Free Disabled Adults: Taken


Were disabled adults included?
“No taxation without representation”.
“Nothing About Us Without Us”

What’s in the news?

September 15, 2022.
How do we fix California’s broken conservatorship system?
by KXTV-TV Sacramento, California, Tegna.

What’s the story?

Maria Bergum was in a conservatorship from ages 21 to 36. She described to ABC 10 Sacramento that she was trapped. She told ABC 10 that her father the conservator was controlling, calling her as what she described as a “disability daughter”, where she had to get permission for normal activities, including leaving the house and seeing friends. She got the conservatorship because of a brain injury and a developmental disability, requiring “adult guidance” for decisions. Maria’s father declined an on camera interview. She told KXTV that she couldn’t have a job or be responsible for finances, cook, or ride the bus alone.

She found a self-advocacy group, which the web version of the story placed in quotes, and called them discreetly, and then got in touch with a conservatorship expert. This expert said most attorneys won’t take cases due to conflict of interest because they set up conservatorships.

Eventually, she got an assessment, which she didn’t get because of her general conservatorship, which are more restrictive, removing ALL CIVIL RIGHTS (my capitalization). The assessment was done by a regional center operated by the California Department of Developmental Services

Regional Centers are state-funded facilities under the Department of Developmental Services. In limited conservatorships – or conservatorships for those with disabilities – a regional center service coordinator must write an “assessment” or evaluation of the person being conserved. This assessment is submitted to the court for the judge to review before appointing a conservatorship.

After the assessment, she decided to get out of it, which is difficult. She got a public defender, who spoke to the conservator and the judge, not her. She eventually got a supported decision making team. Her advocate mentioned that everybody does supported decision making, but the term is applied to the disabled. For example, people seeking advice from the car mechanic or doctor to make a decision is in fact using supported decision making, disabled or not.

AB 1663 is a reform bill, which the assembly member who proposed it describes it as a human rights bill, and is a result of the Free Britney movement.

Among the proposed changes are supported decision making and requiring California probate courts prove that it is truly the last resort, which are not considered in the system. It would also make them easier to terminate, and to uphold the conserved person’s desires. It was introduced in January 2022. If the Governor signs it, it will go into effect January 1, 2023.

The Price of Care: Taken by the State, an investigative series by KXTV caused DDS to announce steps to be more accountable. One family is not sold on DDS’ promises to change, or the bill itself.

Maria eventually got into a “limited conservatorship”, which she says it is not limited at all. She won the right to choose the conservator, and has to wait a year to try again to end it. Other than that, nothing actually changed.

Were disabled adults included in the story?

YES. This format is used:
1. A disabled person tells their story.
2. Several experts discuss the reason for the story.
3. The disabled person finishes the story.
This format is used in other contexts. A disability rights advocate was not described as disabled, and the organization mentioned Disability Voices United is described as being run by disabled people and their families in the story.

On December 7, 2021, the only episode I produced featured seven stories and no commentary. As of this blog post, Free Disabled Adults now includes commentary.


Does it say inclusion?

Disability Voices United.

Located in Manhattan Beach, in Los Angeles County. Website copyrighted 2017-2021.

Let’s look at their board of directors.

President, Parent.
Vice President, Parent
Secretary, Sibling.
Treasurer, is actually autistic.

Other members are described as the following:

This board has 4 parents, 2 siblings, and 3 disabled people, who are described as Self-Advocate, except the Treasurer, is is described as “on the autism spectrum”

Three are disabled.
Six are not..

Support Without Courts is supported by:
ACLU California Action.
California Advocates for Nursing Home Reform.
California Community Living Network.
Disability Rights California.
Disability Rights Educational & Defense Fund.
Disability Voices United.
California State Council on Developmental Disabilities (state agency)

and the following:
Alzheimer’s Association.
Autism Society of Los Angeles.
California Foundation for Independent Living Centers.
California Community Living Network.
California Public Defenders Association.
California Senior Legislature.
CalTASH: California TASH.
Choice in Aging.
Club 21 Learning and Resource Center.
Consumer Attorneys of California.
Exceptional Rights Advocacy.
Integrated Community Collaborative.
Long Beach Gray Panthers.
PRAGNYA (Preparing Resources & Alliances Galvanizing Neurodiversity Acculturation).

California State Council on Developmental Disabilities (state agency) has the following breakdown of members:

Among the 60 percent of the council:

9 are Self-Advocates.
10 are Family Advocates.

The others are ex-oficio:
Secretary of California Health and Human Services Agency and it’s sub agencies:
1. California Department of Health Care Services.
2. California Department of Developmental Services.
3. California Department of Aging.
4. California Department of Rehabilitation.
California Superintendent of Public Instruction, which oversees the California Department of Education.

The following organizations are represented:
Disability Rights California.
UCLA Tarjan Center, which is the Center for Excellence at UCLA.
Non-Governmental Representative.
Center for Excellence, UC Davis
Center for Excellence, University of Southern California.

The Centers for Excellence are represented by M.D.’s.

Among the 40 percent of the council:
1 Agency and four of its Departments take 5 seats.
1 The Superintendent of Public Instruction takes 1 seat.
1 person represents a private non-profit.
1 person is not connected to government.
2 people represent the University of California, specifically in Davis and Los Angeles.
1 person represents University of Southern California, which is private.

11 are not advocates.
9 are self advocates.
10 are family advocates.

So 9 are disabled.
21 are not disabled.
The disabled make up 30 percent of this council.

This is based on a federal law passed in 2000, making it the first step in the right direction.

I should note that except for the director of the California Department of Health Care Services, all biographies are hidden by default on the page.

I should note that this is accurate as of September 15, 2022, and does not reflect past membership or future membership, which must include an increase of Self-Advocates.

Despite the requirement that 60 percent are required by federal law to be self-advocates and family advocates, the current membership is 30 percent disabled, and 70 percent non-disabled.

What needs to change?

1. Government agencies need to expand the voices of the disabled beyond current levels.
2. Transform the conservatorship system.