Am I Self Determined yet in the State of California?
Am I Self Determined yet in the State of California? (scroll to the end for action steps and contacts)
7/3/23 – opposition testimony public comment
My name is Henny Kupferstein. I have a unique agenda to represent the consumer voice through user research, to inform policy.
My testimony is intended to put the committee on notice that we the consumers have indeed registered opposition, even though it isn’t reflected in your bill analysis today.
This bill proposes the use of state monies to implement accountability reporting measures through the use of stakeholder committees. This bill is flawed in its misappropriation, and lacks the infrastructure on how to include the consumer’s voice in these mandates.
NY services millions of consumers in their self direction program, and they operate with less than 1 billion a year. California has yet to serve ½ million consumers with 15-billion in their budget.
Keep in mind that Regional Centers are non for profit organizations exempt from state governance. Accountability and reporting measures have never resulted in greater purchase of services. We the consumers have not received our fair allocation of these funds through the program rules.
We don’t need to spend more money on the stakeholder committee to enforce reporting measures; nonprofits already post this public data in federal compliance per the IRS rule. The burden of this analysis falls on Ryan Anderson, Principal Fiscal & Policy Analyst, Legislative Analyst’s Office to audit the 990 reporting against the governor’s intention to bring Self Determination to the consumers. If there is less than 5% in allocations to POS, we the consumers must be prioritized in your next vote.
We know this from the public domain data that nonprofits must post. A review of the IRS form 990 shows how any specific regional center who receives about 2-billion, will report less than 5% expenditures on purchase of services, while their net assets at the end of their fiscal year increased, on account of stock market investments and real estate income.
Taking state money to force guidelines and governance onto a non profit is a decoy measure aimed at distracting the senators of the racketeering that is being promoted by disability voices united, a parent group that poses as the consumer’s voice, but indeed does not provide 1:1 consumer support, advocacy, or representation. They engage in tokenism by bringing 1 or 2 consumers in their committees, and propose in this bill to continue to tokenize consumers further to push their agenda.
Your analysis in front of you has censored our registered opposition, again displaying how we the consumers are not considered in policy, and your vote today must ensure there is nothing about us without us.
While it is too late for the assembly to modify the language per our request to be inclusive of consumer needs, it is not too late to kick this back to the assembly.
—
In my opposition, I attached legislative language to make this bill inclusive of consumer needs. I also attached to your office a proposal for Communication Support, an initiative that is modeled on NY’s effective self direction program. Where in NY, millions of consumers are served for under 1 bullion, California services allegedly less than ½ million, and requires at least 15-billion dollars to do so. We the consumers have not received our fair allocation of these funds through the program rules.
On June 1st, we requested that Assembymember Addis revise the bill language, and on June 9th, I met with the Analysts for DVU, the sponsors of this bill
With David Panush and Curt Child, I raised the opposition to the bill, as it does not contain protection and advocacy measures for the consumers of the self determination program. We discussed how the stakeholder “mommies” are clawing their way through the racketeering to keep their contracts in place.
On June 9th, I met with Ryan Anderson before the budget for DDS was passed. In his February 15, 2023 Brief pertaining to the 2023-24 Budget for Department of Developmental Services, https://lao.ca.gov/Publications/Report/4683 there is a major gap in the reporting to the Governor on what the consumer’s needs are in SDP.
- For example, Ryan has not reviewed the regional center’s IRS tax form 990 to see how the expenditures of each regional center are reported. Policy must be informed by the expenditure reports of these non profits, and that is public domain data that must be analyzed by your public servants, not paid to committees to enforce regional center’s ad hoc reporting measures.
- With Ryan in the meeting, we reviewed the 990 of the regional center that i am an assigned consumer to, and recognized that less than 5% of their 2-billion of state funds was reported as purchase of services expenditure, while their net assets at the end of their fiscal year increased, on account of stock market investments and real estate income.
Am I self Determined Yet?
If the consumer is burdened with additional communication with their social worker just for the regional center to have adequate reporting measures, we the consumers will again suffer the consequences of breakdown in communication and discontinuation of program funding. While I was the first person to start the SDP on the hard rollout, I was also the first person to be stranded without self determination since March, without recourse or due process.
Given that Diana has failed to analyze the opposition for today’s hearing, it is imperative that the committee reschedule a hearing that analyzes the citizen’s opposition. So long as consumer opposition is not contained in the analysis, we the people cannot be represented by your vote today. To encourage a democracy, we must prioritize consumer needs in legislation.
Letter to Assembly member Addis, June 1st
From: Henny Kupferstein henny@hennyk.com
Date: Thu, Jun 1, 2023 at 12:09 PM
Subject: Assembly Bill 1147
To: julie.cravotto@asm.ca.gov, assemblymember.addis@assembly.ca.gov
Cc: DDS SDP sdp@dds.ca.gov, SDP.Ombudsperson@dds.ca.gov
Attn Assemblymember Addis
CC: Legislative Director
My name is Henny Kupferstein (f, 45, San Diego). I am an autistic consumer with SDRC. I am also an experienced policy analyst. I have a unique agenda to represent the consumer voice through user research, to inform policy.
Please read this proposal:
Autistic Communication Support – 5 year Outcome Report (2014-2019)
Regarding A.1147, we are requesting an additional protection in place, an amendment for the Senate vote.
- The Regional Center must include an ADA statement on an IPP to indicate how they agree to accommodate what is reasonable in consumer communications.
- The Regional Center vendors (such as an FMS) must consider an ADA+DEI policy on their website and correspondence, and further, shall not discriminate or turn away a consumer from FMS services without oversight on their action. I have a personal testimony about Cambrian’s improprieties, where they agreed to provide reasonable accommodations to me, but then started bullying me 3 months into our POS. This resulted in a ‘notice letter’ where they informed me that they have terminated me as their client, citing multiple concerns that are 100% discrimination on my disability. If an FMS is not prepared to do business with ADA compliance, they should not be vendored. They must make their services accessible to all consumers (blind, deaf, learning disabled), and they have refused so far, despite ADA being a requirement in the Lanterman Act.
- A default Budget service code for SDP and Traditional consumers with Regional Centers, namely “communication support” to ensure the safety of the consumer who does not have family or friends, but is unable to communicate effectively to acquire services and supports. This would streamline communication problems with service coordinators, fms vendors, and can be funded by the Regional Center from their surplus monies. I have approximated that the $18-million that it would cost, would significantly reduce the wasteful misappropriation for IFs, Advocates (who are often charging legal fees), and Protection & Advocacy which has never been able to assist the consumer need, based on their reports.
Adding “Communication Support” funds to every consumer’s IPP will put you on the map as the Hero who has transformed the DDS rollout of the $15-billion, that never makes it to the consumer. You would be replicating legislative language directly from the State of New York, where my legislative action has resulted in the authoring of 5 bills, which have passed into law. We need citizen action to be prioritized, (and professionally contracted with) in lieu of ineffective committees and stakeholders, who meet and convene and talk about us without us, and reject our nominations to serve.
I have a good perspective to predict bipartisan legislation, and a good rapport with the subcommittee to promote “Communication Support” in the spirit of ADA/DEI for DDS consumers. Sincerely,
Henny Kupferstein, Ph.D.
Hennyk.com & Doogri Institute
Qualified expert on informed consent for nonspeaking, ASL, and AAC users ∞
Author of the AGP Model AbleGrounded.com
AAC lessons | piano lessons |Peer Mentorship | College Readiness | Person Centered Planning
Contact list for the Senate Committee on Health and Human Services, updated June 23, 2023
(1) the Senate Committee on Human Services
Call 916.319.2089
email Diana.Dominguez@sen.ca.gov, is the analyst for the Chair for this bill.
5 Senators who are Members in the Committee:
(916) 651-4004
leave a message
https://sr23.senate.ca.gov/my-offices
“Joel” at capitol office (916) 651-4023
Scheduler is Emily Dewolf / emily.dewolfe@sen.ca.gov
Erica – personal policy adviser on human services erica.harnik@sen.ca.gov
https://sd16.senate.ca.gov/legislative-priorities
(916) 651-4016
Aaron Brieno, Chief of Staff – Aaron.Brieno@Sen.Ca.Gov
Marisol Ibarra, Legislative Director – Marisol.Ibarra@Sen.Ca.Gov
https://sd20.senate.ca.gov/contact
(916) 651-4020
Kimberly.fuentes@sen.ca.gov Policy committee for Human Services – policy
Is not at her desk right now. Best way is to email her.
To request a meeting with the senator,
Scheduler, should be in monday morning.
(916) 651-4410 “Ross” answers the phone.
Leg Dire (also Leg staffer) megan.mekelburg@sen.ca.gov
Scheduler for the senator: ruscal.cayangyang@sen.ca.gov
How does the Governor learn about the Consumer’s experience with DDS and the Lanterman Act?
They don’t. The California Government does not collect data from consumers, and specifically “we do not conduct scientific research”. As a result, every report prepared for the Governor is lacking the contingency in its entirety — we the people. The person has “DDS” in his portfolio is new since January, but will hear you out.
Ryan Anderson
Principal Fiscal & Policy Analyst
Legislative Analyst’s Office
office: (916) 319-8308
- Read Ryan’s Budget report to the Governor for 2023-2024.
- Ask Ryan to investigate and report about the Regional Center’s reported expenditures after each tax year. In their form 990, we know that less than 5% if allocated to POS (Purchase of Services), while the “IPP Services” is what they have been tasked with, but are actually turning a profit.
- Let’s say your Regional Center got $2-billion, and they have $2.4 billion net assets at the end of the year, shouldn’t we the consumers be assured that the Governor’s report includes misappropriations, such as real estate income and stock market investments?
Disability Voices United and their Policy Men (who sponsored A.1147)
David Panush
(lobbyist who is hired by DVU for this Bill, in Partnership with Curt Child <curtchild@yahoo.com>)
President
California Health Policy Strategies, LLC
916.842.0715
Henny –
I will share this with our team, but the proposal in your letter is more than a revision. At this stage in the process, we have been narrowing the bill to address concerns and cost issues. Now that the bill is in the second house for consideration, we are also mindful that the administration’s support will also be needed to get our proposal over the finish line.
We know there are many additional issues that could be included, but the proposal in AB 1147 reflects our top priorities at this time. We appreciate your opposition and respect your right to do so. Perhaps we can collaborate on future legislation that your organization sponsors.
– David
Henny Kupferstein 