WEBSITE: www.shrinershq.org/choices and chs.ky.gov/commissionkids

[Project Overview] [Contacts] [Abstract]

PROJECT OVERVIEW: Young people with special healthcare needs are much less likely than their peers to finish high school, to pursue post-secondary education, to get jobs with health insurance benefits, and to live independently. The purpose of the KY TEACH project is to 1) create system changes that promote smooth transitions from school to work and from pediatric to adult healthcare in Kentucky; 2) increase the number of children, adolescents, and young adults with special healthcare needs in Kentucky who have medical homes and coordinated healthcare; 3) increase the number of young people with special healthcare needs in Kentucky who are prepared for employment with health insurance benefits; and 4) work with children, families, and young people to teach them the skills needed to maneuver through the various systems of healthcare and employment in Kentucky. This project builds upon the long history of collaboration among providers developed through the CHOICES and WISH Projects that enhanced coordinated services among the Kentucky Commission for Children with Special Health Care Needs, Shriners Hospitals for Children, Vocational Rehabilitation, managed care organizations, education and independent living agencies, family advocacy organizations, and others.

NOTE: The MCHB funding for this project ends September 2003. The Kentucky Commission for Children with Special Heath Needs was awarded two MCHB Healthy & Ready to Work grants, Phase I from 1996 - 1999 and Phase II from 1999 – 2003. With eight years of program experience and staff development at the state and local levels, key contacts from this project are willing to share ideas, lessons learned with other State Title V CSHCN Programs.
Contact: Lee Gordon at lee.gordon@mail.state.ky.us

CONTACTS

Eric Friedlander, BS, Director, KY TEACH
Executive Director, Commission for Children with Special Health Care Needs, Louisville, Kentucky, eric.friedlander@mail.state.ky.us

Eric is a native of Kentucky, and has 17 years of experience in State Government. Within the area of Health Services he has been involved with the Certificate of Need and State Health Plan. In the Inspector General's Office he was involved in developing health care facility licensure standards. In the Office of Program Support he was responsible for Cabinet for Health Services budget, legislation, regulations, and assuring programmatic implementation. Within the educational area Eric managed the statewide Family Resource and Youth Services Center initiative responsible for coordinating health and social services in schools. Currently Eric is the Executive Director of the CCSHCN that merged with the Part C Early Intervention program in October, 2001.

EXPERTISE: Incorporating Transition Services into a Title V/CCSHCN program and programming for transitions of CYSHCN from birth through young adulthood

Lee Gordon, BS, MPA, Program Coordinator KY TEACH
KY Commission for Children with Special Health Care Needs, Louisville, KY
lee.Gordon@mail.state.ky.us

Lee is a native of Kentucky. He has a bachelor’s of health science degree in health administration from the University of Kentucky and a master’s of public administration degree from Eastern Kentucky University. He is the Program Coordinator for the Kentucky Youth Transitioning to Employment and Comprehensive Healthcare Project (KY TEACH). As Program Coordinator, Lee works with children, adolescents, families, support groups, and service providers to help ensure that Kentucky children with disabilities have appropriate primary medical care and are prepared to successfully transition from school to work, from home to independent living and from pediatric to adult health care. Prior to his employment with the Commission Lee was a nursing home administrator. Lee is a quadriplegic as a result of a car accident in December of 1989 at the age of 18.

EXPERTISE: Collaborating with Independent Living Centers, Parent Support Groups and Vocation Rehabilitation.

Kathy Blomquist, RN, PhD, KY TEACH Project Consultant
KY Commission for Children with Special Health Care Needs, Lexington, KY
kathyb.blomquist@mail.state.ky.us

Kathy has a background in public health nursing in Ohio, school nursing in Texas, and teaching nursing in Illinois and Kentucky. She holds a BSN from the University of Minnesota, a MSN from the University of Texas, an MPH from the University of Illinois, Chicago, and a PhD in Educational Psychology from the University of Kentucky. She has participated in several research and evaluation projects at the University of Kentucky. She joined MCHB-funded activities in 1994 as the federally-funded CHOICES Co-coordinator when the Project was expanding public-private collaborations and care coordination across the country. She continued in this position with the CHOICES Transition Project during Healthy and Ready to Work, Phase I and as KY TEACH Grant Manager during HRTW, Phase II until June, 2001. She is now a consultant to the Project with a focus on evaluation.

EXPERTISE: Care coordination, program development and evaluation.

ABSTRACT

Organizational Setting: The KY TEACH Project builds upon a long history of coordination of services developed throughout the last decade through CHOICES and the WISH Healthy and Ready to Work Project collaboration among the Kentucky Commission for Children with Special Health Care Needs (CSHCN), Shriners Hospitals for Children, and Vocational Rehabilitation.

Purpose: Expand the collaborating partners in Kentucky to include schools, independent living centers, managed care organizations, family training centers, the Medical Home Project of the American Academy of Pediatrics, and community healthcare providers. Transition programs and linkages with community resources will be developed to assist young people with special healthcare needs to find medical homes (primary care) and employment with health insurance.

Problem: Ten to twenty percent of the children in the U.S. are born with a chronic illness or disability and medical advances have enabled more than 85% of these children to live well past childhood. Transition into the adult world includes moving from pediatric to adult healthcare, from school to work, and from home to the community. The success of this transition depends upon the relationships among the adolescent, family, supports, and service providers; if these individuals work well together, successful transition becomes more likely.

Goals And Objectives:

Goal 1: Increase the number of children, adolescents, and young adults with special healthcare needs in Kentucky who have medical homes and coordinated healthcare.

1.1 Enhance the capacity of pediatric and adult healthcare providers to provide medical homes through education about special healthcare needs and use of funding and service delivery systems.

1.1.1 Identify systems barriers and training needs of pediatric and adult community based health providers for supporting medical homes for individuals with disabilities.

1.1.2 Implement innovative training programs, designed to address the identified needs and perceived system barriers, for pediatric and adult community based health providers to become medical homes.

1.2 Strengthen collaboration between medical homes and specialty care providers at tertiary centers and community levels.

1.2.1 Expand systems for referral and care coordination among medical homes and specialty providers building upon the CHOICES system.

1.2.2 Continue to expand efforts to locate medical homes for all children currently being served by the KY Commission and Shriners Hospitals for Children in Lexington.

1.2.3 Raise awareness among non-health providers about the importance of medical homes for all children and especially youth with special healthcare needs, through training, education, and other innovative methods in schools, community hospitals, social service agencies, and family organizations.

1.2.4 Expand, develop, and maintain directories of available pediatric/adult medical homes by working with parent groups, managed care organizations, and community providers.

1.3 Enhance the abilities of parents and young people to access and use medical homes, specialty care providers, and healthcare funding mechanisms.

1.3.1 Work with young people, families and staff to identify skills needed for and barriers to funding, accessing, and using medical homes.

1.3.2 Work with young people and families to enhance the abilities needed for accessing and using medical homes and healthcare funding mechanisms.

Goal 2: Increase the number of young people with special healthcare needs in Kentucky who are prepared for employment with health insurance benefits.

2.1 Enhance the capacity and willingness of the service delivery system to prepare young people with special healthcare needs for employment.

2.1.1 Identify systems barriers and training needs of employers and community health and social service providers in supporting preparation of young people for employment with health insurance benefits, including use of federal work incentives, laws, and regulations.

2.1.2 Work collaboratively to solve the identified system barriers.

2.1.3 Implement innovative training programs, based on identified needs and barriers, for providers at community based health, education, and social service agencies to learn how to prepare young people with special healthcare needs for work beginning in the preschool years and continuing through post-secondary education.

2.2 Enhance the skills of young people to find and keep jobs.

2.2.1 Target a group of 20 young people with disabilities who are seniors in high school and receiving SSI served by Shriners Hospital and/or the KY Commission to receive intensive care coordination as they transition from school to work using the systems of services and resources available in KY.

2.2.2 Work with young people, their families, staff, and employers to identify skills needed for success in the work setting.

2.2.3 Work directly with young people to develop the skills needed for employment with health insurance benefits.

Methodology: Methods to be used: 1) Needs assessments and planning including focus groups and surveys; strategic planning by the Advisory Committee about statewide activities and evaluation strategies; meetings of Commission, Shriners Hospital and other staff, and parents and young people to plan, set targets for and participate in programs; and project staff as they work with national organizations and the Healthy and Ready to Work Network; 2) Implementation including teamwork of staff, parents, and young people in developing the collaborations and monitoring the changes in practices and transition outcomes; trainings of agency staff and community providers, families and young people; direct service programs with selected youth; 3) Dissemination of processes and products developed through web sites, newsletters, and presentations at local, regional, and national professional and parent meetings; and 4) Evaluation and monitoring of outcomes for young people and systems and costs of the project.

Evaluation: Levels of evaluation include: 1) systems changes within Kentucky and how agencies collaborate among themselves and coordinate transition services; 2) evaluation of the specific programs put in place in the KY Commission clinics and Shriners Hospital in Lexington in terms of participation, evaluation, and outcomes perceived by staff , young people and their families; 3) evaluation of the effects of systems and specific programs on changes on transition outcomes of young people, especially those graduating from the KY Commission for CSHCN and Shriners Hospital in Lexington; and 4) description of the benefits and costs of the project. Evaluation of this project will be coordinated with the “Healthy and Ready to Work” Network in consensus data collection and evaluation of protocols. The project will also collect specific data sets including adult healthcare provider(s), SSI status, education level, living accommodations, work and health insurance status for all young people who graduate from the Shriners Hospitals in Lexington and the KY Commission throughout the 4 years of the project. Use of this process will show trends in transition to adult healthcare and financing of healthcare, work, higher education, independent living with needed supports, and use of SSI and other federal/state financial assistance programs for all young people who leave these two systems of care.

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

ARTICLES

• Blomquist, K.B., Brown, G., Peersen, A., & Presler, E.P. (1998) Transitioning to independence: Challenges for young people with disabilities and their caregivers. Orthopedic Nursing 17 (3), 27-35. Overview of transition challenges, outline of interventions for health care professionals, tables with questions to ask as youth transition, table with transition resources. Target Audience: Health Professionals/some of the tables/charts would be useful to families and youth. To receive a copy contact Kathyb.blomquist@mail.state.ky.us.

PRODUCTS
Materials on Commission Web Site: http://chs.ky.gov/commissionkids

Contact:
Lee Gordon at (502) 595-4459 x 268, Lee.Gordon@mail.state.ky.us - or -
Kathy Blomquist (859) 252-3170 x 242 , KathyB.Blomquist@mail.state.ky.us

For Health Care Visits

• Adolescent Health Care – list of ideas for discussion/evaluation at health care visits
• Transition Guidelines for ages 11-21 (including 2010 Healthy People Objectives)
• Areas of Assessment for Transition Planning - Transition Assessment Questions
• Competencies for Young People Transitioning to Post-Secondary School and/or Work
• Finding and Using Adult Health Care
• Life Maps – screening tools for ages birth through 21
• Teaching Sheets – One-pagers related to topics on the Life Maps

Health Services and Information in Kentucky

• Summary of KY Services for Youth with Special Health Care Needs
• Basics of KCHIP
• EPSDT – preventive health care for children and teens
• Medicaid Information

Information Sheets for Families, Youth and Providers

• Newsletters for Youth, Families, and Staff (in pdf format; also available in Publisher and Word from KY TEACH staff)
• ADA vs IDEA
• Private Insurance Tips
• College Preparation Timeline
• Funding Your Future: Paying for Education after High School
• 8 Steps to Follow when Hiring a Personal Care Attendant (PCA)
• Special Help for Youth in Transition – SSI Work Incentives and VR
• Transition Resources and Links – list of transition websites and other resources
• Tips for Evaluating Internet Sites for Credibility

Other materials available from the KY TEACH Staff

Contact:
Lee Gordon at (502) 595-4459 x 268, lee.gordon@mail.state.ky.us
Kathy Blomquist (859) 252-3170 x 242 , kathyb.blomquist@mail.state.ky.us

For Health Care Visits

• Transition Checklist: Ages Birth through 12 – one page (front only) list including health behaviors and independence, school and work skill development behaviors
• Transition Checklist for Youth – one-page (front and back) list of transition skills including health behaviors and independence, school and work behaviors. This list includes items on the Birth-12 list that are still relevant and items relevant for teen and young adult ages.

The entire transition checklist has been computerized and is currently being piloted by several Commission district offices.

For Families and Children and Youth with Special Health Care Needs

• Medical Information Wallet Tri-fold
• Preparing for the Future for Families of Teenagers with Special Needs
• Transitions: A Guide to Getting Older and Changing Health Care Providers
• Thinking About Your Future (healthcare, education, employment)
• Ten Steps to Job Success
• Checklist request for resources for physicians and parents

Recreation and Summer Activities

• Girl Scout Troop Activities
• Flyers advertising camps, GED courses, summer activities
• List of summer camps and other special recreational activities for youth with special needs

Research Results: Surveys

• Survey Instruments: Young Adult Graduates of the CCSHCN and Shriners Hospital, Lexington, 2002
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• Survey Results: Descriptions of findings from surveys of CCSHCN and Shriners Hospital, Lexington, graduates conducted from 1999-2002
• Survey Instruments: CHOICES Transition Project for young adults, staff, teens, and families
• Survey Results: Results of Surveys of Young Adults; Staff of Title V/CSHCN, Shriners Hospitals, and Vocational Rehabilitation Professionals nationwide from the CHOICES Transition Project, 1997
• Survey Forms: Transition Activities in the CCSHCN Offices and at Shriners Hospitals, 2001
• Survey Form and Results: Survey of Girl Scout Leaders, 2001

Presentations by the Project

• Powerpoint Presentations: Integrating Transition into a Title V CYSHCN Agency
• Medical Home Training Transition Component – via American Academy of Pediatrics at www.aap.org – premiered at KY Medical Home Training in Lexington 12/2000

Misc
Reporting Forms for Contract agencies

Computerized transition checklist
Transition Checklist for CUP (Computer Utilization Project) - The Transition checklist for CUP is a list of important health and independence-building behaviors by chronological age that can be used for tracking and documentation. The purpose of this documentation is to encourage discussion and build expectations for health and independence skills with Commission families and patients. Available in paper format.

INTERAGENCY PARTNERSHIPS & AGREEMENTS

2002 – Completed Service agreement with Mid-South Regional Resource Center for Technical Assistance that included language related to Part B and C and support for and through Commission Programs. This was considered a first for the Technical assistance team in that it encompassed Title V and Part B and C of IDEA. This group normally assigned to assist states with IDEA implementation, served as the facilitators of the Strategic planning process. During the Strategic planning process staff were instructed to take into consider transition across the life span of the child.

PRESENTATIONS

NATIONAL

Integrating Transition into a Title V agency, Pediatrician’s Title V CSHCN Institute, American Academy of Pediatrics, Chicago, IL, 5/17/03. [HRTW-KY, Friedlander]

Integrating Transition into a Title V Agency, Component of Skill-Building Session, What’s Health Got to Do with Transition? Everything! Tools and Tips for State Title V CYSHCN Programs, Youth & Families, 2003 Association of Maternal and Child Health Programs (AMCHP) Annual Meeting, Washington, DC, 3/8/03. [HRTW-KY, Friedlander]

“HRTW Presentation” to Russian Delegation, U.S. Peace Institute, Louisville, KY, 11/5/02. [HRTW-KY, FRIEDLANDER]

“Transition Programs in Kentucky and Iowa”, 2010 Express Conference, sponsored by MCHB, Washington, DC, 12/12/01. [HRTW- KY, FRIEDLANDER; HRTW-IA, HILLYARD, and youth representatives]

STATE

“HRTW Services,” State Advisory Panel for Exceptional Children. This group advises the Kentucky Department of Education concerning policies related to Special Education (Part B of IDEA), 01/2003. [HRTW-KY, FRIEDLANDER]

“Merging Commission Title V programs with Part C programs including Transition activities,” 10th Annual Infant and Toddler Conference, sponsored by the CCSHCN & the Cabinet for Health Services, Gov. Office of Early Childhood Development, KY Head Start Association and the Dept. for Community Based Services, Louisville, KY, 10/2002.. [HRTW-KY, FRIEDLANDER]

“Merging Commission Title V programs with Part C programs including Transition activities,” 45th Annual Maternal and Child Health Conference, sponsored by the Kentucky Dept for Public Health and the Kentucky Medical Association, Louisville, KY, 9/19/02. [HRTW-KY, FRIEDLANDER]

“Preparing for Life after High School: Promoting Self Determination & Futures Planing for C/YSHCN”, 45th Annual Maternal and Child Health Conference, Kentucky Dept for Public Health and the Kentucky Medical Association, Louisville, KY, 09/2002. [HRTW-KY, GORDON & David Allgood, Community Advocate, Center for Accessible Living, Louisville]

“Transition Services,” Families and Children Subcommittee of the Kentucky Legislature, Frankfort, KY, 9/18/02. [[HRTW-KY, FRIEDLANDER]

“Transition Services,” Consumer Advisory Board for the Interdisciplinary Human Development Institute at the University of Kentucky. Lexington, KY, 09/2002. [HRTW-KY, FRIEDLANDER]

“Transition Services,” Consumer Group for Olmstead Compliance, Kentucky Cabinet for Health Services, Frankfort, KY, 06/2002. [HRTW-KY, FRIEDLANDER]

“Preparing for Life after High School: Promoting Self Determination and Futures Planning for C/YSHCN”, Future Steps: Transitioning from School to Community Conference, Seven Counties Services, Inc., The Interdisciplinary Human Development Institute/University of Kentucky, and the Metro United Way, Louisville, KY, 06/2002. [HRTW-KY, GORDON & Wayne Givens, ADA Specialist, Center for Accessible Living, Louisville]

“KY Commission CSHCN Programs including Transition Activities,” Public Service/Local Access Program, Louisville, KY, 05/2002. [HRTW-KY, FRIEDLANDER]

“Preparing for Life after High School: Promoting Self Determination and Futures Planning for C/YSHCN”, 16th Annual Parent/Professional Conference, Special Education Family Resources Centers and the Dept. of Education, Louisville, KY, 03/2002. [HRTW-KY, GORDON & David Allgood, Community Advocate, Center for Accessible Living, Louisville]

“Get Real: Steps Toward Future Independence Now!” KY Statewide Independent Living Council Fourth Annual Conference, sponsored by Center for Accessible Living, Kentucky Dept. for the Blind, Kentucky Dept. for Vocational Rehabilitation, Fifth Third Bank, Regal Cinemas, Seven Counties Services, and Superior Van Conversions, Louisville, KY, 7/18/01. [HRTW-KY, JOHNSON, Heidi Yost Corner, Executive Director of The Kentucky Spina Bifida Association]

“Beyond Fix and Repair: Self Determination & Futures Planing for C/yshcn”, 44th Annual Maternal and Child Health Conference, sponsored by the Kentucky Dept for Public Health and the Kentucky Medical Association, Louisville, KY, 9/20/01. [HRTW-KY, GORDON & HAMPTON]

“Overcoming Challenges: Life with a Disability”, Family Professional Retreat, sponsored by CCSHCN, Shriners Hospital-Lexington, Cabinet for Families & Children, and University of Kentucky Medical Center Dept of Peds/Adolescent Medicine, Jenny Wiley State Park, Prestonsburg, KY, 10/6/01. [HRTW-KY, GORDON & Dorinda Gordon]

COMMUNITY

“Promoting Self Determination & Futures Planing for C/YSHCN,” Sickle Cell Support Group, Louisville, KY, 09/2002. [HRTW-KY, GORDON]