Aging and Autism a treacherous path

 – CA State Agency failing people with all disabilities

Anne Dachel transcribed a chilling report from California on the perils adults with disabilities and their families face. Competing interests are everywhere. Control of budgets, often well into 6 figures, comes into play. If you have applied for Guardianship or Conservatorship, you know the agony of the process. This story delves into how wrong the process can go.

California state agency failing people with disabilities | abc10.com

https://www.youtube.com/watch?v=XeRWe863oOs

ABC 10 Sacramento

Andie Judson Deborah Findley Tom Coleman

Aug 31, 2022,

Deborah Findley’s son, Andrew, grew up with serious health problems, including autism, Lyme disease, and other conditions. Now 21, he is severely disabled and requires 24-hour care.

When he turned 18, his mother was advised to seek a conservatorship for him. That’s a way for someone to assume legal guardianship over an adult incapable of caring for themselves. Being his conservator would allow her to make medical decisions on his behalf, along with other choices regarding his care.

But when she and her husband petitioned the court to become Andrew’s conservators, they got a nasty surprise.

California’s Department of Developmental Services filed a competing petition. The department said that DDS should be Andrew’s conservator because of alleged abuse by his parents. The judge followed the agency’s recommendation and Andrew’s parents were shut out of his care.

As a result, they have been unable to visit Andrew in person for over three years, sometimes not even knowing where he was located.

There appears to be no legal avenue to challenge the court’s decision. Deborah says she has spent over $300,000 in legal fees fighting the state’s court-ordered conservatorship, trying to get access to her son. So far, she’s had no luck.

The issue of conservatorship is a complex one. You may remember news reports about pop star Brittany Spears and her years-long fight to regain control of her finances and personal life. A judge finally ended her 13-year conservatorship in 2021.

Investigative reporter Andie Judson, of ABC10 TV in Sacramento, examines Andrew’s case in a multi-part news series on conservatorship called “The Price of Care.” It is a complicated story with chilling implications.

San Diego ABC10

Andie Judson: The state of California won’t let Deborah Findley see her son, Andrew, in person. …She has spent over $300,000 in legal fees fighting the state order conservatorship….

Deborah Findley: …The calls now are restricted to twice a week, 30 minutes.

Judson: She says she has to follow visitation guidelines. Questions like how he’s feeling are called “triggering” and put her future visits in jeopardy.

Findley: Over the past three years, I’ve only been allowed less than a hundred hours of contact with him.

Judson: Instead of asking him questions, she shows him his favorite things, like his presents. …Christmas is just a few weeks away, but Andrew is not allowed to come home for the holiday. …She’s also not allowed to record visits, so we filmed her side, redacting her son’s face and voice.

…Andrew, now 21, was hard to understand, losing focus often. She says he’s on many medications that she’s opposed to.

Because of the conservatorship, Deborah has no say.

Findley: He used to be fully conversational, and he’s just a shell of a human being right now.

Judson: This was not what she was expecting when she sought conservatorship nearly four years ago.

Findley: You’re told, you know, when your special needs child turns 18, you need to get conservatorship.

Judson: Experts we spoke with said there’s a pipeline that leads to conservatorship starting through school, doctors or regional centers.

Findley: The regional centers kind of pound that into parents too.

Judson: Andrew has autism as well as other health conditions requiring that he has around the clock care.

Findley: Court records show he had some challenges, but you know we have the best therapists in northern California, the best of everything.

Judson: They thought they could continue this care with the conservatorship. She says they were blindsided. 

Findley: It was pretty much a done deal.

Judson: In reality, the court was in control.

Findley:  We had no idea that something like this could happen.

Judson: What the court received, along with Deborah’s petition for conservatorship, was a competing one from the [California] Department of Developmental Services, which is known as DDS, saying that they should be conservator because Andrew’s were allegedly abusive.

DDS has continued to say that throughout Andrew’s life, his parents have interfered with his health, safety and welfare; that they couldn’t handle his growing aggression and weren’t providing proper care.

Deborah says she was never asked about this.

Findley:  A court appointed investigator never interviewed us—still hasn’t in three years.

Judson: The court listened to DDS, granting them temporary conservatorship over Andrew in September, 2019.

Findley: We become legal strangers to my son, and he was treated like an orphan.

Judson: Since the conservator process began, Deborah says for periods of time she hasn’t been told where her son is.

Findley: It was a lot of nights of crying myself to sleep, going, “Where’s my son? Is he alive? Is he dead?” I don’t know. Nobody would tell us.

Judson: Seeing people like his mother may cause regression, DDS told the court and that the court should not be swayed by impassioned pleas from family.

Findley: It’s inhumane, just absolutely inhumane.

Judson: Information about her son is impossible to get.

Findley: I’m like, did he get my card? Oh, you have to ask the conservator.

Judson: Which is a multi-billion dollar state agency. You have to ask them if your son got his Christmas card?

Deborah says Andrew wants to come home. DDS says this is truly what’s best for him.

Now, unlike part one of our investigation, not all of the confidential court documents were accessible for this very complex case, but it gives us a window into a broken system keeping families apart.

We wondered how is it that a massive state agency can even serve as conservator over a single person with very specific needs.

We asked attorney Tom Coleman who founded the Spectrum Institute, a human rights nonprofit  organization.

Tom Coleman: The law permits the director of the Department of Developmental Services to be appointed as a conservator.

This is ridiculous.

Someone who’s running a billion dollar department with hundreds, if not thousands of employees, that person is going to be conservator of an individual and look  after their needs and care for them?

It is a farce.

Judson: DDS often becomes conservator by way of their regional centers.

Findley: Tri-county’s regional center nominated DDS to be conservator.

Judson: Deborah believes this is a conflict of interest because when a regional center nominates DDS as conservator and it’s granted, the responsibilities of conservator as returned to the regional center, funded by DDS.

Findley: DDS is the funding agent. They have full control over how that money is spent.

Judson: What’s also funded by DDS are the care facilities where 86 percent of those conserved by DDS live as of July 2022, like Andrew, as well as Garth who we introduced in part one of our investigation.

This is the facility in Lompoc, California where Andrew lives, Deborah says.

While she now knows where he is, she’s not allowed to visit.

Findley: Prisoners, they get visitors. My child’s not allowed any of that.

Judson: These conservatees care homes as well as care giving expenses as all paid for by taxpayers, yet a June 2022 audit found these facilities are not being properly monitored by DDS or regional centers as state law requires, including medication wasn’t being properly distributed in some—a life threatening issue.

This care is all part of the 12 billion dollar budget DDS has, including the ongoing legal battles to keep conservatorships in place.

Findley: The attorney general represents DDS. So there’s the attorney, there’s DDS’s lawyers, there’s tri-county’s regional center’s lawyers.

Judson: One of those is Andrew’s own court appointed attorney.

The court approved he be paid over $13,000 by taxpayers for about 20 days of work, and he’s just one of the many attorneys involved. Others came from the California attorney general’s office.

Findley: The assistant attorney general, the two of them. Talk about a waste of taxpayer dollars.

Judson: As a state agency in a court of law, the Department of Developmental Services is represented by California’s attorney general.

Findley: It was daunting to be in court with the attorney general.

Judson: In cases like Deborah’s, they represent DDS to defend the conservatorship. Coleman finds this hugely problematic.

Coleman: Because the attorney general of California is the chief law enforcement officer of the state, including civil rights laws.

The State Department of Justice has a civil rights protection division.

Judson: Protecting and promoting the civil rights of all people in California is this division’s job, their website says.

Coleman: So the attorney general can intervene when the civil rights of people are being violated.

What if the violator is a state entity, like the Department of Developmental Services?

Then the attorney general has a choice. You can’t a prosecutor and a defense attorney at the same time, right? It’s a conflict of interest.

Judson: We reached out to the attorney general’s office. They said they won’t go against state agencies they represent, one being the Department of Developmental Services. 

To fight a conservatorship, besides spending thousands of dollars for your own attorney, where can you go for help if you’re in a position like Deborah?

Well, under federal law, Disability Rights California is required to protect the rights of those with disabilities.

Findley: Every time I’ve reached out to them, I’ve just been told that they only will communicate with the client, and that my son has to call them and ask them for help.

Judson: It’s an organization that represents people with disabilities, and people with disabilities often can’t communicate the same way that you and I are, and they’re saying he has to call?

Findley: Yeah.

Judson: Disability Rights California has a branch called OCRA, standing for Office of Clients’ Rights Advocacy.

Coleman: This agency is supposed to protect the civil rights of Regional Center clients.

Judson: But Coleman says OCRA is not helping those conserved.

Coleman: As soon as they hear there’s a conservatorship involved, they’re nowhere to be found.

Judson: And guess who OCRA is funded by? The Department of Developmental services.

Coleman: I’ve reviewed their funding; I’ve reviewed their contracts with DDS. They have the authority, they have the funding; they have a moral duty.

Judson: So we asked Disability Rights, OCRA manager about this.

Shannon Cogan, OCRA manager: I think it’s really easy to criticize who are doing hard work, instead of collaborating with them.

Judson: She said with conservatorships, they mainly provide alternatives. Their policy is not to help people obtain a conservatorship.

Cogan: We don’t have a mandate to file lawsuits or administrative complaints about anything related to conservatorship. We do a lot of good work for people who might be impacted by conservatorship.

Coleman: They nibble around the edges.

You are a law firm. You are a civil rights enforcement legal entity.

Judson: OCRA’s own website says that they provide legal advice and representation to clients of Regional Centers, where conservatorships often begin.

So we asked if they take on cases to fight conservatorships.

Cogan: Not OCRA. That’s one of the other branches of the tree.

Judson: For months we asked OCRA for specifics on how many conservatorship cases this other disability rights branch represented.

They never gave us that data.

As for getting involved after a conservatorship happens, Cogan validated Deborah’s experience:

A client must give consent, so Andrew, rather than his mother. But a parent calling could spark action. 

Cogan: Certainly if it’s an issue of extreme rights deprivation, health or safety, we send our employees to that person to interact with them.

Judson: Tom and Deborah say it’s not enough.

Coleman: I’ve had so many people say I’ve gone to Disability Rights California; they won’t do anything, they won’t do anything.

Judson: Specifically for Deborah, it seems like a never-ending loop of conflicts of interest.

The Regional Center, funded by DDS, recommended DDS be the conservator. They Regional Center then got conservatorship duties and placed her son with a care facility, funded by DDS.

She then went to OCRA of Disability Rights California to ask for help, an agency also funded by DDS.

But Disability Right California says their funding would not stop them from representing someone conserved by DDS, like Andrew.

Cogan: We have clients who are conserved by DDS. There’s no inherent conflict, and we do it.

Judson: Before our investigation aired we sent DDS this: a three page letter outlining our investigation’s findings with 15 specific questions, including about conflicts of interest. 

Now they didn’t answer any of our questions, but they did send us a written statement as well as a video of their director, Nancy Bargmann, reading that statement.

Bargmann video clip: We are constantly looking to improve how we serve the whole person.

Judson:  We decided not to air it in full as they did not allow us to interview them or ask our own questions.

We took our questions about DDS’s budget to Amy Wessling, the executive director of the Association of Regional Center Agencies.

Amy Wessling: We are the association that represents all 21 of the state’s Regional Centers.

Judson: She knows DDS’s multi-billion dollar budget in and out.

Wessling: And then this tells you where the money comes from.

Judson: In addition to fully understanding the budget, we were curious if DDS has an incentive financially to conserve people. Amy doesn’t believe so.

Wessling: DDS doesn’t get additional funds from conserving people.

Judson:  But no matter how you look at it, taxpayers are funding DDS conserving people. …Parents like Deborah continue to lose hope.

Findley: Every time I have a call or a visit, I’m scared it’s the last one, that I won’t ever see my son again. It’s just not a way to live.

Judson: Since our interview, Deborah’s virtual visitation time has been “paused.”  Her long legal fight with the Department of Developmental Services will continue in October when the court will determine if DDS’s conservatorship becomes permanent.

Deborah has no idea if she’ll see her son again.

But the Department of Developmental Services isn’t just responsible for the 414 people they’re conservator to. This 12 billion dollar agency’s main duty, by law, is to help ensure 400,000 plus Californians with disabilities have equal rights.

But there’s concern and evidence that they’re not doing their job.

CLIP: DDS and their Regional Centers aren’t really doing a good job of monitoring the quality of those services.

Judson: Even from California’s in-house watchdog

CLIP: We’re finding that they’re just not doing a very good job.

Judson:  That’s next on The Price of Care.

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