Transistion

Guidelines for Transitioning from Youth to Adulthood

Care Connection for Children Network

Virginia Department of Health

October 2004

 

Mission

Assisting clients and families in transition is a core function of the Care Connection for Children (CCC) network, Centers of Excellence for Children with Special Health Care Needs (CSHCN). 

 

Healthy People 2010 Outcome and Maternal and Child Health Block Grant Performance Measure

All young people with special health care needs will receive the services needed to make necessary transitions to all aspects of adult life, including health care, work, and independent living.

 

Description of Transition Services

Transitions are part of normal, healthy development and occur across the life span.  Aspects to be addressed by the CCC care coordinators in the delivery of transition services include the following:

  1. Health/Wellness
    • Health Care
    • Mental Health
    • Dental Care
    • Nutrition
    • Fitness
    • Substance Abuse
    • Sexuality
    • Safety Practices
  2. Education/Vocation/Employment
    • High School
    • Rights and Responsibilities
    • Postsecondary Education
    • Vocational Training
    • Employment Preparation
    • Volunteer Opportunities
  3. Mobility/Transportation/Recreation
  • Ambulation Requirements
  • Public Transportation
  • Preparation for Driving
  • Private Transportation
  • Cost of Transportation
  • Recreation
  • Socialization
  1. Legal/Insurance/Adult Benefits/Housing
  • Civil Rights
  • Discrimination
  • Private Insurance
  • Uninsured
  • Finances
  • Consent
  • Planning
  • Housing Needs
  • Public Benefit Programs

 

Transition in health care for young adults with special health care needs is a dynamic, lifelong process that seeks to meet their individual needs as they move from childhood to adulthood. This service will be provided for clients and their families who meet the definition of children with special health care needs. Clients and their families receive this service by choice.  The specific goals of care coordination are directed by the families and may discontinue it at any time.

 

Source:   Adapted from “A Consensus Statement on Health Care Transitions for Young Adults with Special Health Care Needs”, PEDIATRICS, Vol. 110, No. 6, December 2002.

 

Two main components of transition for the adolescent with special health care needs and disabilities are:

  • Increased self-management on the part of the adolescent.
  • Transfer of services to adult care providers.

 

Source: Adapted from Porter, S., Freeman, L., and Griffin , L. Transition Planning for Adolescents with Special Health Care Needs and Disabilities: A Guide for Health Care Providers, September 2000.

 

Principles of Transition

  1. Transition is a process, not an event.
  2. Transition planning should begin at diagnosis in order to move children and families along in a developmental fashion.
  3. Youth with special health care needs should participate as decision makers and as partners.
  4. Providers and parents should prepare to facilitate movement.
  5. Coordination of services and providers is essential.
  6. Youth with special health care needs should have accessible and affordable health insurance coverage.
  7. Youth with special health care needs should have medical homes responsive to their needs.
  8. When a youth reaches age 14, CCC will begin the planning and implementation of the formal process of transition from youth to adulthood.  The youth will have a minimum of five touch points by the CCC care coordinator between ages 14 and 21 years.   These are ages 14-15, 16-17, 18, 19-20, and 21.

 

Source: A Ten-Year Action Plan to Achieve Community-Based Service Systems for Children and Youth with Special Health Care Needs and their Families, Health Resources and Services Administration, Maternal and Child Health Bureau, 2001

 

Source: Porter, S., Freeman, L., and Griffin , L. Transition Planning for Adolescents with Special Health Care Needs and Disabilities: A Guide for Health Care Providers, September 2000

 

 

 

 

 

 

 

 

Core Goals of Transition

Transition Aspects

Goal Descriptions

Goal Outcomes
Health/Wellness
  • Health Care
  • Mental Health
  • Dental Care
  • Nutrition
  • Fitness
  • Substance Abuse
  • Sexuality
  • Safety Practices

 
  • Client will receive regular ongoing comprehensive care within a medical home.
  • Client will be screened early and continuously for monitoring of their special health care needs.
  • Client/family will participate in decision-making at all levels and will be satisfied with the services they receive.
  • Client will receive the services necessary to make transitions to all aspects of adult life.
  • Client is knowledgeable about his/her disability and is able to demonstrate competence in management of needs.
  • Client has an appropriate long-range goal for developing a plan for self-care skills.
  • Client transitions health care to an adult health care provider. 
  • Client/family are able to identify what causes stress in their life and effective stress reduction activities that they can employ.
  • Client/family do not exhibit signs and symptoms of severe anxiety and depression.
  • Family provides consistent rules and consequences for behavior.

 
  • Client’s health care is coordinated and appropriate for his/her needs.
  • Client/family engages in appropriate health promoting behaviors.
  • Client/family are able to identify signs and symptoms, which require prompt medical assessment or intervention.
  • Client/family are able to seek out wellness care and obtain referrals if needed for specialty care.
  • Client/family are able to obtain medications for required condition.
  • Client/family are able to meet the equipment/supply needs of the child's special health care need.
  • Client/family is able to adhere to treatment plans and work independently of professionals.
  • Client will begin interacting directly with medical home and providers of service as he/she transitions to managing care/services necessary for independence.
  • Client engages in appropriate health promoting behaviors.
  • Client demonstrates competence in self-care skills.
  • Client/family is optimistic about the future.
  • Client/family does not report or demonstrate symptoms of emotional, physical or sexual abuse.
  • Family isable to cope and parent a child with special health care needs.
  • Client is responsive to parental guidance and support.

 

Education/Vocation/

Employment

  • High School
  • Rights and Responsibilities
  • Postsecondary Education
  • Vocational Training
  • Employment Preparation
  • Volunteer Opportunities
  • Client will be screened early and continuously for their educational requirements in relationship to their special health care needs.
  • Client/family will participate in decision-making at all levels and will be satisfied with the services they receive.
  • Client/family understand rights and responsibilities under the federal Individuals with Disabilities Education Act.
  • Client/family state what accommodations are needed in home, school and community to promote full inclusion.
  • Client has a school plan, which appropriately meets their educational needs.
  • Client attends school regularly.
  • Client functions to his/her capacity in school, i.e. homework, motivation, etc.
  • Client demonstrates appropriate

developmental skills for age with consideration for disability.

  • Client expresses a positive sense of well-being and is optimistic about their future.
  • Client discusses future plans and concerns with caretaker and one other non-parental adult.
  • Client has a job for pay or business adventure.

 

Mobility/Transportation/

Recreation

  • Ambulation Requirements
  • Public Transportation
  • Preparation for Driving
  • Private Transportation
  • Cost of Transportation
  • Recreation
  • Socialization
  • An individualized community-based service system plan will be organized so the client/family can use them easily.
  • Client/family will participate in decision-making at all levels and will be satisfied with the services they receive.

 
  • Client/family are able to identify and appropriately utilize resources available to them.
  • Client/family are able to access needed resources appropriately.
  • Client receives consistent love, comfort, encouragement and support from caretakers.
  • Client/family receives adequate social support from family members, friends, support groups, etc.

Legal/Insurance/Adult Benefits/Housing

  • Civil Rights
  • Discrimination
  • Private Insurance
  • Uninsured
  • Finances
  • Consent
  • Planning
  • Housing Needs
  • Public Benefit Programs
  • Client/family will have adequate public and/or private insurance to pay for the services they need.
  • Client/family is knowledgeable about their health insurance coverage and how to access services.
  • Client/family have identified and established an adequate means of financial support.
  • Client/family understand rights and responsibilities under the Americans with Disabilities Act.
  • Client/family will participate in decision-making at all levels and will be satisfied with the services they receive.
  • Client/family are able to identify problems and solutions.
  • Client/family exhibit planning and decision making appropriate to their needs.
  • Client/family can advocate for self.

 
  • Client/family is able to access health care and use their third party payer.
  • Client/family has payment source for health care.
  • Client has a job for pay or business adventure.
  • Family members have employment or a means to support the needs of all family members.
  • Client/family are able to communicate needs, concerns and priorities.
  • Client/family are confident in their decision-making skills.
  • Client is included in family decisions and given useful home and community roles.

 

Source:

CHOICES/Care Coordination (Children’s Healthcare Options Improved Through Collaborative Efforts and Services)http://www.shrinershq.org/choices/

2010 Express, United States Health Resources and Services Administration, Maternal and Child Health Bureau

Case Management Needs Assessment, Care Connection for Children System Users Network (CCC-SUN)

 

Transition Tool Kit (Available at CCC Centers)

  • Coordinator Guides For Transition by Age
  • Ages 14 – 15 years             
  • Ages 16 – 17 years           
  • Age 18 years                 
  • Age 19 – 20 years    
  • Age 21      

 

  • Coordinator Transition Worksheets by Transition Aspect
  • Health and Wellness
  • Education, Vocation, and Employment
  • Mobility, Transportation and Recreation
  • Legal, Insurance, and Adult Benefits

 

Resources

 

Americans with Disabilities Act                         www.usdoj.gov/crt/ada

 

Children’s Healthcare Options Improved Through Collaborative Efforts and Services)                                                                                                   http://www.shrinershq.org/choices/

 

Disability Benefits: Social Security Administration          http://www.ssa.gov/applyfordisability/

 

Individuals with Disabilities Education Act                     www.kidstogether.org/idea.htm

 

National Center for Youths with Disabilities                   www.nichcy.org/

 

National Center for Healthy and Ready to Work           www@hrtw.org

 

Parent Advocacy Coalition for Educational Rights (PACER)     www.pacer.org/

 

Transition: American Academy of Pediatrics

http://aappolicy.aappublications.org/cgi/content/full/pediatrics;110/6/S1/1304