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.