California is often looked at by the rest of the country and maybe the world, as a leader and an innovator. In the ’60s and ’70s Berkeley was known as the home of radical politics and progressive social movements. Mario Savio and the 1964 free speech movement set the tone that led to the development of the model for the Yuppies and the Black Panthers, particularly influencing UC Berkeley campus anti-war movements and tactics for student involvement in ethnic and racial social movements. But many do not know that an independent living movement led by Ed Roberts also took root at Berkeley in the early ’60s.
The university hesitated to admit Ed because of his disability. Because he had contracted polio as a teenager, he had virtually no functional movement and was dependent on a respirator to breathe. “We’ve tried cripples before and it didn’t work,” said the university. They reluctantly admitted Ed in 1962 and arranged for him to live in the campus medical facility, Cowell Hall.
Ed was quick to grasp that the struggle for independence was not a medical or functional issue, but rather a sociological, political, and civil rights struggle. Additionally, Ed’s involvement with Gini Laurie’s Toomey J. Gazette (later named the Rehabilitation Gazette) reinforced in his mind that credible information and new, innovative ways of managing life with a severe disability were best relayed by peers with similar disabilities. Gini’s publications were essentially forums for people with polio and various disabilities to share how they managed their lives and maintained their productivity with severe disabilities. This notion was the basis for development of the Independent Living Center (ILC). Today, there are hundreds of ILCs that exist throughout the country.
ILCs work with people with disabilities of all ages and all disability types. Core services include peer counseling, independent living skills counseling, information and referral, and advocacy. Other services offered include helping people transition out of nursing homes, housing, personal assistance care and technology. All programs, in one capacity or another, are designed to help an individual become as independent as possible.
ABILITY’s Chet Cooper spoke with Louis Frick, the new director of Califonia’s State Independent Living Council.
Cooper: What is the role on the State Independent Living Council?
Frick: Every state has what’s called a SILC, State Independent Living Council. The SILCs are run by a government agency, so they’re funded and staffed that way. Calfiornia’s SILC is run by the state Department of Rehabilitation. The goal of the SILC is to provide a variety of programs, a variety of initiatives throughout the whole state that will give individuals the ability to live independently. So as one of the Independent Living Centers in California, we play more of a local role, whereas the SILC provides more of a directive on a statewide level about how programs and services are provided for people with disabilities.
Cooper: Do you provide certain parameters that an ILC should meet? What are some of the nuts and bolts of this?
Frick: Sure. That’s a great question, because every three years, each SILC has to create a state plan for independent living or SPIL. Right now, California’s SILC is working on laying the foundation for the SPIL that will be taking effect starting in 2011. So, we’re in the process of setting up various focus groups, holding meetings around the state to gather input from people with all types of disabilities, with all type of needs. Once that information is gathered and distilled, there will be a three-year state plan created which will be a directive for what gets doneover the next 30 years by ILCs and other organizations that provide services to people with disabilities statewide.
Cooper: This happened three years ago as well, and every three years you refine it?
Frick: Either refine it or in some cases really redo it. Right now we’re a little more than halfway through the current plan, which is 2008, 2009, and 2010. Some of the issues are set forth in the plan we’re working on. If those have been completed, they may come off of the list in the next plan, or they may be revised if there’s additional work that needs to be done. I’ll give you an example of that.
In the current plan, one of the things needed on a statewide level was to do community organizing with underserved populations of people who have disabilities. So for example, we have a program called the Hispanic Community Organizing Project. Our goal is to work with people in the Hispanic community who have disabilities and work with their specific issues, whatever is important to this very small group. Within the small groups around the counties, each group is in a particular neighborhood, and that group determines what their specific issues are. So it might be safety in crossing streets or it might be learning how to interact with law enforcement. At a very grassroots level, this program is designed to work with various disenfranchised groups of people who have disabilities.
Cooper: Is it disability-centric? Does the SILC address disability issues at a group level, or is it individual?
Frick: It’s a little of both, frankly. In some cases it really becomes very individualized, because if somebody is deaf or hard of hearing, their needs can be very different from somebody who has a visual impairment. We’re almost three years into this program, and we’ve learned that it really is a very individualized thing. First of all, you’re dealing with these very small groups, and within those groups, different people have different needs. So it really is very customized, depending on the group and the individual needs within that group. What we’re doing in San Diego, I know, is very different from what’s being done in the Bay Area, for example, because they have a whole different set of things that are important to them.
Cooper: Do you look at the different ILCs across the state and discuss best practices with other ILCs during conferences?
Frick: Absolutely. That happens in a couple of ways. Aside from the SILC, I’m also a member of a statewide organization which is similar to a trade organization. There are 29 ILCs in California. Most of those, our center included, are members of a statewide organization called the California Foundation for ILCs. All of the center directors who are members sit on the board of the SILC and we meet three times a year and have conferences where we talk about best practices within the ILCs.
Cooper: And on the national level, you’re part of the National Council of Independent Living (NCIL)?
Frick: Yes, I’m a member. I spent six years as a board member for NCIL until a week and a half ago. I’ve chosen to step off that board and focus my efforts more locally on a statewide level. However, I’m still a member of NCIL and on a number of subcommittees.
Cooper: So you know John Lancaster.
Frick: I was on the committee that hired John as the executive director six years ago, and John actually just retired last month. The board chair for NCIL, Kelly Buckland, was recently hired as the new executive director to take over for John Lancaster. We just had our annual conference, so all those changes have just taken place.
Cooper: I’ve known John for many, many years. Darn, I’m getting old. Did I read something that said there’s actually extra funding for the ILCs in California?
Frick: Yes. As a matter of fact, on the national level, that’s really the result of NCIL’s work. When the stimulus package was approved, it included an increase in funding for ILCs over the next couple of years. So, federal money will go directly to the centers in October. The Department of Rehab has also been awarded increased funding through another component of the stimulus package. So there will be quite an influx of additional funds to centers and to statewide organizations over the next couple of years.
I’ve been voted by the majority of the center directors around the state to represent them on the SILC, and I’m really excited to be part of the development of the new state plan. Just in the last two minutes of our conference call, we started to lay the foundation to make that successful. With the new stimulus money and all this new energy and invigoration in the movement, I think this is an awesome time to be involved in the development of this new plan. Earlier you mentioned ABILITYJobs.com, as an example. I think employment is a huge part of that piece. We have a tremendous opportunity to get people back to work and use the stimulus money for rehab and employment of people with disabilities. I’m eager to play a part and help move this agenda forward in a really dramatic way over the next few years.