SACRAMENTO, Calif. — "It's inhumane," said Deborah Findley. "Just absolutely inhumane."
Findley's son, Andrew, is one of the 400+ individuals conserved by the state agency, the Department of Developmental Services.
Jill Schutte's son, Garth, is another.
"I walk by his bedroom with his Elmos knowing that's where he should be, that's what he loves and that's what he wants," said Schutte.
Garth is a devout fan of Sesame Street's Elmo. He's not allowed to live at home, see his mother or his beloved stuffed toys.
Findley and Schutte are a few of many ABC10 spoke with for our investigation into California's conservatorship system, "The Price of Care: Taken by the State."
Our now nearly three-year investigation digs deep into the legal tool stripping someone unable to care for themselves of their civil rights and giving them to another person.
Our investigation uncovered a failing system and exposed alarming practices of the state agency responsible for the rights and needs of all Californians with disabilities: The Department of Developmental Services (DDS).
"The Price of Care" has been credited for getting the first-of-its-kind legislation passed, AB 1663, as well as forcing DDS to announce new reform initiatives, including the creation of a national panel of experts to review the state agency's conservatorship process.
Now, the panel has released its findings in a new report.
"There's no question that this panel was put together and that this report was put out there because of the ABC10 series," said Disability Voices United President Judy Mark. "That is literally the only reason they did this."
The national panel consisted of 10 experts. Mark says they held five meetings and four focus groups, in which she was a part of the focus group with advocates.
Yet the panel did not interview any parents of those conserved by DDS, like Schutte or Findley.
"These are parents that are begging for access to their child," said Mark. "The fact this national committee did not take the time to listen to their point of view... they should've listened to them. The fact they didn't talk to them makes this whole report very problematic."
It's one of Mark's concerns about the panel's review. She wonders why the panel did not question if DDS, a massive $12 billion state agency, should be conservator at all to someone with very specific needs.
"Government should not be conserving people. That's just a bottom line," said Mark. "It doesn't happen in most states in the country and we just shouldn't be doing it."
ABC10's investigation, The Price of Care: Taken by the State, uncovered how DDS obtains conservatorship and then gives the responsibility of caregiving to their regional centers. These centers operate under DDS and are located across the state to provide first-hand services to clients with disabilities.
"The agencies that are actually serving as the day-to-day conservators are the agencies that are the decision makers about what services a person receives," said Mark. "So there is actually no advocacy happening for this individual in their lives. They are locked away. They are pushed away. They have no one watching to see how they're doing."
The report also showed 81% of those conserved by DDS are moved into facilities; something Mark describes as "highly restrictive institutionalized settings."
"That means people do not have free choice and control over their lives at all," said Mark. "These settings are very institution-like, we know there are high levels of abuse in these settings."
These facilities are where Garth and Andrew live. When DDS conserved and moved them, their families had no idea where they were located.
"We had absolutely no idea," said Schutte. "They would not even say if he was in Sacramento. We did not know."
"Prisoners... they get visitors," said Findley. "My child is not allowed any of that."
A 2022 California State Audit found DDS is not properly monitoring these facilities. In a one-on-one interview with ABC10, the state's audit team told ABC10 the lack of monitoring by DDS has led to life-threatening mismanagement of medications and even mold in some facilities. It's why Mark hoped the panel would've recommended changing the fact the vast majority of DDS conservatees live there.
"This report should've made this recommendation; these individuals should've been moved out of these institutionalized settings into more individualized housing arrangements with person-centered services," said Mark.
Because regional centers do this for other clients, we know it can be done, Mark explained.
"[Those conserved by DDS] should be living their best lives as opposed to lives just tucked away and out of sight, out of mind," said Mark.
But there was also a number of recommendations from the national panel Mark was pleased by.
"One of the most positive recommendations that comes out of this report is the commitment by DDS to increase education training for regional center staff, self advocates and family members around alternatives to conservatorship," said Mark.
She's pleased the panel recommended those conserved should have a thorough review to hear what exactly they want.
"It means they want to be asking that individual who is conserved what it is they want," said Mark. "What are their desires? Who do they want to be with? Where do they want to live?"
But these recommendations are massive undertakings for an already overwhelmed system.
"How are regional centers supposed to be implementing this without the funds? Because budgets are tight right now," said Dr. Barbara Imle.
Imle was a regional center service coordinator who left to get her doctorate researching this system. She found for DDS' 21 different regional centers throughout the state, there's 21 different ways of doing things.
"Each regional center is doing something different," said Imle.
It's an issue the national panel recommended should be changed by DDS writing guidelines to create consistency across regional centers.
"Those types of things are very important because they're not happening right now," said Imle.
But for regional center service coordinators - the staff actually working one-on-one with clients with developmental disabilities - Imle is concerned the panel's recommendations could add more to coordinators' already overloaded plates.
"I don't feel it's fair to just put it on service coordinators and have them absorb the extra work," said Imle.
How implementing the panel's recommendations is actually going to happen is a question both Imle and Mark have.
"It's vague," said Imle in regards to directions or specificities in the implementation process. "I think it's intentionally vague."
"There's so many details about these recommendations that we still don't know if these recommendations are actually going to get implemented," said Mark.
So, ABC10 asked DDS for specifics, including if they plan to implement the national panel's recommendations? If so, when and what's their timeline? And with what money from their budget? Here is the response from DDS Director Nancy Bargmann.
"The six-month examination by the national panel of experts provided important recommendations to DDS to improve how we manage conservatorships and to enhance safeguards those in these conservatorships.
The panel noted that DDS’ limited role in conservatorships is appropriate along with the implementation of the recommended improvements. As we continue to review the continued need for conservatorships where DDS is the conservator, as well as actively explore alternative ways to meet the needs of an individual or family, it is likely the number of DDS conservatorships will continue to decline. At all times, DDS only enters into a conservatorship when there is clear and convincing evidence it is necessary to protect an individual’s well-being, and that there is no appropriate friend or family member who can provide the needed care.
The specific processes used by the panel were not dictated by DDS, and our department cannot speak to specific elements of their examination.
DDS is reviewing the panel’s recommendations and plans to implement them. In some cases, this implementation is underway or already completed. In others, time will be needed to ensure change occurs effectively, permanently and safely. Since the review and analysis of this report continues, we are not able at this time to elaborate on each recommendation, timeline for implementation, or expense.
We take this report and the work that went into it very seriously. The panel’s report provides a roadmap DDS will use to continually improve how we deliver services to those in particular need of help to be safe and supported."
While experts are pleased to see the start of some desperately needed reform, families ABC10 highlighted in our investigation are still at their wit's end, unable to be with their loved ones.
"The fact that he's not allowed to spent time with his family is just a crime," said Garth's brother, Ian Schutte.
