About Independence
Independent Living Centers an Untapped Resource
TRIPIL's old van in 1995
Chronic illness brings with it a multitude of challenges. This is not exactly news to those of us whose lives have been affected by Chronic Fatigue Immune Dysfunction Syndrome (CFIDS).
We need help, but where do we turn? Perhaps one place you should think about is an independent living center (ILC).
I became aware of ILCs through my friend, Jim. We had gotten to know each other through a mutual hobby, amateur radio. I will never forget the day I met him face-to-face; until then, I had only talked with him over the radio. I couldn't believe it -- he was in a wheelchair! I remember thinking to myself, "Gee, he doesn't sound disabled..."
Over time, Jim and I became good friends. He told me he had been injured in a swimming accident. Every once in awhile, he talked about a place called "the living center." I could tell it was important in his life.
Jim remained my friend after I came down with CFIDS. He's been one of my best cheerleaders. One day when we were visiting, he asked me if I felt like I could be doing some volunteer work. He told me our local independent living center was looking for people to answer the phones. It sounded interesting, and I asked him to tell me more.
He said the center was one of hundreds of ILCs located around the country. He explained that ILCs offer a wide variety of services to people with all types of disabilities. He also told me, with obvious pride, there was substantial involvement of people with disabilities in the making of policy, the delivery of services, and the day-to-day running of the organization. I liked the idea, and started volunteering.
As I became familiar with the center, I came to realize that many of the services it offered would be useful to people with CFIDS (PWCs).
For PWCs, probably one the most important types of assistance available through a center is information and referral.
-
Information and referral:
One of the most frustrating things I've found for people who are newly disabled, other than the disability itself, is trying to find what services exist for them within their community. ILCs are up on this information -- they deal with it everyday. One call to a center will put you in touch with someone who is familiar with resources available to you within your community.
Other services centers provide:
-
Peer counseling:
I can't say enough about this. Examining and solving problems with people who have disabilities other than CFIDS has made me realize that many of our needs are not unique. It gives pause to see how similar some of my symptoms are to people who have had a stroke or have suffered a head injury. Many of their frustrations are my frustrations. I understand them, they understand me. And we work to help each other. -
Advocacy:
Centers provide two kinds: - Consumer advocacy; this involves working with staff to obtain support services available to you from other agencies within your community and
- Community advocacy; which involves staff, board members, and volunteers working to initiate change within the community to make it possible for people with disabilities to live more independently.
A host of other services are available at ILCs, and they can vary depending on the needs of the people they are serving, and the resources available within the community.
I believe ILC's offer opportunity for people with CFIDS. Potentially, there is a lot of help available for us if we avail ourselves. At the same time, we must understand we are a relatively new disability and that we must give centers the means to understand the challenges that face us.
A word about the meaning of independent living; you should understand its concept, and I cannot state it any better than Independent Living Research Utilization, a national technical assistance project for independent living:
- "What is independent living? Essentially, it is living just like everyone else -- having opportunities to make decisions that affect one's life, able to pursue activities of one's own choosing -- limited only in the same ways that one's non-disabled neighbors are limited."
- "Independent living should not be defined in terms of living on one's own, being employed in a job fitting one's capabilities and interests, or having an active social life. These are aspects of living independently. Independent living has to do with self-determination. It is having the right and the opportunity to pursue a course of action. And, it is having the freedom to fail -- and learn from one's failures, just as non-disabled people do."
There are, of course, individuals who have certain mental impairments which may affect their abilities to make complicated decisions or pursue complex activities. For these individuals, independent living means having every opportunity to be as self-sufficient as possible.
"Independent living. It isn't easy, and it can be risky. But millions of people with disabilities rate it higher than a life of dependency and narrow opportunities and unfulfilled expectations."
A word for CFIDS support groups:
Don't needlessly duplicate effort. You may find an ILC is providing services to the community you are also trying to provide PWCs. Cooperate with a center, it will free you up to concentrate on problems unique to CFIDS. For goodness sakes, save energy.
If you live in or near a city of any size, it is quite likely there is an independent living center near you. Get to know this resource.
HOW TO FIND INDEPENDENT LIVING CENTERS
- Look in your local telephone directory under social services.
- Contact the main office of the state vocational rehabilitation agency. Request the person responsible for overseeing the agency's independent living program for information on centers within your state.
- Contact the regional Rehabilitation Services Administration Office nearest you:
Region 1: 617-223-4091
Region 2: 212-264-4715
Region 3: 215-596-0314
Region 4: 404-331-2449
Region 5: 312-886-5372
Region 6: 214-767-2961
Region 7: 816-891-8015
Region 8: 303-844-2135
Region 9: 415-556-7335
Region 10: 206-220-7840 - Contact Independent Living Research Utilization (ILRU)
Independent Living Research Utilization (ILRU)
2323 S. Shepherd, Suite 1000
Houston, TX 77019
Phone: 713-520-0232
713-520-5136 (TDD).
