CenterPoint: The Newsletter of The University of Maine Center for Community Inclusion and Disability Studies

Healthy & Ready to Work: Engaging Youth in Their Future

Since 1996, Maine’s Healthy and Ready to Work (HRTW) Initiatives engaged and involved youth with special health needs or disabilities, and their families, in all aspects of the project work. The HRTW Initiatives were established to meet the transition to adult living needs of young people who live with chronic or life-threatening health conditions that, a generation ago, would not have survived. The Maine Adolescent Transition Partnership (MAT), Maine Adolescent Transition Project (MATP), and Maine Works for Youth! Project (MYFY!) are all Healthy and Ready to Work Initiatives funded by the Maternal and Child Health Bureau's Division of Services for Children with Special Health Care Needs (MCHB/DSCSHN).

What distinguished Maine’s initiatives was the partnership between researchers and service users in designing improved systems. Research subjects became participants in the research process. Youth, family members, health care providers, and others took part in focus group discussions to find out how each answered several key questions:

• How do participants define a positive transition outcome?
• What is “independence” and what does it mean for a young adult?
• What are the barriers to successful transition to adulthood for youth?

There were intriguing similarities and differences in the responses obtained from focus group participants. The information gained from this work enabled Maine to acquire additional funding to begin designing systems of care built upon the needs expressed by those who use the services-children and youth with special health needs or disabilities. After focus group information was collected, members of the research team, which included youth, parents, educators, health care providers, and others, reviewed the content to find three major themes emerge:

• Youth indicated they wanted to live normal lives and do what other youth their age do;
• Youth wanted to be listened to and have a role in their care; and
• Parents wanted greater access to information about services and supports available in their part of the state.

Subsequent activities were designed to engage youth, families, and other stakeholders in creating youth- and family-friendly strategies to meet the needs identified by the focus groups. One item produced was a curriculum of youth presentations called YouthSpeak. The YouthSpeak presentations enable youth to discuss their lives, needs, and dreams with groups including healthcare providers, teachers, employers, parents, and other youth. The curriculum was developed in cooperation with youth and provides a series of talking points for youth to frame their presentations. The YouthSpeak curriculum, available on CD, includes PowerPoint slides for six presentations and a guide designed to walk the user through the materials, including planning and conducting a training seminar with youth.

Youth giving YouthSpeak presentations expressed a feeling of empowerment, some for the first time in their lives. One young man, who began working with the project in 1998, became a believer in the power of speaking his truth when an audience member told him she would teach differently due to what she learned from him. Truth be told, many of the youth enjoy being in the front of the room, commanding attention and respect when they present. Feedback from those attending the presentations has been positive:

Teacher: “A teacher’s attitude can disable a student more than a physical handicap.”
Health Care Provider: “Including all youth as active participants in their care is key.”
Peer: “Today I learned how to treat a person who has a disability with respect; just like anyone else.”
Parent: “The presentation reinforced for me that kids with disabilities want the same things in life that everyone else wants.”

Youth involvement in system change extended into the policy arena in 2001 through the creation of a youth advisory council for the Maine Department of Health and Human Services Maine Children with Special Health Needs Program (CSHN) program. The group named itself YEA ME—Youth Educators and Advocators of Maine. They have carried out a number of activities including two youth conferences, on-going policy review, and most recently the creation of a soon-to-be released, youth-friendly transition workbook for Maine teens and young adults.

Toni Wall, director CSHN says, “YEA ME has provided [CSHN] the opportunity to partner with a group of remarkable young people. They have taught [us] that involving youth in the design of policies that affect them is the right thing to do. Their ideas are limitless; they truly know how to think ‘outside the box’.”

In response to parents’ expressed desire for accessible information about available services and supports, a searchable database called Service Tapestry was created on the Center for Community Inclusion and Disability Studies' website. The Service Tapestry is an on-line resource that allows individuals to obtain information about housing, employment, health care, and many other services that youth in the transition process may need.

Another product created with significant parent involvement is the Maine Health Care Notebook. The Maine Health Care Notebook is a record-keeping tool which includes pages for families to fill in with information about their child's health care needs including, medications, health care providers, hospitalization notes, insurance information, and many other items. Suggestions for use of the notebook are included and families are encouraged to “use what works” and remove the rest. The Maine Healthcare Notebook, available as a free download from the Center’s website, has been very well received across the state and continues to be one of the most requested products created by the MWFY! Project.

For more information about Maine’s HRTW Initiatives, please visit the following web links:

— Janet May

CENTERPOINT: The Newsletter of The University of Maine
Center for Community Inclusion and Disability Studies,
Maine’s University Center for Excellence in Developmental Disabilities
Education, Research, and Service


In This Issue Spring 2005 • Volume 1 • Issue 1 Early Learning Opportunities Support Quality and Access Director’s Corner Daring to Dream Awards New EC Resource In memoriam: Marcia Lovell LEARNS: Work Keeps Team Hopping IDS Curriculum Changes Dissemination Team Leads Web Accessibility Collaboration Brings Speaker to Maine Center Sponsors Exhibit Venue for VSA arts Center Hosts Visiting Fulbright Scholar UMaine Students Lead EC Conference 10 Students Graduate TOP Program Healthy & Ready to Work: Engaging Youth in Their Future Standards for All Model: Personalizing Elementary Education Selected Presentations & Publications CenterPoint Home	Center Home \| UMaine Home \| CenterPoint Home Mallory Cyr and Elijah Steward, two of the founding members of YEA ME! discuss business at a recent meeting. Healthy & Ready to Work: Engaging Youth in Their Future Since 1996, Maine’s Healthy and Ready to Work (HRTW) Initiatives engaged and involved youth with special health needs or disabilities, and their families, in all aspects of the project work. The HRTW Initiatives were established to meet the transition to adult living needs of young people who live with chronic or life-threatening health conditions that, a generation ago, would not have survived. The Maine Adolescent Transition Partnership (MAT), Maine Adolescent Transition Project (MATP), and Maine Works for Youth! Project (MYFY!) are all Healthy and Ready to Work Initiatives funded by the Maternal and Child Health Bureau's Division of Services for Children with Special Health Care Needs (MCHB/DSCSHN). What distinguished Maine’s initiatives was the partnership between researchers and service users in designing improved systems. Research subjects became participants in the research process. Youth, family members, health care providers, and others took part in focus group discussions to find out how each answered several key questions: • How do participants define a positive transition outcome? • What is “independence” and what does it mean for a young adult? • What are the barriers to successful transition to adulthood for youth? There were intriguing similarities and differences in the responses obtained from focus group participants. The information gained from this work enabled Maine to acquire additional funding to begin designing systems of care built upon the needs expressed by those who use the services-children and youth with special health needs or disabilities. After focus group information was collected, members of the research team, which included youth, parents, educators, health care providers, and others, reviewed the content to find three major themes emerge: • Youth indicated they wanted to live normal lives and do what other youth their age do; • Youth wanted to be listened to and have a role in their care; and • Parents wanted greater access to information about services and supports available in their part of the state. Subsequent activities were designed to engage youth, families, and other stakeholders in creating youth- and family-friendly strategies to meet the needs identified by the focus groups. One item produced was a curriculum of youth presentations called YouthSpeak. The YouthSpeak presentations enable youth to discuss their lives, needs, and dreams with groups including healthcare providers, teachers, employers, parents, and other youth. The curriculum was developed in cooperation with youth and provides a series of talking points for youth to frame their presentations. The YouthSpeak curriculum, available on CD, includes PowerPoint slides for six presentations and a guide designed to walk the user through the materials, including planning and conducting a training seminar with youth. Youth giving YouthSpeak presentations expressed a feeling of empowerment, some for the first time in their lives. One young man, who began working with the project in 1998, became a believer in the power of speaking his truth when an audience member told him she would teach differently due to what she learned from him. Truth be told, many of the youth enjoy being in the front of the room, commanding attention and respect when they present. Feedback from those attending the presentations has been positive: Teacher: “A teacher’s attitude can disable a student more than a physical handicap.” Health Care Provider: “Including all youth as active participants in their care is key.” Peer: “Today I learned how to treat a person who has a disability with respect; just like anyone else.” Parent: “The presentation reinforced for me that kids with disabilities want the same things in life that everyone else wants.” Youth involvement in system change extended into the policy arena in 2001 through the creation of a youth advisory council for the Maine Department of Health and Human Services Maine Children with Special Health Needs Program (CSHN) program. The group named itself YEA ME—Youth Educators and Advocators of Maine. They have carried out a number of activities including two youth conferences, on-going policy review, and most recently the creation of a soon-to-be released, youth-friendly transition workbook for Maine teens and young adults. Toni Wall, director CSHN says, “YEA ME has provided [CSHN] the opportunity to partner with a group of remarkable young people. They have taught [us] that involving youth in the design of policies that affect them is the right thing to do. Their ideas are limitless; they truly know how to think ‘outside the box’.” In response to parents’ expressed desire for accessible information about available services and supports, a searchable database called Service Tapestry was created on the Center for Community Inclusion and Disability Studies' website. The Service Tapestry is an on-line resource that allows individuals to obtain information about housing, employment, health care, and many other services that youth in the transition process may need. Another product created with significant parent involvement is the Maine Health Care Notebook. The Maine Health Care Notebook is a record-keeping tool which includes pages for families to fill in with information about their child's health care needs including, medications, health care providers, hospitalization notes, insurance information, and many other items. Suggestions for use of the notebook are included and families are encouraged to “use what works” and remove the rest. The Maine Healthcare Notebook, available as a free download from the Center’s website, has been very well received across the state and continues to be one of the most requested products created by the MWFY! Project. For more information about Maine’s HRTW Initiatives, please visit the following web links: The National Healthy Ready to Work website: www.HRTW.org Maine Works for Youth!: http://www.ccids.umaine.edu/archive/maineworks/about.htm Maine Adolescent Transition Project: http://www.ccids.umaine.edu/archive/matp YEA ME!: www.ccids.umaine.edu/archive/maineworks/yeame/ The Service Tapestry: http://www.ccids.umaine.edu/resources/servtap/default.htm Maine Health Care Notebook: http://www.ccids.umaine.edu/archive/maineworks/carenotebook.htm — Janet May

CENTERPOINT: The Newsletter of The University of Maine Center for Community Inclusion and Disability Studies, Maine’s University Center for Excellence in Developmental Disabilities Education, Research, and Service

In This Issue

Healthy & Ready to Work: Engaging Youth in Their Future