure, (the west wing), consisted of a kitchen, client and employee dining rooms on the ground floor and an assembly hall and dormitory on the second floor. The building included a two story north wing with sleeping quarters for male residents and a two story south wing for female residents. The north/south frontage of the building was a total of 520 feet.

The first residents occupied the building in 1891. By this time there were 148 clients. The move from Santa Clara occurred on November 24, 1891, in a special train provided by the Southern Pacific Railroad. During the first few months the residents had to vacate the building during the day so that workmen could finish the construction.

During the earthquake of 1906 part of the building collapsed. Luckily no one was injured. Following the quake the second floor of the west wing was torn down. Two years later, in 1908, ground was broken for the Main Building. The new building housed administrative offices of the institution as the center grew around it.

The north and south wings were torn down during the 1950's. Only a small portion of the south wing remains. The administrative offices were moved into the Porter Administration Building in 1956. The Main Building was then used as a Professional Education Center and included a professional library. Then in 1970 the building was abandoned.

This remarkable building is the center piece of the nearly 1,000 acres making up the Development Center today. The grounds consist of wooded hills, with lakes and creeks running through it. It is the most beautiful setting for an institution in the state. The Center was, for many years, the largest employer in Sonoma County and at the present is still the third largest. The communities of Glen Ellen and Eldridge cherish the setting and this unique Main Building.

State Officials Appeal CDPH Decision to Decertify ICF Units at Sonoma Developmental Center

State officials announced on Monday that they had submitted a formal request on August 8, 2014 for an appeal and full evidentiary hearing on the decisions and findings of the California Deparment of Public Health (CDPH) relating to their enforcement action on July 25th against seven intermediate care units at Sonoma Developmental Center (SDC). That action was the decertification of the intermediate care facility at SDC, which means the loss of $2.5 million per month in federal funding for the Center

That appeal will give the center valuable time to correct problems CDPH found and to bring the facilities fully into compliance, according to Nancy Lungren, assistant director of communications at the Department of Developmental Services (DDS), which oversees Sonoma Developmental Center.

The decertification at SDC would not go into effect for 90 days from the date of the decision by CDPH (July 25th). The appeal gives DDS and the Center an additional 120 days beyond that to correct everything.

from the official press release...

In January 2013 Sonoma removed 4 units from federal participation and entered into a Performance Improvement Plan (PIP) with the CDPH to continue federal funding after extensive discussion with both CDPH and the Centers for Medicare and Medicaid Services (CMS). Under the plan, DDS contracted with outside experts, subject to the approval of CDPH and CMS, to implement improvements at Sonoma. With the assistance of those independent experts, a great deal of progress has been made at Sonoma to come into compliance with the federal requirements.


"Sonoma has made improvements in all aspects of care and services to the men and women residing at Sonoma, including an emphasis on medical, behavioral and training services," said Karen Faria, Executive Director of Sonoma Developmental Center. "We have evaluated all aspects of operations and direct care of the individuals who reside at Sonoma, and will continue to work closely with CDPH and CMS in making improvements in areas as needed.
"Most importantly, we are committed to providing a safe and secure environment for our residents, and one in which they thrive," said Ms. Faria.


Some of the improvements at Sonoma include:

• Expanded opportunities for Sonoma residents to access the community and expand independent skills.
• Improved human resources systems that resulted in the hiring of 321 additional staff resources in both the clinical and administrative operations.
• Developed and implemented an extensive re-training program with a focus on direct care staff in competencies in areas of client protection, abuse reporting, nursing care, behavioral services, active treatment, and the person-centered planning process.
• Augmented the policy development and review process which led to a substantial number of revised and more comprehensive facility policies that guide and direct services and daily operations.
• Restructured the Executive Committee and Governing Body oversight and monitoring process to ensure a comprehensive overview of the Center's operations including facility policy revisions; improved data and trend analysis, and increased systems for staff deployment and training.
• Implemented a system of review (Whole Person Review) processes that ensures ongoing monitoring, oversight and accountability in areas related to resident rights, access and treatment programs to assist and support individuals with behavioral and psychiatric support needs.

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The letter sent on August 8, 2014 to Mr. John Dexter, Chief, CDPH, Licensing and Certification Program follows:

A Closer Look at the SDC Survey

Kathleen Miller,
PHA President

by Kathleen Miller, PHA President

[The following article by PHA President Kathleen Miller ran in the Sonoma Index-Tribune on Tuesday, August 5, 2014. You can access the SIT article online at www.sonomanews.com. It is reposted here in its entirety.]

The Parent Hospital Association (PHA), composed of family and friends of Sonoma Developmental Center residents, looks forward to the annual survey by the Department of Public Health (DPH). It usually allows us to see the outcome of continuing efforts to assist our relatives and friends at Sonoma Developmental Center.

This year was a different experience. What happened? The recent survey resulted in the threatened decertification and loss of federal funding for over half the residents.

Thus far, I have declined requests to comment on this development because I wanted to take the time to review the findings prior to forming any conclusions or making any public comments. Upon reviewing the survey results several things stand out for me.

First, much of the survey results focus on minor issues. Overall, the survey cited a few instances of non-compliance and then repeated them over and over in different sections, making a 207-page survey seem disastrous. There is a great deal of focus on paperwork, and such issues as uneven sidewalks, bees circling a bush and even ants.

There were issues of late reporting that were clarified as the difference between calendar days required by DPH and those required by SDC, understanding that work days were sufficient. There were statements that SDC staff should report potential issues to the local office, even when there is no one there to receive the report.

As a parent, I was concerned about some of the issues. For one example, bowel care can be a major, and potentially life-threatening, concern for residents who use the toilet independently but can’t communicate when things are not working. Even the slightest misstep can make a difference. It appears there were some errors related to tracking, and following up. This strikes me as an area that needs some work.

Second, federal oversight is lacking in community homes. While the federal dollars that go to developmental centers are linked to extensive state and federal oversight, no such federal oversight exists for federal dollars that go to care in community homes, where many SDC residents may eventually be placed. The state is given the responsibility for that oversight.

In many cases, any oversight for community homes is limited or lacking. In fact most, if not all, of the concerns listed in the recent survey would not be even reviewed in community care facilities. Thus, families get frustrated when they hear others, including some legislators, asking, “Why not close the centers and place everyone in the community?” as thoughthese same issues do not exist in community care settings.

Third, who is to blame for SDC loss of federal funding? From my perspective, there is enough blame to go around. I have concerns about a lack of specific, effective training in clients rights, client protection and client outcomes, all of which are critical in maintaining certification. Staff, some of them new, need to be able to articulate these concerns. They also need to step in if they see a resident who is having an issue, instead of backing away in order to avoid trouble, as appears may have happened in a few instances cited in the survey.

I am most concerned that SDC administration played a role in issues associated with the survey. I am heartened by the new Department of Developmental Services (DDS) Administration and look forward to working with Santi Rogers, the new director of DDS, who seems open to the concerns of the Sonoma community and SDC.

I am, however, concerned about the role middle management at DDS has played. They have repeatedly replaced directors at SDC, as if that alone would resolve the complex issues of funding, staffing and other resources beyond the director’s control. DDS needs to look beyond the administration at SDC and look at those responsible for the oversight of the developmental centers. The truth is that SDC is not unique, and shares many of the issues cited with the other developmental centers. It is the focus simply because it was the first to come to the attention of the feds.

Fourth, I am concerned about federal oversight. Federal program officials play a key role, demanding that residents at a large Intermediate Care Facility like SDC meet extremely strict requirements, for which the state receives matching funds. But federal authorities sidestep responsibility if a developmental center client moves to a community group home, for which the state receives federal “waiver money.” There, they leave oversight to the state and play no direct role. The federal agency has created a bifurcated system.

In this recent SDC survey, some of the information cited was inaccurate and overstated. From my reading of the information, there was no preponderance of evidence that there was substantial non-compliance identified throughout the residences. Rather, the feds have seemed to focus on minor issues that do not greatly impact the provision of care. This only seems to highlight the difference in oversight as part of a duel system.

Further, I am very concerned that this “evidence” will be used to argue against the mission of the developmental centers. Comparisons are thrown around, but federal oversight stops at community care providers.