Ask seven leaders in the independent living movement to define a center for independent living and you’ll get at least 14 answers. First you’ll get the party line: As mandated by the federal Rehabilitation Act, each CIL provides four core service: skills training, peer counseling, information and referral, and advocacy. And by law, they’ll add, 51 percent of the board and staff must be people with disabilities.
After that, it’s a free-for-all:
“CILs shouldn’t take government money and shouldn’t provide services like case management or personal assistance.”
But if wasn’t for federal or state funding, they couldn’t exist, and who better to provide services than those who need them?
“A CIL’s only service should be advocacy, advocacy, advocacy, and to be good advocates we must pump up our self-esteem.”
Ah, but then how does the broader community hear about a CIL if its programs are turned in on its existing consumer base?
And so the debate goes. Who’s right? Who knows? Maybe they all are. You decide.
History and Strengths
The Independent Living movement has been around since the late 1960s, and the first CIL was founded in Berkeley, Calif., in 1972. In 1978 the Rehab Act was amended to fund IL programs all over the country, and soon even some nursing homes were awarded IL grants. There wasn’t much uniformity at all–people even disagreed on who counted as a consumer.
Linda Gonzales, executive director of the Association of Programs for Rural Independent Living, remembers those days. “When the Rehab Act was amended, I advocated for boards to be 51 percent people with disabilities because they were getting away with … Well, if you were a parent of someone with a disability you could count toward the 51 percent,” says Gonzales, a wheelchair user with muscular dystrophy. The Rehab Act Amendments of 1986 defined “consumer” to specifically mean “person with a disability,” and the Rehab Act Amendments of 1992 further defined what a CIL is supposed to be and do.
Gonzales says a strong CIL has lots of consumer involvement, such as workshops, support groups and disability action committees. Also, strong CILs have good relationships with surrounding service providers.
“A condition might exist where there’s a sense of competitiveness about the few resources that are there, so I think it’s important for centers to form relationships within the community of providers so that there’s a working relationship and not an antagonistic one,” says Gonzales, who runs a CIL mentoring program as part of APRIL. Weak CILs have what Gonzales terms a caseworker mentality. “They’re more interested in taking referrals from other organizations than going out and trying to draw in consumers themselves,” she says. “They’re not giving the power to the consumer, not giving the lead to the consumer, but are more concerned with statistics and plans.” In other words, they act like every other social service agency.
CILs should be places where people want to drop in. “There ought to be an area where people can just kind of hang out if they want to, have groups meet, find information, pick up brochures and maybe get onto the Internet,” says Gonzales. “The center ought to feel like someone’s home away from home, that kind of thing.”
Beyond the City Limits
When asked for an example of a strong CIL, Gonzales unhesitatingly brings up the San Juan Center for Independence in New Mexico. “They have done a lot of innovative things, like they have reached out to the Navajo Nation very well,” she says.
The Gallup, N.M., center focuses on disability awareness, making houses and other environments accessible, and pushing the Navajo Nation to adopt the latest ADA standards. The center reached out to each reservation chapter to introduce the idea of independent living, and the results were sometimes overwhelming–one chapter alone referred 99 people to the tiny satellite center.
It’s hard to be a Navajo with a disability, says Don Smith, 55, director of the Gallup center. “Disabilities, going back through our culture and social implications, are taboo. So it is really difficult for the community to accept the fact that people with disabilities can still function independently,” says Smith, a T4 para Navajo. “Taboo” in this context means if you touch a disabled person you might become disabled yourself. It’s a hard fear to challenge, and most likely if disabled Navajos themselves weren’t pushing against it, change wouldn’t happen. “I think I’ve diminished some of the stereotype of the taboo because I couldn’t sit still and just be cared for,” says Smith, injured in an auto accident when he was 18. He says everyone respects him, but the older people often respect him with a nod rather than a handshake, just in case.
Computerized Independent Living
There’s a different kind of feel to independent living in a big city. “We don’t have a community where elders pass down knowledge of ethnic, racial, religious or social behaviors,” says John Whitbread, 46, project manager of LILA (Living Independently in Los Angeles). “That’s what we feel LILA addresses. You can go online 24/7, you don’t have to identify yourself, you don’t have to go anywhere, you can do it from home and really try to get yourself up to speed quickly about the resources in your neighborhood.” LILA, a gigantic database, is a collaboration of the Westside Center for Independent Living and the University of California at Los Angeles.
There are nine independent living centers in Los Angeles county, and working well together didn’t come easily. “We never shared information. Never. But now we all use the same common database and share resources, consumers, advocacy issues, meetings, the whole deal,” says Whitbread, a C6-7 quad. Need an apartment, or to bone up quickly on parenting a baby with cerebral palsy? Ask LILA.
Still, as useful as LILA is, Whitbread wishes IL as he knows it in Los Angeles could be more … well, fun. “I wish we did clubhouse stuff. I’d love to have a pool table and a ping-pong table in here and a big TV. I really would,” says Whitbread.
Whitbread calls WCIL a quasi social service agency. “There are programs we administer that in any other population would be administered by a county organization,” says Whitbread. “That’s good, but I’m not getting paid those wages.” Other than LILA, WCIL doesn’t have much for people with SCI, unless a board position or low-paying job opens up.
“I think independent living centers need to do a stronger job of reaching out to and getting involved in the activities that people in the mobility community are involved in, like sports and rehabilitation, and sponsoring social activities and media arts or disability arts or whatever,” he says.
WCIL has evolved to serve mostly people with mental disabilities, says Whitbread. “I’ve been feeling kind of elitist lately as someone with a spinal cord injury, and I’m tired of being lumped in with others. I want some differentiation,” he says. “People with SCI have a higher employment rate, and I don’t think we get any credit for that at all.”
Marcie Roth, director of the National Spinal Cord Injury Association, sees Whitbread’s point. “I’m not seeing the ILCs in my community or any other community offering much that would be attractive to that white, middle-class male who happens to use a manual wheelchair,” says Roth. “But maybe there are a bunch of folks out there who don’t need additional support because we’ve done a decent enough job of eliminating the uncut curb, and of making it possible for the employer to see that person for the skills they bring to the table.”
Previous to directing the NSCIA, Roth directed advocacy and public policy for the National Council on Independent Living. Her first experience with IL was in 1982 when she worked at a CIL in Connecticut to close down institutions that warehoused people with developmental disabilities.
Roth thinks CILs can be “tremendously relevant” to people with SCI. “For people with spinal cord injuries, whose responsibility is it to fill in that period immediately after injury and prior to resuming or creating life in the community that looks like everybody else’s … whose piece is that?” she muses. Perhaps CILs could reach out more to newly-injured people with SCI.
Independent Living For Young People
Access Living in Chicago has got a little bit of everything going on–everything from Fair Housing enforcement to finding quality attendants are everyday activities. Access Living also finds, trains and supports young leaders with disabilities.
“We’ve been mired in the trenches, fighting hard for integration and deinstitutionalization, and all these leaders are passing away,” says the program’s coordinator, Rahnee Patricks. “So this is really important work, to foster youth who we hope will become new disability rights leaders.”
Every year Access Living identifies 20 to 25 disabled high school kids and brings them together to talk about disability history, advocacy and self-esteem. Some of these kids go on to college, and Access Living supports them by providing role models and peers to talk with.
“One thing that’s really important that I wasn’t so hot about when I started here on the youth team is the whole self-esteem thing. But I’m a reformed person about this,” says Patricks, a scooter user with arthritis. “I still have struggles with low self-esteem so I thought you really didn’t need it to be a leader, but you really do.” It wasn’t so long ago that Patricks, 31, went through what the youth are dealing with now. For example, one of the women wheelchair users in her group is now in her first year of college. “Her parents don’t want her to stay in the dorms, they want her to stay with them. And that’s exactly why I went to a commuter college–I was dominated about how my parents felt about my disability and how it would impact my education,” says Patricks. “And to hear how this girl’s mom was given the dorm information and they just never revisited it or the paper ‘got lost’ … I was like, I can’t believe this. She’s 12 years younger than me and it’s still going on.”
But the younger woman is going through it with the help and support of an older woman who’s had the same struggles. And that’s something.
Despite the best efforts of disability rights activists such as Whole Person CIL’s legal advocacy director, Kim Sterneman, the state of Missouri recently passed draconian Medicaid cuts. “They just lopped off entire Medicaid programs,” says Sterneman, who has L5-S1 degenerative disc disease. “You’re no longer going to be able to get oxygen or durable medical equipment such as wheelchairs unless you are a child, blind, or a pregnant woman.” Also, many people who aren’t poor will be edged off Missouri’s Medicaid personal assistance waivers.
Out of Missouri’s 21 centers for independent living, only six fought alongside Kansas City’s Whole Person CIL against the new law. In very real life-and-death struggles like the one just lost, centers for independent living are the only agencies involved that are owned and operated by disabled people. Yet the majority of the CILs found better things to do than to defend their constituency’s health insurance.
Each Missouri CIL is a subcontractor to provide payroll and case-management for the state’s personal assistance program. “That’s what made the battles so hard,” says Sterneman. “You are working every day with the people who are operating these programs and who are making decisions about who gets what services, and at the same time you’re trying to advocate for them to do something different, and stay friends with them.”
Maybe the outcome would have been the same had all 21 CILs been willing to maul the hand that funds them, but Missourians will never know. “The CILs are not doing it, and that’s the bottom line,” says Sterneman. “Centers need to be rebuilt and it needs to be done with private money. Taking the Medicaid money in my opinion was making a deal with the devil.”
But how can you rebuild centers with private money? “I don’t know,” she says.
Government Funded Freedom
Ask Jan Derry, director of the Morgantown-based Northern West Virginia CIL, if she thinks CILs should refuse government money and she says, “Oh, Lord, no!” Her CIL runs “real-choice” grants that get people out of nursing homes and other institutions, and if she didn’t run them, no one else would in her service area.
“We fought with our state to go after the real-choice grants,” says Derry. “A couple of years ago after the Olmstead decision, we started screaming at the state and harassing them and offering to write all the grants for them so that they would get all this money.”
The Olmstead Supreme Court decision acknowledged the right of people with disabilities to live in the most integrated setting possible. To help states implement this decision, the federal government created the real-choice grants. Derry’s rural West Virginia CIL’s loud and unruly activism led to the CIL receiving government funding to help disabled people live where and how they want to live.
Deinstitutionalization is a personal issue for Derry, whose mother left her immigrant Dutch father when she was 3. “Fifty-two years ago a 50-year-old man was not considered to be a viable parent, so Welfare came in and took us from our father,” says Derry. Misdiagnosed with mental retardation, Derry lived in an institution for 15 years until finally a psychologist admitted the diagnosis was incorrect. “I acted like everyone else in the institution because I was raised there,” says Derry. “Later in life I did become disabled. I don’t use a wheelchair, but I broke my neck and have a brain injury.”
As important as deinstitutionalization is to Derry, she quickly points out that she doesn’t pick her CIL’s battles. “Our consumer advisory council determines our priorities, and what they’ve identified as the biggest need,” she says.
Birthing a CIL
Starting the Freedom Center in Frederick, Md., was easy, says its director, Jamey George. There was federal money available for new CILs and the Maryland Statewide Independent Living Council determined that Frederick might be a good place to start one. So George wrote a grant, and the CIL was born.
Finding a board, staff and office all fell into place pretty easily, but it did take work to put other agencies at ease. “If centers for independent living are new in the area, people don’t understand the philosophy, so that made it harder finding acceptance among other already existing service provider agencies,” says George. “It takes time to earn respect from them.”
George’s CIL earned that respect by working with the other agencies for individual consumers and also by joining up with them toward systems change in the community. “Over time people realize that you are for real and here to stay. They realized we are not here to take away ‘their’ consumers, but to work together for the consumer,” says George.
Not long after George received the CIL grant she became a partner in two nursing home transition grants. “With both of those grants we were able to add two half-time positions for the sole purpose of getting people out of nursing homes and back to the community where they wanted to be and belong,” says George. Since the CIL opened in 2001 it has already helped 26 people with disabilities leave nursing homes, and the total for all of Maryland’s CILs together is 180 people.
George is deaf, and yet focuses her CIL on enabling people with physical disabilities to leave nursing homes. “I just happen to believe people who have disabilities have a right to live in the community with the same opportunities as everyone else,” she says. “I live in the community and I’m married. I have a grown child, I have a grandson, I go shopping, I go to church. I am living the American dream. Why can’t others have the same dream just because of their disability. You know?”
And, all debate aside, that is the definition of independent living.