Self-determination and abuse of emergency regulations

One Step Step Forward - Two Steps Back

Self Determination for People with Developmental Disabilities and the Abuse of Emergency Regulations Proposed by the Governor: Who Is Determining What For Who?

It is a a peculiar trend with the Schwarzenegger Administration where one step forward in advancing rights for people with developmental and other disabilities and seniors seems to be always accompanied by two steps back down the proverbial slippery slope that reduces funding and takes away rights.

And so it is with the Governor's proposal that would have the impact of rolling back In-Home Supportive Services worker wages to the State minimum wage of $6.75 an hour.  And so it is with the Governor's proposal that would withhold both the federal and state cost of living increases scheduled for January 2006 for grants to the lowest seniors and people with developmental and other disabilities, including people with traumatic brain and other injuries. And so it is with the Governor's support of a ballot initiative for the November 2005 special election that would fundamentally change the State Constitution by giving the Governor extraordinary powers to cut spending that could have the impact of suspending important rights and laws for people with disabilities all without Legislature approval.

It hardly matters that a person or idea might be well intended when people with disabilities and seniors  are being pushed down that slippery slope.  A person might thank them later for their good intentions - but really, it is more important to stop from being pushed down that slope.

One step forward is that the Schwarzenegger Administration seems to be embracing the concept of "self determination" which uses the nationwide guiding principle that a person with disabilities has the right to determine their own needs in terms of services or supports.  Pilot programs in five different regional centers involving about 130 or so people with developmental disabilities over the past several years have tried out different models of the "self determination" concept.  The Schwarzenegger Administration says its "Self Directed Services" proposal, presented as a "cost containment" measure in the Governor's budget,  will "fundamentally change" the way community-based services are delivered to children and adults with developmental disabilities.  The Schwarzenegger Administration, with some justification, says the concept for the proposed program is a progressive step forward.  They have rightfully claimed other steps forward - including innovative community-based closure and transition plan for Agnews Developmental Center, the outreach last year (though not the actual proposals) in getting community involvement on Medi-Cal Redesign, and the willingness of the Department of Developmental Services - especially Julia Mullen, a deputy director there - to be open, available and candid with people regarding the Governor's "Self Directed Services" proposal.  That of course doesn't mean there are not some troubling aspects of that proposal as proposed by the Governor.

Any proposal that truly moves California closer to what self determination is really all about could be an enormous step forward that brings cost effective innovation on how community-based services and supports are delivered to thousands of Californians with developmental disabilities. It could help regional centers and community-based providers be better and more effective in other ways.  It could mean a future that has more choices and possibly less barriers for thousands of families who have children with autism or other developmental disabilities. It could be a model of how community services and supports can be made available to thousands of other people with other disabilities who don't receive regional center services. It could do a great deal in protecting the rights of people with disabilities.   It could mean a great deal of good things - but only if it is done right.  Like the American flag and apple pie in this country, self determination is a concept that almost  no one is against and almost everyone is for.  Using the right two words to describe a proposal however doesn't necessarily mean those two words actually implement it.

Much of what can be done right will depend on the passage of Sen. Wes Chesbro's legislative language (replacing the Governor's) to implement the program.  Much of the program will be determined in details in department regulations (that would, under the Chesbro legislation, be issued through the normal regulatory process allowing for full public disclosure and comments before it is implemented).  Less noted, but just as important to the success of this proposed program is the growing impact of the massive cuts to regional centers and other areas of health and human services passed over the past several years that has seriously weakened the community services and supports. That too needs to be addressed if this proposed program will work and does so without reducing civil rights under the Lanterman Act.  The continuing and on-going cuts to regional center funded community-based services and supports at every level has also seriously undermined efforts for the State to comply with the 1999 US Supreme Court Olmstead Decision that required states to take steps to prevent the unnecessary segregation and institutionalization of people with disabilities and seniors.

One step forward, two steps back.

The Governor's proposal differs from the traditional concepts of self determination and is different from any of those five pilots, with one exception - both are voluntary. The Governor's new "Self Directed Services" proposal in a nutshell would - in exchange for a limited or capped individualized yearly budget - allow a person with developmental disabilities to choose (or determine)  their own  services or supports, with certain restrictions (one being that the person cannot choose a "congregate" program (like a work activity or day program).  A special emergency fund - called a "risk pool" would be set up for people in the"Self Directed Services" program to tap into, under certain restrictions and conditions, should emergencies or unforeseen events happen.

In a series of CDCAN townhall telemeetings held since December, hundreds of people with developmental and other disabilities, families, workers, advocates, community-based organizations, regional centers, area boards on developmental disabilities, and others received information directly from Schwarzenegger Administration officials.  Many people raised concerns and asked questions about the cap on individual budgets, with some feeling that such a cap could undermine or even replace the Lanterman Act.  Others contend that as long as the program is voluntary then it simply represents another option and choice. Other issues raised durng these telemeetings, included  the  special authority to issue emergency rules, the capped budgets and how it would developed, concerns about reducing rights under the Lanterman Act, concerns about losing due process and fair hearing rights, and the issue of a person's right to choose their own services and supports without a prohibition of selecting a "congregate" program were mentioned time and time again.  People with disabilities and their families, workers and others want their rights protected - including the right to participate in the public policy process that the emergency rule provision that the Governor wants would eliminate.

One step forward - two steps back.

Depending on the details - this could be potentially a good program and a good option for people.  Depending on the details - it could also end up being a bad one.  That is why Sen. Chesbro's bill - as approved by the Budget Conference Committee last week, is critical.  But it doesn't stop there.

And now the two steps backward.

1. First, there is the November 2005 special election ballot initiative that would make dramatic changes in the Governor's power to cut spending without approval from the Legislature that could  have the impact of undermining or even suspending the Lanterman Developmental Disabilities Services Act - the civil rights act in California for children and adults with developmental disabilities - that initiative alone.  This is one of three ballot initiatives which the Governor supports and arguably represents a huge step backward impacting the rights of people with disabilities and seniors.
2. Second, the Governor also seeks special authority from the Legislature, for his proposed "Self Directed Services" program to issue emergency regulations (even if there is no real emergency)  that will contain the details of how the program will actually be implemented. Using emergency rules with the special authority to do so even if there is no emergency, is a  process that completely avoids public scrutiny and comments because it takes effect immediately. Under this special authority, the public can comment only after the emergency regulation is already in effect. (note: state departments and the Governor already have the authority to issue emergency regulations for real emergencies - but the reasons must be reviewed by another state agency before it goes into effect, giving up to10 days for the public to comment - assuming they were lucky enough to find out about it.  The special authority however would eliminate that specific review and allow no time for the public to comment before it went into effect).
3. Advocates call this a "misuse" and  "abuse" of the emergency regulatory process -  though the Schwarzenegger Administration claims there is no sinister reasons behind the proposed provision.  The Schwarzenegger Administration says the special authority to use emergency regulations is a power granted previously in other budget related issues in order to achieve maximum savings of State money in the budget year or to obtain more federal matching funds - or a combination of both.  This includes recent budget issues impacting Medi-Cal estate recovery (the subject of a huge outpouring of protests and a lawsuit over the use of emergency regulations), In-Home Supportive Services, other regional center cuts or changes. The Schwarzenegger Administration also says that it supports the Lanterman Act - as it says it supports the Olmstead Decision - and that the "self directed services" proposal  will not harm the rights of people with developmental disabilities.

Except for one important fact: it violates the right of a Californian to participate in public policy - a basic and important civil right.  It is ironic that the Schwarzenegger Administration would push a policy change that claims to advance a person with developmental disabilities' right to determine their own future - and at the same time take away their right to review, comment and participate on that future. It is ironic that the Governor would push for this special authority to issue emergency regulations - by passing the people - and yet places initiatives on the ballot or calls special elections because he wants to take the issues to the people.  And there is no significant amounts of funds to be saved or matched during the first year of the "Self Directed Services" program that using the normal regulatory process would harm.  A proposal to the federal government could still be submitted before regulations are issued or finalized (regulations have yet to be issued for the IHSS Independence Plus Waiver that provides new federal funds for the IHSS "residual program" effective as of August 2004.)

One step forward - two steps back.

Like the right to vote, the right to participate in the public policy process is a right that no one can give up for another person.  And it is something for disability advocates to remember: that we must defend and protect not only the Americans with Disabilities Act, and not only the Lanterman Act - but other important rights as well . And we must do so even if it means filing a lawsuit or launching a boycott of the "Self Directed Services" program itself if the right to participate in the public policy process is eliminated through emergency rules.

Inclusion and self determination become hollow empty words if a proposal - like the Governor's "Self Directed Services" proposal  - seeks special authority to issue emergency regulations that by-passes public scrutiny and comments.

Inclusion doesn't mean only lobbyists and other representatives at the proverbial table in Sacramento.  "Self Determination" isn't a principle that allows other people to decide things for other people because the public policy process is somehow twisted to exclude them. Thousands of people would be excluded from participating in the public policy process under the Governor's legislative language to implement "Self Directed Services" (that version is promoted by the Department of Developmental Services on their website - the latest version is also on the CDCAN website). That is exclusion at its worst and the complete opposite of what self determination means.  We will simply not allow that to happen.

Here are some steps to help bring the "Self Directed Services" proposal forward that hundreds of people across the State have raised in a series of CDCAN townhall telemeetings since December:

• Chesbro legislation - Support the legislation authored by Sen. Chesbro (that replaces the Schwarzenegger Administration's legislative language) as approved by the Budget Conference Committee last week.  That bill is currently SB 481, but the bill number and where it is in the legislative process (versus the budget related process) could change depending on what the Legislature does on the budget in the coming weeks.
• No Special Emergency Regulatory Authority - No special authority that allows the Schwarzenegger Administration to issue "emergency regulations" (even when no emergency exists) to implement the details of the program.  The Chesbro legislative language does NOT give the Governor this special authority.  We will fight this abuse in other departments, including Department of Health Services (Medi-Cal) and Social Services (including IHSS).
• Freedom to choose appropriate community-based services and supports - with only restrictions due to federal or state laws.  If this proposal really is about "self determination" then it needs to be implemented in a way that practices it.  Prohibiting a person's choice to select a day program or work activity program because the Department of Developmental Services has "philosophical reasons" for that prohibition is not self determination.  It is the same old way of doing things.  This key element of self determination needs to be included in the Chesbro legislation or in any legislation that implements "Self Directed Services". The prohibition needs to be removed.  It is also simply not necessary.  In the five pilot self determination programs in California - the great majority of people did not choose "congregate" programs and there was no prohibition to do so because none was needed.  Why is the Schwarzenegger Administration ignoring this data from the pilots? The reason given by the Schwarzenegger Administration strikes many advocates as the complete opposite of self determination - and in fact, promotes the type of control and direction that is simply more of the same old way - and will make the program far less effective, far less innovative and far less successful.   The Schwarzenegger Administration and even some advocates defend this prohibition also because they say the program is voluntary - and that people can choose to remain in existing way that they receive regional center services, and therefore doesn't violate anyone's rights.  But the fact that the program is "voluntary" is no defense to its shortcomings and is not an adequate response to concerns raised. Many of these same advocates - and the Department of Developmental Services will say that an institutional setting - even if "voluntarily" chosen by a person with disabilities - is almost always wrong and violates their rights - and the rights of others.  I am not a proponent of institutionalization - but I am also not a proponent that excuses bad policy simply because its "voluntary" in a community-based proposal.  So the concerns raised - including due process and fair hearing rights; freedom to choose, cannot be excused because the program is "voluntary".
• Due Process and Fair Hearing Rights - both the Schwarzenegger Administration language and the current Chesbro legislation would keep all of the due process and fair hearing rights intact, with one exception: the mathematical calculations of an individual budget.  Any question raised on that specific issue would use a different process that ends with a final decision by the director of the Department of Developmental Services - similar to the process used under the controversial parental (or family) share of cost program (also known as "parental copayment" or "family participation" program).  Many advocates opposed that too.

In nearly all the townhall telemeetings - many people raised the issue of making any change to due process and fair hearing rights as a major concern.  Why is the Schwarzenegger Administration pushing for such a change?

In exchange for a capped budget , one of the assurances must be trust and credibility in the State that implements the program.  That is hardly achieved when a change to due process and fair hearing rights - even if "minor" and also special authority to issue emergency regulations (even if there is no emergency) to implement the critical details of the program, are proposed by the State.  The Department of Developmental Services - a part of the Schwarzenegger Administration - says the change in due process and fair hearing rights was being proposed for this program because it is simply a "black and white" issue - simply a mathematical calculation is either right or wrong.

Interesting concept, except that due process and fair hearing rights have nothing to do with whether the issue is black or white or easy to resolve.  It is there to protect a person's rights - not to shield the State from its responsibilities no matter how small. Making this change only promotes distrust - not innovation or a step forward. This change in due process and fair hearing needs to be removed from the legislation that would implement the "Self Directed Services" program. We must never let due process or hearing rights be taken away - ever.

One step forward - two steps back.

We're not going to be pushed down that slippery slope.

HOW YOU CAN HELP

• Particpate in the next CDCAN Townhall Telemeeting scheduled for JUNE 24 (rescheduled from June 17) at 11:00 AM to 1:00 PM, Friday.  Part of that townhall will focus on the Self Directed Services program and Sen. Chesbro's legislation to implement it (instead of the Governor's)
• Participate in special CDCAN Townhall Telemeetings scheduled for July 7 and 8 (Thursday and Friday) featuring particpants in the five self determination pilot programs, and also Julia Mullen from the Department of Developmental Services.
• Write to Sen. Wes Chesbro urging that these concerns not addressed in his bill (currently SB 481), be addressed and included.

Send your letter to:

Sen. Wes Chesbro
State Capitol
Sacramento, CA 95814

Mail your letter or FAX it as soon as possible:  (916)-323-6958