It’s About Hope – Again

A rally was planned first for December 5, 2003 (with just a week's time to organize) to bring people to a special Senate Budget Committee hearing on the Governor's proposals. Two days before it was postponed and then rescheduled for December 10, 2003 Monday morning. With five days notice we organized the rally bringing over 4,500 people including children to the North Steps of the Capitol. Those thousands came into the Capitol and packed the main hearing rooms, hallways and overflow hearing rooms and every other available space.

This commentary was written during that desperate time when things seemed pretty dark for many of us

When I wrote the commentary below, one sister – Alana, who had developmental disabilities, had passed away just months before - but my younger sister was still alive. A year later she was gone too – and so many other good friends and advocates. Natasha Littletree, Warren Mattingly, Noel Nuedeck, Jim Sanford, Betty Bacon, Shirley Klein, Bob Roberts, Joan Lee and so many others.

I think those losses weigh heavily on all of us who knew them – and it makes more difficult the fights each year (since late 2001) against spending cuts that we have been forced to wage – more desperate and seemingly futile. I think a lot of us feel more alone and feel a greater sense of despair and weariness.

Now, in the fall, winter of 2008 and January 2009, we are once again faced with an even worse budget crisis, with a massive deficit that threatens the ability of the State to even borrow money to pay its bills.

This time no one is claiming any of the proposed cuts will be temporary. It seems like a desperate time again.

The Governor proposed in his 2009-2010 budget – with more details to come, massive permanent spending cuts including those to health and human services – In-Home Supportive Services, SSI/SSP (Supplemental Security Income/State Supplemental Payment), regional centers, Medi-Cal, mental health, and more. The Governor did however also propose new revenues – unlike in previous budget years or in 2003 and in that respect, he has done better.

The Democratic budget deficit plan that was passed on December 18, 2008 (but vetoed by the Governor on January 7, 2009) also contained cuts – though less than what the Governor and Legislative Republicans proposed.

It may seem like a desperate time – and it is. And it may feel futile to fight. But it is not. We can get through this.
We need to mobilize as one community and fight with and for each other – not in the name of a program or service, but for the rights of our children and families and friends to have those services and supports – and for the rights of inclusion, choice and independence. For hope and for justice.

And so, as we have done before – as others have done before, we will need to let the Governor and Legislature know that we are here to speak for justice. And when we do that, we will always remember, that this struggle and our fight is always about hope. For all of us.

Marty Omoto

Please join our sidewalk protest on January 15, 2009 Thursday morning from 9:30 AM to 11:00 AM in front of the State Capitol, (L Street at 11th Street) to coincide with the Governor’s delivery of his annual “State of the State” address to be given Thursday morning.

IT'S ABOUT HOPE

By Marty Omoto (originally written and sent out December 1, 2003 – 5 years ago)

In the midst of approaching winter and continuing bad news on the California budget for people with developmental and other disabilities, it may seem that our efforts are more about fighting despair in a never ending losing struggle. It may seem that this is more about feelings of helplessness and panic for hundreds of thousands of families with children with disabilities.

It may seem that it's all about outrageous spending cuts harming California's most vulnerable children and adults. It may seem that it's just about still more terrible proposals eliminating needed services and programs like respite - or even suspending the landmark civil rights act for people with developmental disabilities - the Lanterman Developmental Disabilities Services Act, passed over three decades ago. But it is so much more than that. It's about a promise this state has made to people in California. And most important of all - it is about hope.

The Promise Long Delayed

It was a promise made not in the dead of night or made without lengthy legislative review. In fact it was a promise long delayed by decades of neglect by California and how it treated its children and adults with disabilities. It was a promise made in recognizing the rights that children and adults with developmental and other disabilities always had - but a recognition long delayed after decades of tragic indifference by the State.

And how was that promise made?

It was families and others who fought hard and long in their own communities in California. It was some who together, pushed and prodded a sometimes indifferent Legislature and Governor to finally recognize the rights of people with disabilities - and to get them to commit for the first time to keep the promise. It was also the media exposing the state's shameful neglect and indifference to people with developmental and other disabilities in state institutions. It was also a few Legislators and staff willing to take up the issue to force the state to recognize its moral and legal responsibilities. "We're here to speak for justice" as a parent said over 30 years ago.

As it was then - and as it always will be - it is about justice. We are here to speak for justice. And we are here to speak about hope.

A promise and rights are not a convenience. It is not something that is kept only in good times. It is not just an idealistic goal of good intentions which allows governors or others to break it in the name of "reality" and "hard choices".

It is not a hope for foolish people who somehow are not "savvy" or "sophisticated" enough to understand how policy in the State Capitol is made. It is not the fading false hope of people who are caught in lost causes.

This is the hope based on sometimes awful truths and harsh cold reality.

It is the hope and promise founded each time when parents are told that their son or daughter was born with a disability and not ever giving up.

It is the hope and promise that keeps a young teenage girl with a traumatic brain injury alive and a vibrant part of her community and a loving member of her family.

It is the hope and promise of families who struggle hard to keep together with IHSS (In-Home Supportive Services).

It is the hope and promise of families who are there for their children with special needs in school.

It is the hope and promise that inspires a woman with cerebral palsy and other disabilities to write beautiful poems that in turn inspires hundreds more.

It is the hope and promise of a direct care worker who continues on the job even though his pay has been cut and benefits reduced because of state budget cuts.

It is the hope and promise of a staff of volunteers and workers who work hard every day with people with disabilities and their families even when the future looks bleak - with layoffs and cutbacks looming.

Fiscal Restraint and Moral Responsibilities

And yet - in good budget times we are given excuses by the State not to fully support and fund the rights and promise made to people with disabilities and seniors. And in bad budget times we are lectured about "hard choices" - which always means our communities must take the brunt of cuts and reductions that others do not share.

We are told to face reality and accept cuts - while the State is allowed to forget commitment and reject a promise. This Governor talks of fiscal restraint as a higher purpose than moral responsibilities to children with disabilities and seniors. He talks of spending caps as if the needs of a child with disabilities can be met by those two simple words. His budget cuts remember, in short, everything but what is really important about California - our human treasure and values.

No good person - whether they are Republicans or Democrats or members of other parties would consciously support cutting off needed services for a child with autism, or an adult with cerebral palsy or a person with brain injuries Yet, that is what the Governor's proposals would do and worse.

Many had some hopes that this Governor would not propose harmful devastating cuts to people with disabilities - given his background working with children, and being connected to the Kennedy Family who have done so much to improve the lives of people with developmental and other disabilities. Governor Schwarzenegger's own mother-in-law, Eunice Kennedy Shriver was instrumental in making many of those changes for people with mental retardation. His father-in-law was the founding director of the Office of Economic Opportunity which declared "War on Poverty" and created community action agencies, Head Start and so many other valued programs. Schwarzenegger and Maria Shriver's uncle, Senator Edward Kennedy was key force behind the passage of the Americans With Disabilities Act.

So how could he propose budget cuts that would amount to a total reversal of all of that and more and harm so many thousands of children with disabilities, seniors, adults with disabilities and others? Perhaps he did not know. But there is no excuse now.

Connecting Numbers With People

To the Governor's number crunchers in the Department of Finance, it may seem that a caseload of people with disabilities who need services are numbers - to be frozen, cut or reduced based on a calendar date or cost.

Utilization is a "bad" word graphed only by an upwards red line and a red flag to be pushed down and reduced. It may seem correct to do so in the name of fiscal responsibility until one connects those lines and numbers to a baby named Zoe born with multiple severe disabilities; or look at the beautiful face of a young boy with autism named Kevin; or a man named Joseph in a wheelchair in need of housing; or connect those lines and numbers to a parent named Lacey in desperate need of respite services after taking care of her daughter with disabilities.

It may seem efficient to eliminate needed programs or reduce rates until one connects to a worker named Laurel whose salary has been reduced substantially with benefits being scaled back; or connects to community based organizations like UCP in San Diego and Sacramento and Los Angeles or Alpha Resource Center in Santa Barbara, or Elk Grove Adult Training Center in Elk Grove, or Arriba in San Gabriel Valley, or Arc San Diego, or Arc Solano, or Easter Seals in Los Angeles or the Regional Center of the East Bay, or Alta California Regional Center, Strategies Toward Empowering People and Training Toward Self Reliance in Sacramento - all desperately trying to cover widening shortfalls caused by lack of funding by the state and compounded by staggering increases in workers compensation increases.

They are there - as are hundreds of thousands of families, as are hundreds of thousands of people with disabilities, as are tens of thousands of workers and organizations and advocates because of hope.

The value to the State? The people. There isn't something yet to be proven that a difference has not been made to millions of people with disabilities over the past three decades in housing, in transportation, in employment, in prevention of crime and abuse, special education and community services. The investment is sound and proven. Like good education for California's children - the proof is there for the need for services for people with disabilities. Those needs are as important as the other priorities of the State. It is the "promise".

Too Many Promises Means Too Many Broken
The "promise". A friend of mine who has disabilities, said he was glad I referred to it as "the promise" and not the plural of "promises". He explained - that there are many things - the Lanterman Act, Americans With Disabilities Act, the Unruh Civil Rights Act, the Olmstead Decision, Individuals With Disabilities Education Act that all keep the "promise" for people with disabilities. Too many promises he said, means too many have been broken. He's right.

This is about the "promise" to people with disabilities. It is about hope of millions of people on SSI/SSP (Supplemental Security Income/State Supplemental Payment)., Medi-Cal, in special education, early intervention, community based programs and services, in In-Home Supportive Services and so many other needed programs. It is about the needs of millions of people who are autistic, who have mental retardation, who have physical disabilities, who are blind, deaf, who have brain injuries, who have special needs in education, or independent living.

This is as realistic as it gets. The communities of people with disabilities make hard choices each and every day - sometimes making the difference between someone living and not. Policy makers and the Governor must know that that they will not embarrass or cow us into giving up something - the "promise" - that they should not take.

Shame on those in the Schwarzenegger Administration for making these proposals. The Administration and the Legislature must remember the promise that California has made - and remember the legacy of both Republican and Democratic presidents and governors in advancing the rights of ADA, the Lanterman Act and other civil rights for people with disabilities.

Does this mean we are taking a position that there can never be cuts or reductions - never be room for efficiencies?

In fact, the "promise" is all about questioning, advancing change and to seek improvements.

Consider the spread and variety of community based services for people with disabilities that did not exist 30 years ago.
Consider the self determination programs for people with developmental disabilities that allow them to choose who and how their services are provided.

Consider the Lanterman Act and the original purpose of regional centers - which was all about changing the status quo and challenging the state to make change.

Consider that there have been many efforts to reform the systems that serve people with disabilities, to create efficiencies - alternatives for delivery of services for people with developmental disabilities for instance - which remain shelved after years of effort - a "hard choice" the state made.

Let's also remember the "hard choices" the Governor (including the previous one) and other policy makers had to make.

Hard Choices and Reality [Note: remember that this commentary was written originally in December 2003 and reflects the proposed cuts 5 years ago then]

The hard choice for the Governor is not to tell us that we have no choice or that there are no other options. We know there are other options and other hard choices that can be made but sometimes it doesn't seem that way:

* Hard choices like choosing between cutting work activity and supported employment programs for people with developmental disabilities and cutting SSI/SSP(Supplemental Security Income/State Supplemental Payment) or at the same time, appropriating $3 million to a state agency to expand the fight against class action lawsuits filed by community groups demanding that the state fund community services for people with disabilities - as what happened in 2002-2003.

* Hard choices like approving a nearly $600 million contract for correctional officers at the state's prisons - the same year [note: 2003] big cuts were being proposed in Medi-Cal, and a $52 million cut was made to regional center services.

* Hard choices made THIS year [note: 2003], like a $1 million reduction to the Department of Corrections budget in the current budget year, plus somehow covering over $500 million in overspending by that same department - while at the same time proposing to suspend the Lanterman Act, eliminate a critically needed IHSS program, cap enrollment and caseload for regional center services and other programs, cut Medi-Cal and cut regional center services by over $338 million over 18 months.

* Hard choices like a $40 million computer software contract that was neither properly reviewed or needed at the same time making proposals to cut Medi-Cal optional benefits - like catheters, durable medical equipment, dental services, rolling back SSI/SSP to bare Federal minimums.

* These are hard choices for the Governor and the State to make?

And we have choices too: we can do nothing. We can advocate as we have with the same small group of people as we have year after year (no offense to their good efforts).

Or we can choose a different option. Many people are now working hard in organizing and mobilizing thousands across the state, in every legislative district to hold the Governor and legislators accountable to people with developmental and other disabilities, to their families, to the community organizations and workers and other advocates in the coming March 2004 primary and November general 2004 elections and beyond. And this is a new promise we make to them: we will not forget and allow this to happen again and again.

The hard choice for us, however, is to remember - and help others to remember that we can choose hope over outrage. That we can remember the "promise" over the despair. And that we can fight and never give up as we do with our own children or families or workers - instead of retreat and agreeing to cuts with the belief that the state will take no more. They will - if we let them. And they do - every year.

The Governor's Department of Finance has numbers that they can crunch, reduce and eliminate.

But we have numbers too - several millions of people who have disabilities, brain injuries, families - community organizations and providers, direct care and other workers, advocates and others.
This isn't a dream. This isn't a cliche. It is about hard work and harsh reality. It is about unified action. It is about mobilizing and organizing. It is about justice

But most important of all, it's about the "promise". And that "promise" is about hope.

The California Disability Community Action Network, is a non-partisan link to thousands of Californians with developmental and other disabilities, people with traumatic brain injuries, the Blind, the Deaf, their families, community organizations and providers, direct care, homecare and other workers, and other advocates to provide information on state (and eventually federal), local public policy issues.