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Barriers to Transition Planning for Parents of Adolescents with Special Health Care Needs

Research to Practice 19

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Originally published: 12/1998

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By Jaimie Ciulla Timmons, James P. McIntyre Jr., Jean Whitney-Thomas, John Butterworth, & Deborah Allen

Introduction

Adolescence is a time of rapid change for young people and their families. This period brings a negotiation of relationships and roles, changing life routines, and a mixture of fear and excitement about new opportunities. Adolescents with special health care needs and their families are no exception to these changes; yet they also face additional challenges. Planning for long-term health care, medical insurance, and day-to-day support needs may bring family members more closely into the transition process as the adolescent strives for independence. Parents' legitimate fears about safety and security may lead them to remain engaged in their children's lives. Finally, families and young adults must negotiate a variety of new service systems and rules during this period.

This study examined the transition planning experiences and concerns of family members of young adults with special health care needs throughout Massachusetts. As a planning activity of the Department of Public Health's Massachusetts Initiative for Youth with Disabilities (MIYD), this study investigated the challenges that these families faced during the transition from school to adult life.

Methodology and Participants

This report summarizes the experiences of 30 family members throughout Massachusetts. Five focus groups were conducted across the state (see Table 1). Twenty three of the 30 family members were white, two were African-American, and five were Latino. Focus group participants included parents of young adults with chronic medical conditions, physical disabilities and developmental disabilities. Case studies were also conducted with three additional families that detailed their experiences as they prepared for their children's transitions from school to adult life. Table 2 describes the families profiled in the case studies.

Table 1: Focus Group Location and Participants

This table has two columns and five rows. The categories are Location and Number of Participants.

West Boylston-1 (Since only one parent attended this focus group, it was conducted more in the style of an interview)

Newton-7

Athol-12

Lakeville-6

New Bedford-4

Table 2: Case Study Families: Descriptive Information

This table has five columns and three rows. The second row contains four sub-rows, one for each child. The categories are Family, Location, Child's Gender, Child's Age, Disability

Family 1: Suburban Boston-Female-19-tubular myopathy

Family 2-North-Central Mass.-Male-19-amino deficiency, asthma, dysmotility-Female-12-GI complications, asthma-Female-10-autism, epilepsy-Female-7-chronic intestinal pseudo obstruction

Family 3-Western Mass-Male-11-Down Syndrome

Findings

1. Parents experienced challenges with service delivery systems, day-to-day living, residential location, and uncertainty about the future.

Parents felt that service delivery systems were:

2. Parents struggled with the challenges of day-to-day living. This included the management of responsibilities and obligations as well as the provision of daily specialized care.

3. Parents described challenges associated with residential location including poor transportation, greater isolation and difficulty accessing resources.

4. Parents were challenged by the future uncertainty of adult supports and resources and were concerned about what might happen after they are no longer able or present to provide for their son or daughter.

Implications and Recommendations

The findings of this study emphasize barriers to transition planning faced by parents of young adults with special health care needs as they prepare their children for adult life. The following recommendations are for policymakers and service professionals.

1. Improve Access to Information

2. Establish Consistent Longitudinal Supports

3. Support Flexible Resources

Acknowledgements

For more information on this study, please contact Jaimie Ciulla Timmons at (617) 355-8212, ici@umb.edu

For a publications brochure or general information, contact the Institute for Community Inclusion, University of Massachusetts Boston, 100 Morrissey Boulevard, Boston, MA 02125. (617)287-4300 (v); (617)287-4350 TTY; ici@umb.edu

This is a publication of the Institute for Community Inclusion and the Massachusetts Department of Public Health. It was supported in part by project # MCJ-25HRW1 from the Maternal and Child Health program (Title V, Social Security Act), Health Resources and Services Administration, Department of Health and Human Services. This document is supported, in part by a cooperative agreement, No. 90DN0032, from the Administration on Developmental Disabilities, Administration for Children and Families, U.S. Department of Health and Human Services. 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 Administration on Developmental Disabilities policy.