Parenting Post-Secondary Students with Disabilities: Becoming the Mentor, Advocate, and Guide Your Young Adult Needs
The National Center on Secondary Education and Transition (NCSET)
2e Newsletter
July/August 2010

This article provides parents advice on assisting adolescents with disabilities.

The importance of involving parents in the education of elementary and secondary school students is widely encouraged. In fact, federal law — the Individuals with Disabilities Education Act (IDEA) — has created a process to involve parents in the education of their children with disabilities. Once youth with disabilities graduate from high school, however, resources and guidance to help parents with this challenging new phase of parenting become difficult to find. Yet, parents continue to be important role models and guides for their young adult sons and daughters. For students with disabilities, their parents may be a key part of the support network they need to succeed in the post-secondary environment.

Experts on human development consider late adolescence a very important time of life for all individuals. It is a “launching period” when parents help youth develop the skills they will need as adults. This launching process does not end because a student graduates from high school, reaches the legal age of adulthood (age of majority), or enrolls in a college or other training program. New and important parenting issues continue to arise as young adults grow up.

Parents as Mentors
Although parents of young adults with disabilities no longer have the same authority they once had in the lives of their children, they can provide guidance and support through a mentor or advisor role. Mentors teach, challenge, and support their protégé. A parent’s mentoring relationship must be based on an underlying trust and respect for one’s child as someone capable of learning how to manage his or her own life.

Whether a student has a disability or not, the greatest challenge for parents of post-secondary students is learning when and how to be supportive, while still encouraging self-determination and independence. It may require a giant leap of faith for parents to trust that their sons and daughters have all the resources they need to deal with the unfamiliar challenges of post-secondary education. Nonetheless, post-secondary schools treat students as legal adults. It is important for parents to do all they can to reinforce their faith in their child’s ability to manage life at school.

Effective mentoring takes clear communication skills. Parents may find it helpful to learn about and practice communication skills so they can use them consistently and well. This approach is explored in depth in the book Don’t Tell Me What to Do, Just Send Money: The Essential Parenting Guide to the College Years, by Helen E. Johnson and Christine Schelhas-Miller.

Parents as Advocates
No matter how much parents respect and trust their children, it is difficult to let them learn from mistakes when the consequences are serious. Although parents must be careful not to “take over” the problems of their young adult sons and daughters, situations may arise when parents need to take a more active role.

Young adults often unload everyday worries on parents and then go on about their lives. Parents must distinguish between these kinds of situations and more serious circumstances — such as substance abuse; mental or physical illness; other threats to their child’s health or safety; serious financial issues; and, for youth with disabilities, discrimination.

Once parents decide to act, their first involvement should always be directly with their son or daughter — to whom parents can provide resources, information, and emotional support. Parents may also want to contact the post-secondary program to ask for help assessing the situation. If the child is in college, the disability services office is a good place to start. Other offices may also be appropriate, depending on the nature of the concern. These include health services, the dean of students, ADA (Americans with Disabilities Act) coordinators, and Section 504 (of the Rehabilitation Act) coordinators. Many colleges and universities also have a parents’ program office.

However, parents may encounter some resistance to their involvement. Post-secondary professionals are not used to working with parents and may see it as inappropriate or even harmful. In fact, school staff cannot legally share information with parents without a student’s written permission.

Young adults of legal age are responsible for making their own decisions, even in serious situations. Unless parents are the legal guardians of their adult child, their role is to support their son or daughter as the young adult solves his or her problems. Parents may only need to help them gather information and understand their options. Ultimately, a student’s maturity, cultural values, and other individual characteristics will determine the kind of involvement and family support that is appropriate and helpful for each student.

So What’s a Parent to Do?
The post-secondary years provide students with both new freedoms and new responsibilities. Many students are living away from home for the first time or are new to making personal decisions on their own. Parents are naturally concerned about the safety, health, and social adjustment of their sons and daughters. Disability-related issues can make this an even more challenging time for students and parents. However, there is help available.

Materials for parents of college students, such as the previously mentioned book by Johnson and Schelhas- Miller, can be found on the shelves of local bookstores and libraries. Websites are available for the parents of college students, including college and university websites that provide tips. Unfortunately, few of these resources address the many unique challenges that students with disabilities and their families face.

Information developed specifically for the parents of high school students with disabilities, on the other hand, does not cover parenting issues during the college years. These materials generally try to help parents prepare youth for the transition to post-secondary education, find financial aid, and learn about the ADA and Section 504. While they may mention the benefits of family support, what this support looks like at the post-secondary level is not described. In fact, an emphasis in recent transition literature on over-protective parenting and learned helplessness has given some parents and educators the mistaken impression that parent involvement is wholly undesirable at the post-secondary level.

Although not widely available, a handful of recent studies confirm the value of the supports parents provide at the post-secondary level and indicate that active parent involvement can foster, rather than hinder, self-determination. Additional studies and research-based guidance on these issues is needed to help parents effectively support their sons and daughters with disabilities in the postsecondary years.

Resources for Parents

Books

  • Don’t Tell Me What to Do, Just Send Money: The Essential Parenting Guide to the College Years, by H. E. Johnson and S. Schelhas-Miller, St. Martin’s Griffin, 2000

  • The Parent’s Crash Course in Career Planning: Helping Your College Student Succeed, by M. B. Harris and S. L. Jones, VGM Career Horizons, 1996

  • When Kids Go to College: A Parent’s Guide to Changing Relationships, by B. M. Newman and P. R. Newman, Ohio State University Press, 1992

Websites

For individualized information, advocacy, and referral services, contact your nearest Parent Training and Information Center (www.yellowpagesforkids.com/help/ptis.htm) or Center for Independent Living (www.virtualcil.net/cils/query-iandr.php?state=il).


References

Burghstahler, S., & Whelley, T. (2001). Parent involvement in postsecondary education. Retrieved from University of Minnesota, Institute on Community Inclusion, National Center on Secondary Education and Transition website: www.ncset.org/teleconferences/transcripts/2001_08.asp.

National Center for the Study of Post-secondary Educational Supports (NCSPES) (2001). Focus group discussions on supports and barriers to life-long learning. Technical report: Post-secondary education and employment for students with disabilities. University of Hawaii at Manoa.

NCSPES (2001). Preparation of youth with disabilities for participation in post-secondary education & lifelong learning. National Capacity Building Institute 2001 Proceedings. University of Hawaii at Manoa.

Perna, L. W., Fenske, R. H., & Swail, W. S. (2000). Early interventions: Expanding access to higher education. The ERIC Review, 8(1), 15-18. Electronic version: >www.educationalpolicy.org/pdf/ERIC%20Review.pdf.

Stodden, R.A., & Dowrick, P.W. (2000) Post-secondary education and employment of adults with disabilities. American Rehabilitation, 24(3), 19-23.

University of Arkansas, Twenty-Sixth Institute on Rehabilitation Issues. (2000). The family as a critical partner in the achievement of a successful employment outcome. Retrieved from >www.pacer.org/tatra/resources/critfam.asp.

Willis, C., Hoben, S., & Myette, P. (1995). Devising a supportive climate based on clinical vignettes of college students with attention deficit disorder. Journal of Post-secondary Education and Disability, 11(2 -3), 31-43.


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