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Issue 4




Meanwhile, in Pennsylvania . . .

Dueling State Plans??

SILC Purses:
State VR agencies interfere with consumer control

By Jennifer Burnett


"You're lucky I don't call you 'Kingfish.'"

A black man, Emas Bennett is no stranger to discrimination, but the last place he expected to find it was at a meeting sanctioned by the state and federal governments, under the authority of the Rehabilitation Act. Bennett, on staff at Everybody Counts, a Center for Independent Living in northwest Indiana, felt privileged this day in 1993 to be going with his boss, Teresa Torres, to a Council nominating committee meeting being held before the full Council meeting convened.

When Bennett and Torres entered the room, the entire group sized them up, got up and left to conduct the rest of the nominating committee meeting in the hallway.

It made Bennett nervous. He couldn't help but wonder if it was because they were all white, and he and Torres were not.

When the general meeting began, Emas Bennett introduced himself, spelling out his first and last names. The Council was chaired by Dave Nelson, who was the Executive Director of League for the Blind and Disabled, an independent living center in Fort Wayne. Jim Clifford was his Board Chairperson, and he, too, was a member of the state Council.

During the meeting, Clifford kept calling Bennett "Amos." Bennett kept correcting him: "My name is Emas -- spelled E-M-A-S."

Toward the end of the long meeting, Clifford once again referred to Bennett as "Amos." When Emas corrected him, Clifford snapped, "You're lucky I don't call you Kingfish" (a character on the "Amos & Andy," radio show of the 1950s, in which white men played "Negroes").

Bennett was appalled. "The thing that bothered me most," he recalled in a recent interview, "was that there were officials from the state vocational rehab agency there -- and nobody said a thing."

This story sounds like racism -- and it is likely that. But it's also a story about control -- who makes policy decisions for Indiana's independent living programs. Not the people who are supposed to by law, critics say, but a good-ol'-boy network that seems to care more about getting themselves jobs than about meeting the independent living needs of people with disabilities. And the problem's not confined to Indiana by any means.

Flash-forward to 1998. Everybody Counts has a great plan to open a Center in East Chicago, a city with state's highest concentration of blacks and Latinos -- over a million. They know it's a great plan because the federal Rehabilitation Services Administration has told them so. Of all the Indiana proposals to RSA, Ruben Center's ranks No. 1.

Not only will this Center serve urban Lake County, Indiana; it has a vision to support centers across the state, teaching them to do outreach to and serve black and Latino communities. The need for such technical support is backed up by the reports other Indiana centers for independent living -- called CILs -- submit to RSA. "Reports filed by Centers from other parts of the state told us we were on track," said Bennett. "Indiana's CIL network was telling the feds that they do not do outreach well to unserved and underserved populations. Ruben Center would address a serious deficiency."

Bennett was at the top of his game, ready for the challenge.

And then came the bad news: while Ruben Center was awarded federal funds in 1998 -- $47,000 -- it would get no Indiana state IL money. The Southern Indiana CIL, on the other hand, whose proposal was ranked second by RSA that year, would get a full $250,000 from the state. (And it continues to receive that amount each year, along with cost of living increases.)

This $250,000 amount is what Indiana's "State Plan for Independent Living" requires the state to give an independent living center. Indiana's State Plan for Independent Living, or SPIL -- the federally-mandated legal document jointly developed and co-signed by a state's SILC and its VR agency -- requires that Indiana's VR agency fund CILs at a base level of $250,000 yearly.

So why didn't Ruben Center get that funding? Because the state VR agency has never acknowledged it as a CIL.

The Ruben Center opened its doors in 1998, in a conveniently located office across the street from East Chicago's City Hall. Wheelchair accessible and on a public transit route, it began serving an urban East Chicago population. It's become an active organization, serving a primarily minority population, and also an unserved deaf population. While Everybody Counts serves as the fiscal entity for the Ruben Center, it has been building its reputation and developing its own identity. Each year it's gotten $47,500 directly from the federal government, but no state independent living money.

Finally, this year, Indiana's state Voc Rehab department says it will fund the Ruben Center at $150,000 -- the level of funding a new CIL gets in Indiana. But Ruben Center opened its doors four years ago. But then, it's not listed along with Indiana's other CILs on the official website of the state of Indiana, either.

Meanwhile, three new CILs have opened in Indiana in the last 18 months. None had been preceded by an opportunity for community input. There had been no peer review. They therefore opened in apparent violation of the state's own State Plan. Perhaps not coincidentally, the directors of all three are members of the SILC.

What is going on in Indiana is emblematic, say advocates, of the larger ongoing friction between "independent living" and "vocational rehabilitation" philosophies -- acted out with state independent living plans and state independent living councils.

Vocational rehabilitation got its start in 1918, when the federal government enacted a law to help out veterans returning from World War I. Its sole purpose was to provide vocational instruction to get people to work, and by 1920 it was expanded to include all citizens with physical disabilities. By 1943 a federal agency was established, but until the 1970s, the system was almost entirely managed by non-disabled people. Over the years, the vocational rehabilitation system has grown into a huge bureaucracy, last year costing the federal government nearly $2.5 billion.

The VR system has come under fire from advocates who question its effectiveness. Historian Fred Pelka, in his ABC-CLIO Companion to the Disability Rights Movement, writes that "the under-funded and over-bureaucratized rehab system continues to be a major frustration for many disabled people."

In the 1970s, a new concept began to shake up the status quo in voc rehab. The Rehabilitation Act of 1973 addressed the removal of barriers and discrimination, and the word "vocational" was dropped from its title to indicate a move away from its previous employment-based focus. A new concept called "independent living" -- spearheaded by Ed Roberts, Elmer Bartels, and other people with disabilities -- was working its way into the law, based on a new philosophy that people should be in control of their own lives.

In the 30 years since the first Center for Independent Living opened its doors in Berkeley, Calif., the independent living movement has grown in strength and numbers. In 1978, federal Rehab Services Administration funding became available for CILs, and now there are over 500 nationwide.

Amendments to the Rehab Act in 1992 mandated the creation of "statewide independent living councils," or SILCS, to be appointed by the governor and with responsibility for creating a state plan on independent living. Under the law, both the SILC and the state VR agency must sign off on the state plan, a document created every three years, which basically lays out the plan for developing independent living services in a state. The purpose of the Councils is to ensure that people with disabilities are represented in designing the state's services. The people to be served by a state's rehab services -- no matter what the service -- "must have a significant if not ultimate say in how those services are applied," says former National Council on Independent Living board member Kathleen Kleinmann.

That's the theory, anyhow.

Indiana's VR agency head, Marilyn Schultz, told the June 16 Gary, Indiana Post Tribune that the three new centers were funded by the state to promote geographic diversity. All three are in suburban bedroom communities across Indiana, and all three of their directors were on the SILC. The centers are not recognized by RSA as true CILs, however, for, under law, when a state gives less funding than the federal government to Independent Living, it is not allowed to create CILs. Last year, Indiana received $1.9 million from the federal government for Centers for independent living, but put only $22,000 of state money into independent living services. Thus, say critics, not only did Indiana violate its own state plan in creating the three new centers, but is out of compliance with the Rehab Act as well for doing so.

If you're out of compliance with the state plan, what to do? Change the state plan! Which is exactly what Indiana's State Council on Independent Living, under the leadership of current chairperson Al Tolbert, proceeded to do.

A year and a half ago, Tolbert, Executive Director of the Southern Indiana Center for Independent Living in Bedford, IN (with a reported budget of more than half a million dollars), attended a meeting of state CIL directors to discuss the Ruben Center. According to Bennett, Tolbert still doesn't recognize him as a CIL Director, and says that when he showed up at this important meeting, Tolbert asked him to leave. "He said, 'We was gonna have an open dialogue about the Ruben Center, but we can't do that if you're here. How can we talk about you if you are here?'" reports Bennett. "I was there with my sighted guide and we both said, in unison, 'Nothing about us without us.'"

Repeated efforts by Ragged Edge to get Tolbert to comment were unsuccessful.

Tolbert, say those attending, then wheeled out of the meeting. So did Dave Nelson. The other CIL directors stayed, and during this critical meeting turned to serious business of developing the new state plan. They agreed that, yes, indeed, Ruben Center WAS a CIL, and that yes, indeed, it needed to be fully funded.

This meeting was an eye-opener for Emma Sullivan, co-director of the Indianapolis Resource Center for Independent Living. She and some of the other directors had tried to talk Tolbert into staying at the meeting. "It seemed completely nonsensical to me," recalls Sullivan. "I couldn't believe that Mr. Tolbert was seriously telling Emas Bennett to leave this meeting." After this meeting, Sullivan became actively involved in what was going on with independent living in Indiana. She and other Indiana CIL directors formed a coalition called The Alliance for Compliance to ensure the federal law is adhered to.

According to Torres, that's the heart of the matter: the Rehabilitation Act is being violated, repeatedly, in Indiana. She's been Executive Director of Everybody Counts in northwest Lake County, Indiana (near Chicago), for a decade. "Everybody Counts has an advantage in that we are spiritually and geographically close to Chicago," explained Torres. But she also recognizes that this may put her CIL at a disadvantage politically in Indiana, given that the rest of the state is predominantly rural -- and conservative.

"We learned advocacy and independent living from some of the best, from Chicago ADAPT as well as Access Living and Progress Center in Chicago," she explained, "so we have different expectations of independent living than others in Indiana." Access Living and Progress Center are two Chicago-area CILs active in the national disability rights movement.

Torres says she has learned that one of the hallmarks of an effective independent living center is to make sure that people with disabilities have a voice in the multitude of planning activities that occur within their state, which is why her racially and ethnically diverse staff decided to go after funding for the Ruben Center in the first place.

Over the years, Everybody Counts and the Ruben Center have attempted to resolve what they view as inequitable treatment. Both Torres and Bennett have made sure that they are represented at SILC meeting and at state CIL directors' meetings. They attend any public meeting they can get to, as well as meetings with RSA. They, along with other Indiana CIL directors, have asked RSA to intervene more than once when they have felt that the Rehab Act was being violated by Indiana state officials.

And the Rehab Act has been breached -- repeatedly -- in Indiana, says Pat Stewart, Director of ATTIC, a CIL in rural Vincennes, Indiana. A few years ago, she says, RSA sent all SILC members a letter. "It advised the state to come into compliance. The next year we got the exact same letter, word for word. It was then that I had my epiphany.

"I read the Rehab Act from beginning to end," said Stewart, "and I realized that our state was messing around": the state was contributing such a small amount of state dollars to independent living that it was clearly violating the Rehab Act in creating new CILs. The Rehab Act is clear on this issue: states cannot create a new CIL when it contributes less funding to IL than does the federal government.

Stewart said she realized that the state's refusal to recognize Ruben Center, a CIL that RSA had funded, and its creation of three new CILs meant that wasn't complying with the federal Rehab Act..

The Alliance for Compliance has reached out to the national Independent Living community for support, and the DIMENET web site, (www.dimenet.com) run by Roland Sykes, has been documenting the events in Indiana, known as the "Indiana Situation," on a chat list reachable at http://www.dimenet.com/hotnews.

While the Indiana Independent Living movement dukes it out in Indianapolis, similar problems are beginning to crop up in other states. And RSA has come under harsh criticism in recent months as well for its failure to act on information that vocational rehab agencies in Indiana and Pennsylvania (see page 11) have repeatedly violated the Rehab Act.

The Alliance for Compliance and other advocates maintain that not only has RSA failed to act, but is ignoring the clear evidence that the agency itself has gathered.

Earlier this year, RSA asked Kleinmann to conduct an independent investigation of the "Indiana Situation," examining the operations of the Indiana Council on Independent Living. Kleinmann has had years of experience as a CIL director in Pennsylvania, has served on the National Council on Independent Living Board, and has been a member of the Pennsylvania SILC. The findings, based on Kleinmann's attendance at meetings of the Council and other independent living meetings from February to May 2002, are posted on the DIMENET hotnews website. "Problems related to the functioning of the Council have been reported and known to RSA for several years," Kleinmann reports, noting that RSA had "acknowledged with written findings in 1999 that serious problems exist." Among her conclusions and recommendations were that "RSA must take action to stop the State of Indiana from drawing down Title VII funds without adherence to the requirements of the law."

A year ago, the Alliance met with Tom Finch, Director of Special Services at the federal Office of Special Education and Rehabilitative Services, RSA's parent agency, to discuss their concerns about the development of Indiana's state plan, and about what they believe is manipulation of Indiana's SILC by the state VR agency. They reminded him that RSA had already begun a comprehensive review of Indiana's IL program.

Finch addressed concerns for which he had information, but acknowledged there were bigger problems. And "not just in Indiana," he said. "I think what we see from a visionary perspective is these are the kinds of things that can happen in other states. I think the other thing we are seeing is that there is a growing tension."

The tension is an old one.

Gil Selders, Deputy Executive Director of the SILC in Pennsylvania and a former state VR director, recalls former colleagues discussing Independent Living. "They would say thing like, 'Empowering people with disabilities is like turning the asylum over to the inmates.'"

Centers for independent living have a role and a responsibility in changing the system when it isn't meeting the needs of people with disabilities, say activists. Advocacy -- including individual and systems change advocacy -- is required under the Rehab Act as a "mandated core service" for an independent living center. Torres takes this requirement seriously, which may be another reason why she feels like she runs into so much resistance. Everybody Counts has not been afraid to sue Indiana over what it perceives to be the state's failure to obey the law.

"Of course I'm an advocate," says Torres. "It's one of my jobs as a CIL director. I'm not going to compromise my belief in independent living." Torres says that vocational rehab, as a system that's been around for more than 80 years, simply doesn't want to change.

Federal oversight for both IL and VR is conducted by the RSA through regional offices. "I believe that at the regional level, RSA is making some bad calls. While the state is exercising its will, RSA looks the other way," said Kleinmann. "RSA fails to understand the purpose of the law, the philosophy. How can they determine whether certain behaviors are consistent with the philosophy if they don't 'get it' at the most fundamental level?"

Kleinmann, Torres, and several other Indianans brought their concerns to Washington in June in a meeting with RSA Commissioner Joanne Wilson. Mark Bair, who was removed as Chairperson of the Indiana SILC by Indiana Gov. Frank O'Bannon late last year, was surprised at the tone of the meeting. "Everything was new to Commissioner Wilson," he said. "The RSA regional staff had not filled her in.

"We'd been told by the regional RSA people that there were Policy Memorandums on the Commissioner's desk." Bair said Wilson had insisted this wasn't the case, adding that "'nothing stays on my desk for more than half a day.'"

During this meeting, said Bair, Wilson promised she'd contact Gov. O'Bannon to let him know that Indiana's state plan was out of compliance, and that the appointment of the new Council Chairperson last November had been illegal.

"A letter is being sent to the Governor based on the preliminary findings of the RSA meeting," Wilson told The Ragged Edge. "I can't comment on the specifics of that letter as it is going through the approval process now. During the meeting with the people from Indiana, we made a list of concerns, action steps that we agreed to work on. And I promise that RSA will be following up on them. Things will be followed up on." Bair's removal had been done illegally, she said.

From the Consultant's Report

At the May [SILC] meeting, the Chairperson made reference to the Rules of Conduct that had been written on the chalkboard and asked all in the room to abide by those rules. A member of the Stakeholders who was blind requested that the words on the chalkboard be read. The Chairperson denied the request, and the Council members did not object. . . . The Council on a routine basis does not provide sign interpreters. One State employee who is deaf serves as a technician for equipment used by the Council when assigned to do so by the State. When he attends the Council meetings, he brings his own employment-related interpreters and the Council budget absorbs the cost of his interpreters during that period. Otherwise, an interpreter service is not reserved for the meeting for the routine purposes of the frequent Stakeholders who need interpreters. . . . Requests for alternate format of Council materials by the Stakeholders are ignored. . . .

From "Independent Consultant's Report on Indiana SILC," prepared by Kathleen Kleinmann, May 2002

The story is confusing for sure. There's a lot of legalese, and as many acronyms as you'd hear at a Congressional hearing. But this story has implications for all people with disabilities, say independent living advocates, even those who may not be directly involved in their independent living centers. Just like the whittling away of the ADA, a dangerous course of action is occurring -- and not just in Indiana.

"People across the nation need to pay close attention to what is happening in both Indiana and Pennsylvania," says Jim Glozier, who works for a CIL in Washington, Penn. "State VR agencies are learning the weak spots, exploiting vulnerabilities, and watching us self-destruct. We need to know what is happening, be angry about it if we don't like it, and demand accountability."

Meanwhile, Ruben Center has yet to see any state money.

Read "RSA Says Governors Can Pick SILC Chairperson," on the Dimenet Newsgroup.
Meanwhile, in Pennsylvania . . .

Pennsylvania's Statewide Independent Living Council is one of 14 SILCs across the nation who have become non-profit organizations. It has nurtured a strong consumer voice, offering statewide trainings and a network of grassroots community organizers across rural Pennsylvania. In September 2001, Pennsylvania's state plan was approved and jointly signed by Bill Skellie, then chair of PA SILC, and Stephen Nasuti, director of Pennsylvania's Office of Vocational Rehabilitation.

Several months later, PA SILC Executive Director Sandi Weber was informed that the Council's composition had been changed: the Office of Vocational Rehabilitation had removed six SILC members. It seems the regional RSA Office in Philadelphia, together with Pennsylvania's OVR, had decided to reduce the number of SILC members. The state plan was also altered, says Weber, in cooperation with the regional RSA office, and without knowledge or input from the SILC. "This is a clear violation of the Rehab Act," said Weber.

Weber's attempts to find out which SILC members have been removed has so far been unsuccessful; OVR will not tell her.

But even this outrage has moved onto the back burner as more recent developments have unfolded: In May, Weber was told, in a casual conversation with Nasuti, that the programs of the SILC would be put out for bid by the state -- ignoring the state plan, and in violation of RSA Policy Directive 01-05 (April 25, 2001) stating that when a VR agency conducts a competitive bid, it must be "based on criteria and selection jointly made by the [state VR agency] and [the] SILC." OVR then proceed to advertise the projects publicly for bid.

Weber and PA SILC Chair Philip Pressler met with Dr. Ralph Pacinelli of the RSA Regional office in Philadelphia. The meeting was far from successful.

In a letter to RSA Commissioner Wilson, Pressler wrote that "We have documents that will provide clear evidence that information provided to you by Dr. Pacinelli is grossly inaccurate." Pressler told Wilson that Pacinelli. had "freely admitted" that Pennsylvania's state plan had been altered without the SILC involvement.

Wilson responded by granting the SILC a meeting in June. At the meeting, Weber told Wilson that the Philadelphia RSA office and the state VR agency had changed the SPIL without consulting with the SILC, as requHired by the Rehab Act. Wilson, says Weber, appeared to be surprised and told them she'd look into it.

Meanwhile, bids are coming in for projects formerly run by PA SILC. United Cerebral Palsy of Central Pennsylvania, which, like UCPs nationwide, does not require consumer control, is bidding to run the SILC.

PA SILC sues its State VR Agency in July

For more on the ongoing controversy in Pennsylvania, visit the Dimenet SILC Newsgroup.

State plan v. state plan

For more than a year, Mark Bair chaired the Indiana SILC. He recognized that the public who attended the meetings were not happy with the status quo. He felt he had a job to do: to get the Council to agree on and submit a state plan on independent living which was truly reflective of what Indianans with disabilities wanted, one that would meet the needs of the disability community. So last summer, a committee was appointed to take the information from a public hearing process and turn it into a state plan.

The active members of the committee met several times. By the SILC's September 2001 meeting, the committee was ready to bring the state plan -- which, not incidentally, recognized the Ruben Center as a full-fledged CIL -- before the full Council for a vote.

The members of the Council sat silent. No vote was called. Meanwhile, another group was drafting another state plan.

A few months later, Bair got a letter from Governor Frank O'Bannon, removing him as chair of the SILC: "I am reclaiming the authority granted to the Governor under this Act [the Rehab Act] to designate a voting member of the Council to serve as chairperson of the Council," O'Bannon said in his letter. O'Bannon appointed Al Tolbert as chair.

With Tolbert as chair, the second state plan -- the one that did NOT recognize the Ruben Center -- was approved by the Council."

O'Bannon's action was illegal. According to the Rehab Act, if a governor has veto power in statute -- as does O'Bannon, and as do most other governors -- he doesn't have a right to select a chairperson. When Ragged Edge spoke with RSA Commissioner Joanne Wilson, she confirmed that Bair had been removed illegally.

-- J. B.

Jennifer Burnett often writes about disability and media.

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