Bruce MacKenzie Guest EditorialVoice from Santa Barbara/Bruce MacKenzie
Santa Barbara NewsPress
7/26/00
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Create a unitary developmental services system
Founded and headquartered here in Santa Barbara, the Community Advocacy Services Association, Inc. (CASA) is a statewide grass-roots advocacy organization of parents, family members, consumers and friends of the 162,970 people with developmental disabilities who live at home or in private facilities in their communities. I am both president of CASA and a paid consultant to several of the states' privately operated regional centers. The state serves this population of people with mental retardation, cerebral palsy, autism, epilepsy and similar disabilities by contracting with 21 such regional centers around the state, which, in turn, contract with thousands of private providers to meet the needs of these consumers.
A lawyer by training and experience, I came into the field not as a volunteer but as a draftee when my daughter, Elizabeth, was born with cerebral palsy and epilepsy 19 years ago. Like most people, I knew next to nothing about developmental services. I learned as we went along. While Elizabeth is generally healthy, she's termed "medically fragile."
There is no category of community out-of-home placement which will accommodate her. Her fragility caused her to be turned down at Hillside House and Cornerstone House, both wonderful community resources, so her options are to either live at home with us or reside in a state-run developmental center. Our family chooses for her to live at home.
I rise in response and opposition to Barbara Turner and Bob Cross, officers in the California State Hospital Parent Councils for the Retarded (CASH/PCR), who criticized one of our local parent leaders, Terry Boisot, because of statements she made in her recent series of News-Press articles describing the present state of affairs in our state's developmental services system.
Since before the time of the Civil War, California state government took responsibility for people with mental retardation and similar disabilities. When the philosophy of where to provide care changed more than 100 years later, in the late 1960s, state government kept up with the times and encouraged families to keep their disabled children at home or living nearby in their home communities -- and the state promised to continue the historical support that had always been there. This was the great promise of the Lanterman Act. It is why the regional centers were created, to replace the old-style state-run institutions which are called developmental centers (DCs).
However, in large part because government still can't let go of the institutions, the promise has not been fulfilled. A disproportionate allocation of available resources goes for the consumers in the DCs, with relatively little left for everyone else. The State Auditor's Office reported to the governor last October that, without sufficient funding, the state cannot furnish optimal services to adults with developmentally disabilities, but the state's recently approved budget fails to adequately address the need for increased funding for the community based system.
Just before leaving office, Governor Wilson released an engineering study in late 1998 which reported that it would cost $1.5 billion to bring the institutions up to federal and state program and building code standards. The state's leading authorities, Senator Wes Chesbro and DDS Director Cliff Allenby, used the $1.5 billion figure at the recent restructuring committee meeting alluded to by Turner and Cross. I was there. Boisot was there. They were there. Yet, Turner and Cross deny what we all heard. There are none so blind as those who will not see, none so deaf as those who will not hear.
On average, the study calls for the spending of $395,000 for each institutional resident to improve their present living quarters and programs. This would be in addition to the annual costs for the upkeep of the DCs and for the care of these same consumers. Under the new budget, the state plans to spend an average of $168,000 -- up from $146,000 last year -- for each of the 3,844 developmental center clients, but it only plans to spend an average $11,500 -- up from $10,500 last year -- for each of the 163,000 Turner and Cross dismiss these comparative figures as apples-and-oranges analysis. As they correctly point out, more than 100,000 consumers continue to live at home with their families. While rent and food are taken care of that way, there are still other services delivered at home which are paid for by the state. For example, our daughter now receives around $50,000 per year from the regional center budget to help with her nursing care. She happens to be in school, but, if she were in a day program, it would cost another $20,000 from the regional center budget -- for a theoretical total of $70,000. Her medical needs are met by our health insurance, with MediCal acting as her secondary source.
When I visited Lanterman DC a few years ago, one of the physicians there told me that it would cost the state between $300,000 and $500,000 to care for Elizabeth at the developmental center. As Turner and Cross point out, the average is only an average, with actual costs higher and lower. An apples-to-apples comparison is to look at what Elizabeth costs the regional center and what she would cost at a developmental center. Even if she got all of the nursing services she requires from the regional center, eliminating the subsidy my family provides, the costs would rise to around $120,000 per year, which is expensive but still one-half to one-third of what the DC would cost.
Elizabeth is an expensive case. An average cost for an adult in an out-of-home placement, for both residential and day programs, is closer to $33,000 per year, which is three times the average regional center cost but is still only one-fifth of the average DC cost.
Those are apples to apples. Turner and Cross can cite all of the 10- and 25-year old studies they want to support their that claim the developmental center expenses are the same as community placement costs, but the financial facts are significantly different today. Ten years ago, the state was just entering a severe recession, a recession which lasted for the entire eight years of the Wilson administration. During that time, DC costs climbed unabated, while community services costs were tightly restricted. Moreover, with the prospect of an additional extraordinary expenditure of $395,000 per person to bring the old buildings at the institutions up to code, the notion is tossed into a cocked hat that these antiquated places of the past can be economically viable in today's world.
The single most important thing which California government needs to do for our constituency is to create a unitary developmental services system. Right now, we have -- both de jure and de facto -- a two tiered system. The Turner and Cross guest commentary is replete with us-and-them assertions, reflecting the dual nature of our present system. For example, they again repeat the claim that there is a difference between the consumers served in the developmental centers and those served in the community. They defend the wide discrepancy in funding by saying that the developmental centers serve a different, more profoundly needy population, so it's unfair to compare the two different tiers of the system.
Such a contention, however, is contradicted by the state's own facts and figures. In October of 1999, for example, while there were 2,504 individuals in the DCs described by the state as having "major medical problems," there were 11,006 such individuals with the same label already living in the community. There were 2,403 individuals in the DC's who were described by the state as having "profound mental retardation," but there were 8,931 such individuals given the same label by DDS who were already living in the community.
The question might be asked: "While there are many more people in the community with such special conditions, what about individuals who have two or more special conditions or behaviors, making them more complex and more problematic to deal with?"
Well, in October of 1999, there were 2,239 individuals in the DCs with no special conditions whatsoever, compared with 117,140 in the community. There were 530 individuals in the DCs with one special condition, but there were 7,763 such individuals in the community. There were 364 with two special conditions in the DCs, but there were 3,329 in the community. There were 492 with three or more special conditions in the DCs, but there were 2,031 in the community.
In other words, there is no meaningful overall difference between the kinds of challenges found in the DCs as those faced by the private sector providers. The expenditures are so different as to amount to a violation of the Equal Protection Clause of the Constitution and equal protection statutes such as the Americans with Disabilities Act. Indeed, this May, a civil rights class action lawsuit entitled Sanchez vs. Johnson was filed in federal court under the ADA alleging that that is precisely the case in California.
Thus, the state is up against some very large and looming problems: 1. How to explain to a parsimonious Department of Finance why it needs $1.5 billion in additional extraordinary funding for buildings in a neglectful state of disrepair. 2. How to explain to a stern federal judge the state's disparate treatment of two similar groups of disabled citizens. Moreover, it has a third problem: How to explain to the taxpayers, with all of the grossly disproportionate expenditures on the institutions over the years, why the institutions are still no better for it and some are now unable to maintain their federal accreditation -- and keep the accompanying federal dollars.
Reading Turner and Cross, you might think: "Well, at least the folks living in the DCs are safe."
Unfortunately, it's not the case either. For years, regardless of the billions pumped into it, California's developmental center system has been unable to keep up with the standards required to earn and keep accreditation. A decade ago, the state gave up trying to get private accreditation. Federal accreditation is necessary to keep the federal dollars flowing, but federal accreditation is becoming harder for the state to retain.
There are five developmental centers. Sonoma DC in Eldridge is the largest such institution in the nation. In December of 1998, it failed six out of eight certification categories that measure how well it protects the well being of its residents. Agnews DC in San Jose failed five out of eight certification categories in March of 1999. Agnews has been unable to regain certification for over a year at a cost to the General Fund of $2.1 million per month. While Sonoma regained its certification, it was again decertified just recently, at a loss of $3.1 million per month in federal funding. The state's General Fund must pick up the unexpected shortfall, to the detriment of all taxpayers.
Loss of federal accreditation is not the result of minor violations. At Sonoma DC, the federal authorities are concerned about such things as two recent unexplained deaths and the use of a stun gun to control a resident. I visited the area two weeks ago and heard lesser concerns: a consumer with an unexplained crushed pelvis, and a 19-year old resident raped by a DC staff member who claimed it was consensual sex. How does someone committed to a state institution have the ability to give such consent?
Instead of paying for a study of health and safety concerns in the community, Turner and Cross' organization's dollars would have been better spent studying the places to which they and their members relinquished their children.
This has all had a disastrous effect on efforts to increase the quality and quantity of community services. Money continues to be poured down a rat hole to keep the DCs open. What needs to happen is the creation of a unitary system in which all consumers are treated equally. If consumers are less well cared for in the community, as Turner and Cross claim, then it is because the direct care staffs in the community do not enjoy the same level of wages and job security as those in the developmental centers. It is a pressing health and safety matter for government to provide all consumers with adequate staff -- which means to provide them with adequately paid staff. It can be done with funds now being wasted on crumbling bricks and mortar in the institutions.
In recent years, we have been exposed to sensational news stories featuring incidents which have occurred in the community. Turner and Cross' organization, CASH/PCR, even paid a Riverside professor to do a -- now-discredited -- study to show that people with developmental disabilities are "dying like flies" out in the community. Years have passed but corrective action has not been taken. The answer is not more rules, more regulations and more state inspections. The state cannot regulate quality into the community resources. A state inspector can't wag her finger at an $8.50 per hour direct-care worker and turn him into a clinical psychologist or a registered nurse.
The answer is not to rebuild the developmental centers for fewer than 4,000 people, when there are close to 60,000 people already out there in the community no longer living at home with their families. Yet this is the course which the state has taken in the past, always for political reasons. Instead of playing more politics, the answer is for the state to create a unitary system in which all consumers are served by direct-care staff with the same training and the same wages and benefits.
It is unproductive, as Turner and Cross urge, for us to worry about how to re-create the developmental centers, how to recast them for a role in the 21st century. Times have changed. The developmental center model must be abandoned and the real estate given over to other uses. The talented personnel presently on staff at the developmental centers must be deployed directly into the communities, where most people live -- close enough for easy interaction with as many consumers as possible.
It is true that closing developmental centers will disrupt the lives of government employees and impact the economically dependent communities which surround the institutions. However, the purpose of the state is to best serve the developmentally disabled, not to provide a place of employment for any particular group of individuals. Moreover, as we know from such diverse experience as military base closures and the closure of Stockton DC and Camarillo DC, that the economic crisis is short-lived and other uses bring re-newed economic prosperity to the impacted local communities.
All of the real solutions lie in resolving the inequity of the two-tiered system and creating equality in employment opportunities throughout a unified system.
Bruce MacKenzie is a former partner with the local law firm of Rogers & Sheffield. He served on the board of Tri-Counties Regional Center from 1991-96, the last year as its board president. He presently serves as member of the board and treasurer of Alpha Resource Center.