RSA THREATENS TO SHUT DOWN CIL

RELEASE DATE: JULY 7, 2007

RSA THREATENING FUNDS TO CENTER FOR
INDEPENDENT LIVING THAT REFUSED DEMAND
FOR CONFIDENTIAL INFORMATION IN ITS
CONSUMER SERVICE RECORDS

Just weeks after finalizing the last settlement in a federal class action
ADA lawsuit against local transportation providers, Everybody Counts is
faced with a decision that may threaten its very survival. 

John Swanson, Executive Director of NIRPC, said that he is happy to report
that his agency is working diligently with Everybody Counts to prepare for
public hearings scheduled for August 21 and 28th to solicit comments from
local transit riders. 

But according to Teresa Torres, Everybody Counts Executive Director,
efforts to ensure that the ridership community is adequately familiar with
the terms of the consent decree may be adversely affected by actions just
taken by the Rehabilitation Services Administration (RSA) of the U .S.
Department of Education. 

Torres claims that her agency, which has served the Northwest Indiana
community since 1986, has been issued a demand to provide federal
officials with unrestricted access to all personal records of individuals
who have requested or received services. Her board of directors believes
that those records are protected by laws governing the operation of
Centers for Independent Living, and has instructed her not to comply. 

The cost for that action may be high, but Torres says that the cost to the
local disability community if the demand was honored would be greater. 

RSA annually conducts monitoring reviews of at least 15 per cent of the
more than 400 Centers for Independent Living nationwide which were created
under Title VII of the Rehabilitation Act. 

According to Torres, IL Specialist Felipe Lulli demanded complete and
unrestricted access to consumer service records which contain personal and
confidential information about the persons served. Citing federal laws
which she and her board of directors believe protect the privacy of their
clientele, Torres refused. 

She said that Lulli, who acknowledged that RSA had recently re-assigned
monitoring responsibilities, refused her offer of personal files for which
the agency had obtained releases and/or personal files with all
identifying information blocked out. 

"We take very seriously our responsibility to respect the privacy of those
who come to us for assistance," Torres said. "We cannot willingly violate
the very confidentiality policies that we're required to uphold." 

Torres said that Centers for Independent Living are specifically required
by federal laws and regulations to adopt and implement policies and
procedures to safeguard current and stored personal information. "We are
supposed to notify people if there is any agency to which we regularly
provide access to confidential information. Since unrestricted access is
not included in our contract, nor has it been required by RSA in the 15
year we have received funding, we have always assured them that we could
be trusted not to share personal information with anyone." 

In its letter demanding unrestricted access, RSA claims to be authorized
to "unrestricted access to any books, documents, papers or other records
of recipients that are pertinent to their federal awards." 

Torres said her board and advisors believes that since their grant is
operational, and payments are not based in any way upon the numbers of
individuals who receive services, simultaneous review of names and
addresses alongside evidence of service provision should not be pertinent
to a review. 

"We must guarantee that the confidentiality of personal information will
be honored and respected," Torres said. "I have not seen a compelling
reason to violate our commitment and responsibility to do just that." 

"Because we handle Everybody Counts accounting services, we handled the
financial portion of the review," said Jay Goldman of Goldman and Company.
"Absolutely no problems were disclosed to us. They seemed satisfied with
everything that we gave them." 

Goldman said that RSA has stopped access to the electronic process by
which Everybody Counts draws down its grant payment.  Calls to determine
how long the turn around time will be for manual submittal of invoices
have gone unanswered. 

"This all seems a bit excessive to me," Goldman said. "Essentially, my
clients are being forced to comply with what they believe to be an illegal
demand or face immediate ramifications." 

Steven Siros, the Chicago-based attorney with Jenner and Block who
represented Everybody Counts in the decade-long federal class action
lawsuit against local transportation providers and the Indiana Department
of Transportation, says his firm is reviewing the implications of RSAs
demand. 

Board president Evelyn Rhenwrick said that RSA has historically reviewed
only files for which releases had been signed, or accepted redacted copies
According to Rhenwrick, the reviewers rejected Everybody Counts offer to
provide either or both. 

"As a special educator, I am compelled to ask why an agency that is
supposed to have the same goals of protecting the rights of citizens with
disabilities would be at odds with what is right," said Rhenwrick, a
Program Supervisor for the Gary Community School Corporation.
"Confidentiality is the cornerstone of service providers. You cannot put a
value on people's trust. Once it is breached, it's hard to recoup." 

Some national disability rights advocates believe that perhaps Everybody
Counts has been doing too good of a job of fulfilling its role as an agent
of change. 

"They have not only been at the forefront of fighting for changes in a
state that is still way behind the times," said Lucy Gwin, a former
Indiana resident who is the editor of Mouth Magazine, Voice of the
Disability Nation. "They've played a significant role in the growing
demand among national leaders for RSA to clean up its act. This demand is
a violation of the constitution that is supposed to protect our rights to
privacy." 

Roland W. Sykes, Editorial Committee Chairman for Disabled Individuals
Movement for Equality Network (DIMENET), said that Everybody Counts
persistence led to a comprehensive investigation five years ago into
violations of Title VII by the Indiana Family and Social Services
Administration and the Indiana Council on Independent Living. 

That report, Sykes claimed, identified multiple and significant areas of
non-compliance with federal law, but RSA never followed upon on their
demands for the state agency and council to address actions and
inefficiencies which substantially impacted Everybody Counts. 

"This is another astounding display of bureaucratic bigotry and
paternalism in a bungled attempt to cover their asses," Sykes said.
"Rehabilitation Services Administration (RSA) again demonstrates contempt
for the law with its attempts to silence the voices of Everybody Counts,
the only disability rights advocates in the state demanding that RSA
enforce the law." 

In a letter dated June 22, 2007, Congressman Peter J. Visclosky asked the
Department of Education to provide a briefing as to the status of RSAs
2004 report of findings about Indiana's operation of the federally funded
independent living program. 

"Everybody Counts has provided a wide range of programs and services,"
Visclosky said in a 2006 letter urging his colleagues to join him in
supporting proposed legislation to improve the rights of people with
disabilities. "This agency continues to strive for an improved quality of
life for the disabled of Indiana." 

Even one of the members of RSAs review team isn't clear about what's going
on. Evan LeVang, Executive Director of Northern California Independent
Living Services, was the official non-federal member during the monitoring
visit to Everybody Counts. LeVang said that he was surprised to learn
about RSAs written demand. 

"Frankly, I was extremely impressed with the staffs knowledge of
disability-related issues, and their application of the independent living
philosophy," LeVang said. "Everyone was highly professional and extremely
dedicated. It's obvious they go above and beyond the call of duty." 

LaVang said that he returned to his community with many new ideas and best
practices which he hopes to implement at his Center for Independent
Living. "Everybody Counts has the most incredible website I've ever seen,
and I don't know of any other CIL across the country that has so
successfully integrated the deaf community into their operations. Their
persistence has now opened windows of opportunity for real improvement in
local public transporation." 

Earlier this week, Everybody Counts began notifying everyone who has ever
applied for or received services, informing them of the government's
demand for unrestricted access to their files and explaining that the
Center has less than 30 days to respond. 

"Whatever I said to the people at Everybody Counts was done in confidence
and I would not want anyone else going into my files," said Ranesta
Austin, of Gary. The Center was responsible for Austin's recent escape
from a nursing home that actually had her arrested for closing her door. 

"As a person with a disability, I would not have signed a release of
information for anybody other than the people I specifically authorized to
look at my full file,"  said Leonard Sullivan, of Chesterton. "There are
many people in the community who feel the same way that I do. When people
deal with an agency such as Everybody Counts, they expect that information
to stay confidential." 

"When something is placed in confidence, it is supposed to stay that way
until I say so," said Katie Averett, of East Chicago. 

Some local residents have already expressed concerns about the possible
impact on Everybody Counts ability to maintain its leadership role in
working with defendants to implement the terms of the consent decree. 

"It took us 10 years to settle what could have been solved if the
transportation providers had just done what they were supposed to do,"
said Lorene Jackson, of East Chicago. "I don't want Everybody Counts to
have to spend another 10 years fighting for what's right." 

Jackson said that she believed many local residents probably have good
reason to fear possible retaliation for information included in their
records. For that reason, she said she supports Everybody Counts position. 

"They want to step on everybody's constitutional rights," said Melva Iris
Flores, of Hobart. "But we're not going to let that happen without a
fight." 

For more information, call 219/769-5055, or go to Everybody Counts website
at http://www.everybodycounts.org.