SDC staff and administration at odds over transfer of patient
Future of developmentally disabled people uncertain
The people who directly care for “Martha,” a 68-year-old developmentally disabled patient at Sonoma Developmental Center in Eldridge, have taken an extraordinary move – they have hired an attorney, at their own expense, to prevent Martha from being transferred to a private placement clinic in Santa Clara.
Martha (not her real name) can’t speak. Although blind and hearing impaired, she can walk and play and enjoy the outdoors in supervised outings, but she has no parents and no conservator to advocate for her. And in the world of politics and big money which constitutes the business of caring for developmentally disabled, that can be deadly.
Many people are concerned that removing long-term, severely disabled patients can traumatize them to the point of death.
The facts may be simple; however, the background is complex and ambiguous, with billions of dollars at stake and the care of over 225,000 people in the balance.
Since 1969, the Lanterman law has driven patient policy in California. It basically says the state’s system of Developmental Centers, once used to warehouse all levels of patients, will be replaced by a system of privately operated facilities housing no more than six people. They are administered by 21 Regional Centers, set up to eventually replace the Developmental Centers.
What has become clear to a number of parent/hospital groups, caregivers and others interested in the field is that there may yet be a need for larger institutions to properly care for the most severely disabled.
That’s what’s bothering the people who care for Martha, some of them for over 25 years.
“A group of staff members feel strongly that it would be dangerous to move Martha,” Monica Wegner said. Wegner, an attorney with offices in San Francisco and Fremont, specializes in this area of the law. “Martha has been there for many decades. It’s what she knows. It’s her home.”
A psychologist who prepared a court-ordered evaluation of Martha agrees. After examining the patient, the staff, the administration, and the proposed care facility, he concluded that moving her to another facility would be risky because of the trauma involved.
No one is saying that the care facility she would go to is substandard; they are concerned that it doesn’t have the appropriate level of care available and that the move by itself can be injurious to the patient’s health.
“These homes are beautiful with many amenities, but don’t always have the physical services, day programs, or a high level of interaction with the client,” Wegner said. “The biggest concern for Martha is when you spend 60 years in one environment, you develop close ties with staff and others. They are concerned that she would have issues if she is pulled away from everything she’s known all her life, for a pretty house with good painting and beautiful floors.”
Martha’s case isn’t the first time patient transfers have been challenged. There have been dozens of articles written over the past six years about parents and advocates having to go to court to keep patients from being transferred, even though the law says they should have a definitive say in the matter.
Many parents and conservators caught up in the process of moving patients out of developmental centers into private care say it is being driven by money and politics more than concern for the patient’s well being.
Pat Walters of Napa has had a daughter at SDC for the past 10 years. She is a member of the SDC Parent & Hospital Association.
“What is basically happening is that for various reasons the California Department of Developmental Services (DDS) would like to downsize and close developmental centers and instead have persons like “Martha” live in group homes and other places,” Walters said.
Like all people declared developmentally disabled under law, Martha has an Individual Program Plan (IPP), a list of all the services and requirements developed by a range of people. If there’s a relative, they are part of that team, along with social workers, doctors, and whoever that person needs to determine what’s best for them.
“In Martha’s case, she has no relative or legal conservator. People on her IPP team – social workers, doctors, employees of state – do not agree that what’s best is for her to leave. They do not think that. The law requires she be in the least restrictive environment. They don’t believe leaving will provide that, but will be harmful to her and possibly to the extent of being fatal to her. They are trying to stand up and say she shouldn’t leave,” said Walters.
Steve Johnson is a patient advocate who was very active throughout the closing of Agnews Developmental Center in 2009 and put the issue into perspective.
“There are folks who can exist and do well in individual care settings, others who thrive in congregate facilities,” Johnson said. “Those who have lived in them for many years, moving them is not always in their best interests.”
And caring for the severely developmentally disabled requires special talents and knowledge. As the psychologist pointed out, not every M.D. is able to care for these patients; they require special handling and techniques that are not available in the general population.
Several disturbing reports have surfaced about residential care facilities and developmental centers in the past few years. A 2010 state audit found a troubling level of employee intimidation in some developmental centers, directly related to transfers.
The people tending to Martha have expressed fears of losing their jobs and benefits for objecting to this transfer, their attorney said.
Another aspect of the transfers is that no one could possibly follow up on Martha to see how well she is doing, due to HIPAA (Health Insurance Portability and Accountability) rules regarding privacy and security.
“If something happens, she cannot communicate,” attorney Wegner said. “She’s at risk for all kinds of things. If (the caregivers) did agree she could be moved, they want to know what constitutes a failed relation and what would get her returned to the hospital. Under what conditions would she be returned?”
There is no mechanism for such a follow-up under the current policies at the DDC or SDC or Regional Centers. There is no public review of patient deaths in residential facilities and no meaningful statistics are available to measure performance.
“I’m an engineer by profession,” Johnson said. “I like to work with data. The state doesn’t make that available. What I think is there is possibly something that they are hiding; if it was data they were proud of, you’d think they’d be presenting it to us.”
Jim Rogers, Executive Director of SDC, did not respond to phone calls as of press time.
A hearing to determine whether or not Martha will be moved will be held in front of an administrative law judge in Santa Rosa in early March.
All those who spoke for this story have nothing but the highest praise for the Sonoma Developmental Center and the people who work there. It has been a major part of Sonoma County’s history since it was opened in 1891 with 148 patients. At one time it was the county’s largest employer, with thousands of patients. Since 1995, however, the patient population has dropped from 1200 to just over 600.
The Center’s reputation is so good, parents are litigating to keep their loved ones there and even to get them in in the first place.
The battles being fought over care for the developmentally disabled are far from over. As usual in battles of ideology, it’s the voiceless who are caught in the middle.