Healthy and Ready to Work: A qualitative study of the experience of local young adults and their service providers

By Charlene Trovato, PhD

Transitioning into adulthood is, at best, a challenge for all youth worldwide. For adolescents with special health care needs, challenges are intensified. In the last decade of the 20th century, research showed that only 8% of young adults with disabilities in the United States are fully employed or enrolled in postsecondary education, actively engaged socially, and living independently in a community setting (Wagner, 1995). Additionally, minority youth with disabilities who live in poverty are more likely to drop out of school or be expelled from school and become economically unengaged adults (Lewit et al., 1997). Research conducted internationally on postsecondary outcomes for students with disabilities indicate similar rates of unemployment and disengagement in their community (Felce and Perry, 1997).

Nationally, a philosophical shift is occurring. This is a movement away from a patronizing “taking care” attitude about people with disabilities to an assumption that all individuals can are competent and capable of determining and creating their own future. There is growing belief that people with disabilities should experience career development and are capable of life-long learning; that they can live inter-dependently and living interdependently, achieve economic independence and self-sufficiency; that they should be included in regular school-to-career opportunities, and an can expand their concept of outcomes as more than simply “getting a job.”

Professional behavior is driven by beliefs and principles, not by laws and regulations, and transition service delivery reflects a commitment to the centrality of the right of the individual to make decisions about his or her life. Supporting an individual in decision making is different from turning our judgment into another person’s future.

Dr. Charlene Trovato collaborated with the Allegheny County Healthy and Ready to Work Task Force on this research project. The vision was to build the leadership capacity of service delivery systems to initiate and sustain profound systemic change that will result in a seamless, coordinated, integrated, and successful transitioning of youth with special healthcare needs from high school to work, to post- secondary education, to vocational training, and to interdependent community living.
The goals of this project were to:

1. develop a complex understanding of beliefs, perceptions, and attitudes of individuals with special health care needs and of those who service and support them as they transition into adulthood.

2. develop a complex understanding of how service delivery systems and community supports empower or disempower individuals with complex health care needs as they transition into adult life.

3. develop a complex understanding of barriers created by mind sets institutionalized in the service delivery systems.

4. identify strategies implemented by individuals with special health care needs that foster their successful connection to the essential elements needed to achieve their goals.

5. explore new ways that service delivery systems and community supports can evolve to be more responsive to challenges and opportunities faced by individuals with developmental disabilities—especially for those who are transitioning into the community today, and invest in their capacity to embrace those challenges and opportunities in the future.

6. explore a new vision for interdependent communities where individuals with disabilities are valued and have access to the support they need.

Qualitative data were collected to clearly and precisely define the changes that must take place both within and among systems to ensure that individuals with special health care needs experience seamless, coordinated supports and services as they transition to adulthood.

The methods of collecting information to meet the goals of the project included:

1. screening information from phone contacts with individuals who had expressed an interest in participating.

2. completing demographic data sheets for the participants: individuals with special healthcare needs, parents of young adults with special healthcare needs, and service providers.

3. conducting four homogeneous focus group sessions: two groups of individuals with special healthcare needs; one group of service providers; and one group of parents.

The majority of voices heard during the four focus group sessions urged service delivery systems to find new ways of doing business that are more responsive to the needs of their clients, to foster interagency collaboration, to offer coordinated and seamless services, and to build communication networks among the service delivery systems and consumers of their supports and services.

Based on the findings, Dr. Trovato made the following recommendations to the PA Department of Education:

1. Young adults with complex medical needs would benefit from learning strategies, beginning at 14 years, to help them acquire self-determination and self-advocacy skills.

2. Young adults with special health care needs, providers, and families would benefit from a common body of knowledge and a common language for communicating with each other about supports and services.

3. Young adults with special health care needs and their families would benefit from collaboration among a core group of physicians in pediatric and adult medicine who could develop and pilot a coordinated, seamless health care transition. This process would be expanded for community based and hospital care.

4. Young adults with special health care needs would benefit from peer mentoring programs during high school. These mentoring programs should pair high school students with disabilities with those who are in post-secondary education and vocational training as well as those who are employed and living independently in communities. Mentoring programs create powerful peer networks for individuals with special health care needs.

5. Service delivery systems would benefit from thinking about transition to adulthood as a human process. This recommendation is based on a discussion that occurred among a few providers who felt the need for “how to, A B C books, or where to go to find” books.

6. The educational system would benefit from identifying transition coordinators who have a deep knowledge of the transitioning process, what funding stream will pay for which services, understand how to network with providers who offer specific services and supports, including transportation and health care, and are committed to helping individuals with special health care needs prepare person-centered transition plans that reflect the individual’s dreams, aptitude, and interests. To accomplish this, educational systems need to identify or hire individuals whose sole responsibility and focus is ensuring that the IEP process is person and family centered, and live up to the spirit of IDEA.

7. The young adult with special health care needs would benefit from health care being an integral part of their transition planning.

8. The young adults with special health care needs and their families would benefit from a single point of contact that coordinates all services across systems without regard to the funding stream.