Parent and Family Involvement Annotated Bibliography Prepared for NSTTAC by Dawn A. Rowe

Overview of Issue

Transition to adulthood is an important stage in life for students with disabilities and their parents. Planning for transition provides parents with links to teachers, counselors, related service personnel, and post-secondary adult agency services. Parent and family involvement in the transition planning process has been found to be a consistent predictor of post-secondary success of young adults with disabilities (Fourqurean, Meisgeier, Swank, Williams, 1991; Kraemer, McIntyre, Blancher, 2003; Reiter Palnizky, 1996). Kraemer, McIntrye, and Blancher specifically found that parent knowledge of adult services and parent involvement in transition planning was significantly related to students overall quality of life. Reiter and Palnizky identified five family involvement variables that were significantly related to a students' vocational status after high school: cooperation, interest, encouragement, planning, and support.

Parents can provide a foundation for the IEP team, keeping them grounded and focused on their child's individual strengths, needs, and preferences. Parents know their child's postsecondary and career ambitions and possible support needs, and can identify particular friends, family members, or community members who can provide additional support. It is recommended that educators create a reliable alliance with parents empowering them to emerge as partners and work together to promote successful student outcomes. While, parents and families can provide valuable information for developing and implementing educational programs due to their unique insights on living day to day with a student with a disability (Turnbull Turnbull, 1997; Kochhar-Bryant, Shaw, Izzo, 2007; Wandry Pleet, 2009), little experimental research exists documenting effective interventions for increasing parent and family involvement in the secondary transition process. Therefore, the purpose of this annotated bibliography is to provide educators with sources that define parent and family involvement and offer suggestions for how to involve families in the transition planning process. Based on the categorical nature of the literature identified, the following information is organized by the following categories: parents of students with learning disabilities, intellectual disabilities, emotional/behavior disabilities, autism, and culturally diverse families.

References

Fourqurean, J. M., Meisgeier, C., Swank, P. R., & Williams, R. E. (1991). Correlates of postsecondary employment outcomes for young adults with learning disabilities. Journal of Learning Disabilities, 24, 400-405.

Kochhar-Bryant, C. A., Shaw, S., & Izzo, M. (2007). What every teacher should know about transition and IDEA 2004. Boston, MA: Pearson Education Inc.

Kraemer, B. R., McIntyre, L. L., & Blacher, J. (2003). Quality of life for young adults with mental retardation during transition. Mental Retardation, 41, 250-262.

Reiter, S., & Palnizky, A. (1996). Transition from school to work of students with developmental disabilities and mental retardation: An Israeli perspective. International Journal of Rehabilitation research, 19, 27-38.

Turnbull, A. P., & Turnbull, H. R. (1997). Families, professionals, and exceptionalities a special partnership. Upper Sadler River, NJ: Prentice-Hall Inc.

Wandry, D. L., & Pleet, A. M. (Eds.). (2009). Engaging and empowering families in secondary transition: A practitioner's guide. Virginia: Council for Exceptional Children.

Annotated Bibliography

Learning Disabilities

Haring, K. A., Lovett, D. L., & Saren, D. (1991). Parent perceptions of their adult offspring with disabilities. Teaching Exceptional Children, 23, 6-10. [Qualitative]

• Described parent perceptions related to:
• School program. 23% of parents perceived that they had no involvement in their child's education; 43% felt they were somewhat involved; 34% felt their input had a definite impact on their child's program
• Involvement in child's present life. 7% of parents reported being not involved; 35% reported being somewhat involved; 58% reported being actively involved
• Independence. 60% wanted their children to be as independent as possible; 18% reported their child would always require some degree of supervision; 22% reported their children should never live or work independently
• Transportation. 20% reported child could never be independently mobile; 22% reported their child could travel with some supervision; 59% indicated their child should and could access public transportation
• Employment. 21% reported not wanting their child to work but rather stay at home; 19% felt their child would always need to work in a sheltered workshop; 60% encouraged their child to be as independent as possible
• SSI benefits. 70% did not perceive the loss of SSI as a problem; 30% feared the loss of benefits;
• Residence. 50% wished the child would live in the family home; 30% desired independent residential situation; 17% expressed a desire for youth to live in a group home or other supported living arrangement
• Offered strategies for including parents in educational and transition related decision making including but not limited to:
• School program: Teachers should encourage parents to visit the program for observation, and volunteer time. Also keep open lines of communication with parents practicing listening skills.
• Involvement in child's present life: Adult service providers could foster parent involvement and learn about the family dynamics
• Independence: Schools can alleviate parental concerns by encouraging better communication between professionals and parents and explanation of procedures
• Transportation: Teachers can explain to parents that with systematic instruction, fading supervision, most young adults can access public transportation independently relieving the burden from the family
• Employment: Teachers can educate parents about the advantages of community-based instruction and community-based vocational training
• SSI benefits: Teachers can identify individuals who can assist with SSI benefits
• Residence: Teachers can help parents identify agencies that can assist them with acquiring services and supports

Lindstrom, L., Doren, B., Metheny, J., Johnson, P., & Zane, C. (2007). Transition to employment: Role of the family in career development. Exceptional Children, 73, 348-366. [Descriptive]

• Provided a brief description of the role of the family in career development and post-school outcomes of young adults with learning disabilities
• Described the role of the family in shaping career development and post-school outcomes by identifying how family structure variables (e.g., SES, education, and parental occupation) and process variables (e.g., advocacy, support, and career expectations) relate to career development and post-school outcomes for young adults with learning disabilities

Morningstar, M. E., Turnbull, A. P., & Turnbull, H. R. (1995). What do students with disabilities tell us about the importance of family involvement in the transition from school to adult life. Exceptional Children, 62, 249-260. [Qualitative]

• Described themes that emerged from focus groups (i.e., creation of a vision for the future, family and student involvement in the transition planning process, and family involvement in facilitating self-determination)
• Discussed issues surrounding student views of family involvement (i.e., family role in creating a future vision, family involvement in the planning process, and family involvement in facilitating self-determination)

Tarleton, B., & Ward, L. (2005). Changes and choices: Finding out what information young people with learning disabilities, their parents and supporters need at transition. British Journal of Learning Disabilities, 33, 70-76. [Qualitative]

• Described the information needs of students with learning disabilities, their parents, and supporters at the time of transition
• Identified questions about the transition process identified by all stakeholders Described methods to present information to students, parents, and stakeholders

Intellectual Disabilities

Ankeny, E. M., Wilkins, J., & Spain, J. (2009). Mothers' experiences of transition planning for their children with disabilities. Teaching Exceptional Children, 41, 28-36. [Descriptive]

• Described three themes that emerged from interviews with four mothers of children with disabilities
• Goals and barriers to independence in adulthood
• Transition as an ongoing process
• Importance of communication and support from teachers
• Provided suggestions to case managers and teachers for:
• Adolescent development and family stress (i.e., involve parents in the transition planning process, use a phased approach to adult service delivery, take a leadership role in interagency collaboration efforts, provide ongoing communication and collaboration with families)
• Team collaboration and roles of families (i.e., recognize and include all parent and family structures, include family resources and community members in planning, respect family's goal for child)
• Employment for transitioning youth (i.e., explain career options, inform parents about roles of adult service providers, consider quality of life issues)
• Postschool roles of families (i.e., encourage parents to join advocacy groups, contact community resources on behalf of parents, provide information to parents on how to access a variety of adult services)
• Provided a brief list of transition related online resources for youth, families, and professionals

Cooney, B. F. (2002). Exploring perspectives on transition of youth with disabilities: Voices of young adults, parents, and professionals. Mental Retardation, 40, 425-435. [qualitative]

• Examined how differences in attitudes, goals, and strategies each stakeholder brings to the transition team for students with severe cognitive disabilities affects the quality of the transition process
• Described student perspectives, parent perspectives, and professional perspectives of the transition process identifying different themes for each stakeholder
• Student themes: aspirations for the future and pursuit of independence
• Parent themes: views of children, promise for the future, and perspectives on transition
• Professional themes: perspectives on young adults or parents, viable options, and coping strategies
• Discussed how students in this study were products of transition planning rather than participants in the process
• Recommended parents and students be active partners with professionals to avoid professional only planning

Dixon, R.M., & Reddacliff, C.A. (2001). Family contribution to the vocational lives of vocationally competent young adults with intellectual disabilities. International Journal of Disability, Development, and Education, 48, 193-206. [qualitative]

• Described how families in Australia contributed to a student with mild intellectual disabilities efforts to maintain competitive employment
• Discussed characteristics that led to more successful employment outcomes (i.e., moral support, practical assistance, role models of appropriate work ethic, protection from difficulties and exploitation, and family cohesion
• Suggested implications for parents and vocational education practitioners

Gallivan-Fenlon, A. (1994). Their senior year: Family and service provider perspectives on the transition from school to adult life for young adults with disabilities. Journal of the Association for Persons with Severe Handicaps, 19, 11-23.

• Analyzed family and service provider perspectives on the transition from school to adult life for students with moderate mental retardation focusing on (a) student aspirations in the process of transitioning from school to adulthood, (b) student and other relevant participant perceptions of the transition process, (c) student and other relevant participant understanding of work, community living, and collaboration among families and service providers during the transition process, and (d) initial post-school outcomes
• Identified three broad categories consisting of seven major themes
• Differing expectations and aspirations for young adult life
• Young adults aspired to be in community employment and live lives of typical young adults
• Adult providers, school personnel, and families held more restrictive expectations
• Differing views of participation in transition related activities
• Lack of family participation
• Lack of knowledge and collaboration among transition teams
• And delayed transition planning
• Initial transition outcomes
• Sitting home, either receiving no services or waiting for an employment opportunity to arise or be developed by an adult agency
• Supported employment, sheltered workshops, or day treatment center

Hanley-Maxwell, C. Whitney-Thomas, J., & Pogoloff, S. (1995). The second shock: A qualitative study of parents' perspectives and needs during their child's transition from school to adult life. Journal of the Association for Persons with Severe Handicaps, 20, 3-15. [qualitative]

• Provided findings from in-depth interviews with parents of students with cognitive disabilities that (a) defined the meaning of students' transition from school to adult life for parents of children with cognitive disabilities and (b) identified needs of these parents during the transition period from school to adult life
• Found that parents, when asked to define transition, include topics such as school to work, residential and social issues, safety, happiness, reliable transportation, and filling free time with constructive activities
• Found parents needed the structure and support of the school system to continue through adulthood and feared waiting lists for residential and employment services and a lack of social networks

Heslop, P., & Abbott, D. (2007) Schools out: Pathways for young people with intellectual disabilities from out-of-area residential schools or colleges. Journal of Intellectual Disability Research, 51, 489-496. [Qualitative]

• Described what parents from five areas of the United Kingdom thought contributed to a satisfactory transition from school to adult life
• Described four components of good transition planning
• Being well-connected with other parents and key professionals
• Being proactive
• The provision of information
• Good forward planning with enough time to prepare

Kim, K., & Turnbull, A. (2004). Transition to adulthood for students with severe intellectual disabilities: Shifting toward person-family interdependent planning. Research and Practice for Person with Severe Disabilities, 29, 53-57. [Descriptive]

• Provided an overview of person-centered planning (PCP) and family centered planning (FCP)
• Suggested a new approach that combines PCP and FCP called person-family interdependent planning
• Described five premises that support the person-family interdependent approach to planning
• The transition of a young adult with a severe intellectual disability influences and is influenced by the family
• Young adults with severe intellectual disabilities and their families have choices concerning their lives
• No person is fully competent in all life's decisions and domains
• Plans for the future should consider the need of young adults with severe intellectual disabilities and their families
• Comprehensive policies and programs providing social, emotional, and financial supports for young adults with severe disabilities and their families should be implemented

Stineman, R. M., Morningstar, M. E., & Bishop, B. (1993). Role of families in transition planning for young adults with disabilities: Toward a method of person-centered planning. Journal of Vocational Rehabilitation, 3(2), 52-61. [Descriptive]

• Described families' roles in the transition process for young adults with severe disabilities
• Identified barriers to family involvement
• Professional perceptions about family involvement
• Past negative experience
• Limited and conflicting expectations
• Lack of opportunity to participate actively in the planning process
• Discussed strategies to increase successful collaboration in particular person-centered planning which is comprised of the following steps
• Profile positives
• Complete relationship diagram
• Envision the future
• Setting a goal
• Brainstorm obstacles
• Brainstorm resources
• Prioritize options and resources
• Develop an action plan

Emotional and Behavioral Disorders

Frith, G. H., & Armstrong, S. (1984) Career preparation for behavior disordered adolescents: Involving the family Family Relations, 33, 143-147. [Descriptive]

• Described advantages and disadvantages for involving family members in the career preparation process for students with behavior disorders
• Discussed the role of families in the career preparation process for students with behavior disorders
• Offered strategies for encouraging parent participation, opportunities for families to offer direct assistance, and strategies for training family members to facilitate vocational independence

Autism

Field, S., & Hoffman, A. (1999) The importance of family involvement for promoting self-determination in adolescents with autism and other developmental disabilities. Focus on Autism and Other Developmental Disabilities, 14, 36-41. [Descriptive]

• Described the role of parents in supporting in the development of self-determination by their sons or daughters
• Provided descriptions of parent-child interactions that promote self-determination
• Provided sample activities to promote family involvement in self-determination

Culturally Diverse Families

Blue-Banning, M., Turnbull, A. P., & Pereira, L. (2000). Group action planning as a support strategy for Hispanic families: Parent and professional perspectives. Mental Retardation, 387, 262-275. [Qualitative]

• Examined the effectiveness of action planning, a person-centered planning approach, with Hispanic parents of youth/young adults with a variation of disability classifications such as autism, mental retardation, and cerebral palsy
• Described perceived advantages and disadvantages of group action planning by participants

Blue-Banning, M., Turnbull, A. P., & Pereira, L. (2002). Hispanic youth/young adults with disabilities: Parents' visions for the future. Research & Practice for Persons with Severe Disabilities, 27, 204-219. [qualitative]

• Described visions of Hispanic parents about their children with disabilities which focused on acceptance, future living, employment, and free time options
• Lack of acceptance from family, friends, and others is a source of distress in the immediate family structure
• Parents' vision on future living varied. Some feared what would become of their child's life when they were no longer able to take care of them, expressing a desire to find a future caretaker that would be comparable to what they could provide. Others envisioned their children living independently with concerns of safety
• Parents stressed the importance of employment being consistent with child's preferences and a desire that their children have a meaningful job
• Parents valued leisure activities for their children, envisioning their son or daughter participating in community activities typically enjoyed by their same age nondisabled peers

* Boone, R. S. (1992). Involving culturally diverse parents in transition planning. Career Development for Exceptional Individuals, 15, 205-221. [Experimental]

• Examined the effect of a parent training program on culturally diverse parent's knowledge about school to community transition and participation in the transition planning meeting in Hawaii
• Found that parents who received training scored significantly higher on a transition awareness training instrument developed by the researcher than those who had no training but no significant differences in parental contributions to the Transition planning meeting

Gallegos, A. Y., & Medina, C. (1995). Twenty-one ways to involve families: A practical approach. Rural Special Education Quarterly, 14, 3-6. [Descriptive]

• Discussed involving the entire family, factors influencing involvement, and factors affecting rural communities
• Provided strategies that have been used and found to be effective by special education teachers working in rural districts of southern New Mexico

Geenen, S., Powers, L.E., & Lopez-Vasquez, A. (2001). Multicultural aspects of parent involvement in transition planning. Exceptional Children, 67, 265-282. [Qualitative]

• Conducted a survey to examine the extent and type of parental involvement in transition and to identify differences in parent and professional perceptions
• Described the role of the parent in the transition process
• Identified activities parents are currently involved in during their child's transition planning and how the activities varied by cultural group
• Identified what types of participation are most important to parents from various cultural backgrounds
• Described the differences in perceptions of professionals and parents as relates to level of involvement and importance

Greene, G. (1996). Empowering culturally and linguistically diverse families in the transition planning process. The Journal for Vocational Special Needs Education, 19, 26-30. [Descriptive]

• Discussed effects of low socioeconomic status, medical model of disabilities, and other factors that prevent participation in transition planning meetings for culturally diverse parents of students with disabilities
• Offered strategies and suggestions to IEP team members to empower culturally diverse families to be better advocates during the transition planning process

Howland, A., Anderson, J.A., Smiley, A. D., & Abbot, D. J. (2006) School liaisons: Bridging the gap between home and school. The School Community Journal, 16(2), 47-68. [Descriptive]

• Described a school liaison program funded by the Indianapolis Public Schools Office of Special Education and student services, designed to serve families from African American or Hispanic backgrounds, specifically those families with students identified as having a disability or those at-risk for such identification
• Described the three psychological constructs that this model incorporates, parents' motivational beliefs, parents' perceptions of invitations for involvement, and parents' perceived life context

Kim, K., & Morningstar, M. E. (2005). Transition planning involving culturally and linguistically diverse families. Career Development for Exceptional Individuals, 28, 92-103. [Literature Review]

• Reviewed the results from five articles regarding parent involvement in transition for families from culturally and linguistically diverse backgrounds
• Described barriers to family involvement (i.e., professional attitudes, diversity concerns, contextual barriers, and bureaucratic barriers)
• Provided culturally responsive strategies to enhance parent professional partnerships

Landmark, L. J., Zhang, D. D., & Montoya, L. (2007). Culturally diverse parents' experiences in their children's transition: Knowledge and involvement. Career Development for Exceptional Individuals, 30, 68-79. [qualitative]

• Described the transition planning process experiences of 19 culturally diverse families
• Knowledge of children's transition planning
• Knowledge of legal requirements for transition
• Involvement in the transition process
• Described parents' articulation of indicators of good participation in the transition process, their perceived barriers to involvement in the transition process, and supports needed to increase involvement in the transition process
• Discussed recurring themes and prominent differences among the different ethnic groups
• Transition planning
• IEP and transition meetings
• Employment
• Home support
• Parent emotions

Navarrete, L. A., & White, W. J. (1994). School to community transition planning: Factors to consider when working with culturally diverse students and families in rural settings. Rural Special Education Quarterly, 13, 51-56. [Literature Review]

• Reviewed selected literature related to multicultural issues that have a direct impact on the transition planning process
• Described the variations of communication styles between cultural groups (e.g., nonverbal cues, eye gazing, turn-taking, and impersonal versus personal modes of communication)
• Provided recommendations for effective transition planning with diverse populations

Rueda, R., Monzo, L., Shapiro, J., Gomez, J., & Blacher, J. (2005). Cultural models of transition: Latina mothers of young adults with disabilities. Exceptional Children, 71, 401-414. [qualitative]

• Described a model of home-centered, sheltered adaptation by identifying five themes surrounding transition for Latino mothers of young adults with disabilities
• basic life skills and social adaptation
• independence and the role of the home
• the mother's role and expertise in deciding transition issues
• access to information
• dangers of the outside world
• Provides evidence that there may be multiple perspectives on transition, some of which may conflict with the views of transition implied in various official policies and definitions
• Described a group of Latino mother's perspectives of transition services, their roles, their feelings about interagency collaboration, and the dangers of the outside world

Sileo. T. W., & Sileo, A. P. (1996). Parent and professional partnerships in special education: Multicultural considerations. Intervention in School and Clinic, 31, 145-154. [Descriptive]

• Highlighted the importance of parent-professional relationships to student's academic and social development and the impact of ethnic, linguistic, and cultural diversity on the establishment of partnerships
• Provided four general strategies for parent-professional interactions
• Parent education programs that help parents with limited access to formal education settings to learn basic schools subjects and life skills
• Parent education programs that are designed to increase parents' influence on their children's education
• Awareness training programs that provide opportunities for role play and simulations to help increase parent's confidence levels when they are working with school personnel
• Bilingual and special education programs that address linguistic and cultural diversity

Timmons, J. C., Whitney-Thomas, J., McIntyre, J. P., Butterworth, J., & Allen, D. (2004). Managing service delivery systems and the role of parents during their children's transitions. Journal of Rehabilitation, 70(2), 19-26. [qualitative]

• Described parents' perceptions of their child's transition planning and process and the challenges they have faced to trying to plan for their child's transition from school to adult life
• Described the role parents in the study played while planning for their child's transition from school to adult life; parents referring to themselves as linchpins
• Discussed resources and strategies for negotiating systems as well as resources and strategies parents lacked
• Included in the implications for practice suggestions were building informal supports, case management, person-directed resources, and building young adult self-determination

Other Relevant Sources

The following resources about family involvement in secondary transition were recommendations provided by the PACER parent training and information center.

Family as a Critical Partner in the Achievement of a Successful Employment Outcome, Twenty-Sixth Institute on Rehabilitation Issues 2000. Retrieved May 19, 2008, from http://www.pacer.org/tatra/26IRIinside.pdf

• Examined how a consumer's family can be a critical partner in the achievement of successful employment outcomes
• Provided training resources that can be used to help vocational rehabilitation counselors effectively engage families in the VR process.

Ferguson, C. (2005). Reaching Out to Diverse Populations: What Can Schools Do to Foster Family-School Connections? A Strategy Brief of the National Center for Family and Community Connections with Schools, September 2005. Retrieved May 19, 2008, from http://www.sedl.org/connections/resources/rb/rb5-diverse.pdf

• Described on teachers efforts to foster effective family and community involvement in student learning
• Provided recommendations for building effective programs

Ferguson, C., & Rodriguez, V. (2005). Engaging families at the secondary level: What schools can do to support family involvement. Retrieved May 19, 2008, from http://www.sedl.org/connections/resources/rb/rb3-Secondary.pdf

• Described considerations when engaging families at the secondary level
• Provided strategies to help school staff develop effective family and community connections with schools

Helping Families Transition to the Future: Rehabilitation Service Administration Parent Information and Training Projects Outcome Data 2005-2006. Retrieved May 19, 2008, from http://www.pacer.org/tatra/resources/RSA/RSA.pdf

• Presented data on positive outcomes associated with transition-focused parent training activities of seven Parent Information and Training Programs funded by the U.S. Department of Education Rehabilitation Services Administration (RSA) over a 12-month period in 2005 and 2006

Henderson, A. T., Mapp, K. L. (2002). A new wave of evidence: The impact of school, family, and community connections on student achievement. The National Center for Family and Community Connections with Schools.

• Examined parent and community involvement and its role in impacting on student achievement

ICI Impact newsletter, 19(2): Feature Issue on Parenting Teens and Young Adults with Disabilities. Retrieved May 19, 2008, from http://ici.umn.edu/products/impact/192/default.html

• Provided overviews of issues that arise when parenting teens and young adults with disabilities
• Suggested ways parents can become involved in the transition process
• Described Case Studies

Kreider, H., Caspe, M., Kennedy, S., Weiss, H. (2007). Family Involvement in Middle and High School Students' Education, 3, Retrieved May 19, 2008, from http://www.hfrp.org/publications-resources/publications-series/family-involvement- makes-a-difference/family-involvement-in-middle-and-high-school-students-education

• Synthesized the latest research that demonstrates how family involvement contributes to adolescents' learning and development
• Summarized the latest evidence base on effective involvement—specifically, the research studies that link family involvement during the middle and high school years to outcomes and programs that have been evaluated to show what works

Leake, D. W., Black, R. S. (2005). Cultural and Linguistic Diversity: Implications for transition Personnel. NCSET Essential tools, Retrieved May 19, 2008, from http://www.ncset.org/publications/essentialtools/diversity/default.asp

• Summarized current research on transition issues and Culturally and Linguistically Diverse (CLD) youth with disabilities
• Offered information on how transition personnel can effectively support youth by building on their strengths and enhancing natural supports available within their families and communities
• Provided several practical tools, and information on further resources

Martin, S.S., & Baker, D.C. (2001). Families and children with severe disabilities: Daily lives, systems, and concerns. Paper presented at the 2001 meeting of the American Association of Behavioral and Social Sciences (AABSS). Las Vegas, Nevada.

• Described issues of family life, the systems that affect the families, and current and future concerns related to having a child with severe disabilities

National Dropout Prevention Center/Network Newsletter, 20 (2). Family/School Relationships: Relationships That Matter. Retrieved May 19, 2008, from http://www.dropoutprevention.org/downloads/docs/webcast/20090210/NDPN_News_FamilySchool.pdf

• Defined family engagement
• Described Home Visit Connection program in California

Peterson, K. (2004) Supporting Dynamic Development of Youth with Disabilities During Transition: A Guide for Families. NCSET Information Brief, 3(2), Retrieved May 19, 2008, from http://www.ncset.org/publications/viewdesc.asp?id=1432

• Offered concrete, useful information about adolescent development to guide families in supporting youth with disabilities.
• Provided the compassionate perspective of a parent of a youth with a disability regarding the transition process.
• Offered a list of further resources.