March/April 2015 - Parent Hospital Association at the Sonoma

MARCH / APRIL 2015 ISSUE
P.O. BOX 237, ELDRIDGE, CA 95431
www.parenthospitalassociation.org
IN THIS ISSUE
President’s Message: A Question of Faith
pgs 1-3
Save the Date
pg 4
Minutes for the March 14th PHA Legislative Meeting
pgs 5-11
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PRESIDENT’S MESSAGE
from Kathleen Miller, PHA President
Introduction
Clearly Sonoma Developmental Center along with Fairview Developmental Center is under
attack. Both Assemblymember Grove and Senator Jeff Stone have crafted legislation to close
both centers suggesting closure be completed by December 2018. Their complete disregard for
the welfare of the residents of SDC is clear. Further, they suggest the money created by the
savings and selling off the land to the developer with the most cash, can save the starved
community care system. They pit the developmental centers against community settings and
ignore the fact that to close the centers costs millions and will not create funds to help those in
community settings. Frankly, if they really cared about community care why not create a bill to
better fund it instead of destroying the safety net of the system?
However I wanted to share something more personal. I wanted to shed light on the fact that even
in the darkest times there is reason to hope. Often it is our beloved family members who reside at
SDC who can show us the way to finding that hope.
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A Question of Faith
Father Chesterman, whose son is a resident of Sonoma Developmental Center, talks about the
importance to him of having his son attend religious services there. In the past it was not an issue
I had given much thought. I have to confess that I am not a believer and don’t subscribe to any
religion. I admit to occasionally feeling smug about the fact that tolerance seems somewhat
simpler to some of us who have no faith, than for others who profess to believe in a specific
religion.
My feelings were changed by getting to know Father Leslie. He is the Priest who worked at
Sonoma Developmental Center, and I met him when I worked there as a social worker. He has
for many years spent his days holding services for the residents. He got to know them personally
and I know they looked forward to his visits. I got to know him when I worked with him to hold
memorial services for those who died. He would always ask us for our stories about the
individual helping us to remember them but at the same time to deal with the loss of one more
beloved resident. He never judged. He was handsome and had a soft Irish brogue and I have no
doubt he could have risen up the ranks of the church, but he chose to work with the disabled who
live at SDC.
My son Dan lives on Malone at SDC. He does better when he is kept engaged, it helps offset a
tendency he has to self isolate. Because I knew Father Leslie, and because Sunday at SDC is
such a quiet day I decided to ask that Dan attend Sunday services with Father Leslie. Beyond
Dan sharing with me that he went to church to see the good Father we never discussed it and I
did not give it much thought.
Last October tragedy struck our family. My ex husband, my children’s father committed suicide.
His sudden violent death has had a major impact on my lovely daughter and two granddaughters.
The effect of his sudden death ripples throughout all of our lives in ways we do not fully
understand and the pain he left in his wake can hit us when we least expect. One of the major
concerns was if and how to tell Dan. My first reaction was not to tell him. His life was difficult
enough without this added loss.
It was The SDC staff who helped me realize that I must tell him. We were coming up on the
holidays, and my ex husband had always been a part of our holiday celebrations. I knew Dan
would miss him. I dreaded the moment when I would be forced to share with him that his father
was gone.
I told him one day when we were walking the beautiful SDC grounds. I simply told him his dad
was dead and he would never be able to see him again. Dan’s response both shocked and
humbled me. First he asked if his dad had gone to heaven. He immediately followed with the
question if his dad had been a good man. Dan is a guy who lives in the moment. When I shared
this story with staff I am certain there are those who doubted me. I never expected him to
embrace the idea that there is a heaven and that is where the good go when they die. I have no
idea how he came to the idea. What is clear, however, is that is that is what he believes. I have
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since checked in with him to understand if Dan knew what he meant. I learned again that he
believes in heaven and he feels it is only available to those who are good. That is his beliefperiod.
I am now reminded of my work with the SDC residents who are medical. I know they can not
speak and are very limited in their lives as we know them. But I know them to have distinct
personalities and ways that they communicate them. They get to know staff and love them. They
have favored staff and I recall Jon who would not eat except for staff he knew and trusted. I
recall Susan and Kimberly who compete for staff attention. Some might say these individuals are
not really there, they do not matter. I am here to tell you they do know when staff care and come
to work to see them. They live for the small things, the chocolate pudding, the music in their
music group, the kind words and touches from known and trusted staff. I could be late, and not
see them for days, but they were always happy to see me. They would have a giant smile on their
face when I came into the room.
They constantly suffer loss. They get attached to caring staff only to see them mysteriously leave
and be replaced by new staff, on whom their very existence depends. Nonetheless, they are those
who have hope in their hearts and smiles on their face. I consider it an honor to advocate for
them and the behavioral residents of SDC. Truly, I am not worthy. I will do my best to protect
them and ensure that they have some quality of life.
This is real life. I am still a somewhat cynical nonbeliever. There are many in Sacramento who I
do not trust and feel are motivated only by money or political gains. But I know the SDC
residents who are better than me at living in the moment and looking for the good in life. They
keep me motivated. Recently I took a walk on the lovely grounds of SDC. My son asked me if he
was a good person and would go to heaven. My heart aches because I do not believe. But I do
know if there was a heaven that my former SDC clients would be there to welcome him. He
struggles every day against severe autism and the dark ravages of mental illness to be the best
possible person he can be. He sustains me in my dark times and inspires me to be my best self.
He is my spiritual guide.
***
Religious Services Schedule at SDC
Protestant Services – Sunday at 3:30 p.m.
Catholic Services – Sunday at 1:30 p.m.
Jewish Services – 4th Friday from 3:30 to 4:30 p.m.
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SAVE the DATE
IMPORTANT – Our meeting location has changed effective January 1, 2015.
PHA General Meetings are now held in Wagner, on the SDC Campus.
TRANSFORM SDC COMMUNITY MEETING: Saturday, May 2, 2015.
Everyone is invited to the first of four community visioning workshops to generate and discuss
ideas for transforming the Sonoma Developmental Center (SDC) into a resource benefiting both
SDC residents and the community. This meeting will engage stakeholders, including families,
local residents, community groups, legislators, and Sonoma County, in a conversation about the
future as we would like to see it at the Sonoma Developmental Center. Plan to attend and
represent the residents!
SPACE IS LIMITED SO YOU MUST SIGN UP! TO SIGN UP SEND AN EMAIL TO
KATHLEEN at kjmillerkoch@yahoo.com or call 707-291-3836. (Leave a voice mail with name
and reason for attending.)
Organized by our coalition partners, The Sonoma Land Trust, the workshop will take place from
9 a.m. to 1 p.m., Saturday, May 2, at the Vintage House, located at 264 First Street East, in
downtown Sonoma (just one block up from Sonoma Plaza).
SENATE BUDGET HEARING: Thursday, May 7, 2015
This is the Senate budget hearing where a main topic of discussion will be the future of both
Fairview and Sonoma Developmental Center. PHA may sponsor a bus that will take folks from
Sonoma Developmental Center to Sacramento and back for this critical event. We need to show
up and let our voice be heard! Stay tuned for details. This one is worth taking a day off from
work!
MAY PHA GENERAL MEETING: Saturday, May 9, 2015.
The Spring general meeting will be May 9th, from 10 a.m. to noon, and will be held at the new
Wagner location. The featured speaker will be none other than Mark Jackson, one of the creators
of Sweetwater and father of a Sweetwater resident. This is a ground breaking new center for
individuals with autism. Come hear about this exciting model and learn how the creator was able
to make it happen!
OPPORTUNITY FAIR: 10 a.m. to 1 p.m., June 9th, at the SDC Gazebo.
The Opportunity Fair is an SDC event where community vendors come to share what their
different organizations have to offer in community settings. More information means better
informed advocacy for those we love.
There will be no PHA General Meeting in July, 2015.
After our May meeting, the Next PHA General Meeting is September 12, 2015
and will be the election of PHA officers.
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PARENT HOSPITAL ASSOCIATION
GENERAL MEETING
MARCH 14, 2015 – MINUTES
This meeting had a special guest panel as follows: Santi Rogers-Director of the Department of
Developmental Services (DDS); Tracy Krumpin, from Senator Lois Wolk’s office; Bill Dodd,
Assemblymember; Mike McGuire, Senator; Susan Gorin. First District Supervisor; James Wood,
Assemblymember; Diane Ramirez, from Assemblymember Marc Levine’s office; Stephen Gale, from
Congressman Mike Thompson’s office
The meeting was called to order at 10:08 a.m. by President Kathleen Miller. Kathleen thanked the
Sonoma Developmental Center staff, especially JJ, for setting up the room for the meeting. The SDC
administrative report was skipped for this meeting. Those on the panel received two handouts 1) the PHA
questionnaire results from families 2) a page comparing costs at SDC versus the community.
Kathleen said that those on the panel would introduce themselves and make comments. Then
there would be three speakers who would each have about 15 minutes. This would be followed by open
questions and/or comments from those in the audience. Those asking questions would be limited to three
minutes each to allow as many as possible to have an opportunity to ask questions of the panel members.
At the end Kathleen said she would make some comments and panel members would also make closing
comments.
Stephen Gale said that Mike Thompson is watching the developments about the developmental
centers. His primary concern is that the needs of the residents are a priority. Mike Thompson has been in
touch with Senator McGuire, Assemblymember Dodd, Supervisor Gorin and others. He supports the
Sonoma Coalition.
Diane Ramirez said that Marc Levine was in support of legislation to protect SDC.
Supervisor Gorin is chair of the Sonoma Coalition. Kathleen Miller with the Parent Hospital
Association, Richard Dale with the Sonoma Ecology Center, and John McCall from the Sonoma Land
Trust are members of the Coalition. Supervisor Gorin has met with Secretary Dooley as well as members
of DDS, and members of regional centers. There are six county departments working on this. The
county’s legislative advocate has been coordinating the legislative activities for the past year and will
continue to do so for the upcoming year. Last year we were not successful in creating some positive
legislation and this year we may be faced with trying to defeat some proposed legislation. She met with
the cabinet secretary of Governor Brown last week and they are trying to work in partnership with the
administration, with DDS, and with you for a successful outcome for the developmental center.
Senator McGuire spoke next. He thanked Kathleen Miller and Susan Gorin and others for their
efforts. He said that the legislative analyst office is respected when it comes to their fiscal analysis, but
that he felt the recent report about developmental centers came up short when it came to the
developmental center. The number one priority should be what is best for the residents of SDC. SDC is
working on issues related to federal funding. We cannot put a dollar figure on the health and well-being
of some of the most medically fragile residents in the health services system.
SB639 is a bill proposed by Senator Stone to close SDC. Senator Stone has never set foot in
SDC, so he is not familiar with SDC. His bill would set an arbitrary deadline of closing SDC and
Fairview within 2 years and in extraordinary circumstances it would close in 3 years. The legislative
analyst office in their fiscal report says it would take at least 10 years to close SDC and Fairview if we go
down this road. It shows this is a shallow piece of legislation. Senator McGuire has talked with Senator
Mitchell who is on a budget committee so she will understand the issues.
Bill Dodd said that he has been at SDC 3 times just in the past month. The care and the wellbeing of the residents here is the primary concern. There is also a bill going through the Assembly
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proposed by Assemblymember Grove. He appreciated those who came to Sacramento for a hearing
earlier in the month. There are forces out there that are loud for closure of SDC. He believes that the bills
will not pass, but we need to be vigilant.
Tracy Krumpen said that Senator Wolk stands with Supervisor Gorin on the issues. The
conversation must be more than just about finances. Residents need to be taken into consideration.
Santi Rogers had been a director of SDC in the past as well as other developmental centers. The
policy decision is at the Governor’s level. The first part of the budget is the January budget, which is
usually the most conservative budget. There are budget subcommittees in both the Senate and the
Assembly which meet following the January budget proposal. The Center for Medicare and Medicaid
Services has set policy that all 50 states have to address. 69% of the California legislature is brand new to
their jobs. There are new chairs of committees. Diane Dooley, Secretary of Health and Human Services,
is talking with representatives of the centers for Medicare and Medicaid about SDC. There is a letter
extending the federal dollars for SDC until April 11, 2015. The hope is that there will be workable details
for extending the federal dollars further into the future.
Kathleen announced that Marika Yamada is in the audience. Kathleen introduced the first
speaker, Dr. Markley Sutton.
Dr. Sutton is licensed psychologist who worked at SDC for 31 years. He is now working in
private practice. He did a survey for the Department of Developmental Services. Without the
developmental centers those individuals with complex behavior issues will be at high risk for abuse,
mistreatment, and lack of resources. He did a deaths and mortality review based on information from
Agnews and Lanterman as requested by PHA. The information was almost totally indecipherable, so a
table was made for the information to be just filled in. When the table was delivered back, he reviewed it
with Kathleen Miller and expected the information to be clear and concise. The information about the
community facilities was complex and did not make any sense. The populations would change from year
to year. The population from December 31 of one year to January 1 of the next year (one day change)
would be as many as a hundred people difference. What was really concerning to him was that at one
time a couple of years ago, East Bay Regional Center was billing for dead clients.
The developmental centers have been required to report quarterly any use of restraint or seclusion
in all of their facilities. The same regulation requiring these reports requires that all community facilities
that have mentally disabled people also report that information. However, there is a clause that says the
department of developmental services does not have to report this if it is too costly or too burdensome to
do, so they decided they could not do it. They are supposed to routinely justify they cannot do it every
year, but they continue to not report that information. We would like to have that restraint and seclusion
data because we need to decide if people are getting the appropriate treatment.
Approximately 200 of regional center clients on any given day are in jail. There is concern that
those clients are not getting appropriate treatment and that is not reported to the regional center, the
department, or the legislature or anybody on a routine basis. In Virginia when they were required to redo
their developmental center system, they were required to include all people in prison in the plan.
Information about acute psychiatric centers from the regional centers would be critical
information to have in order to access certain treatment centers and facilities. He said he worked at a
facility with four people and that every one of them had been to an acute psychiatric center and one had
been to such a facility at least four times in the last six months. With some additional training they would
able to reduce that use. Right now no one knows how often an individual goes to an acute psychiatric
facility. An incident is reported and the cops take the person to the facility and an incident report is
usually written, but the data is not captured.
At the present time if a licensed psychologist at a developmental center were to go to the
community, he/she could not work in the same capacity. They would not be allowed to be an intermanagement consultant because the change in the vendor code requires certain conditions. It a restriction
on the practice of licensed psychologists and infringes on the provisions of the professional code.
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Furthermore it does not allow clients of the regional center access to professionals with broad based
training and experience with their needs. This is cheaper, but only in the short run. Without these
professionals to assist, the cost in human suffering is great and must be remediated.
The next speaker is Kate Mullins Henderson who is an attorney in Santa Rosa. She is here on
behalf of a former conservator whose brother was born in 1964 and had several diagnoses. He lived with
the family until he was 29 years old and then was put in a home. He was in and out of different homes.
In 2005 he went to SDC and his behavior improved significantly. He had been very violent. He had
sensitivity to sound and touch. At SDC he was put on the right medications. In 2010 it was suggested that
he be moved to a private home facility. It appealed to the family since it seemed he would have 24 hour
care, just like he got at SDC but in a smaller facility and that maybe this would be better for him. In 3
years he died.
He died February 2014. He had pneumonia. Other things noted were Down’s syndrome, epilepsy
and other significant factors that included anxiety, asthma, and malnutrition. At SDC he had the right
amount of protein. The people caring for him at the private home had no certification and did not have the
skills to take care of him. He had a form of epilepsy for which he took a medication, which could not be
crushed without taking away the time-release feature of the medication. The home was crushing the
medication, which led to him having epileptic seizures and then violence. He lost 40 pounds and became
too thin. When you are too thin, you cannot recover from illness. There are laws about medical
malpractice and elder abuse for neglect. Kate decided she could not take the case to court and win. The
message to take away from this is that the place for people like this client to be is SDC.
The next speaker is John McCall who is affiliated with Sonoma Land Trust. He does land
protection work. The developmental center is his top priority at this time. The future of SDC is a unifying
element of the community. We need to reframe the debate from closure of SDC to transformation. We
can work to convince the state not to work as usual practices. SDC is a unique facility, different from any
other developmental center in California because of its ecological value. The Sonoma Coalition has PHA,
Sonoma Land Trust, and the Sonoma Ecology center as partners as well as others including Supervisor
Gorin who is the chair. DDS has been sending representatives to the meetings.
There is a law on the books that says if a DC is to close, here are the steps to follow. We want to
get ahead of that. They would like to propose a different approach. The community interest is
remarkable. Wherever he goes in Sonoma and whenever he brings up SDC, people come to him and ask
“How can I help?”
Last year the land trust in cooperation with their partners started raising money. They have raised
several hundred thousand dollars to launch a community dialogue. The county is supporting doing a
cultural and natural assessment of SDC. The first meeting will be on May 2 from 9 to noon at the Vintage
House in Sonoma. They need to take the language of the Task Force report and figure out how to
proceed.
The budget committee the previous week seemed to be thinking about how quickly they can close
SDC and they seemed to be only concerned about dollars. The Task Force has a set of recommendations
for what could happen at SDC. One item mentioned in the report is a health resource center that would
provide specialized services for people. The Task Force used the word transformation and we need to use
that word.
The next part of the meeting had speakers from the audience line up to speak for up to three
minutes each. (In these minutes the speakers are with numbers.)
1. Her brother has lived at SDC for 80 years. He has had exceptional care at SDC. She
has taken trips to Sacramento, but has not had many good results. She hoped the people here today help
keep SDC open.
2. His brother is here at SDC. He had given the panelists 2 handouts. One was an old SDC
brochure that was made prior to the Colfelt settlement. PHA has been alerted that residents who are
removed from SDC to the community get a 30-day follow-up to see how they are doing and then a 6-
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month follow-up. At 30 days in some cases there have been mistakes in medication and the client is doing
poorly, but because of legislation from Sacramento, they cannot come back to SDC. Many are dead by the
six month follow-up. We need checks and balances. Unfortunately, the task force is following a number
of red herrings. One statement is that the population at the DCs is naturally declining. No it has not: it
has been on purpose. People are pushed out and not allowed back. We want a hearing of the Senate
committee here so we can enlighten people about the red herrings. One of the other red herrings is the
cost comparison. It has been like comparing apples and oranges, instead of apples with apples.
3.Her brother is a resident of SDC. She does not support closure, but she recognizes the
need for transformation. We need to focus first on the gaps in service in the community. Her brother has
been in and out of the community and she is grateful there was a developmental center to catch him when
the community failed him. She served for six and a half years on the North Bay Regional Center board of
directors, so she is somewhat familiar with what happens in the community. She has questions about
community services. How well do they get dental services? How well are they getting antipsychotics?
Will the health care be given by someone with the necessary expertise to deal with her brother’s issues?
Will it be safe to walk in his neighborhood in the community as it is here? Will he have a work program
as he has here? What happens if a behavior escalates? If the behavior escalates, will he be kicked out his
home and where will he go then? Where do you have someone go if there is no SDC? She is concerned
that the regional center is planning homes for residents who will be coming from SDC without input from
the families of those residents. She did not think these issues could be handled just through the IPP
process. She thought the regional center should reach out to family members and get their input before
they develop homes in the community.
At this point Kathleen Miller said that the regional center said they don’t need to talk with you
and asked if Santi Rogers could help, so the regional center will talk with families prior to deciding on
what homes to develop. Santi Rogers replied “Absolutely.” Kathleen said she would follow up with Santi
on this.
4. His sister lives at SDC. Once SDC is closed, you cannot put it back together. Closing SDC will
result in a death sentence to some in the population. The story we heard earlier about someone dying 3
years after going into the community is not unique. The integrated institutional knowledge, caring and
love that the staff has here is special. They know what people need and provide it. We would lose
institutional knowledge if SDC closed. The people who work here work as a team and are not minimum
wage transient people spending the summer at a regional center between college years. The people here
want to be here and care about the people who live here.
5. She is a member of the Sonoma community speaking for a group of people in Sonoma
concerned about SDC. She has had people in her family who have suffered from mental illness. Mental
illness is not unrelated to those at SDC. Our country is not doing the best job for the developmentally
disabled and the mentally ill in our society. SDC should be caring for more people with disabilities, not
less. SDC could be become the center of last resort for the many people who are suffering from
developmental and mental health problems. There are people who are not receiving proper care and are
on our streets and in our prisons. Fairview and Sonoma could be centers for developmental and mental
health. There is a need in Sonoma County for long term facilities for the mentally ill. The figures
comparing the costs at SDC versus the community are ridiculous.
6. She has 3 children who are living in the community who are disabled. One of her children is at
SDC. He had lived in several homes prior to coming to SDC and does not want to go back to a home in
the community. Her son who lives at SDC needs dialysis 3 days a week and is getting that treatment. For
him to go to the community is not just ‘will he be happy there’, it is a matter of life and death.
7. Her daughter lives at SDC and does not want to move out of SDC. Her daughter says for
herself that she does not want to move to the community. To show how quickly things can change, she
gave an example of something that happened. She had been off anti-seizure medication that she had been
taking since 1992 and could no longer be medically justified. She had been off an extremely low dose of
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medication for less than two weeks when she came home for Christmas. She had a seizure that was so
severe that the paramedics decided to take her to the hospital. She called Malone at SDC and the doctor
was on the phone with the emergency department within a five minutes. Her doctor at SDC and the
emergency room doctor decided what needed to be done. This is for someone who was healthy, but
within 9 days of coming home for a visit had a medical emergency.
8. She is a special education teacher who has worked in 3 developmental centers and at Alta Mira
Middle School. There are unique services available here at SDC that are not available in the community.
She wanted to support what John McCall said that SDC could be financially viable if these services such
as custom made wheelchairs, custom shoes, dental care (dentists who know how to work with severely
disabled patients) and more were available on an outpatient basis. These services are really needed in the
community. Costs per person would be reduced if admissions were reopened. People here now have
extreme medical and behavioral conditions. One student she had was moved over the objections of the
family and within a year, he died. She urged people to contact Governor Brown about the issues.
9. She is with a non-profit theater company. For the past four years they have provided
entertainment in the Sonoma Valley. SDC had a vision invisible to many others at its start. Over a
hundred years ago the founders of SDC worked to establish this place which would serve disabled in a
way that would encourage them to thrive. The efforts of her company could provide a collaborative effort
here. SDC could house inspiring theatrical venues. It could create revenue and jobs in Sonoma Valley.
They could help the residents in art inspired ways.
Kathleen interrupted the speakers at this point because Senator McGuire was going to need to leave
soon, so she decided to give her speech now instead of later.
Kathleen Miller: There is currently no word of plans to close SDC. The care here continues to be
top notch. None of us can be blind to what is happening out there in Sacramento. The regional centers are
working at an increased rate with increased funding to develop community settings. The population here
is declining and the policy that prevents admissions continues. The Feds continue their one size fits all
thinking as they search for a reason, any reason, to cut off funding. It is not difficult to see that change is
coming. The only question we have is “How long do we have to plan and how long do we have to prepare
for it?” Many of us have worked with our family members here for decades and we are familiar with the
comment that there is no reason for us to worry. The regional center staff give us these rainbow stories of
how well the clients do in the community settings and sometimes that is true. However, we remain
concerned about the kind of life our family member will have in the community. That is because we also
hear the other stories: stories of neglect and even abuse. We also know there is no real data. We don’t
know how may die. We don’t know how many are restrained and how. We don’t know how many are
making repeated trips to acute psychiatric centers and being overmedicated and then sent back to homes
that are not equipped to deal with them.
When stories leak out about problems, they are always presented as isolated incidents. Two
former residents that we know of died last year; one was medical and one was behavioral. They were
former SDC residents and their deaths were preventable. They died because of staff errors. What we
don’t know is how many more there might have been.
In the face of certain change, what can we do to protect those we love? Some of you will be
facing increased pressure to place you family member into the community. Be sure to speak out and let
the regional centers know how much you value the care here. If the pressure continues, don’t just ask
about the board and care home, but also ask about the day program, the medical services, the dental care,
how they will get their wheelchair fixed. Then do your homework and follow up with calls and visits.
You know this: Once they leave SDC, they will not be coming back. When they get in trouble because
their medical or behavioral condition escalates, you need to ask what is going to happen then. You need to
get everything in writing.
We need to stop the battle that happens between the developmental center setting and the
community setting. The truth is that many of our loved ones are going to be forced into the community
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and many former SDC residents are already there. Think about it; those in the community are our brothers
and sisters. They may not see it that way, but we have to. We need to join an effort to improve
community services and to fill in the gaps in care. We need to advocate for our state staff to work in those
settings and for better pay for the line of care staff. We need to advocate for the wrap around medical and
dental services that were promised by the DC Task Force that has not happened yet. Above all we need to
demand greater transparency and accountability in community settings. We also need to embrace out
partnership with the Sonoma Coalition. We are grateful to the Sonoma community and their support.
Thank you for being here.
The Coalition has two goals: 1) protect the land and the resources here for future generations to
enjoy. We don’t need another high end tourist destination on this land. 2) Make sure we have a site here
that is a safety net of services for society’s most vulnerable citizens. Too often those citizens come at the
end of the line when it comes to services.
This time it has to be different. We have to unite with the goal of getting a real safety net in place
for those who need it most.
While those in Sacramento see money from a tourist destination, we see a chance to protect the
open space and the resources for both current and future generations. While they look at the SDC staff
and see them as expensive and no longer needed, we see a repository of committed and talented
individuals with unique knowledge and expertise. While they see a community as a cheaper alternative,
we see a community that needs us to help fill in the gaps of that system and help those fragile clients who
are continually falling through those gaps. When they see the residents of SDC, they see a liability, and
the providers see someone to fill their pocketbook, but we see human beings. We see neighbors, friends,
brothers, sisters, sons and daughters. They look at SDC and they see problems. We look at SDC and we
see possibility. Fortunately we have legislators who are eager to help us do the right thing. We are
grateful. We have a new DDS administration we hope is going to be open to doing things in new and
better ways. To those in Sacramento who do not believe in the possibility of the future of SDC, we say
open up your hearts and minds because we are determined and we have a dream and we are just getting
started.
Senator McGuire: He thanked Kathleen Miller for her advocacy. Those who live at SDC must be
the priority, not the bottom financial line. Specialty services and health must be a priority. We cannot
have tension between the regional centers and the developmental centers. We must protect this land, but
the number one priority is the residents.
Kathleen returned to having speakers from the audience.
10. Her son lives at SDC. The trauma of moving the severely disabled needs to be addressed. Her
son lived on one of the units here for 30 years and was moved to a different unit at SDC and the staff in
the new unit was as caring and well-trained as the previous staff. It took six months of diligent work to
get him settled into the new unit. She does not sanction having her son move to a completely different
environment. Her son likes all the activities he is able to participate in here. Her son also has a job here.
Developmentally disabled lives matter.
11. His sister lives at SDC. How do we assure the oversight of care in the community? We don’t
have the verification of care in the community. We would like to know the numbers who have been
moved out who have died. We have a right to know that. DDS cannot get out of the business of taking
care of chronically acute care issues.
12. He is a resident of Sonoma Valley. He is prouder of SDC than he is of a hundred wineries.
He had several critical comments. Hearing about somebody wanting to shut down SDC in 2 years who
knows nothing about it. Hearing about people making spurious arguments about safe it is in the
community. People telling him about the complexity of Sacramento and the political environment.
13. Her sister lives at SDC. Her parents placed her sister here and were happy with SDC and
wanted her sister to be able to stay here for her life. Her sister is happy and content here. Her parents died
a year and a half ago. Recently she got a call that she had to look at a home in the community for her
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sister and she does not want her sister to leave SDC. When her parents were alive, they were not called
about a home, but now that they are gone, she is getting this call. They said they had been having trouble
trying to get in touch her, but she said no one else had been having trouble getting in touch with her.
Can’t they let her grieve? The clients’ rights advocate said that her sister had the right to go to the
community even though she is nonverbal and non-hearing and cannot express the desire to do so.
14. His son lives at SDC. Residents here can go to church services even though some have
behavior issues. A trailer bill in 2013 imposed a moratorium on admissions. He is concerned for people
who will not be able to get into SDC. Parents die and then residents get moved and then often die shortly
after the move. He suggested that possibly one of the legislators could put in a bill to reverse the
moratorium. A society is judged by how it treats its most vulnerable citizens.
15. Her sister lives at SDC. The Lanterman Act had great ideas and good intentions. SDC is the
least restrictive environment for some rather than community placement. Her sister went into the
community and it did not work for her. She was kicked out of that home and hand cuffed, jailed and
forced to go to another home in Marin. Eventually she did get back to SDC. There are freedoms here that
are not in the community. We can go for a positive change. It does not have to be a closure.
16. She has a family member at Porterville Developmental Center. Her sister loves being at
Porterville. They have been offered homes in the community. The first home had a torn fence to highway
99 and was next door to a sex offender. One of the workers there said that they earned $7.50 hour, but
their hours were being cut. The second most recent home she visited was in the same city and she said
when she tried to ask questions she were told it was none of her business. In particular she had a question
about the solvency of the business since the business had over 20 entities with the state. They wondered
why they needed so many entities to operate their homes. When they went to the home, it was vacant and
had recently been relicensed. They would not give any information about the staff, so she filed a freedom
of information request because it was a private non-profit organization. She waited for months. She
finally hired an attorney to get any information. When she received it, she found out an RN would be at
the home 8 hours a month. The behavior therapist lived 3 hours away. They advertised on Craig’s list for
workers. They have recently found a home which might work, but it is outside the boundaries of the
regional center and there would be a problem for the vendor because of that. Kathleen suggested she talk
with Santi Rogers. Santi agreed to talk with her.
17. She lives in Sonoma Valley. She wants a call to action. She asked Kathleen for suggestions.
Kathleen said the first step is to put the May 2 date on the calendar. Also on May 7 there is a Senate
budget committee meeting and people should try to go to that.
The meeting was adjourned at 12:18 p.m.
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GE, CA 95431
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