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Unmet needs and quality of support for parents of transition-aged youth: Differences by disability group, age, and household income

Lynda L. Anderson, Sheryl A. Larson, Shauna McDonald

Disability and Intersecting Statuses

ISBN: 978-1-78350-156-4, eISBN: 978-1-78350-157-1

Publication date: 27 December 2013

Abstract

Purpose

This study examined access to and quality of supports for families of adolescents with disabilities.

Methodology

An online survey was completed by family members of transition-aged young adults who had participated in parent training sessions on topics related to transitions to adulthood. Survey responses came from all 50 states, the District of Columbia, and 4 U.S. territories.

Findings

More than one-third of families reported unmet information needs related to areas such as employment, housing, preparing for adult relationships, and preparing others to support the family members with disabilities. Families of younger transition-aged youth, youth with Autism Spectrum Disorder or other disabilities, and families with lower household incomes reported more unmet needs. The overall quality of services families reported receiving was 2.19 on a 4-point scale of 1 to 4. Parents reported needing more information and quality of supports related to the transition of youth from school to adulthood.

Practical implications

Given the scope of unmet needs, ongoing collaboration between schools, agencies, organizations, and other entities that serve families is critical. While schools play a key role in supporting the transition process, other organizations also have a role.

Social implications

The results from this survey demonstrate that the need for support is not limited to youth with disabilities, but that family members also have information and support needs related to their roles as caregivers in the transition process.

Originality

This survey provides information about unmet needs and current services from a national sample that includes often underserved populations and includes sufficient numbers of respondents to allow comparisons between families, based on the type of disability their family member had.

Keywords

Acknowledgements

Acknowledgments

Preparation of this chapter was supported, in part, by a cooperative agreement (90DN029102) from the Administration on Intellectual and Developmental Disabilities (AIDD), Administration for Community Living, U.S. Department of Health and Human Services to the University of Minnesota. The research upon which this chapter is based was funded by a cooperative agreement (90DN0275/01) from AIDD to PACER Center with a subcontract to the University of Minnesota. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official AIDD policy.

The authors acknowledge the contributions of the parent center trainers and family members who took time to complete the survey or participate in a focus group. We also acknowledge the contributions of PACER and University of Minnesota staff who participated in the project design or implementation: P. Goldberg, D. Leuchovius, V. Richardson, K.C. Lakin, J. Westerman, B. Nelson, and E. Hagelberg.

Citation

Anderson, L.L., Larson, S.A. and McDonald, S. (2013), "Unmet needs and quality of support for parents of transition-aged youth: Differences by disability group, age, and household income", Disability and Intersecting Statuses (Research in Social Science and Disability, Vol. 7), Emerald Group Publishing Limited, Leeds, pp. 63-95. https://doi.org/10.1108/S1479-3547(2013)0000007006

Publisher

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Emerald Group Publishing Limited