READINGS
in Independent Living

Empowering Youth

2001
by Carolyn Newcombe and Heather Harrison
Background

For several years in the mid '90s the Disabilities Network of Eastern Connecticut (DNEC) received calls from family members of high school students expressing frustration with school systems. The majority requested an advocate to attend a planning and placement team meeting or assistance in obtaining benefits or housing. A number of these calls requested a support group for young people. Although several of the youth had been "mainstreamed," they still felt isolated. The majority of these young people would have their disability throughout their lives. They needed to learn how to speak up for themselves and develop the leadership skills needed to make changes in the community. DNEC recognized that the students and their families needed peer support as well as self-advocacy skills training.

With this in mind, DNEC applied for a grant funded through the State Independent Living Council and the two designated state units. These were Title VII Part B funds allocated for outreach to populations which have traditionally been unserved or underserved by CILs.

The purpose of the outreach grant was twofold:

  • To ensure that young people with disabilities were included in all aspects of school and community life; and
  • To empower these young people with the knowledge and skills needed to advocate for themselves and affect system change.

DNEC received $30,000 a year for a duration of three years. With these funds, DNEC hired a full-time (37.5 hours) transition advocate. The program targeted adolescents with significant disabilities between 13 and 21 years of age. Each year the project had 15 participants and included individuals with various types of disabilities, such as cognitive and mental health disabilities, blindness, cerebral palsy, autism, learning disabilities and deafness. The services and activities provided through this project included individual advocacy, family support, inclusion support, peer support and community advocacy.

Individual Advocacy

The transition advocate met individually with participants of the project to identify their interests, skills and goals for the future, including exploring career paths, social opportunities and housing options when appropriate. When the project started, one of Sue’s goals was to "get around her house on her own." Sue uses a wheelchair, but her parent's home didn't have a ramp to the front door and had furniture obstructing the pathway to her bedroom and bathroom. She was being carried around her house at age 13. Her parents didn't have a vehicle to transport a motorized wheelchair. The transition advocate worked with Sue for the duration of this project to obtain her mobility goal. Currently, her long range goal is to go to college and become an advocate.

Family Support

Parents of adolescents with disabilities need information on a variety of topics such as benefits, housing, and rights and requirements under the Individuals with Disabilities Education Act (IDEA). To continue with our example from above, Sue’s parents were unaware of the technology and financial benefits that are available. After attending a technology fair, which the transition advocate assisted in arranging, Sue and her parents were able to obtain a lift for their vehicle and install a ramp to their house.

Often adolescents have things they want to say to their parents but are unsure how to address the issue or are nervous about their family's reaction. They may need someone to mediate. At times the transition advocate was asked to act as mediator in a conversation to resolve issues, or at least bring about better understanding. The transition advocate helped Sue and her parents explore the concept of a personal care assistant, but funding was not available. While Sue's current privacy situation was not resolved, she knows of options for the future.

Inclusion Support

The transition advocate also facilitated the inclusion of adolescents with disabilities in after-school and community activities. The transition advocate met with individuals on a one-to-one basis to identify social or athletic interests. When the areas of interest were identified, the transition advocate assisted the student in advocating for involvement in such activities as the chess club, baseball team, social justice club or year book committee.

A young woman who had a learning disability wanted to volunteer for a local tourist organization. The transition advocate accompanied her to help explain why she used a service dog and to answer any questions the organization had. Another example of inclusion supports involved Dave, who was deaf and wanted to play baseball with the neighborhood kids. The transition advocate arranged to have team members learn some basic signs so Dave could be included in the game. He played on the team until he moved to another part of the state.

Youth Peer Group

A youth peer group was held twice a month at the DNEC office in a relaxed setting where teens could vent their frustrations, share their experiences, joys and sorrows with one another, and develop skills to cope with their disabilities. The peer group provided a fantastic opportunity for teens to connect with each other and alleviate their common feelings of being alone.

Several relationships grew out of the time spent chatting with their peers. One such relationship developed between Jean and Sue. Both had similar physical disabilities and neither knew many other teens with disabilities. Jean was positive and confident. Sue, timid and shy. Sue would describe a situation and Jean would say, "Yep, I've been in that situation and ..." or “Why can't you say...." After a couple of months, Sue's confidence increased and both girls--as well as the others in the peer group--felt a sense of "belonging." It is DNEC's belief that the relationships developed during the times of peer support contributed to the success of the systems change projects described below.

Community Advocacy

While one of the goals of this project was to have teens involved in systems change activities, it is important to keep in mind that most teens are in the process of identifying themselves. In order for them to participate in systems change projects, the above support services and activities needed to occur.The original workplan called for the transition advocate to teach a 12-week advocacy skills building session and work with students on a systems change project in each of the three school systems. This model didn't work for several reasons, the primary reason being that two of the three school systems did not want self advocacy skills taught in their school. One school was hesitant to grant the transition advocate access on a regular basis because they feared the transition advocate might come to bodily harm. In the second year of the project, DNEC was not allowed to co-teach a self-advocacy class in a local high school because the school realized that students who attended the self-advocacy classes the previous year had used the knowledge they gained to advocate for increases in services.

Instead, the 12-week self advocacy workshop was held at DNEC. This was an advantage because the youth could see adults with disabilities (sometimes the same disabilities) in positive roles. We took materials from several different curriculums and adapted them to the needs of the youth while giving the materials the independent living bent. Topics included a section on self exploration, IDEA and your rights under the ADA.The participants were encouraged to work on systems change projects which would reinforce skills they had learned in the self advocacy workshops. Individuals picked their own systems change project. In the first year, one youth decided her school needed automatic doors so she and other students could get in and out of the high school on their own. The transition advocate assisted the youth in identifying the decision makers and in composing letters. Progress was reported to the peer support group each session. Needless to say, this high school now has automatic doors.

When we first met Jean, her family had just moved into the state. They needed many resources. While the transition advocate was working with her on individual advocacy issues, Jean became interested in attending the youth peer group. She was eager to develop self advocacy skills and meet some peers who had disabilities.

After attending DNEC's self advocacy workshops and two sessions of Partners in Policymaking, she decided to pursue advocating for an accessible path in the town park near her home. She contacted the Town Hall to see how feasible it was to develop a path. They were encouraging, so with her father's assistance she developed a design for the path. While advocating for the development of the path, she became a member of her town's disability advisory council, which oversees accessibility issues.

On her own, Jean and a friend have also created a website on disabilities. She is currently in her senior year of high school. For her senior class project she is developing and presenting disability awareness training to both students and faculty. Jean has become a great advocate, not only for herself, but for the disability community as a whole.

Sue decided to take on a systems change project relating to her individual mobility goal. She has advocated for her church parish to install a lift to enable her to access all floors of the building. This is a work in progress. Eventually a lift will be installed and she will be able to participate in all church activities.

Mary’s communication disability combined with her autism made it difficult at first for us to understand what she wanted to tell us. We followed her outside. She wanted to show us something. She led us to some steps. She stomped her feet and gestured. Finally she got us to understand that she wanted a systems change project, too. She wanted to have a railing go up the ramp at school so that she could feel secure and stable when walking up the ramp.

The transition advocate attended a planning and placement team meeting with her and assisted Mary in communicating her need to have a handrail installed on the ramp to her school building. After some complaining on the part of the school system, a railing was installed. Mary, as well as other members of the community, are safer going up the ramp now.

Suggestions for Duplication

To CILs considering similar projects, we recommend developing relationships with special education directors, parent advocacy organizations, the University Affiliated Program, and the state department of education transition coordinator. Each state has a transition coordinator who is responsible for assisting local school districts to enable transition from high school to work and life. This person may know of training opportunities, resource materials and possible financial opportunities.

In particular, CILs should inquire about Sliver grants. Sliver grants are funds from the U. S. Department of Education which are provided to each state. These grants are for innovative educational projects. Each state sets its own priority areas. Only local school districts can apply for funds, but the school district can then subcontract with the CIL.

Although this project was initially funded for three years under a grant of Part B funds from Connecticut's State Independent Living Council and the two designated state units, DNEC has secured funding to continue the project. We have received a Community Development Block Grant from a local municipality to extend the project three months. We have also recently been awarded a grant jointly written in collaboration with a local school system to the Connecticut Department of Education.

In all of the activities of the project, our goal was to empower teens to access services and supports necessary to pursue their goals and dreams as well as nurture future leadership. The young people involved have demonstrated, through their efforts, their victories and their initiative, that they are already moving into leadership roles.

Contact Information

Disabilities Network of Eastern Connecticut
107 Route Thirty-Two
North Franklin, CT 06254
Phone: 860-823-1898
Fax: 860-886-2316
E-Mail: DNEC@SNET.NET

Connecticut SILC
c/o Independence Northwest
Route 63 Professional Center
1183 New Haven Rd. Suite 200
Naugatuck, CT 06770
Phone: 203- 729-0153
Fax: 203- 729-2839
E-Mail: indnw@aol.com

University of Connecticut
The A. J. Pappanikou Center on Special Education and Rehabilitation
A University Affiliated Program
249 Glenbrook Road U-64
Storrs, CT 06269-2064
Phone: 860-486-50535
Fax: 860- 486-5037
E-Mail: mclean@uconnvm.uconn.edu

About the Authors

Carolyn Newcombe has been involved in the disability rights movement for 15 years. She has held the position of Executive Director of the Disabilities Network of Eastern Connecticut (a CIL) for the past eight years and has made a commitment to empowering youth. She has served in various capacities for a number of organizations.

Heather Harrison was a costume designer and was involved in the art world before becoming employed by the Disabilities Network of Eastern Connecticut. She brought her creativity and her love of people to her position as Transition Advocate. She also developed self advocacy skills through attending a series of training by the Partners in Policymaking project. She is currently a consultant on accessibility of historical sites.

 

 

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