Because so many of our members and family members are elderly and have underlying medical conditions, combined with reduced attendance due to caution, the board has reluctantly decided to cancel the 3/14 meeting. This is a difficult decision for many reasons. We are not dealing with probabilities. We are dealing with a heightened level of risk that is not clear. But under the circumstances, cancellation is prudent. 

We will not be able to make the same impact without the annual meeting in March. We have successfully persuaded legislators to take up our issues due to the personal stories and family advocacy. But, attendance has been a factor in influencing our representatives. It has become plain over the past few days that some members felt that they could not attend out of an abundance of caution.

The state budget is being firmed up over the next two to three months. We are inclined to wait at least a couple of weeks to see where things are heading before we make a decision about another legislative meeting date. Hanna is reserved for an FAU/ PHA meeting on 6/13. That might be a practical option. 

Subcommittees have produced proposals that we planned to present on 3/14 regarding safety net, dental, and spiritual services.The people involved in preparing proposals will present them to our legislative allies in the next week or two. We will forward those proposals in a separate message.

We regret any inconvenience this causes.

Brien, President
FAU/PHA

The meeting was called to order at 10:05 AM by Kathleen Miller.  Guests were Dr. Stephen Okawa, Karen Toto, and Dr. Anne French.

The minutes from the previous meeting were approved.

Kathleen has several announcements.  There will be a name change for PHA now that we are not longer associated with the developmental center.  The new name will be PHA/Family Advocates United.  The next general meeting will be in September.  It was suggested that a representative from the North Bay Regional Center be invited to come.  New by-laws will be presented in September.  There will probably be less general meetings in the future and there will be meetings by regional center affiliation.

The documentary about SDC is complete.  The film looks at the closure of SDC.  There are interviews with some family members of those who moved from SDC.  There are also interviews with former SDC staff and some others.  There will be a showing of the film at the Sebastiani Theater in Sonoma on August 4 at 1 PM.  There may be a panel following the showing for comments and questions.

On June 15th at Hanna Boys Center at 9 AM there will be a meeting to give updates above the future of the SDC land.  This past week a group of representatives from the coalition met at the cemetery on SDC to consider steps to take to preserve the cemetery.  They hope to have a small parking lot near the cemetery along with information posted about the cemetery.

A handout has been created with information about PHA and how to join. 

Kathleen has people at the meeting introduce themselves. 

A concern that some SDC movers almost lost their SSI benefits and/or Medicare/Medical benefits because of some problems with financial issues.  It was suggested that family members look carefully at what New Leaf (the fiduciary for many of those who moved from SDC) arranges and what you are asked to sign.  After people move from SDC (or other developmental center), there can be a lag in getting everything in place and often the regional center funds the person for a period of time before things are settled.  The regional center is later reimbursed.  While that is happening the SDC mover can have the amount in their funds go over the limit to be able to get SSI and Medical and that can create a problem.

Kathleen introduced the guests and had Karen Total introduce herself.  Karen Toto is the Executive Director of Aleana Community Living.  She has been in the field for 35 years.  She worked on setting up the Schreiber Center which provides mental health services for adults with intellectual and developmental disabilities.    She would like to see such centers throughout California.

Dr. Steve Okawa served as a dentist at Agnews, SDC, and now at Napa.  He was providing dental care at SDC two days a week during the warm shut-down of SDC.  He took the last patient last week and is now at Napa.

Dr. Anne French was at SDC and is now at Santa Rosa Community Health on Dutton in Santa Rosa.  The clinic has been open since 2018 and is quite busy.  They just provided dental care for a patient needing oral sedation.  The clinic has patients who were at SDC and also patients who were never at SDC.

Kathleen said we need to learn about programs that are working so they can be replicated elsewhere in the state.  She said that the death rate for those who have transitioned from SDC has slowed.

Karen Toto said that Dr. Schreiber, a psychiatrist, and her husband were seeing patients who had special needs.  Both died within six months of each other.  Sandi Soliday worked to get health care services set up which would provide mental health care.  We know that people with developmental disabilities can also have mental health needs.  The Schreiber Center was modeled after the Puente Clinic which offers mental health services for developmentally disabled in San Mateo County.  The Schreiber Center only offers services to people meeting special criteria.  They have had good attendance rates (90%) with few no-shows for appointments.

Dr. French said there is a lack of training for medical professionals to enter the field of serving people like those who moved from SDC.  There is a nationwide shortage of psychiatrists.  Schools training doctors, dentists, and other medical people need to provide some training about the developmentally disabled.  Dr. French said the Santa Rosa clinic has their first person coming for two weeks to get some training on how to serve the developmentally disabled.

Kathleen said there are people with behavioral issues who are non-verbal or have very little communication skills who need services.  There is a concern about how those patients are able to get help at a clinic.

Karen Toto said that there are many criteria you look at when a person has a psychotic episode or similar event.  Someone who has autism might have behaviors that are handicapping and can become a client at Schreiber. 

MHSA (Mental Health Services Act) which provides state money to counties for mental health services helped to fund the Schreiber Center. 

Dr. French said that it is very important to get to know the patients. It is hard to know what some of the patients understand.  Some are not very verbal, but understand more.

Dr. Okawa said that one his dental hygienists was asked to spend a couple of days in Sacramento to help with the legislative analyst’s report on dental services for the developmentally disabled.  The people in Sacramento told the hygienist that they knew nothing about dental care for the disabled.  There are 21 regional centers in the state and they a pretty independently run, so it is hard to coordinate a dental program statewide.  Not all regional centers have a dental coordinator and some basically have no dental program.

Kathleen said that anesthesia for dental work needs to available county by county.  Maybe each regional center needs to have a dental consultant.  Maybe dental work requiring anesthesia could be done in a surgery center instead of a hospital.  The PDI (Pediatric Dental Institute) Surgery Center in Windsor provides dental care for children.  They provide full dental services and have children from all over the state coming for their services.  We need to have a similar clinic for adults.   Kentucky has a clinic that has worked to get people to need less sedation when getting dental care.  We need to start sharing strategies of how to set up services and fund them.

There is a wage rate study in progress in the state.  Some people want to get rid of specialized rates. 

Naomi Fuchs is talking about having funding streams for medical clinics that do not go through the regional center.

The clinic in Santa Rosa on Dutton is a federally funded health clinic.  That clinic got seed money to create the special clinic.  The clinic is integrated medical, dental, psychological, and other services all at the same place.  They have a nurse case manager.  They are also committed to longer appointment times since DD (developmentally disabled) often take longer to serve.  They have funding now, but there is a concern about funding in the future.  Santa Rosa also has a behavior psychologist who helps coordinate between the clinic and the home.

Santa Rosa is having problems with mental health and funding services for those people.  Nationwide there is a shortage of beds for people who have crisis needs.

Kathleen turned the meeting over to questions and comments from the audience. 

We want to be sure that staff is maintained in the homes.  There are concerns that community behavior homes can keep staff.  There have also been concerns about supported living.  SLS (supported living) has bee overused by North Bay Regional Center.  There are some in that system who are not really ready to be in that type of system.  There can be a danger to staff and to clients.

Mike said his son is not in Dental Cal, but Kaiser.   He asked if PDI took private insurance.  Dr. French said that it does take private dental insurance.  The Santa Rosa clinic has not connected with Kaiser yet.  Dr. French said she would like people from Kaiser to come to the Santa Rosa clinic to learn some skills about how to care for the DD (developmentally disabled).

Kathleen said there are risks with specialists who think they know how to treat DD, but do not really know.

Some dental work is done in the homes.  Alan Wong at UOP is helping replicate his services throughout the state.  He has a training module to train people to work with DD.

What happens if there is a dental emergency with one of the behavioral people?  Santa Rosa has emergency appointments.  UCSF and UOP have wait lists, but can fit in some emergencies sometimes. 

Kathleen asked the guests what one thing PHA could do.

Karen Toto it is important to get people to talk to each other and that the regional center has to be at the table.  Stephen Okawa said that headquarters needs to understand the problem.  There should be a few state clinics to handle those who need more complex dental care.  Dr. French said we need champion parents, legislators, and health care workers.  We need to collaborate with national organizations.  We need to build a desire in people to work with this population (DD).  They can see the joy of working with these people.

The paperwork we have to sign is cumbersome.  A health passport can help tell the story of who your loved one is.  Dr. French sent it to PHA and it will be on the website.  Make sure the home where your loved one is living has an up-to-date grab and go packet.  Legislators do not know all the information about medical funding.  They count on people like those in PHA and others to help them get the information.

The next North Bay Regional Center meeting will be on June 10th in Santa Rosa.

The meeting was adjourned at noon.

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). 

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 21^st 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