Part II: Clinical Practice Guidelines for Adolescents and Young Adults With Down Syndrome: 12-21 Years

Susan Van Cleve, MSN, RN, CPNP; Sheila Cannon, MEd; William I. Cohen, MD

Disclosures

J Pediatr Health Care. 2006;20(3):198-205. 

In This Article

Transition Process

The move to adult life after high school is one of the most important transitions a person with DS will make. Planning for this transition should begin early and involves several steps. First, as part of the IEP, the transition plan is developed beginning at 14 years of age. By age 16 years, the plan must include a statement of "transition services" or postsecondary school agency or service links. The most common opportunities for students after graduation are postsecondary education and employment. The transition plan should reflect an understanding of the adolescent's personal strengths and interests; any services the student may need to help realize his or her vision for the future; job market and training programs that will have the highest likelihood of entry to the workforce; connections with community agencies/organizations that can help facilitate the student's transition; and programs that will support independence in the workforce as well as community living. It is important for transition planning to occur early in the student's high school program so curricular options can be evaluated and requirements for graduation may be considered while planning the student's academic and vocational program (National Down Syndrome Society [NDSS], 2005).

After high school, persons with DS may pursue postsecondary education in academic programs, vocational or training programs, or innovative programs that combine academics with vocational training. Programs and schools vary widely in terms of offered academics, residential options, independent living skills training, and the type of certification or type of diploma awarded.

Persons with DS have a variety of options after high school graduation depending on their abilities and interests: competitive employment, supported employment, or sheltered employment. In competitive employment, the individual secures employment in the community and works independently without any support services. In supported employment, the individual works in an integrated setting and receives support services from a job coach who accompanies the individual to the workplace to enable him or her to learn the necessary job skills. The job coach works with the individual full time initially but decreases involvement as the individual learns the skills necessary to be independent. Sheltered employment provides opportunities for individuals to work in self-contained settings with others who have disabilities without the integration of nondisabled workers (NDSS, 2005).

At the time of transition planning, families and adolescents need to think carefully about living arrangements. Housing options available for the young adult with DS include maintaining the status quo, which usually involves living with his or her family; enrolling in postsecondary education programs and residing in student housing; moving into supportive living arrangements in which he or she can live in a house or apartment of his/her own, with or without roommates, and receive supportive services as needed; or living in a group living situation where he or she shares a home with other persons with disabilities and has a 24-hour support staff. The transition plan should identify where the student would like to live and the skills he or she must develop in order to successfully make the transition. The following skills are necessary for success: caring for personal hygiene, preparing meals, managing finances, and learning how to use transportation systems. Families should check with their local Association for Retarded Citizens (ARC) organization for any updates on housing and independent living in their region (www.thearc.org). Families also can contact "The Home of Your Own" initiative through the American Association on Mental Retardation (www.aamr.org). See Table for a summary of transition planning.

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