It's about the rights of people with disabilities

I view these issues from the perspectives of a former direct care worker, agency board member, advocate and the brother of Alana Omoto, who had developmental and other disabilities.  Depending on how many cups of coffee this could be very short or very long (whether I make sense is anyone's guess, though one can be still hopeful against the enormous odds).

IT'S ABOUT THE RIGHTS OF PEOPLE WITH DISABILITIES - AN INTERVIEW BY THE UCP OF THE GOLDEN GATE

This is a reprint of the full interview by Dave Tibbs of the UCP of the Golden Gate (based in Oakland) program called "Choices",  with me, which was done on May 28, 2004.  The program - "Choices" is tremendous and Dave Tibbs helps to run that program there. Dave Tibbs asked to interview me for the UCP of the Golden Gate recent newsletter - though this reprint contains the full interview.  I wanted to share the interview with everyone, and not because I am big-headed and bashful (great qualities to have as long as you can get through the door), but because I thought Dave asked good questions, from the point of view of a worker in a community organization that is struggling - like hundreds of other organizations across California, against enormous obstacles.  Though UCP serves children and adults with developmental disabilities, the questions really cross over to all the services critical to people with other disabilities.  In the last analysis, the issue is - and always has been, about the rights of people with disabilities and the hope that goes with that.

As the previous legislative director for the UCP California affiliates, I have a deep appreciation and affection for the work they do.  All the UCP affiliates continue to provide generous support to the California Disability Community Action Network and the advocacy effort which is very much appreciated. - Marty Omoto

Dave Tibbs/UCP: "Marty, the Lanterman Developmental Disabilities Services Act [considered the "civil rights" act for people with developmental disabilities, along with the Americans With Disabilities Act, etc] is, for now, apparently off the chopping block.  What cuts did manage to make it into the Governor’s latest proposal and how will they affect people with developmental disabilities?"

Marty Omoto: "Well, I think we're all trying to understand the difference between surviving the chopping block and being gutted.  Several cuts remain - though we are hopeful the Legislature will reject many of the major cuts, including massive reductions to In-Home Supportive Services, a proposal to impose statewide standards to limit services and funding for regional center community-based services, cuts to SSI/SSP, and other cuts to regional center services.  There are also major cuts to education that will eventually impact special education programs and adult education programs that serve people with developmental disabilities.  Other cuts will impact accessible transportation services and housing for people with disabilities.  And of course, these proposals are on top of reductions passed last year that community-based providers like UCP and families must some how cope with.  The Governor is also proposing a massive restructuring of Medi-Cal though we have no details on how that will look [Note: the proposal will not come out until August 2, to be effective for the 2005-2006 budget next July].

Dave Tibbs/UCP: "Do you think the Governor's proposed $100 million cut in Regional Center’s ability to purchase services [for community-based services] will pass through the state legislature?  If so, how would that impact UCP’s programs?"
Marty Omoto: "Yes and no. The Governor's original proposal to impose statewide standards that would limit community-based services and funding for children and adults with developmental disabilities [also known as purchase of service standards] looks like it will be soundly rejected by both houses of the Legislature - though nothing is final yet.  However the budget reduction measures put in place last July have resulted in a cut to the regional center budget that funds community-based services close to $100 million - and all those measures have been approved to continue on for the 2004-2005 year. So the answer is yes on the reductions, but probably no on the statewide standards, that we feel would attempt to rollback rights under the Lanterman Act. There are no details yet on how the additional funding reduction will be implemented, but one can assume that community organizations like UCP will definitely see less funding one way or another. No details yet however. But if community organizations - like UCP, were reeling five years ago because the State was refusing to increase reimbursements to cover rising costs of providing services - then the situation is only getting worse when compounded by budget cuts - no matter what size it may be".

Dave Tibbs/UCP: "The Governor recently announced plans to take away people's ability to sue an agency that is in violation of the Lanterman Act.  Fortunately a judge decided that people should retain the right to litigate.  If this had passed, a person's rights could have been violated and he/she wouldn't have been able to do anything legally about it.  Many activists see this as the calculated beginning of an attempt to erode the Lanterman Act since the Governor wasn't able to suspend it all at once. What are your thoughts on this?"
Marty Omoto: "Well, the Governor or the State can't take a person's rights away, unless we allow it to happen.  35 years ago, this State finally recognized - but did not give - the rights of people with developmental disabilities.  People always had those rights - and we will have them no matter what the Legislature or a court or a  Governor does. We need to remember that. The real question is - whenever that happens, what do we do about it?  Indifference is a powerful force - and the State is counting on us to be indifferent, to be passive and divided.  People are tired - families are tired, direct care and in-home workers are tired and underpaid.  Community organizations have been pushed to the edge, and it seems as if we are always being asked to wait in line for the "will call window of budget cut disaster" every year.  It doesn't seem fair.  Well, it isn't.  Life, as John Kennedy once said, is not fair.  But we're not helpless either.  Someone in ancient times wrote on the pyramids in Egypt "...and no one was angry enough to speak out."  And perhaps that is the first step for us - to be angry enough to speak out, to remember why we are speaking out, to remember who we are speaking for, and to mobilize together.  If we never forget to do that, we will never be helpless."

Dave Tibbs/UCP: "I work for a day program [for people with developmental disabilities]  in the East Bay called 'Choices'.  It’s hard to imagine how we would be able to continue to operate with a budget that is any lower than it is now.  I know that Independent Living Services and In-Home Supportive Services [IHSS] are already operating on shoe-string budgets as well.  Do you have any vision of what life for a person with a developmental disability would look like if services continue to suffer from budget cuts?"
Marty Omoto: "Imagine a shoe without the strings - I think the State does. So let's give them the boot. We in the community know that critical programs can't continue with cuts every year, combined with increasing costs that continued to be unreimbursed by the state, while wages remain shamefully low. What would life look like if these cuts continue? Choices for a child or adult with developmental disabilities - ironically the name of the UCP Program, would be reduced if not taken away entirely, if we let it. For people with developmental and other disabilities and their families - like it was for my own - obstacles to services would become insurmountable barriers, and ultimately people's lives are put at risk.  That is a terrible vision for this state isn't it?  We can't let that happen.

Dave Tibbs/UCP: "Can you talk a little about the cuts to IHSS funding?  Where are we at right now?"
Marty Omoto: "The original proposed cuts to IHSS were huge and massive.   Right now, the Governor has backed off on the proposed elimination of the "Residual Program" of IHSS - the part of the program that (among other services) permits the parent of a child with developmental and other disabilities to be their in-home service worker under strict eligibility and income requirements, or to permit a spouse to be the in-home worker for their loved one.  The Governor is seeking federal matching funds - though the Legislature and advocates are insisting on legislative budget language that underscores that the program will continue on no matter what, and that if federal matching funds are approved, that eligibility and benefits do not change.
The other cuts by the Governor, including proposals that would have the impact of rolling back IHSS worker wages to the state minimum wage ($6.75) and eliminate the employer of record (public authorities and their advisory committee) remain on the table.  However the budget subcommittees of both houses voted to reject these cuts. That is a hopeful sign - we won't know this will finally turn out until a budget is passed and signed into law by the Governor.  But we are fighting those cuts.
[Note: as of June 16th, final action has not been taken by the Legislature on the full budget and the budget related bills. The actions taken by both the Senate and Assembly budget subcommittees in late May - rejecting the Governor's cuts that would have rolled back IHSS wages, eliminated public authorities/advisory committees, and restoring funding for those budget items still stand - though like everything, still needs final approval as part of the full budget package by the full Legislature and then the Governor]

Dave Tibbs/UCP: "Can you explain the “Share of Cost” liability [for parents/families with children with developmental disabilities] in the Governor’s proposal?  Does that mean that people with developmental disabilities will have to pay for services?"
Marty Omoto: "Bottom line - it's a tax on families with a child with developmental disabilities. This is not a good sign and is a likely trend that will impact all people with disabilities eventually. The family "Share of Cost", as it currently stands today, has been greatly modified from the original proposal by Governor Davis last year.  That proposal would have impacted nearly every family who have children ages 3-17 with developmental disabilities who also receive regional center services.  The new plan - in response to protests from parents - would apply to families whose income is at or above 400% of the federal poverty level (about $70,000 for family of four), who have children with developmental disabilities between ages 3-17, who receive certain specific regional center services (camping, respite or daycare), with sliding scale share of cost, based on the family's income.
Most families would not be impacted by this proposal as it stands.  But one should not be so easily swayed by the generosity of bad public policy. The real danger is not what the proposal says now - but rather, how it will likely evolve in the coming years.  We know, from recent past history, that the State cannot be trusted to do the right thing. The State tried to break its promise on the Lanterman Act last November.  It is seeking to renege on a promise made in 1999 regarding In-Home Services worker wages. The State is proposing to change state law to withhold agreed upon cost of living increases for SSI/SSP.  The State broke its word on a law passed several years ago promising planned rate adjustments for certain programs for people with developmental disabilities.  The State is seeking to go back on its word regarding benefits to Filipino American veterans of World War II -  veterans who have served this country in war time who are now in their late 70's and 80's.  That is shameful.  The State simply cannot be trusted.
This isn't about fairness or reform.  It is - or will be - an attempt to reduce caseload and use of services.  The plan is a "trojan horse" that many believe will change into larger fees, lowering the threshold of who is impacted, and widening the number of services where a share of cost will be required. We want real reform and change - that is what the disability rights movement is all about. But this isn't reform.
If this 'share of cost' plan was so reasonable, and if the Governor and legislators believe people who can pay should pay - then why not propose such a 'reasonable' plan to those families who have children in public education? Education is a right - and education is not 'means tested'. The answer is simple: no legislator would survive politically if they made such a proposal.  However, they DO survive politically when they do it to families with children with disabilities. That should tell us something."

Dave Tibbs/UCP: "The Governor also wants to establish a standard reimbursement rate for [regional center] services.  Can you explain how that would impact UCP’s programs?"
Marty Omoto: "Unfortunately, no one really knows how this will turn out - its a proposal for the budget year that begins July 1, 2005.  We can assume however, based on the fact that the Governor refers to the standardization as a "cost containment", that the impact to providers - including UCP will likely mean less funding.  So this is an issue that we will have to really be strong on - because the impact to critical programs will be so huge.  The Governor is also thinking about , for the 2005-06 budget year, imposing a share of cost to families with children with disabilities ages 0-3, and a plan to access the assets and special needs trusts of adults with developmental disabilities to help pay for their regional center services (exempting people on SSI/SSP or Medi-Cal). This is a disturbing trend, one that you can see happening in In-Home Supportive Services, what we think could happen in Medi-Cal, mental health community services and other areas."

Dave Tibbs/UCP: "How much can we rely on state legislators to protect the rights of people with developmental disabilities?  Is there anyone who consistently votes against these kinds of cuts or are we on our own?"
Marty Omoto: "First of all, we need to first rely on ourselves - our communities across the state.  The first line of defense is always going to be with those who have something to defend.  That's us.  Are there legislators who consistently support us? It depends on what.   Believe it or not, most legislators are fairly good and decent people.  And in the Bay Area, where UCP of the Golden Gate provides services, we have good legislators in Senator Perata, Assemblywomen Chan and Hancock, and certainly Senator John Burton.  Still, our community needs to take a hard look at changing our way of advocacy, to mobilize our communities to hold our legislators accountable not only for what they say on our behalf - but how they vote on the issues critical to us.  The honest truth is, we've not received the needed reimbursements to fund critical programs, and suffered huge cuts to our system under a Democratic governor and under a Legislature controlled by Democrats.  So our advocacy has to address that in a responsible, effective, non-partisan, organized way.

Dave Tibbs/UCP: "The people who are reading this are people who participate in UCP programs, families, home staff, and community contacts.  How can those people get involved to help protect against future cuts in funding for people with developmental disabilities?"
Marty Omoto: "Vote! Register to vote!  Pass on information on what is happening, share information on what is happening in your own communities regarding cuts or changes to special education, to community-based services, to health services critical to people with developmental disabilities. Join the effort to mobilize communities across the state to hold the Governor and Legislature accountable for their actions by tracking their votes, positions, campaign contributions. Check out our website at www.cdcan.org for information.  Get on the CDCAN Capitol News Report list.  We have to mobilize to make a difference because if we fail to do so, we cannot protect the future. And mobilization includes voter registration, holding policy makers accountable at every level in a non-partisan, organized effort.  We're doing that.  Did I say vote? And register to vote?

Dave Tibbs/UCP: "Cuts in funding for services for people are nothing new.  We've seen them come from Democrats and Republicans alike.  Do you see a way that we can protect things like the Lanterman Act, the Regional Center and Area Board systems, Independent Living Services, and In-Home Supportive Services from being cut any further or, eventually, completely taken away?"
Marty Omoto: "Cuts are nothing new, but what IS new is our efforts toward unified community action.  There is no magic bullet, there is no single person we can talk to that will make things better for us.  It comes down to simple basic politics: can we make a difference when we hold state officials and the Legislature, accountable for their actions, their votes?  Can we influence enough local elections to attract the attention of the leadership of both parties?  I believe we can.  That is what we are doing - non-partisan, mobilized action for the rights of people with developmental and other disabilities through townhall telemeetings, trainings, and information sharing.  We're looking at a possible constitutional disability rights initiative - essentially putting the Lanterman Act and other basic rights of people with disabilities into the State Constitution as a means to organize our communities, to raise awareness of the critical issues - but also to further protect our rights.  And that's what this is really all about. Our rights - and it's also about hope.