Guest Perspective/Barbara Turner and Bob Cross

Newspress.com

Santa Barbara, California

7/23/00

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Developmental centers: Another point of view

For more than 25 years our association has represented the interests of

people who live in state developmental centers. We are all unpaid

volunteers, comprised mostly of the families of those clients.

As such we were shocked by Terry Boisot's recent guest commentary in your

Sunday Voices section. It is replete with errors, exaggerations and outright

false information.

Of the many points contained in the article, two stand out as in particular

need of addressing. First, the claim that $1.2 billion is required and would

be ill spent if the state's developmental centers are upgraded; and, second,

the assertion that the cost of care of a client in a developmental center is

10 times the cost of community care. In both of these instances the article

is far off base.

In regard to the $1.2 billion statement, the fact is that in 1998 the state

contracted with the Vanir Corp., engineering experts in the field of public

services, to evaluate the programs and physical plants serving California's

developmentally disabled citizens housed in centers. Its findings were

announced last year and can reasonably well be summarized as saying that in

order to serve the targeted population, "up to" $1.2 billion may be required

in order to bring the living units and client programs into compliance with

state and federal standards. And since "compliance" is a mandated condition

for the receipt of about $500 million in annual federal funding, there is

significant incentive to go ahead.

But, very importantly, there is no evidence that the estimated cost will

vary whether the clients are served by developmental centers or by community

care. In other words, the expenditure is driven by the needs of the clients

and not by their location.

The state, however, has learned from previous precipitate planning in this

area that it should move very carefully. Consequently, the Vanir report's

findings were promptly presented to an Advisory Committee on Restructuring

assembled by the state administration from a diverse group of so-called

stakeholders, including representatives from several parent-advocate

associations. The group has already met twice, and will continue to meet

periodically over the ensuing year. Its work will be concluded when it makes

its recommendations as to how it believes the targeted population should

best be served. The site and size of the facilities to provide for the

population are presently undecided. But implicit in the task force's

activity is that such decisions will be based on current and further

information provided to its participants. Interestingly, a contingent of

advocates from Santa Barbara was included on a parallel state advisory

committee on system reform but withdrew early this year.

The other major issue requiring response is the article's claim of an unfair

difference in the funding of community-care programs compared with

developmental centers. Again, the claim is at extreme odds with the facts.

Innumerable studies over the past 25 years reveal a completely different

picture. In 1975 UCLA's Neuropsychiatric Institute did one of the first of

such studies. Its conclusion: "The cost of care of services to

developmentally disabled persons in state institutions do not differ

significantly from the adjusted, true costs of services in community

settings, provided both groups are provided with appropriate services."

And our state Department of Developmental Services reached about the same

conclusion in May 1991. Research overseen by its then-deputy director, Dr.

Carol Hood, found the difference inconsequential. But even before that, in

1985, the Association for Retarded Citizens (now The Arc) had weighed in on

the subject. Boisot, who is an Arc board member, might well heed the

injunction to Arc members printed that year in its newsletter, "FACTS," not

to use the cost-of-care argument because "studies have consistently failed

to find significant differences in costs between community and institution."

Another state-sponsored research project on the subject, Pennsylvania's

Pennhurst Longitudinal Study of 1985, came to the same conclusion and ended

its report by stating, "The money-saving argument is primitive and

misleading."

But with all of this, how can the commentary claim such a wide difference in

cost, institution vs. community? It is accomplished only by using a typical

apples-vs.-oranges comparison. The state contracts with 21 regional centers

(independent agencies) and funds them to provide a limited number of

services for people with developmental disabilities. But "limited" is the

key word here, and the regional center funding covers only a part of the

cost for clients in community care. So, by dividing the partial funding that

regional centers provide to clients by the total client load, Boisot

achieved a very low per-client figure, but one that in no way represents the

true total cost of individual community care.

This method overlooks several vital pieces of information. First, most

regional center clients are mildly impaired, live at home, and draw little

or no funds from the regional center. Such services as they may require

often come from sources outside the regional centers, and at more than $1

billion a year statewide, with special education being one of the principal

and most costly. Second, for others, the costs of service can be very high.

Many out-of-home placements in the community now cost in excess of $42,000

per year, a figure that does not include the many expensive therapeutic day

programs also provided to this population. Third, in both figures Boisot

uses for comparison, the result is an average. Cost of care to individuals

in both community and developmental centers varies widely, depending on the

needs of the client.

The former head of the Department of Developmental Services liked to tell of

the community's ability to care for multiply and severely impaired clients

in the community. Fine, but at an acknowledged cost sometimes in excess of

$300,000 per year for one client. In the modern developmental center, with

its concentrated array of services and professionals, the cost for a similar

client is slightly less. Also, not all developmental center clients require

services that cost the average. Many, including those on so-called waiting

lists for community care, may have reached a level of independence that

warrants little more than room and board. And here's a surprise for many:

When such clients are moved to the community, their cost of care may soar.

Why? Because in the community, and away from the sheltered environment of

the developmental center, many require extensive protective services:

coaches, independent living roommates, and special transportation, to

mention only a few.

Those are the two major issues, but Boisot raises others that should be

dealt with.

One is the commentary's suggestion that "advocacy efforts to keep

institutions open have negatively influenced funding for community

supports."

On the contrary, our association has for more than 25 years been in the

forefront of advocates for improvements in community care, and our efforts

have paid off. It not only makes sense for us to take that approach, but it

is also in our self-interest.

Since 1973 the population of the state's developmental centers has dropped

from about 12,000 to its present 3,800. This should tell anyone who can read

figures how important to us is high quality community care, and how our

efforts have had a clearly beneficial effect. Where adjusted per-capita

funding for developmental center clients has remained almost level for the

past five years, per-capita spending for community care has increased

three-fold. Even as far back as 1986, efforts at improving community care

were strikingly evident. According to then-Department Director Gary

Macomber, the previous nine years experienced a growth in caseload of 47

percent, while the purchase of service budget grew 158 percent.

But willing as we are to support improvements in community care, we've been

around long enough to believe that the developmental centers play an

essential role in the care system. To dismantle them could be tragic.

Overlooked by Boisot are the studies conducted by University of

California-Riverside researchers, who found a more than 70 percent increase

in the death rate among a group of nearly 2,000 clients placed from

California developmental centers into the community during the early '90s.

It is no ideologically biased report. It stood the test of peer review and

was published in mid-1998 in the prestigious journal of the American

Association on Mental Retardation and Developmental Disabilities.

And eminent scientists have not been the only source revealing troubles in

community care. Boisot's commentary presents a very narrow and unquestioning

view of the system that serves people with developmental disabilities as she

fails to mention two recent impartial investigative works. The latest, a

mid-1999 series of articles by Katherine Boo in the Washington Post, mapped

the misery and neglect of mentally retarded community-care residents in the

Washington, D.C., area, and won a Pulitzer Prize. And a previous

investigative effort in California had looked at similar issues and come up

with similar findings. That led to the state administration being blasted in

a series of articles appearing in the San Francisco Chronicle on July 14 and

15, 1998. And while the authors of those articles were all winning prizes,

the head of California's Department of Developmental Services, the man in

charge of community care placements, finally acknowledged the accuracy of

the information to Chronicle reporters and then resigned his post in August,

a month later.

All of this clearly reinforces our belief in the indispensable need for the

concentration of experienced and well-trained professionals who provide

services in the compact environment of California developmental centers. To

dismantle those facilities, as Boisot and some others propose, would

ill-serve some of the most severely impaired of our fellow citizens and,

sorry to say, would not in any way benefit people with developmental

disabilities who are served in the community.

It is with great sadness and regret that we find ourselves having to respond

in such a manner to the pronouncements of Boisot. During all the many years

of work by our association's dedicated volunteers who have served on

practically every relevant agency of government and every advocacy

organization serving the needs of people with developmental disabilities, we

have always vigorously supported every effort to improve community care. But

in so doing, we have never encountered the tactics that we see in Boisot's

work. The words of her own association, quoted above, are ignored by her

decision to present arguments that she has been told were invalid and asked

not to use.

Barbara Turner is president, and Bob Cross is vice president of the

California Association of State Hospital Parent Councils for the Retarded.