Addressing Health Care Transition to Improve Post-School Outcomes Texas Transition Conference February 19, 2015.

Addressing Health Care Transition to Improve Post-School Outcomes

Texas Transition ConferenceFebruary 19, 2015

Topics to be Covered

• Children with Special Health Care Needs Services Program

• Transitioning to adult health care for CYSHCN• Medical home for transitioning CYSHCN• Education and health care transition• Resources

CHILDREN WITH SPECIAL HEALTH CARE NEEDS SERVICES PROGRAM

Maternal and Child Health Services Block Grant (Title V)

• Federal program: Social Security Act of 1935• Block Grant: 1981• Funding to support programs for CSHCN to

develop family-centered, community-based, coordinated systems of care

CSHCN Services Program

• Focus: improving the lives of people with disabilities and children with chronic health conditions

• Six goals based on Title V and state performance measures

• Administered by the Texas Department of State Health Services

CSHCN Services Program

• Mission: To support family-centered, community-based strategies for improving the quality of life for children with special health care needs and their families

Program Components

• Comprehensive health care benefits• Case management– Regional staff– Community based contractors

• Community based contractors– Case management– Family supports and community resources

Title V National and State Performance Measures

• Children live in families in the community• Families are partners with the people who provide care

and are please with their services• Children have a medical home that knows them well and

helps find and get all the care they need• Families have health insurance to pay for the services

their child needs• Programs and services are set up so that they are easy

to use• Youth have the services and supports they need to move

to adult health care, work, and independent living

CSHCN Services Program Community Based Contractors

MEDICAL HOME

What is a Medical Home?

• An approach to providing comprehensive care• Not a building, house, hospital, or home health

care service• Care team works in partnership with a child

and a child’s family to assure that all of the medical and non-medical needs of the patient are met

National Center for Medical Home Implementation

Care should be

• Accessible• Family-centered• Continuous• Coordinated• Comprehensive• Compassionate• Culturally effective

AAP: National Center for Medical Home Implementation

Who is Part of a Medical Home?

• Child and family• Doctors, nurses, dentists, therapists,

pharmacists, other care professionals• Teachers, social workers, personal care

providers, community organizations• Other service providers that may offer

assistance• Other family, friends, neighbors

Roles of a Medical Home

• Respects child and family• Shares information with the family and includes

them in decisions• Provides health care• Works to catch problems early• Helps plan for/manage chronic health problems• Finds specialists• Connects to local resources• Lowers family stressMedical Home Leadership Network, University of Washington 2002

Roles of Parents/Caregivers

• Parents are a constant in their child’s life• They are the experts on their child’s strengths

and needs• They are the supervisor of their child’s medical

home• They are the visionaries who see the “big

picture” of their child and his/her future

Region 4 Genetics Collaborative

Assessing a Medical Home

• The family is treated as a central member of the medical home team

• Mutual respect and trust is shared with the child’s doctor• The family’s culture and religious beliefs are valued• The medical home team partners with one another to meet the

child’s needs• The child receives adequate care• The family gets help finding other providers and services• The family feels supported• The medical home team helps the family manage their child’s

care• The child’s doctor makes sure the family understands their

choicesMedical Home Leadership Network, University of Washington 2002

Ensuring Good Care in a Medical Home

• Know everyone on your medical home team• Ask questions at each visit• Ask for more time for your visit if needed• Make a care notebook and share it with your

medical home team• Talk about important changes• Ask for clarification if you don’t understand• Ask for a written list of expectations until your

child’s next visit• Ask about after-hours care if neededMedical Home Leadership Network, University of Washington 2002

The Educator’s Role in a Medical Home

• Partner with an interdisciplinary team to meet the child’s needs

• Communicate regularly with the team about the child’s needs and accomplishments

• Ensure that the child receives adequate care and services

• Provide support to the family• Assist the family in finding other providers and

services• Ensure that the family understands the choices they

make

TRANSITION

What is transition?

What is Transition?

“dynamic, LIFELONG PROCESS that seeks to meet [youths’] individual needs as they move from childhood to adulthood. The goal is to MAXIMIZE LIFELONG FUNCTIONING and potential through the provision of high-quality, developmentally appropriate health care services that CONTINUE UNINTERRUPTED as the individual moves from adolescence to adulthood. It is PATIENT CENTERED, and its cornerstones are flexibility, responsiveness, continuity, comprehensiveness, and coordination’’

AAP, AAFP, ACP – Pediatrics 2002

Why Transition?

• Most youth with chronic illnesses will survive into adulthood and, depending on the severity and specifics of their disability, should transition to an adult model of care

• Optimal health care is achieved when each person, at every age, receives medically and developmentally appropriate care

AAP, AAFP, ACP – Pediatrics 2011

At what age does transition begin?

Six Core Elements of Health Care Transition

1. Transition policy2. Transition tracking and monitoring3. Transition readiness4. Transition planning5. Transfer to adult care/adult model of care6. Transfer completion/follow-up

Got Transition

Every child transitions to adulthood

One Size Does NOT Fit All

“INDIVIDUAL STEPS ALONG THE TRANSITION PROCESS WILL VARY from one youth to the next depending on individual patient, family/caregiver, health care professional, and community resource factors.”

“A WELL-TIMED transition from child to adult-oriented care is SPECIFIC to each person…”

AAP, AAFP, ACP – Pediatrics 2011

TRANSITION AND MEDICAL HOME

U.S. and Texas Data

CYSHCN PrevalenceCa

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Texas: 13.4%Nationwide: 15.1%Source: NS-CSHCN 2009/10

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Texas: 35.4%Nationwide: 40.0%Source: NS-CSHCN 2009/10

CYSHCN Prevalence and TransitionCa

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CYSHCN Receiving Care Within a Medical HomeTexas: 40.1%Nationwide: 43.0%Source: NS-CSHCN 2009/10

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CYSHCN Transitioning in a Medical Home Texas Data from NS-CSHCN 2009/10

Unsuccessful Transition Successful Transition

39.4%

60.6%

78.1% 21.9%

Without Medical HomeWith Medical Home

EDUCATION AND HEALTH CARE TRANSITION

The First Discussion with Families

• Let families know what they can expect– Age at which transition services will begin and end– Specific services or activities that school will offer– School’s goals for all clients as they transition to

adulthood

• Alleviate any concerns• Focus on small, short-term goals that will lead

to larger goals• Remind families of the importance of starting

early

Why Consider Health Care?

“Positive postschool outcomes for students with [special health care needs] depend on their ability to manage their health so they can participate fully in work, postsecondary education, and social activities.”

Repetto et al. 2013

Health Care Needs Are Present in All Life Domains

Students need support from teachers to address their health care• Dealing with school absence• Taking part in school activities• Peer relationships• Explaining their condition • Having someone to talk to about health-related

worries

Mukherjee et al. 2000

Taxonomy for Transition Programming

• Family involvement• Program structure• Interagency collaboration• Student development• Student-focused planning

P. Kohler 1996

Family Involvement

• Family Involvement• Involvement in student assessment• Parents/families exercise decision making• Parent/family attendance at IEP meeting

• Family Empowerment• Pre-IEP planning activities for parents/families• Parents/families presented with choices• Transition information provided to parents/families prior to

student’s age 14

• Family Training• Promoting self-determination• Transition-related planning processP. Kohler 1996

Family Involvement

• Health: manage medical appointments• Information to parents about increasing youth’s role

as manager of medical appointments• Calling to make appointments• Visiting the doctor alone• Getting to the office alone

Repetto et al. 2012

Program Structure

• Program Philosophy• Curricula are outcome-based• Education provided in least restrictive environment• Education provided in integrated settings

• Program Evaluation• Ongoing program evaluation• Specific evaluation of student outcomes

• Strategic Planning• Community-level strategic planning focused on local

issues and services

P. Kohler 1996

Program Structure

• Program Policy• Program values, principles, and mission are clearly

articulated• Specific and consistent transition-related policies and

procedures between and within agency and education participants

• Human Resource Development• Pre-service training on transition practices• Transition-related technical assistance• Ongoing transdisciplinary staff development

• Resource Allocation• Creative use of resources• Student/family role in resource allocation

P. Kohler 1996

Program Structure

• Health: communicate with school staff about health care transition needs of patients• Policies and procedures between health care and

education to facilitate communication• Develop shared goals in the IEP and care plan

Repetto et al. 2012

Interagency Collaboration

• Collaborative Service Delivery• Coordinated requests for information (e.g., to parents, employers)• Collaborative development and use of assessment data• Coordinated and shared delivery of transition-related services• Collaborative program planning and development, including employer

involvement• Collaboration between post-secondary education institutions and the

school district • Collaborative Framework

• Formal interagency agreement• Roles of service providers clearly articulated• Student information shared among agencies via established procedures

(with appropriate release of information and confidentiality)• Single-case management system• Designated transition contact person for all service providers

P. Kohler 1996

Interagency Collaboration

• Health: teach educators about the types of skills that youth need to manage their health• Teach health care providers about available

resources, legal issues, and work/school systems• Teach educators about the health care transition

process and potential barriers

Repetto et al. 2012

Student Development

• Life Skills Instruction• Employment Skills Instruction• Career & Vocational Curricula• Support Services• Assessment • Structured Work Experience

P. Kohler 1996

Student Development

• Health: Communicate effectively with physician• Teach strong written and verbal skills and

assertiveness, build confidence, self-advocacy• Obtain important medical information that is

pertinent to the student’s success in school

Repetto et al. 2012

Student-Focused Planning

• IEP Development• Options identified for each outcome area or goal• Educational program corresponds to specific goals• Goals are measurable• Progress or attainment of goals is reviewed annually

• Student Participation• Planning team includes student, family members, and school and participating

agency personnel• Assessment information is used as basis for planning• Planning meeting time and place conducive to student and family participation• Accommodations made for communication needs (e.g., interpreters)• Referral to adult service provider(s) occurs prior to student’s exit from school

• Planning Strategies• Planning process is student-centered• Student involvement in decision making

P. Kohler 1996

Student-Focused Planning

• Health: Plan for post-school leisure, work, and education• Include health related issues in IEP• Include medical personnel on IEP team

Repetto et al. 2012

How can schools use the Six Core Elements of

Health Care Transition?

Transition Policy

Transition policies describe the practice’s or school’s approach to transition.

Transition Tracking and Monitoring

Schools and practices identify youth in need of transition services and track their progress as they get older.

Transition Readiness

Assessments are conducted to identify needs of transition-age youth.

Transition Planning

Transition plans establish goals and prioritize actions necessary for a successful transition.

Transfer of Care

Transfer of care occurs when the youth moves from child services to adult services.

Transfer Completion and Follow-up

Transfer follow-up ensures that the youth is thriving and that feedback is elicited to improve the transition experience for other youth.

Collaboration is Key!

Teacher awareness/knowledge of medical conditions is correlated with perceptions of quality of care.

Mukherjee et al. 2000

Collaboration is Key!

1. Obtain health-related information2. Ensure information is shared within

and between schools3. Provide emotional support4. Provide medical care in school5. Take responsibility for coordinating

support for students

Mukherjee et al. 2000

RESOURCES

Texas Title V Transition Workgroup

http://www.dshs.state.tx.us/cshcn/Transition-Workgroup.aspx

• Mission: To promote a collaborative approach to the provision of transition services for youth in Texas with disabilities and special health care needs and their families.

• Vision: Successful transition outcomes for all youth in Texas with disabilities and special health care needs and their families

• Strategic Plan Development

Transition Toolkit

• Create a CSHCN Services Program policy on transition

• Develop a database to track clients as they transition to adulthood

• Compile transition-related resources for CYSHCN and families– Draft by February 2015

Transition Conference

• Chronic Illness and Disability: Transition from Pediatric to Adult-based Care Conference

• Scholarships• Broadcast sites

Medical Home Workgroup

http://www.dshs.state.tx.us/cshcn/medicalhome/mhgroup.shtm

• Mission: To enhance the development and promote the principles of the Patient-Centered Medical Home model within the state of Texas for all children and youth including those with special health care needs.

• Vision: All children and youth in Texas, including children with special health care needs, will have a medical home that provides accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally competent services.

• Strategic Plan Revisions

Local Resources

• Houston: UH Families CAN• Houston: UTHSC Houston CHoSeN Clinic• San Antonio: UTHSC San Antonio CF Clinic• Amarillo: Coalition of Health Services• San Benito: Cameron County DHHS• Statewide: P2P Pathways to Adulthood

DSHS Email Updates

• Resources, events, other updates and opportunities

• DSHS CSHCN http://bit.ly/txschcn• DSHS CSHCN Medical Home http://bit.ly/texasmh• DSHS CSHCN Transition http://bit.ly/txtrans

Future Activities

• Increase and maintain family involvement in all activities

• Encourage the development of medical homes in Texas for transition-age CYSHCN

• Create opportunities for providers to increase their capacity to serve transition-age CYSHCN

• Encourage future providers to serve transition-age CYSHCN

• Develop tools for providers and families to prepare for transition to adulthood

Key Takeaways

• Youth with chronic illnesses are living into adulthood, necessitating planning strategies to manage conditions as adults

• Health care is an important factor to consider across all life domains

• Schools can collaborate with health care professionals to ensure that youth have successful transitions

• DSHS has resources to support schools

Contact Information

Rachel Jew, MPAffProgram SpecialistChildren with Special Health Care Needs Services ProgramDepartment of State Health Services(512) [email protected]