Published by IL NET / ILRU NetWork Quarterly

Consumer control. Advocacy. Peer support. Self determination. Equal access. We know these as the values of the independent living movement. They form the philosophical foundation on which centers for independent living and state independent living councils build programs and services to promote leadership, empowerment, independence and productivity for people with disabilities.

Poll a sampling of CILs around the country and you'll find little, if any, disagreement on what the independent living philosophy is. But ask them what it looks like—how it translates into programs and services—and the answers get more diverse. Then it gets really interesting when the conversation turns to CILs as service providers—or not. Some IL advocates simply say that CILs should not be service providers. It's difficult—if not impossible—to advocate to change a system you're a part of, they say.

Others take a moderate, yet cautious, position that it's probably okay for CILs to deliver some types of services. But even they have different ideas about which services are appropriate.

Then there are the CILs which have entered the service delivery arena with enthusiasm. This group includes advocates who say the IL philosophy and service delivery not only can coexist­­—they must comingle to advance IL principles into mainstream society.

Beyond the philosophical issue is a practical concern about the business of being a business. CILs are expected to use sound business practices in their day-to-day operations. But many advocates—wherever they stand on the philosophical spectrum—agree that successfully launching and managing a new business takes basic business practice to an entirely new level. And that raises a whole new set of concerns. Are CILs really equipped to run businesses? What do they need to know, do or learn in order to be equipped? Can the IL philosophy survive in a business environment? What's the proper balance and how do you maintain it? These are among the questions that CILs and SILCs are asking more frequently as the independent living movement faces changing financial and community environments. They are part of a conversation that is being heard more often when IL advocates gather.

In this issue of ILRU Network we offer a range of ideas, opinions and resources which address the philosophical and practical aspects of the subject. If you're looking for the definitive answer to the question, you won't find it on these pages or in any report or article. As with so much else in life, this is an issue that has lots of gray area. Your board, your constituents, and you must decide for yourselves which shade of gray looks best. With this collection of articles, what you will find is a fair sampling of the variety of shades which make up yet another interesting facet of our diverse IL community.

NetNotes

Where does your CIL stand on the issue of "service versus advocacy?" Do you have a great idea for a business? We'd like to know! Send us your comments (no dissertations, please) and we'll post them with any others we get on the ILRU NetWork Online website.

An upcoming issue of ILRU NetWork will highlight how State Independent Living Councils incorporate public input into their planning processes. Do you have questions or concerns about getting meaningful input? Does your SILC have a process that works especially well? We'd like to hear from you as we develop articles for this issue. Don't wait too long; we're working on a fast track.

Our premier issue of ILRU NetWork featured Kelly Dillery, the Ohio "wheelchair mom," and her struggle for independence in Sandusky. We're grateful to Kathleen Kleinmann, executive director of Pennsylvania's Tri-County Partnership for Independent Living, for writing a wonderful personal account about the advocacy effort to support Dillery. We didn't have enough space to run Kleinmann's entire article in the newsletter, but there's plenty of room in cyberspace. Check out ILRU NetWork Online to read the whole article.

To access ILRU NetWork Online, point your browser to ILRU.ORG and follow the links to Network Online. To send us your comments and story ideas, check out the back page of this newsletter for all the contact information.  

Advocates urge caution to uphold IL philosophy and values

Patricia Puckett—Georgia

"When you are fearful the dollars will dry up, you might not advocate as strongly against a system. You're in a compromising position. You need to be free to kick butt."

With that, Patricia Puckett, executive director of the Georgia State Independent Living Council, states in a nutshell one of the central issues in the "service versus advocacy" discussion. In fact, the potential to compromise IL values to keep funding sources happy was the most often cited concern among IL advocates interviewed for this newsletter.

Puckett's viewpoint is representative of many in the IL community who approach the concept of going into business with caution. She's not strictly opposed to all business ventures and, in fact, sees opportunities for systems change in some. But it's not a decision to take lightly.

"CILs must be conscientious and careful" when deciding whether or not to take on a business—especially one that provides services to consumers, she says. CIL staff and board members need to have "lots of discussion" about it, she advises. "They need to ask themselves what exactly does co-optation look like? What are we going to do to prevent being in a compromising position?"

Puckett believes that CILs may also undermine their advocacy role when they provide services that other entities are clearly mandated to provide. "If there's a mandate that a public service be provided by the city, state or county," she says, "the SILCs' and CILs' role is to make sure the system is doing its job. If the mission is to assure equal participation for people with disabilities, setting up a special and/or separate system is not meeting the mission."

"On the other hand," Puckett says, "if there is no mandate and there's an opportunity to move a system forward, the CIL might accomplish that by providing a service. When it comes to creating a new reality, sometimes you have to lead the way."

Ruth Stegeman—Michigan

"We're the ones who are going to have to make changes in the system. Our job is to get those other organizations to do it. We are not gap-fillers."

Ruth Stegeman does not embrace the notion of "business as a systems change strategy." She is concerned that advocacy may take a back seat when service or business interests dominate a center's attention. And in her view, that could have negative implications for consumers.

Stegeman, executive director of Lakeshore Center for Independent Living in Holland, Mich., says she bases her position on the independent living philosophy that the problem is in the environment, not in the individual. "It makes sense," she says, "that we focus on our unique role of addressing systems change.

"The solution to the problem is self-help and consumer control. This means people have both rights and responsibilities. Systems advocacy offers us one of the best ways to provide people the opportunity to practice their rights and responsibilities—to participate in their own liberation."

Stegeman says her center routinely involves consumers in its systems change advocacy activities. "They don't learn those skills if they don't have the chance to practice them," she says.

Beyond that, she says, CIL staff providing services to consumers could easily fall into the role of professional service provider. "Our role as staff is to be a peer—not a professional," she says. "Why would people want to come in and hang around their case managers?" Stegeman says many of the services CILs might opt to provide require assessment and evaluation, activities she thinks are not in keeping with a true peer relationship.

In Stegeman's view, building up business can detract from another important element of the independent living philosophy—the grass roots focus. "A big business is not grass roots," she says. "We have to come to terms with that. There's always a new opportunity out there. Your budget can get big pretty fast. You get bureaucratic, more structure, more policy. It's hard to maintain the grass roots feel. It's hard to maintain staff involvement with consumers."

Stegeman recognizes that CILs are compelled to generate revenue. Rather than take on businesses that might detract from the center/consumer relationship, she proposes there are other avenues open to CILs. "I think CILs are in a better position to promote small businesses."

Stegeman's own center operates an information and referral business for clients of Michigan's vocational rehabilitation agency. "It's a real advantage to us. It allows us to do outreach, plug who we are and teach consumers how to use the resources available to them," she says.

Does that present a problem when her center needs to advocate with the voc rehab agency on an issue? Stegeman says it doesn't. "We have a great relationship with VR," she says, "and our advocacy with them is always within that context. It's not in-your-face advocacy. That's how you do a lot of advocacy anyway—through relationships."

Gina McDonald—Kansas

The Kansas Association of Centers for Independent Living has advocated for CILs in that state to become providers for an array of services including: employment training for VR clients, personal assistance payroll agents for home and community-based services waivers, individual and systems advocacy, independent living skills training, I&R and peer support training for people with developmental disabilities, welfare to work training, and assistance to juveniles with disabilities in foster care.

Gina McDonald, director of the statewide association, believes it is possible for CILs to provide services and be effective advocates as long as their primary focus is systems change. "CILs I consider to be the best do just that," she says.

"They provide services, but not as a primary goal," she continues. "They charge funding sources for services, and then they pump the earnings back into an advocacy agenda. And they don't accept funding from sources that seek to minimize their capacity to engage in advocacy efforts."

If those comments lead you to think McDonald is firmly entrenched in a pro-business mentality, think again. She and KACIL members have a lot of concerns about being service providers.

First, there's the relationship between the consumer and provider. "If you are the provider, who will be the advocate for the consumer who is unhappy with your services?" McDonald asks.

Then, there are the stereotypes and myths. "If we provide services only to people with disabilities, we promote the idea that people with disabilities need segregated, special services. That promotes the myth that we are somehow `broken' and need to be `fixed.'

"If we continue to provide the services disabled people need, where is the impetus for the community to provide those services?" she continues. "If we provide transportation for disabled people in our community, then why should the community work to make transportation accessible? And why would we want to put ourselves out of business?"

McDonald also has concerns about the strings that may be attached to some revenue sources. It's easy to become "so tangled in service dollars" that CILs may be fearful of taking on advocacy activities that might upset a funding source. She adds that the rules that go along with certain funding streams may limit the ability to "really ensure consumer control."

McDonald points out that the IL philosophy embraces the concept that the problems people with disabilities experience are in society—not in the people themselves. Yet, she says, many service dollars are devoted to "fixing" people and not the system. Centers may take those dollars with the best of intentions, she says, and then find themselves focused on fixing the people and not systems change.

IL Chief Says RSA is OK with CIL Business Ventures
Nelson says balance is key to local decisions

Title VII of the Rehab Act offers a "wonderful smorgasbord of opportunity" related to services and businesses CILs might choose to get involved in. So says John Nelson, chief of the Independent Living Branch of the Rehabilitation Services Administration, when asked where RSA weighs in on the service delivery question.

"As long as CILs are taking care of business in providing the four core and two other IL services," Nelson says, "RSA doesn't care one way or the other if they choose to venture into the business world. They can do what needs to be done to serve people with significant disabilities."

"CILs are small to medium sized businesses. They should determine what changes they want to make and then blend funding sources, services and advocacy to achieve those locally determined goals," he says.

The federal regs governing CILs features a long list of independent living services beyond the core services, many of them seemingly good potential business opportunities. Nelson says there's really no limit to the services centers can provide. "The list only stopped there because we couldn't think of any more."

And if a center makes money providing a particular service? "It's not a problem from our perspective," Nelson says. "In fact they are mandated to attempt to raise funds and can use Part C funds to raise other funds. It seems to me centers would want to make money beyond basic grant dollars so they can do more advocacy and other things they really want to do."

Acknowledging the limitations on how government dollars can be spent, Nelson suggests basic grant money may best be used to cover essentials like rent and salaries. By generating other non-program income, he says, CILs can accomplish things they can't do with federal dollars—like lobbying within IRS guidelines.

Nelson says he is well aware of the discussions around "service versus advocacy" and the philosophical distance between some centers. "The final balance is really up to each center to decide for itself," he remarks. "However, because the four core services include both services and advocacy, RSA would have as many concerns with a CIL that only did IL services as a CIL that only did advocacy.

"There's no question some centers have done a real good job of doing both—it can be done," Nelson adds. "The CILs that do well with both tend to be some of our largest and most successful in terms of consumer control, services, advocacy and funding."

There's one notable exception to the kinds of services CILs can provide—residential housing. In 1992, the law was changed to prohibit CILs from operating or managing housing or shelter.

"If you're providing somebody a residence, sooner or later you'll become an evicting landlord," he says, adding that's more control than CILs should have over consumers. "How can a center help a consumer be really independent if it controls the person's housing?"

When asked how housing differs from some other services CILs can legally provide to consumers, like personal assistance services or case management, Nelson acknowledged it's a fine line. "But housing is too important and the slope is too slippery when we begin thinking about regulating how CILs could provide residence to individuals without becoming nursing homes or homeless shelters."

Bob Kafka on "Empowering Service Delivery"
CILs as PAS Providers next Evolution of Independent Living

“While Nero fiddles, Rome is burning.”

That’s Bob Kafka’s take on the independent living community’s ongoing discussion about “service versus advocacy.” While CILs debate philosophy, he says, the health care industry is having its own discussion about how to provide long-term services to people with disabilities in a managed care environment. It’s that conversation Kafka believes independent living and disability rights advocates should be involved in if they are truly interested in creating systems change.

In an article published in Ragged EDGE (Sept./Oct., 1998), Kafka, national organizer for ADAPT, wrote: “Unless we people with disabilities are at the table telling managed care corporations what concepts we want in a health care delivery system unless we ourselves start the process of becoming what I call ‘empowered service deliverers’ ourselves, we will continue to be at the mercy of health care providers who understand little about our functional support needs, and even less about the independent living philosophy.”

Kafka believes the changing health care environment offers a prime opportunity for CILs to show the world how long-term services—particularly personal attendant services—can and should be delivered.

He sees this as a chance to finally move away from the much-hated medical model to the consumer-driven, empowered PAS system the independent living community says it wants. The medical model has prevailed, he explains, because there has been no viable alternative. CILs can provide the alternative by taking over the delivery of personal attendant services.

Of course there are risks associated with being service providers, Kafka says, but the benefits far outweigh the them. “Managed care providers struggle with how to move people into the communities,” he says. “CILs know how to do that. They know how to locate accessible and affordable housing, assistive technology and all the services and supports people need.”

Beyond that, Kafka says, taking control of the service delivery system would result in a significant shift in the balance of power between current PAS providers and the disability community—especially when the billions of dollars people with disabilities earn for traditional providers find their way into the coffers of the disability community.

“Delivering the services ourselves,” Kafka says, “would allow us to confront the paternalism of the current system and make changes from the inside. It would also give us revenue to put back into our organizations to fund important advocacy efforts like ADA, housing and community organizing.”

Kafka disagrees with those who suggest his vision is out of bounds in terms of the independent living philosophy. His is the same philosophy, he says, but with a bigger target. “In addition to empowering people, it empowers an entire system.” And that, he says, “is the next evolution of the independent living movement.”

(A link to Bob Kafka’s Ragged EDGE article is included on the ILRU NetWork Online website http://www.ilru.org. -Ed.)

Temp staffing service connects ABIL with community
CIL director says business and advocacy work hand-in-hand

Looking back on it, Susan Webb sees the loss of a major contract as one of the best business opportunities Arizona Bridge to Independent Living (ABIL) has ever had. Webb, the center's executive director, and her staff were sent scrambling when the county pulled the plug on a major personal assistance services contract in 1993.

That contract was a major piece of ABIL's business plan and approximately 40 percent of its revenue. Without that funding, ABIL needed to find something else to do with the staff and service system they'd put together to support the county contract—not to mention something that could replace the lost revenue.

To ABIL, the structure left behind by the PAS contract most closely resembled a temporary staffing agency. So they started one. The new business, modeled after a California program, connects people with disabilities with employers who have temporary jobs to fill.

Beyond meeting an immediate business need, Webb says the temp agency also provided ABIL the opportunity to educate a whole new segment of the community. ABIL joined the Arizona Association of Temporary and Staffing Services. "They taught us about the temp industry," Webb says. "They enabled ABIL to serve people better."

But the real important thing, according to Webb, who now serves as association president, is what ABIL brought to AATSS. "As an association," she says, "one of the biggest things they do is legislation."

With its strong background in legislative advocacy, ABIL had something to offer the association. "We brought value to them," Webb remarks. "That raised our status in their eyes as a professional organization. Because we're in their business, we're their equal."

Seeing people with disabilities as competent, professional business people was a new experience for many of the association members—a worthwhile payoff, Webb says. Another payoff is the contact with people and businesses who have helped place people into jobs.

In return, ABIL routinely provides association members with advice on such things as work place accessibility, interpreters, assistive technology and accommodations.

ABIL's success as a temp agency with expertise in serving people with disabilities has caught the eye of other industries and allowed the center to expand its business in a big way. Fortis Benefits, representing the Arizona State Retirement System, is referring long-term disability claimants to ABIL. For $65 per hour, center staff provides services to help claimants return to work. "Our experience and understanding of disability," Webb offers, "makes us uniquely qualified for the job."

It turns out the county must think so, too. The PAS contract, the loss of which prompted ABIL to seek new business territory, is back in the hands of the CIL. The center is also a Projects With Industry site and continues working on the pilot project with Fortis.

Does all this focus on business distract from the main purpose of the center? Does the funding relationship with entities such as the county put the CIL at risk of compromise?

Webb's response is simply "no." "CILs can do very good advocacy and do services," she claims. "Our business activities enhance our advocacy and it doesn't prevent us from doing what we need to do."

Webb points to a current advocacy campaign focused on a county assisted living program. She says the county doesn't expect the center to drop its advocacy role just because it has the big PAS contract.

"You don't have to be co-opted," she says. "Just as there are certain contributions we won't go after or accept, there are certain business relationships we won't pursue if they might require us to compromise our philosophy."  

Service and aggressive advocacy coexist at Topeka center

Almost every conversation about services versus advocacy—no matter who's doing the talking—includes at least one reference to the Topeka Independent Living Resource Center. Known nationwide as an aggressive and outspoken advocate, the Kansas center is also well known as a major service delivery organization.

The Topeka CIL brings in close to $12 million annually—income generated by a host of services. The biggest is a contract with Medicaid to provide fiscal intermediary services for PAS consumers. The center also provides legal services for persons with civil rights or other disability related problems, sign language interpreting, braille printing, conference planning, consulting and public speaking.

"We charge a fee for anything we can," says Mike Oxford, executive director. "I subscribe to Tom Sawyer's theory that if you do something for free it has no value." He is quick to point out that consumers get all the services for free. "We charge the people that should be helping to pay for them."

Oxford has heard the cautions and knows the concerns—and says they're legit. "You will be in danger of being co-opted. There are limitations that come along with some funds. It does take a lot of extra work to keep a business up and running."

But for Oxford there isn't an alternative. Big time advocacy, he notes, takes big time bucks. "Reliance on federal grants alone keeps us small and weak," he says. There's foundation money out there, he adds, but most foundations put strict controls on their dollars and "they're not going to fund strong, effective advocacy." Centers can generate some income by getting grants, he says, but that's not a reliable source of funding and , again, "you're limited on how you use the money."

For Oxford, the income is only a means to an end—that being strong, systems advocacy. And earning the income by providing services within the system, he claims, puts you directly in touch with the very thing you want to impact. "How the hell do you really know what to advocate for if you don't know how the system works?" he asks.

As an example, Oxford offers a situation that came to light as a result of his center's legal services. "We found out that people with certain disabilities were automatically having their kids taken away and placed in foster care," he recalls. "We would have never known about that if we weren't providing that service and involved in the legal system. By being part of the system we are more tuned in, smarter, more effective."

If an independent living provider network had been in place in 1965 when Medicaid was passed, Oxford suggests, "maybe nursing homes wouldn't have been the only long-term care option covered by the law."

It might be too late for that, but Oxford still envisions a national network of CILs providing services to consumers. "Part of our responsibility is to make sure the system is meeting the needs of people with disabilities," he says, "but what if the system isn't prepared to meet the needs? We can advocate all day long that we have a right to a service, but who's going to actually deliver it? For example, we have a right to attendant services, but attendants don't just pop out of the woodwork. Somebody has to get the service out there, why shouldn't it be us?"

When asked what advice he has for CILs considering taking the plunge into service delivery, Oxford replies, "You have to have a large vision and you have to be able to stick with it."

In Topeka's case, the vision wasn't about business—it was about human rights. It started in the mid-80s when the CIL decided to work to change the Kansas nurse practice law to allow people with disabilities to direct their own attendant care. "We didn't know it was a business opportunity," Oxford says. "Then we got the law changed and the demand was greater than we could have ever imagined."

In 1991, the center set out to meet that need by launching its PAS program. The other businesses have come along since. Oxford acknowledges, "it's been a lot of work and we haven't always been perfect."

But the results, he says, are worth it. Most of the income generated from these programs goes back into operations, but Oxford says the rest goes straight to improving services to consumers and advocacy. "It allows us to have four times the IL specialists to serve consumers. It allows us to have adequate training for our staff. We have decent equipment. And it allows us to contribute big bucks to our state association to fund things like advocacy on the Olmstead case and to assist organizations like Concrete Change."

In 1991, Topeka CIL served 60-80 consumers. Today, Oxford says, "we serve thousands." Our service delivery has allowed us to do more good for more people than ever before."    

DIMENET: Disabled Individuals Movement for Equality NETwork
Internet offers CILs a cyberworld of opportunity

When Roland Sykes was an Oklahoma CIL director in the 1980s, he noticed a disturbing trend. Center staff handling information and referral calls would dutifully track down requested information, respond to the requester and then, toss the information. Invariably, some time later, another caller would need the same information. The process was repeated—a number of times a day—for however many staffers were handling I&R calls.

This bothered Sykes, but not just for its inefficiency. It seemed to him one of the biggest products CILs have to offer is useful, reliable information about disability issues. Yet, it was being carted away with the daily trash. Sykes realized that without a system to collect, organize and store the information, the scenario was destined to be carried out time and time again.

He got the chance to do something about it in 1985, when he landed a grant from the National Institute on Disability and Rehabilitation Research. He used the funds to develop a computerized system that would allow center staff to capture, store and share I&R information. Initially known as the National Council on Independent Living Computer Network, today we know it as DIMENET.

In layman's terms, DIMENET is a package of computer hardware, software and databases from which Sykes says a CIL can run its "all of its critical functions" including I&R, library materials handling and mailing list management. And, it's fully accessible to people with disabilities for whom Windows-based technology just doesn't cut it.

Sykes says that DIMENET has the capacity to allow a CIL to put important and useful information on the desktop of every employee all the time. Instead of scribbling it on sticky notes and scrap paper, staff enters information to the database—which every staff member can access and use.

Connect that system with an Internet Service Provider, and CIL consumers who need information on a given topic have access to it. "A means of empowerment," Sykes says. And with the ability to combine all the local databases in one place, DIMENET becomes a comprehensive, nationwide resource for disability and independent living information.

For many CILs, those features in and of themselves may make DIMENET an "idea worth pursuing." Sykes says it doesn't stop there. For centers looking to develop a business that can generate a lot of income, he says, DIMENET is a great prospect. Buying into the network allows centers to become Internet service providers, website developers, chat room hosts, e-mail providers and more to their communities. Centers provide these services as premiums to subscribers in exchange for donations.

The emphasis on accessibility for users extends to accessibility for people who support the operation. For example, Sykes says, it is very easy for consumers to learn the skills to develop accessible websites. Having learned those skills, they can make money designing websites for customers. The opportunities are only as limited as the centers' imaginations.

Currently six CILs are DIMENET sites. Sykes hopes that number will grow as centers become more comfortable with computer technology and with the notion of relaxing control over information they are accustomed to having to themselves. Getting involved with computer technology and the Internet is imperative, he says, if we want to be players in the society of today and the future.

(Find information about DIMENET at http://www.tnet.com/dimenet/ —Ed.)  

MetroWest Launches DIMENET and Cyber-Business

MetroWest Center for Independent Living in Massachusetts is one of DIMENET's newest sites. Paul Spooner, executive director, gets pretty enthusiastic when he talks about the venture's immediate success—or its prospects for the future.

As part of DIMENET, MetroWest is an Internet service provider. They sell server space, e-mail boxes and web page design services. Their services are not limited to the immediate independent living community. "We've picked up a lot of customers that had inaccessible websites," Spooner says. "When we pointed it out, they paid us to fix them."

Cyber business has enlarged MetroWest's annual budget considerably. Seven years ago, it was $150,000, the smallest CIL budget in the state. Today it boasts a $400,000 budget, and Spooner says things don't appear to be going anywhere but up.

The beauty of it, according to Spooner, is that the earnings allow MetroWest to offer more and better information and referral services to consumers. In fact, it was the center's focus on I&R as a core service that eventually led to the decision to go into it "big time." "We sell it so we can give it away to consumers," Spooner says.

An important part of starting a new business is finding a product niche that no one else has. The creation of DIMENET and its capacity to deliver information prompted the MetroWest staff to look at the I&R services they were already providing in a new light—as a marketable product.

MetroWest's initial cash investment to join DIMENET was $40,000, most of which purchased computer equipment. Perhaps more important than the financial investment, though, was the center's intense planning process that took place even before the decision to go into business was made.

"It's a difficult blend of skills and knowledge to be an advocate and a provider of any kind of service," Spooner says. "Taking on a business drives you to produce different funding, drives your center's agenda and has profound effects on what you do in the long run."

Does that mean CILs should shy away from business opportunities? "No," replies Spooner, "but they need to think it through carefully."

Running a business does not have to detract from the quality of independent living services a center provides, Spooner claims. The key, he says, is thoughtfully examining your values and mission and developing a plan that will allow you to maintain them, even as you launch into a new business.

"Do they have a strategic plan? How do they want the community to perceive them one, five or ten years from now? Do they want to be known as the service provider entity? Or do they want to be known as the place to go for things like advocacy and I&R? Will it enhance our values and goals or will it detract?"

Spooner says he and his staff worked through these and other questions with painstaking care before deciding to join DIMENET. The result was a carefully drafted and strictly adhered to plan that guides all of their decisions related to the business.

There might have been a different outcome if the business in question had been something like personal assistance services or case management. While he points to several centers which successfully balance the advocate and service provider roles, Spooner sees that road as having "lots of dangers and traps." All the more reason, he says, to look at other opportunities that aren't so closely related to consumer services.

SOURCES & RESOURCES

For more information about the stories in this newsletter, go straight to the sources. Thanks to the following for sharing their valuable time, knowledge and experience in our effort to advance the independence of all people with disabilities.

Bob Kafka
National Organizer
ADAPT
1339 Lamar Square Blvd., #101
Austin, TX 78704
(512) 442-0252
bkafka@juno.com

Gina McDonald
Director
Kansas Association of Centers for Independent Living
1423 West Crawford St.
Salina, KS 67401
(785) 825-2675
kacil@midusa.net

John Nelson
U.S. Dept. of Education/OSERS
Rehabilitation Services Administration
Independent Living Branch
Washington, D.C. 20202-2741
(202) 205-9362
John_Nelson@ed.gov

Mike Oxford
Executive Director
Topeka IL Resource Center
501 SW Jackson #100
Topeka, KS 66603
(785) 233-4572
mlox@tsbbs02.tnet.com

Patricia Puckett
Director
Georgia State Independent Living Council
3125 Presidential Pkwy #200
Atlanta, GA 30340
(770) 452-9601
silcga@mindspring.com

Paul Spooner
Executive Director
Metro West CIL
63 Fountain St. #401
Framingham, MA 01702
(508) 875-7853
pspooner@mwcil.org

Ruth Stegeman
Director
Lakeshore Center for Independent Living
426 Century Lane
Holland, MI 49423-3879
(616) 396-5326
ruth@egl.net

Roland Sykes
DIMENET
6256 Ramblewood Dr.
Riverside, OH 45424
(513) 237-8360
rsykes@gimp.com

Susan Webb
Executive Director
ABIL
1229 East Washington St
Phoenix, AZ 85034
(602) 256-2245
azbridge@abil.org

For more information, contact:

The mission of the IL NET is to provide training and technical assistance on a variety of issues central to independent living today--understanding the Rehab Act, what the statewide independent living council is and how it can operate most effectively, management issues for centers for independent living, systems advocacy, computer networking, and others. Training activities are conducted conference-style, via long-distance communication, webcasts, through widely disseminated print and audio materials, and through the promotion of a strong national network of centers and individuals in the independent living field.

ILRU is a program of The Institute for Rehabilitation and Research (TIRR), a nationally recognized, free-standing medical rehabilitation facility for persons with physical and cognitive disabilities. TIRR is part of TIRR Systems, which is a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities.

Substantial support for development of this publication was provided by the Rehabilitation Services Administration, U.S. Department of Education. The content is the responsibility of ILRU and no official endorsement of the Department of Education should be inferred.

©2005 ILRU Program, All rights reserved