All posts by Songyuan Wang

Perceptions and goals of special education advocacy trainees

Intervention Research about Advocacy Trainings

Title: The perceptions and goals of special education advocacy trainees

Purpose: To understand the perceptions of individuals who participate in a special education advocacy training. Specifically, we aimed to understand: why individuals want to become special education advocates; how individuals plan to use their newfound special education knowledge and advocacy skills; and what individuals perceive as necessary attributes to be a special education advocate.

Method: In this study, there were 142 individuals who applied to and completed the Volunteer Advocacy Project (VAP, a special education advocacy training). The participants included parents of individuals with disabilities and professionals. We conducted a content analysis of their VAP applications for this study.

Findings:

  • Participants wanted to become special education advocates to help their own children (if they were caregivers) and to help others.
    • Specifically, parents reported wanting to help their own children with disabilities before advocating for other families.
    • Caregivers also reported wanting to help other families so they did not have similar experiences. Also, caregivers wanted to “pay it forward” to other families.
    • Professionals reported wanting to advance their own career or professional goals.
    • Professionals also reported wanting to improve their own skills as well as better advocate for clients.
  • Participants planned to use their newfound knowledge and skills by:
    • Advocating for other families by: educating and empowering, helping families navigate the special education process, helping families access services, and providing affective support
    • Improving the school by building family-professional partnerships
    • Improving the community by expanding the disability supports and network
    • Improving the state and national policies for individuals with disabilities
  • Participants reported that advocates needed to have three attributes to be successful: warmth, competence, and grit.

For more information, see:

Goldman, S.E., Burke, M.M., & Mello, M. (in press). The perceptions and goals of

special education advocacy trainees. Journal of Developmental and Physical Disabilities.

doi.org/10.1007/s10882-018-9649-2

Descriptive Research about Advocacy

Descriptive Research about Advocacy
Research Summary 5
Title:Special education advocacy among culturally and linguistically diverse families
Purpose: Special education advocates are becoming increasingly common. Further, as students become more diverse, it is increasingly important to understand how advocates work with culturally and linguistically diverse families of individuals with disabilities. The
purpose of this study was to explore the special education advocacy process among culturally and linguistically diverse special education advocates.
Method: Interviews were conducted with 12 culturally and linguistically diverse special education advocates.
Findings:
  • With respect to advocacy strategies, participants reported connecting with families. To do this, they had strong partnerships with community organizations. A barrier to connecting with families is that formal service delivery systems often failed to reach out to culturally and linguistically diverse families. Thus, advocates could only rely on community organizations.
  • Participants reported working directly with families. To do this, they shared cultural, disability, and familial experiences with families. Barriers to working with families included: lack of access to formal resources and disempowerment — both barriers were due to systemic challenges.
  • Participants reported working with schools. However, they encountered two barriers: deficit views toward culturally and linguistically diverse families and language.
For more information, see:
Burke, M.M., & Goldman, S.E. (2018). Special education advocacy among culturally and linguistically diverse families. Journal of Research in Special Educational Needs, 1, 3-14. doi: 10.1111/1471-3802.12413
Research Summary 7
Title: Sibling Advocacy: Perspectives about advocacy from siblings of individuals with
intellectual and developmental disabilities
Purpose: Most research focuses on advocacy among self-advocates and parents of individuals with disabilities. However, siblings may also advocate with their brothers and sisters with disabilities. Yet, little research has examined advocacy among siblings. The purpose of this study was to examine sibling advocacy.
Method: Four focus groups were conducted with 18 siblings of individuals with intellectual and developmental disabilities in one state.
Findings:
  • Siblings defined advocacy as: case advocacy and cause advocacy.
    • Case advocacy refers to providing support and giving a voice to individuals with disabilities.
    • Cause advocacy refers to educating others and creating systemic change with individuals with disabilities.
  • There were different advocacy methods with respect to case and cause advocacy.
    • Case advocacy refers to being inclusive and securing services.
    • Cause advocacy refers to collective advocacy, legislative advocacy, and educating others.
  • Siblings had different reasons for advocacy with respect to case and cause advocacy.
    • Reasons for case advocacy included love and obligation, role identity, and to receive services.
    • Reasons for cause advocacy included paying it forward and educating the public.
For more information, see:
Burke, M.M., Arnold, C.K., & Owen, A. (2015). Sibling advocacy: Perspectives about
advocacy from siblings of individuals with intellectual and developmental disabilities.
Inclusion, 3, 162-175. DOI: 10.1352/2326-6988-3.3.162
Research Summary 9
Title: Examining the perspectives of Latino families of children with autism spectrum disorder towards advocacy
Purpose: Although students in the United States are becoming more diverse and
Latino families of children with disabilities face greater systemic barriers in partnering with the school, little research has examined advocacy among Latino families. The purpose of this study was to explore perceptions of advocacy among Latino families of children with autism spectrum disorder.
Method: Four focus groups were conducted with 46 Latino parents of children with autism
spectrum disorder about their perceptions toward advocacy.
Findings:
  • Participants reported a variety of approaches to advocacy including: being assertive, engaging in school activities, communicating with school personnel, documenting school communication, and relying on special education knowledge and their faith.
  • Participants reported several barriers to advocacy: poor school experiences; stress; and stigma and discrimination.
  • Participants also reported facilitators to advocacy including: knowledge and resources about special education; frequent communication with the school; and greater peer support.
For more information, see:
Burke, M.M., Rios, K., Garcia, M., Sandman, L., Lopez, B. & Magaña, S.(in press): Examining the Perspectives of Latino Families of Children with Autism Spectrum Disorder Towards Advocacy, Exceptionality, DOI:10.1080/09362835.2018.1433041

Welcome to My Home Page!

Home

This website is intended to be a resource for individuals with disabilities and their families.

We hope this website will provide you with information, tips, resources, and relevant research about advocacy.

All material on this website is based on: research, advice from other parents and personal and/or professional experiences.

Please feel free to contact Meghan with other suggestions for advocacy that can be added to this website—it is a work in progress!

Volunteer Advocacy Project

Uncategorized

The Volunteer Advocacy Project (VAP) is a 36-hour advocacy training program for individuals who want to become special education advocates. You can find different iterations of the VAP at these websites:

Vanderbilt Kennedy Center, Nashville, Tennessee

https://vkc.mc.vanderbilt.edu/vkc/services/project/volunteer-advocacy/

Family Resource Center on Disabilities, Chicago, Illinois

https://frcd.org/tag/special-education-advocacy/

Community Inclusion and Development Alliance (CIDA), Bayside, New York

Volunteer Advocacy Project (VAP)

Human Development Institute, Kentucky

http://www.hdi.uky.edu/?s=fund+for+excellence&submit=Search

Understanding perceptions of advocacy according to advocates and families

research summary

Purpose: Little is known about how special education advocates support families of individuals with disabilities. In this study, we explored the special education advocacy process. Specifically, we examined the: steps in the advocacy process; the school’s reaction to special education advocacy; and the effects of advocacy.

Method: Interviews were conducted with nine parent-advocate dyads. All parents had children with disabilities. All advocates were also parents of children with disabilities and supported other families in advocacy.

Findings:

  • Special education advocates and families agreed on the steps in the advocacy process
  • The advocacy process included:   
  1. The family needing an advocate
  2. The advocate meeting with the family (e.g., talking to families over the phone, having in-person meetings, answering the family’s questions)
  3. The advocate empathizes with the family (e.g., the advocate shares their own experience with advocacy, the advocate supports the family)
  4. The advocate empowers the family (e.g. the advocate encourages the family to voice their opinions, the advocate increases the parent’s communication with the school, the advocate encourages the family to document happenings with the school)
  5. The advocate prepares the family for IEP meetings (e.g. the advocate addresses the family’s concerns about the IEP, the advocate attends IEP meetings)
  6. The advocate educates the family (e.g. the advocate explains service delivery systems, the advocate shares information about parent rights and parent trainings)
  7. The advocate provides ongoing supports to the family
  • The school had multiple responses to advocacy including:
  1. Positive reception
  2. Surprised
  3. Confrontational
  • Results of advocacy
  1. Increased appropriate services for the child
  2. Improved school experience for the child
  3. Improved student progress
  4. Improved parent experience (e.g., better family-school partnerships, improved family quality of life, more frequent communication with the school)

For more information, see: Burke, M.M., Rios, K., & Lee, C. (in press). Exploring the special education advocacy process according to families and advocates. Journal of Special Education.