Unlocking Independence
Centers Nationwide Have Resources, Experience, and Inspiration Ready to Help

Hundreds of independent living centers around the country abound with staff and volunteers eager to assist and enhance your life, and to provide the keys you need to open the doors to independence.

What exactly are these centers?

Perhaps the best way to describe an independent living center is by first looking at what it's not:

• It's not a living facility or group home for people with disabilities.
• It's not a resource where someone will do everything for you.
• It's not a place operated by people who have no idea what living with a disability means.

Yet, defining what an independent living center is and does isn't a simple task. Nearly 500 centers exist nationwide, and the services and resources each provides can be as varied as the communities they serve.

This much is clear: An independent living center (ILC, or CIL, short for center for independent living) is a community-based organization providing resources, services and advocacy by and for persons with all types of disabilities.

Core Services

ILCs also share the same four "core" services: peer support, advocacy, information and referral, and independent living skills training. Under the umbrella of these core services are dozens

of specific programs and resources, many of which are based on the needs and issues in the community or region the ILC serves.

Essentially, an ILC is a great place for anyone with any kind of disability who wants to get actively involved in disability issues; tap into life-enriching services; solve transportation, accessibility or employment problems; or get the hard-to-beat benefit of support and knowledge of a true peer.

It's About Choice

Today, most ILCs share the same basic philosophies and priorities that energized the Berkeley, Calif.,

"Our motto is, It's about choice,'" said Kathy Lentz, a senior program associate with Caring and Sharing Center for Independent Living in St. Petersburg, Fla. "We all have choices in life. We can either choose not to do anything, or we can go out there and shoot for the stars."

"The basic philosophy of independent living is that people with disabilities can do anything that anybody else can do, they may just do it a different way," said Ashley Rhinehart, independent living coordinator at Disability Link, a center that serves the metro Atlanta area (formerly called Disability Action Center).

Those attitudes are what's behind services and programs at ILCs, which can range from help with accessibility issues to employment, from counseling to home modification, and from grant-writing workshops to equipment loan closets.

Peers Who've Been There

What makes ILCs different from other organizations is peer involvement. Not only are ILCs charged with providing peer support as a service,

Kathy Lentz's work at Caring and Sharing Center for Independent Living in St. Petersburg, Fla., includes overseeing some special resources for women.

That means that someone who calls an ILC for information will likely be talking to a peer, said Sharon Byrkett, who worked for 12 years at the Indianapolis Resource Center for Independent Living, and is on the center's Board of Directors.

"Somebody will be there who understands where they're coming from. They won't have to explain themselves," said Byrkett, who has spinal muscular atrophy. "They don't have to try to explain their disability and what they can't do. We're more interested in what they can do."

Consumer Control

The vocabulary used by people involved with ILCs helps to illustrate this relationship. People who use services at ILCs are referred to as consumers rather than clients, customers or patients. "Consumers" conveys a sense of power and control.

"A consumer is someone who is equal. 'Client' means you are doing something for someone. ILCs don't do it for people, they help people to do it for themselves," Byrkett explained.

Keith Williams, associate director of the Northeast Pennsylvania Center for Independent Living in Scranton, said that when peers work together the result is unique insight and information.

"Consumer control is really the key cornerstone of centers and the independent living movement," Williams said. "You have people with disabilities on staff who are often service recipients of programs in the community already, and they are providing information to other people with disabilities on how to access different community services."

Williams, who has SMA, cites himself as an example. He's used his state's attendant care program for more than a decade.

"So when I talk with people who ask about Pennsylvania's program and what's available in the way of attendant care, I certainly understand where they're coming from," Williams said. "I know how vital it is to have that person come over and help you in the morning."

Along with enhancing the effectiveness of ILCs, the peer support service umbrella encompasses a large number of valuable programs.

At Disability Link in Atlanta, a system is in place to coordinate people who can serve as role models and

Ashley Rhinehart(center) and her colleagues at Atlanta's Disability Link encourage people with disabilities to become self-directed.

The goal is to send a message of "yes, you really can do this for yourself," Rhinehart said. "It lets people know they can do things, by example."

At Caring and Sharing, Lentz coordinates a women's group that meets monthly, and facilitates a monthly workshop on how to teach women with disabilities self-esteem.

"We call ourselves the Disability Divas, and we gain a lot of support from each other," Lentz, who has limb-girdle muscular dystrophy, said. "If there's a topic of interest, then I try my best to get a presenter to come in to talk about the issues at hand."

Advocacy at Many Levels

Advocacy is often a uniting force for centers and community members. ILC staffers work with consumers on self-advocating, which can be as simple as helping a consumer look up a phone number, or as complex as assisting someone to change an entire living situation.

Beyond the individual, there's plenty of advocating to do on community, state and national levels. Advocacy can mean making phone calls, letter writing, helping to educate people, or even picketing and protesting.

Williams specializes in systems change, and advocates compliance with the Americans with Disabili-ties Act and other pertinent laws that affect people with disabilities. He said that 50 percent of an advocate's time is usually spent on local and regional advocacy, and the other 50 percent on statewide issues.

Williams, who's been with the Northeast Pennsylvania CIL since 1987, organizes volunteer regional advocacy groups that meet monthly.

"They're the ones who determine what the issues are that they're going to address locally," he said. For example, paratransit service might be lacking in one area, while in another, transportation is good but several businesses might be inaccessible.

Educating Consumers and the Public

If a local business is found not to be ADA-compliant, advocates attempt to educate the business owner.

"We help to empower consumers with knowledge of the ADA and how to contact that business and say, Hey, did you know that you're not accessible?'" Williams said. "Let them know that, number one, the ADA is the law and you have to comply with it. But on the other side of the coin, we let them know what the advantages are of them complying." Among those advantages, Williams listed: more customers, tax credits or breaks for making a business accessible, and the often low cost of creating accessibility.

Advocates attempt to exhaust all other resources before resorting to demonstrations, he said. They also work to educate the public about disability-related issues.

"I'll speak with college classes, high school classes and even grade school-aged kids. I try to sensitize them about people with disabilities to remove attitudinal barriers," Williams said.

ILC staff members across the country unite yearly at a conference sponsored by the National Council on Independent

Rhinehart, an independent living coordinator enjoys helping and working with people.

Lentz said that Caring and Sharing staff members take advantage of that time to contact their state's representatives in Congress.

"We make sure we go visit our legislators and get them up-to-date on what our community needs and the priorities," Lentz said.

Williams said current major issues include getting national attendant care legislation passed, and redirecting federal Medicaid dollars into the community instead of toward keeping people with disabilities in nursing homes.

Programs for Long-Term Change

As the issue moves into the national spotlight, many ILCs already have programs focused on getting people who don't belong in nursing homes out of them.

Proponents argue that huge amounts of federal aid money would be more efficiently spent on personal attendant care than on full-time residency in a nursing home.

At Disability Link, Rhinehart said, staffers work to get eligible nursing home residents on waiver programs for different living situations — at home with attendant care, or in a residential home where care is shared.

Waiver programs often have multiyear waiting lists, which leaves time for the consumer to learn essential skills for living more independently.

"People who live in nursing homes for, say, over 10 years are used to a lot of decisions being made for them," said Rhinehart, who has a master's degree in rehabilitation counseling. "We have some activities for people who apply and are waiting, to get them thinking about what they're going to need in order to make their move."

Breaking the Cycle

Other Disability Link programs help people gain employment, find affordable housing and even learn such skills as how to use public transportation.

Underlying these efforts is the center's independent living philosophy, which encourages a person with a disability "to take responsibility for his/her life,

The effort to get people out of nursing homes shows how several ILC programs and philosophies often become intertwined. It also illustrates the variety of services one might find at an ILC.

Lentz cited a home-modification program that offers $2,500 grants to make homes more accessible to consumers in certain areas.

"We've built a lot of ramps and modified a lot of bathrooms," Lentz said.

"There was a certain consumer who hadn't been able to get out of her home for at least two to three years because she had no way of accessing the outside world. So we went in and built her a ramp and she was the happiest person you ever saw," Lentz said.

Other notable programs and services at ILCs, most of which are free of any charge to consumers, include: computer training and computer loan programs; career planning; legal services; youth-, student- and senior-specific services; assistive technology and other equipment services; small business development; and disability awareness sensitivity training.

Mutual Benefits

You're welcome to get involved with your local ILC, whether or not you need services.

"I would say that if anybody has any kind of disability, call the center in their area to see what might be available and what the resources are," Williams said, adding that there might be an advocacy group or a support group that would interest you.

"We all have barriers, and once you knock them down with your mind, you can achieve almost anything. It's what you set your mind to do," Lentz said.

The center directors all said they find their work at ILCs to be extremely rewarding and challenging.

"I worked one-on-one with people, and I enjoyed that — helping that person to express what they hope to achieve, look at goals in a different

way, and then take little steps to fulfill these goals," said Byrkett, who together with her husband, Gary (who has Friedreich's ataxia), also facilitates an MDA support group.

Byrkett said she thinks ILCs are particularly relevant to people who are affected by neuromuscular diseases as adults, and may be discouraged by new limitations.

"Many times it's frustrating. You want to go in and shake them. It's like, Hey, you can still do things! Your life is not over. You just need to find a different way of doing it.'"