READINGS
in Independent Living

Parent Centers and Centers for Independent Living: Collectively We're Stronger

1999
by Beth Wright

Centers for Independent Living (CILs) and Parent Training and Information Centers have a shared goal: to improve the lives of people with disabilities. Advocates from both the adult disability community and the parent advocacy movement recognize that there is much to be gained by building stronger relationships:

combined forces have a greater impact on disability policy and legislation;
by sharing unique strengths and perspectives, and by supporting one another's
activities, both collaborating organizations are enhanced;
youth with disabilities and their families will benefit because CILs can assist
these young adults as they transition to the adult service system;
by beginning to bridge the gaps and find common ground, Centers for Independent Living and parent centers can benefit more youth and adults with
disabilities than they could separately.

The passage of the ADA, the Rehabilitation Act, and the Individuals with Disabilities Education Act (IDEA) is evidence of successful collaboration between the independent living and parent advocacy movements on a national scale. These laws were enacted as a result of bipartisan efforts and natural networks of adults with disabilities, parents, family members, advocates, and other allies. The existence of these laws is part of the rich and shared history of these groups.

Current efforts in Arizona, Massachusetts, Hawaii, and Minnesota provide examples of various ways parent groups and CILs are working together, as well as the benefits that result from building stronger relationships between CILs and parent centers on state and local levels. Projects addressing the needs of transition-age students are a natural focus.

Arizona

Susan Webb, executive director of ABIL, the Center for Independent Living in Phoenix, Arizona, comments that CILs and parent centers are "stronger as partners," including the practical area of fundraising. "Parent centers can recommend CILs receive funding, and vice versa. That way we really strengthen each other, and collectively, we're stronger." ABIL and Pilot Parent Partnerships, the federally funded parent center in Phoenix, have a five-year collaborative history. Mary Slaughter, executive director of Pilot Parent Partnerships (PPP), and Webb's predecessor at ABIL worked to build a relationship between the organizations through joint staff lunches and small projects.

Slaughter described how this partnership grew through attendance at meetings with other groups such as the state vocational rehabilitation advisory council. Webb and Slaughter support each other's organizational goals and reinforce one another's arguments. They are able to win other supporters and accomplish more as a de facto team than they could individually.

Joint projects between PPP and ABIL have included a federal transition grant funded by the Health and Human Services/Administration on Developmental Disabilities (ADD) and a Robert Wood Johnson foundation grant. When the ADD grant was first publicized, CIL representatives recommended that the parent center apply and offered to collaborate. When funded, the parent center subcontracted responsibilities to CILs in Tucson and Phoenix as well as the parent center in Tucson.

The Johnson foundation grant was a coup for both organizations. The focus of the grant is on self-determination for people with developmental disabilities, with a particular emphasis on financial control. The ABIL/PPP project uses a peer mentoring approach, in which mentors with disabilities help other people with developmental disabilities develop skills to control their own finances. "The project is the only [Robert Wood Johnson foundation] grant involving a CIL," says Webb with pride.

Massachusetts

Paul Spooner, executive director of Metro West CIL in Framingham, MA, emphasizes the critical importance of role models for children with disabilities. He also encourages parent centers to work with CILs to create mentoring programs. "Kids with disabilities don't get to see people with disabilities who work, who are successful," he says, which can limit their ability to develop their own dreams and ambitions. Spooner finds that a major barrier to collaboration between parent centers and CILs is the tendency for parents to look to professionals for information rather than to people with disabilities who may not have professional credentials. Metro West CIL is currently struggling to persuade a local school district that it is more valuable to a student with a disability to spend an hour with an adult role model (a person with a disability who is working) than with a school counselor or
social worker.

Meanwhile, the CIL's relationship with parents is building slowly. Metro West has begun to work more frequently with parents in the school system because a CIL staff member, a parent of a child with a disability, has referred other parents to the organization. Spooner finds that parents often "tend to be very protective - and they should and need to be in this system," but that his organization is working to build bridges with parents in order to help youth with disabilities on the road to independence.

Hawaii

Ke Ala Holomua, a parent-training grant funded by the Rehabilitation Services Administration (RSA) in Hawaii, is a collaborative partnership involving several disability organizations, including the Hawaii Center for Independent Living (HCIL). Trainers for Ke Ala Holomua work in teams that include a person with a disability and a family member or professional without a disability. The project also asks local CILs on different islands for assistance in publicizing workshops, finding locations, distributing flyers, and being the local contacts. Phyllis Meighen, director of Ke Ala Holomua for the past two years, comments, "it's a matter of designing simple ways for individuals to interact." She also suggests looking at how to apply for grants collaboratively and to find ways to "put money behind your work" because that shows that the CIL is "valued as a partner." Meighen also cautions parent centers interested in working with CILs to communicate that they do not want to "take over" CILs with their own agenda.

Minnesota

Project PRIDE, an RSA funded training project at PACER Center in Minnesota, offers workshops to individuals with disabilities and their family members on vocational rehabilitation and the state's new Workforce Centers. Rachel Parker, project co-coordinator, states "CILs are really important co-sponsors for us. They have helped expand our audience." Connecting with CILs in rural Minnesota has helped the Minneapolis based project better serve communities across the state. Parker says, "We talk about how things should be, but we know the answers lie in the community. The CILs are a really important piece of that." Parker acknowledges that psychological barriers sometimes hinder collaboration between parent and adult disability organizations. She believes both parents and adults with disabilities may "need to disassociate from personal issues" for successful collaboration to develop. Otherwise, "fears about your own child's future, or personal issues with our own parents" can interfere with positive working relationships.

Find a Starting Place

Parent centers that are hesitant but interested in seeing where a relationship with their CILs will lead should consider setting up a time for staff from both agencies "to have a long lunch," suggests Slaughter. Find out about each other's mission and goals, and meet periodically to learn about new projects and developments. Connections "will happen naturally," she says, and both organizations will find there is "much to learn from each other."

Listings of parent centers and independent living centers in each state can be accessed from the PACER web site: www.pacer.org

Reprinted with permission from:
Point of Departure
Editor: Deborah Leuchovius
1998 PACER Center, Inc.
PACER Center Executive Director: Paula Goldberg
TATRA Project Coordinator: Deborah Leuchovius
Point of Departurecorrespondence and reprint requests should be directed to:
TATRA Project c/o PACER Center
4826 Chicago Ave. S.
Minneapolis, MN 55417
612.827.2966 Voice; 612.827.7770 TTY; 612.827.3065 FAX
E-Mail: tatra@pacer.org
URL: www.pacer.org

This document may be reproduced for noncommercial use without prior permission if the author and ILRU are cited.

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.

READINGS in Independent Living