TRANSITION PROGRAMS: A PERSON-CENTERED APPROACH TO SUCCESS Great works are performed, not by strength, but perseverance. Samuel Johnson (1709-1784) A Person-Centered (Holistic) Approach to a child s successful transition into adulthood requires an individualized program, drawing from a large assortment of resources in the environment to meet patient, family or caregiver s transition needs. The increased longevity of children with chronic illnesses or developmental disabilities creates challenges for these youth in making a successful transition to medical and personal independence. The Transition Specialist is dedicated to the Transition Program and works with Care Coordinators and the Patient Care Team to maintain a transition focus and to accurately identify and document specific needs of individuals, and provide resources to meet those needs. The Transition Specialist is responsible for developing and expanding transition programs and resources, including research, teaching and collaborating with adolescents/families and professional staff in the patient care setting as well as in the community. Transition concerns youth as they move from home to school to work to community and from pediatric to adult health care systems. A child that is chronically ill may need special assistance to get from one developmental stage to another, which can require extraordinary measures from the family or caregiver and the health professional. Programs addressing transition needs should: 1
have an outcomes-oriented approach; cover medical, psychosocial, educational and vocational needs of youth; focus on strengths and opportunities of individuals; strive to be flexible and dynamic; coordinate with community, state and federal agencies as needed; and provide uninterrupted age and developmentally appropriate care. Ultimately, we help the family and youth to attain a sense of independence, which is the goal of a successful transition program. A person-centered, holistic and comprehensive focus beyond medical needs alone is the best practice to achieve this goal. A set of innovative and successful transition techniques and resources effective in the clinic setting illustrate how we help families and youth to address their needs: 1) Family Resource Library: A centralized resource room which includes books, journals, audio-visual, and Internet transition resources. Topics include information on careers, diagnosis, independent living, recreation, relationships/sexuality, support and transition information. 2) Specialized Transition Tools : Screening tools thorough enough to quickly identify transition concerns, yet concise enough to allow professional staff to efficiently meet those needs or effectively provide additional resources. Transition Timelines are guidelines to transition issues at key touch points Adolescent Health Transition Project: http://depts.washington.edu/healthtr/ 3) FreeMind-Transition Resources: A computer-based mind map designed to organize and display current transition resources for quick access. FreeMind provides the flexibility to build resources most needed by the program or location. The Internet link is easy to use and helps to keep information comprehensive and up to date. This program can display resources by counties or states and expand to show categories of information in the detail needed to help provide individualized, person-centered care based on need. 4) The Transition Issues Board : A visual method to display resources in an area of high use for patients, families, caregivers and professional staff that is easy to use and maintain. The board is categorized by major topics of importance to this population: Announcements; Assistive technology; Adaptive Driving/Transportation; Education/College; Independent Living/Housing; Jobs/Vocational Rehabilitation; Medical/Healthy Lifestyles; Insurance; Recreation/Sports; Relationships/Sexuality; and Support/Coping. 5) Camp SPIRIT: A hospital-based transitions camp which addresses tasks that maturing adolescents must face. Community experts in: adaptive transportation, coping strategies, disability student services at college, independent living, job mentoring, recreation, relationships and sexuality for individuals with disabilities are invited to speak with participants. Outings with adult volunteers (or supervised peer volunteers from a local high school) to urban and recreation areas are included. The camp focus may vary according to diagnosis or resources. Transition is more than transferring care from one provider to another addressing medical issues alone. We need to coordinate the transition process and teach patients and their families how to access the care and services they require. As survival rates are increasing, more than physical needs have to be considered for quality of life. Susan Labhard, MSN, RN-Transitions Nurse Specialist Shriners Hospital for Children, Portland, OR 2
Socialization/Self-Esteem Programs in Vocational Goals Independence Recreation/Resources Improvement Teamwork/Transition CAMP SPIRIT is a hospital-based transition camp that grew out of a desire expressed by young adults and their parents, for help with transition issues in preparation for leaving high school and becoming more independent. The focus is on young adults with physical disabilities (there are other camps for youth with developmental disabilities). Community experts in independent living, careers/college, coping, recreation, and transportation are invited to interact with participants. SHC patients also take trips to urban and recreational settings with hospital staff and volunteers! Through peer support and transition training, young adults are taking positive steps toward career goals, a sense of independence, and healthy relationships. There were a total of ten campers (five females and five males) between the ages of 17-20, August 5-9 2013. The campers had a great time and said that camp exceeded my expectations. 3
Freemind.mm FreeMind Program for Transition Resources-Instructions 9/13 Access 1. Go to Google. 2. Type in FreeMind 3. Click on the I m Feeling Lucky box Instal 1. This takes you to the FreeMind-free mind mapping software page 2. Go to the heading Downloads for current version of FreeMind. 3. Before downloading and installing FreeMind, install Java Runtime Environment 4. Follow Run Instructions Transitions Program Use 1. Can use SHC Portland as a guide (request file to be sent) 2. Transition Resources can be found on the internet, word of mouth, conferences, journals, and hard copy, to name a few. Once identified, Resources can be incorporated in FreeMind as a means to make them accessible and easy to use so that you no longer need to Google each reference. Transition resources are initially organized on FreeMind in a hierarchical tree based on geographic location. Then organized by function or need in alphabetical order. Finally transition information is organized by specific program or resource. Think of the program in a family sense with the Grandparent in the middle=transition Resources; the Parent =States; and the Children =Adult Providers, Community, Education, Employment, Funding. Housing, Transportation, etc. 3. Each resource can have a note or internet link attached. This helps to keep resources up to date, efficient to find and maintain. 4. Ideally FreeMind Transition Resources would be on the Hospital/Clinic Internet: Maintained by the Hospital/Clinic Webmaster or maintained at each location by someone familiar with the program. Can use SHC-Portland as a resource. Training could be completed via a visual on-line conference call or Transitions Nurse could make brief visits to hospitals to help set up the program (once FreeMind and Java installed). 4
Susan Labhard, MSN, RN-Transitions Nurse Specialist Shriners Hospital for Children-Portland, OR slabhard@shrinenet.org (503) 241-5090x1140 5
Adolescent Health Transition Project: http://depts.washington.edu/healthtr/ American Academy of Pediatrics-Medical Home and Transitions: http://www.medicalhomeinfo.org/how/care_delivery/transitions.aspx Betz, C.L., & Nehring, W.M. (2007). Promoting Health Care Transitions for Adolescents with Special Health Care Needs and Disabilities. Baltimore, MD: W.M. Brookes Publishing. Bright Futures: Age-specific guidelines on best practices. http://www.brightfutures.org CHAT Project (Health Care Transition Resources)-Guide & Tools for Health Care Providers, Youth & Families http://www.mahec.net/quality/chat.aspx Clark, G.M., Patton, J.R. & Moulton, L.R. (2000). Informal Assessments for Transition Planning. Austin, Texas: Pro-Ed, Inc. Envisioning My Future-A Young Person s Guide to Health Care Transition. http://media.ichp.ufl.edu/cms/cms_booklet.pdf;; http://www.answers4families.org/system/files/envisioning_my_future.pdf FloridaHATS (Health & Transition Services) http://www.floridahats.org/; www.floridahats.org/?page_id=608 Foster Club Transition Toolkit http://www.fosterclub.com/files/transition_toolkit.pdf Gillette Children s Transition Clinic (Lifetime Specialty Healthcare): (1-800-578-4266). http://www.gillettechildrens.org Growing Up Ready (for professionals) & Getting Started (for families & youth) Transition Resources from Bloorview Kids Rehab http://www.bloorview.ca/resourcecentre/transitions/index.php Health Care Transition Project at the University of Florida. Resource Guide: www.hctransitions.ichp.edu/ Health Care Transition for Youth with Special Needs Digest: www.jgr@ichp.ufl.edu Health Care Transition Website: http://hctransitions.ichp.edu/ Healthy and Ready to Work National Center: Tools, programs, links. http://www.hrtw.org; http://www.syntiro.org/hrtw/tools/check.html Holland Bloorview Kids Rehab. Hospital http://www.hollandbloorview.ca/resourcecentre/transitions/index.php Muscular Dystrophy Association-Transitions Resource Center http://transitions.mda.org/ National Assoc. of Children s Hospitals & Related Institutions: http://www.childrenshospitals.net National Dissemination Center for Children with Disabilities. NICHCY Connections to Transition 101. http://www.nichcy.org/resources/transition101.asp National Healthcare Transition Center (Got Transition?) http://www.gottransition.org/ Pacer Transition Publications (Free Printable Handouts) http://www.pacer.org/publications/transition.asp#handouts Parent Info. Center on Special Ed. (Secondary Transition Planning) http://www.nhspecialed.org/transitionsection.shtml Puberty Education for Students with Special Needs: A Girl s/boy s Guide to Growing Up & A Girl s/boy s Guide to Puberty and Personal Safety-Available from MarshMedia (1-800-821-3303) or www.marshmedia.com Sexuality and Youth with Disabilities: A Workshop Outline: Pacer Center, 8161 Normandale Boulevard, Bloomington, MN 55437 Phone: (952) 838-9000. www.pacer.org. Shriners Hospital for Children: Transition Summary. http://depts.washington.edu/healthtr/ Spina Bifida Transition Preparation http://www.sbpreparations.org/ The Future of Disability in America: http://www.ncbi.nlm.nih.gov/books/nbk11434/pdf/toc.pdf Transition Resource Directory: Federally-Supported Projects and Centers that Focus on Youth Transition http://psocenter.org/docs/resources/secondarytransition/transitionresourcedirectoryfinal.pdf Transition Toolkit for Youth with Disabilities http://www.ncwd-youth.info/sites/default/files/pastoolkit-052610-print-final.pdf Updated 11/12-Susan Labhard, MSN, RN; Shriners Hospital for Children-Portland, Oregon **Please notify slabhard@shrinenet.org of any changes to above information 6
PLANNING FOR YOUR FUTURE: A TRANSITION SELF-SCREENING TOOL Do you need information about any of the following? If so, please check the box(s) that apply to your needs. Community Resources Health Assistance Programs (e.g.: food stamps, transportation, housing) Assistive Technology Respite Care Sports/Recreation Diagnosis Adaptive Programs Medications Health Insurance Finding a primary care provider to address my adult health care needs Finding a specialty care provider upon discharge from Shriners Hospital Finding a dental care provider Legal Matters Advanced Directives Americans with Disabilities Act (ADA) Guardianship/Advocacy Information Wills and Trusts Immigration Services Housing/Independent Living Accessible, Affordable Housing Independent Living Support Supervised Living Programs Support Family/Support Networks and Groups Anger/Violence at school or home Bullying Depression/Loneliness Counseling/Mental Health Services Questions/Concerns about drugs, alcohol, smoking, unprotected sex Sexuality and Relationships Stress Management Employment Career Planning/Job Training Supplemental Security Income (SSI) Options Services Provided through Vocational Rehabilitation Education Accommodations at School/College for Students with Disabilities (IEP/504/ADA) Transition Planning in High School Education beyond High School Scholarships Transportation Adaptive Driving Equipment Public Transportation Patient/Guardian s Signature: Date: Contact Phone #: Needs Assessment/Transition Self-Screening SHRINERS HOSPITALS for Children Portland 3960-21 Rev. 5/10 7
Transition Contacts (21 on ) Name: D.O.B. MR# Phone: ( ) Dx: MD: Parents/Caregivers: County: Street/PO: Insurance: City/State/Zip: Primary Caregiver: Referred By/Date: Transition Concern: Contact Person: 8