HRTW-ME : Maine Works for Youth!
 
 

HRTW – ME Maine Works for Youth!

WEBSITE: www.umaine.edu/cci/service/maineworks/index.htm

[Project Overview] [Contacts] [Abstract]

PROJECT OVERVIEW: The purpose of the Maine Works for Youth Project is to enhance the successful transition of all children, adolescents and young adults with special health care needs through the development and implementation of a statewide support and service network that is understandable, easily accessible, financially feasible, culturally competent, continuous and coordinated and in which all children with special health care needs are identified and receive the necessary supports to transition.

AWARDS
Outstanding Support to Youth in Transition Award, 2002 Excellence in Transition Conference, Portland, ME, presented by the Penquis Regional Transition Board, 12/2002

CONTACTS:
Toni G. Wall
, BS, Co-Project Director, Maine Works for Youth!
Director, The Maine Children with Special Health Needs Program,
Augusta, ME
toni.g.wall@state.me.us

Toni Wall has been is the Director of the Maine Children with Special Health Needs Program for the past 5 years, prior to that she was the Assistant Director for 4 years. Toni has a BS in Biology and will acquire her Masters in Public Administration in the spring of 2004. A primary goal and passion of Toni's is to actively promote the inclusion of families and youth in all aspects of policy development not only in CSHN but also within the other Maternal and Child Health Programs. Toni actively participates on both the CSHN Family and Youth Advisory Councils. Members from each council have commented "it's a true sense of commitment to have the Director present." Toni has lived in Maine for 25 years, she is a wife, mother and active PTA member.

EXPERTISE: Family and youth participation, transition, collaboration and partnership development, systems change and policy.

Debbie Gilmer, Co-Project Director, Maine Works for Youth!
Coordinator of Community Services, Center for Community Inclusion, UCEDD, University of Maine, Orono, ME
debbie.gilmer@umit.maine.edu
www.umaine.edu/cci

Debbie Gilmer is the Coordinator of Community Services at the University of Maine’s Center for Community Inclusion, Maine’s UCEDD (formerly UAP) and the Co-Project Director with Toni Wall of the Maine Works for Youth! Project, Maine’s HRTW Phase II project. She also co-directed Maine’s HRTW Phase I project, the Maine Adolescent Transition Partnership and the HRTW needs assessment, the Maine Adolescent Transition project. Debbie holds an M.Ed in Severe Disabilities and a B.A. in Sociology/B.S.W. In addition to this project, she is currently directing an OSERS funded model demonstration high school renewal project; a quality perspectives research project as a component of Maine’s Real Choices initiative and a statewide community education project training employment specialists and job coaches. Debbie is a former high school special educator, regional transition coordinator, statewide inclusive education project director, DD Council member, foster and surrogate parent. Debbie is a native New Yorker and has lived in Maine for more than 25 years; she travels to the coast of Oregon at every opportunity.

EXPERTISE: Participatory action research, inclusive co-instruction, inclusive education, leadership education, transition, student and person centered planning, long term care systems change, partnership development and collaboration, employment supports

ADDITIONAL STAFF
Brian Harnish, Project Specialist, Maine Works for Youth!
Center for Community Inclusion, UCEDD, University of Maine
Orono, ME.
brian.harnish@umit.maine.edu

Brian is a Project Specialist at the Center for Community Inclusion (CCI) at the University of Maine. Brian began working at the CCI in October 2001. Brian' s work involves development of web sites for the project, presentations and the development of youth oriented educational materials Brian is a member of Maine's Children With Special Health Needs Program Youth Advisory Board, the Youth Educators & Advocators of Maine (YEA ME). In his spare time, Brian enjoys learning more about computers & technology, as well as occasionally getting involved in Wheelchair sports, such as Basketball & Tennis.

Janet May, Project Coordinator, Maine Works for Youth!
Acting Coordinator for Children and Youth, Center for Community Inclusion, UCEDD, University of Maine, Orono, ME
janet.may@umit.maine.edu

Janet is the Project Coordinator for the Maine Works for Youth project at the Center for Community Inclusion (CCI) at the University of Maine. Janet was project coordinator of Maine's Healthy & Ready to Work Phase I project, the Maine Adolescent Transition Partnership (MATP) and she performs a similar function on the new project, Maine Works for Youth. Prior to coming to CCI, Janet worked as a regional transition coordinator for nine years in Maine's transition network. Janet has a BS in Physical Education and a Masters of Education in the area of Special Education from the University of Maine. For fun Janet likes to go to the ocean, bike, read and spend time with her family. ..

Bonnie Robinson, Research Associate, Maine Works for Youth!
The University of Maine Center for Community Inclusion, UCEDD, Orono, ME
bonnie.robinson@umit.maine.edu

Bonnie is the parent of a 24 year old young man with developmental disabilities. Due to her experiences with her son and her desire to help other children with special needs and their families she returned to school and earned a B.S. in Child Development/Family Relations, with a concentration in Disability Studies in 1999. She continued on to receive a M.Ed., Individualized Program focusing on Special Education, in 2001. She worked as a graduate assistant on Maine’s Phase I Healthy and Ready to Work project, the Maine Adolescent Transition Partnership (MATP) and is currently a research associate working on the Maine Works for Youth! (MWFY) project. She continues to advocate for her son in the adult service arena, is investigating home ownership for people with disabilities, and is taking a course on Assistive Technology. For fun Bonnie enjoys camping with her husband and children in her home state of Maine.

Elijah Steward, Student Project Assistant, Maine Works for Youth!
The University of Maine Center for Community Inclusion, UCEDD, Orono, ME
elijah.steward@umit.maine.edu

Elijah is a fourth year student majoring in Health/Fitness and Outdoor Education at the University of Maine. Elijah began his involvement with Maine's Healthy & Ready to Work Phase I project, the Maine Adolescent Transition Partnership (MATP) as a high school junior. He was chosen by his high school principal to participate in a Youth Leadership Initiative sponsored by the MATP project in December of 1998. Since then Elijah has presented at a number of conferences both in Maine and throughout the United States. Elijah has also participated as a trainer at subsequent Youth Leadership Initiatives, and is currently a Student Project Assistant for the Healthy and Ready to Work’s (HRTW) Phase II, Maine Works for Youth! project. Elijah is also a member of the Children with Special Healthcare Need’s youth advisory board YEA ME (Youth Educators and Advocators of Maine). In addition to his studies Elijah actively participates in several campus organizations and represents youth in numerous, on and off campus, committees. He is also a Big Brother to a 14-year-old youth. Elijah is interested in paleontology, theoretical quantum physics, and is also a fan of motion pictures. He is also a state record holder in the sport of power lifting.

Youth Advisory Members (YEA ME):
Jesse Bell, Edmunds, ME
Mallory Cyr, Sabbatus, ME
Brian Harnish, Hampden, ME
Sarah Murray, Hampden, ME
Maria Noyes, Levant, ME
Zachary Pulsifer, Hallowell, ME
Laura Son, Kennebunk, ME
Elijah Steward, Bingham, ME

ABSTRACT

MATERNAL AND CHILD HEALTH IMPROVEMENT PROJECTS

Project Title: Maine Works for Youth!
Project Number: CFDA#93110D
Project Director: Toni Wall
Organization Name: Children with Special Health Needs (CSHN) Program, Division of Family Health, Bureau of Health, Maine Department of Human Services
Address: 11 SHS, Augusta, ME 04333
Contact Person: Toni Wall
Phone: (207) 287-5350
Fax: (207) 287-5300
Email: toni.g.wall@state.me.us
Project Period: 4 Years From: 6/30/01 to 6/31/05

Purpose: The Children with Special Health Needs (CSHN) Program, Division of Family Health, Bureau of Health, Maine Department of Human Services, and the University of Maine's Center for Community Inclusion, Maine's Center for Excellence in the Developmental Disabilities Education, Research, and Service propose the Maine Works for Youth Project. Building on the successes and lessons learned from the Maine Adolescent Transition Partnership (MATP) the Maine Works for Youth Project in collaboration with University of Maine's Center for Community Inclusion, Eastern Maine Medical Center and parent advocacy and state and private agencies; and overseen by the CSHN Family Advisory Council (FAC) and the Youth Advisory Council (YAC), will work towards achievement of the six core outcome indicators of Achieving and Measuring Success for Children with Special Health Care Needs by 2010 advanced by MCHB through continuing and enhancing the statewide activities of the collaborative partnership developed in the MATP.

Challenges: Youth with special health care needs and/or disabilities continue to exit public schools poorly prepared for life as adults; age out of pediatric health care systems without adequate transition to medical homes; face lives of poverty on SSI; and, services to address these needs remain fragmented and scarce. Just as critically, youth and their families are not typically engaged in affecting and influencing systems change and reform efforts related to issues directly impacting their lives.

Goals and Objectives: Consistent with the six core outcome indicators of Achieving and Measuring Success for Children with Special Health Care Needs by 2010, the project proposes the following goals and objectives:

Goal 1
- All youth with special health care needs will receive coordinated, ongoing, comprehensive care within a medical home.

1.1 Facilitate the conduct of "Every Child Deserves a Medical Home" training program developed by the AAP by sponsoring training for various health professionals, families, community organizations and health insurance providers utilizing multiple methods of delivery, including the use of the University's ITV system and the design and publication of web based and CD modules.

1.2 Establish model medical homes for CYSHCN throughout the state and provide ongoing support and evaluation of the status.

1.3 Establish a protocol for the creation and use of Care/Life Maps for all youth with special health care needs.

1.4 Facilitate the conduct by youth leaders of the health care providers YOUTHSPEAK curriculum to family practice residents, pre-service medical students at the University of New England, and at annual Maine Medical Association meetings.

1.5 Implement educational events for providers to prepare them for efficacious practice with transitioning adolescents within a medical home context.

Goal 2 - All families with special health care needs will have adequate private and/or public insurance to pay for the services they need.

2.1 Develop and deliver modular education to youth and families about all aspects of choosing and obtaining health insurance.

2.2 Disseminate comprehensive, fully accessible information about insurance and insurance resources on-line through the Service Tapestry.

Goal 3 - All youth will be screened early and continuously for special health care needs.

3.1 Implement the Care Map protocol for all youth receiving Title V services, Part C and beyond;

3.2 Deliver culturally sensitive assessment education and training to providers through continuing education and formal coursework.

Goal 4 - Services for youth with special health care needs and their families will be organized in ways that families can use them easily.

4.1 Implement and evaluate statewide use of the Care Notebook (Children’s Hospital and Regional Medical Center, 1998) for youth and families

4.2 Maintain and expand the on-line Service Tapestry database assuring cultural competence and full accessibility to diverse audiences.

4.3 Establish an infrastructure work group who will work with the FAC and YAC to study and enhance the capacity of CSHCN to coordinate transition services and supports, including database development and ongoing education, and collaboration with related initiatives in the policy, advocacy and education arenas in Maine.

4.4 Establish a Transition Coordinator position in the CSHCN program

Goal 5 – Families of youth with special health care needs will partner in decision making at all levels and will be satisfied with the services they receive.

5.1 Establish and institutionalize the YAC and FAC as integral to the planning, functioning and ongoing capacity of CSHSN and partners to meet the changing needs of transitioning youth.

5.2 Organize and coordinate YOUTHSPEAK activities.

Goal 6 – All youth with special health care needs will receive the services necessary to make appropriate transitions to all aspects of adult life, including adult health care, work and independence.

6.1 Strengthen, maintain and expand the partnership developed in the MATP to continue to respond to youth in transition in a coordinated and culturally competent manner;

6.2 In collaboration with EMMC’s Pediatrics Department, Family Practice Residency Program and Outpatient Specialty Clinics, establish, pilot and evaluate a model pediatric to adult health care transition program.

6.3 Implement model pediatric to adult health care transition programs at Maine Medical Center (Southern Maine), Central Maine Medical Center (Central Maine) and Cary Medical Center (Northern Maine) to assure that the model is implemented statewide by the end of the grant period;

6.4 Promote community awareness and support of the strengths and needs of transitioning youth.

6.5 Educate multiple interest groups to understand the experience and meet the needs of transitioning youth with special health care needs.

6.6 Conduct benefits counseling to participating youth and families as a component of youth-adult health care transition clinics.

Methodology:

The proposed project will meet its goals through the conduct of three major activities:

  1. Youth Health, Development and Leadership;
  2. Model Community Development; and
  3. Strengthening Infrastructure.

Youth Health, Development and Leadership will include the following activities:

  • Development and dissemination of education and training for youth about managing their health, and transition to adulthood;
  • Delivering exemplary and comprehensive services and supports necessary for health and productivity through the implementation of model medical home clinics;
  • Expansion and coordination of YOUTHSPEAK, a speakers bureau of youth with special health care needs who disseminate youth-developed information about their strengths and needs to employers, providers, educators, policy makers and parents.

Within Model Community Development, the following activities will occur:

  • Development and expansion of model medical home transition clinics throughout Maine;
  • Media programming to promote community awareness of and support for youth;
  • Maintenance and expansion of the Service Tapestry, a comprehensive on-line data base of services and supports available for youth, families, providers and policy makers;
  • Provider training and education by youth and project staff in multiple venues.

Strengthening Infrastructure will include the following activities:

  • Establishment of the Youth Advisory Council to CSHCN
  • Establishment of an infrastructure work group who will work with the FAC and YAC to study and enhance the capacity of CSHCN to coordinate transition services and supports, including database development and ongoing education, and collaboration with related initiatives in the policy, advocacy and education arenas in Maine.

Evaluation: Rigorous formative and summative evaluation, with a feedback loop for immediate use of formative findings will be conducted throughout the entire project.

[Articles] [Products] [Interagency] [Sponsored Meetings] [Presentations]


ARTICLES

Monograph:
Learning About Health Insurance: A Grade 5 – 12 curriculum aligned with Maine’s Learning Results. This curriculum is a collection of classroom ideas that focus on health care and obtaining health insurance for middle school and high school age students. Audience- Educators. Available on CD and on the web at:
www.umaine.edu/cci/service/maineworks/healthinscurr/index.htm

PRODUCTS

ME Works! On the Web
www.umaine.edu/cci/service/maineworks

Youth Educators and Advocators of Maine - YEA ME www.umaine.edu/cci/service/maineworks/yeame/

Maine Works for Youth! On-Line Discussion Board
www.umaine.edu/cci/matpdisc_frm.htm

MeWorks! Pages for Youth and Young Adults www.umaine.edu/cci/service/maineworks/youth/index.htm

MeWorks! Adolescent and Transition Links www.umaine.edu/cci/service/maineworks/meworkslinks.htm

HRTW-ME -Service Tapestry
www.umaine.edu/cci/servicetapestry/index.htm
Model regional information to assist with transition planning for youth with special health care needs or disabilities The Service Tapestry Database is a searchable collection of agencies and programs selected for their relevance to young people and their families with special health care needs and/or disabilities, as well as others who are seeking information and services designed to help with the transition from school to adult life, higher education, or employment. The Service Tapestry is an on-going project and is updated regularly.

HRTW-ME - Summary, Outcomes & Impact
www.umaine.edu/cci/service/matp/matpinfo.htm
Brief overview and products from the MCHB funded HRTW Project 1997-2001.

The Maine CARE notebook
www.umaine.edu/cci/service/maineworks/carenotebook.htm
This Care notebook is designed to be a tool to assist caregivers in the record keeping of their child’s life and medical journey. It is hoped that the Health Professional can use it to get a quick, complete overview of the child with special health needs to better serve them. Audience--Parents of children with special health care needs.

Roadmap to Success: A Path to Fulfilling Your Goals
www.umaine.edu/cci/service/maineworks/triptik.htm
This pamphlet was produced by the YEA ME advisory council and includes important benchmarks and activities to prepare youth for adult life. Audience-Youth. It will be available on our website by Summer 2003.

YouthSpeak CD - 2nd edition
www.umaine.edu/cci/service/maineworks/youthspeak.htm
YouthSpeak is a collection of presentations developed by youth who have participated in leadership activities hosted by the Maine Adolescent Transition Partnership. These six presentations are used by youth to conduct workshops, keynote presentations and other educational activities for educators, employers, health care providers, parents, peers and policy makers throughout the state.

MeWorks! Valuable promotional items developed and produced this year include: Informational bookmark, pens, pencils, totebags, and t-shirts.

INTERAGENCY PARTNERSHIPS & AGREEMENTS

The Maine Works! Initiative enjoys collaborative partnerships with numerous state agencies and organizations including:

  • Maine Department of Education
  • Maine Department of Labor, including Workforce Development and the Bureau of Rehabilitative Services. The project is represented on the Bureau’s Ticket Roll Out Task Group
  • Maine Department of Human Services Bureau of Elder and Adult Services and Bureau of Medical Services (the state’s Medicaid agency). The project is represented on a number of committees working on the implementation of the New Freedom Initiative and the Workers with Disabilities option under MaineCare (Maine’s Medicaid program) as well as other long term care systems change initiatives
  • Eastern Maine Medical Center and its specialty clinics
  • Kennebec Pediatrics
  • Winthrop Pediatrics and its Rural Medical Home project
  • Maine Support Network, a professional development organization addressing the needs of educators
  • Maine Commission on Community Service (where we are working to enhance the opportunity for youth with disabilities to participate in community and national service programs like Americorps
  • Maine CITE, Maine’s AT project
  • Maine Youth Leadership Network
  • Maine Committee on Transition and the Maine Transition Network
  • Maine School Nurses Association

HRTW-ME SPONSORED MEETINGS

  • 3rd Annual Youth Leadership Conference with Maine’s CSHN Program, Augusta, ME, 10/2002
  • Annual Family Advisory Conference with Maine’s CSHN Program, Augusta, ME, 11/2002
  • Annual Winter Retreat of the Maine Support Network for Educators, Come With Me Beneath the Sea: Exploring the Depths of Educating All Children, Rockport, ME, 02/2003

PRESENTATIONS

NATIONAL

YouthSpeak: What we want caregivers and policymakers to know! Ken Crest Services 2003 National Conference, Building Relationships, Respecting Diversity: Children Who Are Medically Fragile or Technology Dependent, Philadelphia, PA, 3/2003. [HRTW-ME, CYR, CYR & MAY]

Partnering with families and youth, Annual meeting of the Association of Maternal and Child Health Programs, Arlington, VA, 03/2003. [HRTW-ME, GILMER & WALL]

Youth Voices on Inclusive Education in Maine, presentation to US Virgin Island UCEDD colleagues by YEA ME members, Orono, ME, 02/2003. [HRTW-ME, NOYES, HARNISH & STEWARD

YouthSpeak: What We Want Our Policy Makers to Know! Invited presentation to the Region I Administration on Children and Families Promoting Positive Youth Involvement conference, Springfield, MA, 09/2002. [HRTW-ME, GILMER, MAY, BELL & NOYES]

Transition from Pediatric to Adult Care for Children with Special Health Care Needs: Perspectives from Maine, Georgetown University Training Institutes 2002, Developing Local Systems of Care for Children and Adolescents with Emotional Disturbances and Their Families, Washington, DC, 07/2002. . [HRTW-ME, WALL, GILMER & HARNISH]

Daughters and sons of the heart: Navigating the multigenerational impact of mental illness, Annual Conference of the Research and Training Center on Family Support and Children’s Mental Health, Portland, OR, 05/2002. . [HRTW-ME, GILMER]

STATE

YouthSpeak: What we want our teachers to know! Adapting Instruction for Students with Disabilities (SED 402), University of Maine, Orono, ME, 06/2003. [HRTW-ME, Steward & MAY]

YouthSpeak: What we want our teachers to know! Adapting Instruction for Students with Disabilities (SED 402), University of Southern Maine, Gorham, ME 06/2003 [HRTW-ME, Son, Charronsmith & MAY]

YouthSpeak: What we want our teachers to know! Adapting Instruction for Students with Disabilities (SED 402), University of Maine, Orono, ME, 05/2003. [HRTW-ME, Son & MAY]

Parents’ Experience with Special Education in Maine, Adapting Instruction for Students in Disabilities (SED 402), University of Maine, Orono, ME, 02/2003. [HRTW-ME, LUCAS & ROBINSON]

Exploring the Ocean of Health Care and Insurance, Come With Me Beneath the Sea: Exploring the Depths of Educating All Children, Rockport, ME. 02/2003. [HRTW-ME, LUCAS, MAY & ROBINSON]

Raising Our Voices for Opportunity, Equality and Justice, The Annual International TASH conference, Boston, MA, 12/2002. [HRTW-ME, WALL, HARNISH, BELL, NOYES & SON] www.umaine.edu/cci

Youth Influencing Change In Maine, “Celebrating Excellence In Transition,” So. Portland, ME, 12/2002. [HRTW-ME, SON, HARNISH & MAY]

Parents’ Experience with Special Education in Maine, Adapting Instruction for Students with Disabilities (SED 402), University of Maine, Orono, ME, 12/2002. [HRTW-ME, LUCAS & ROBINSON]

YouthSpeak: What We Want Our Peers to Know, Maine Youth Action Network Peer Leadership Conference, Bangor, ME. 11/2002. [HRTW-ME, NOYES, CHARRON-SMITH, MAY]

Transition & youth with special health care needs, Introduction to Interdisciplinary Disability Studies (DIS 400), University of Maine, Orono, ME, 11/2002. [HRTW-ME, MAY]

YouthSpeak: What We Want Our Parents to Know, Family Advisory Council, Augusta, ME, 11/2002. [HRTW-ME, NOYES & ROBINSON]

Medical Issues: How to Deal with Them, 3rd Annual Teen Conference “Preparing for the Future: Roadmap to Success,” Augusta, ME. 10/2002. [HRTW-ME, HARNISH & SON]

After High School: Learning Opportunities, 3rd Annual Teen Conference “Preparing for the Future: Roadmap to Success,” Augusta, ME 10/2002. [HRTW-ME, STEWARD & CYR]

Real Life Skills: From Laundry to Finances…, 3rd Annual Teen Conference “Preparing for the Future: Roadmap to Success,” Augusta, ME 10/2002.. [HRTW-ME, Bell & Noyes]

Focus on the Positives, Eliminate the Negatives: Living Day-to-Day With A Chronic Illness, 3rd Annual Teen Conference “Preparing for the Future: Roadmap to Success”, Augusta, ME 10/2002 [HRTW-ME, GREEN]

YouthSpeak: What we want our teachers to know! Adapting Instruction for Students with Disabilities (SED 402), University of Maine, Orono, ME, 09/2002. [HRTW-ME, HARNISH & MAY]

Youth Leadership Basics, Learning to Speak the Language, Committee on Transition Youth Leadership Training Retreat, China, ME, 09/2002. [HRTW-ME, MAY]

YouthSpeak: What we want our teachers to know! Math Methods in Special Education (EDU 590), University of Maine, Orono, ME, 07/2002. 09/2002. [HRTW-ME, ROBINSON & STEWARD]

YouthSpeak: What we want our teachers to know! Educational Needs of Students with Physical/Medical Disabilities (SED 572), University of Maine, Orono, ME, 07/2002. 09/2002. [HRTW-ME, HARNISH & MAY]