Re-defining Family Centered Care for Youth with Special Health Care Needs Ceci Shapland, MSN Consultant HRTW National Resource Center

Everything! What Does Health Got to Do with Transition?

HRTW Team Title V Leadership Toni Wall, Kathy Blomquist Medical Home & Trans Dr. Rich Antonelli Dr.Patience White Betty Presler Federal Policy Patti Hackett & Tom Gloss Family, Youth & CC Ceci Shapland & Trish Thomas Interagency Debbie Gilmer HRTW University Jon Nelson

HRTW website:

Health Impacts All Aspects of Life Success in the classroom, within the community, and on the job requires that young people are healthy. To stay healthy, young people need an understanding of their health and to participate in their health care decisions.

Health Affects Everything!! Employment Housing School Community Living Recreation

What is a successful transition? Youth are able to: Access health services independently Know about their health condition Communicate their health care needs Self-manage their care Feel comfortable seeing the doctor alone

Goal of transition Improve the health-related quality of life of all young people with chronic illness or disability and enable them to reach their true potential.

Who are CYSHCN?? “Children and youth with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”

CYSHCN 9.4 million (13%) < Title V CYSHCN: 963,634 (0-18*) Virginia Title V:7,303 (2003) SOURCE: Title V Block Grant FY 2006 Application * Most State Title V CSHCN Programs end at age 18

Good News! Celebrate! Over 90% of children with special health needs are living to adulthood and many are doing very well!!!!

Bad News! Areas to Improve 45 % Lack access to physicians familiar with their health condition 40 % Lack a payment source for needed health care SOURCE: 1997 survey of young adults served by the CHOICES Project of Shriners’ Hospital

Bad News! Areas to Improve Survey results continued: 80% Lack referrals to adult health care providers 40% Use emergency care in 1 yr compared to 25% in typical young adults

Federal Mandates Supreme Court decision - Olmstead (1999) Affirmed the right of individuals with disabilities to live in the community rather than in institutions whenever possible. Full integration - a reality for people with disabilities – means not only changing existing practices that favor institutionalization over community-based treatment, but also providing the affordable housing, transportation, and access to state and local government programs and activities that make community life possible.

Federal Mandates The President’s New Freedom Initiative (2001) Responsibility given to HRSA for developing and implementing a community-based service system

NFI: Delivering on the Promise p. III-39 HRSA's MCHB will take the lead in developing and implementing a plan to achieve appropriate community-based services systems for CYSHCN and their families. Barrier Addressed by Solution / Access to: 1. Comprehensive, family-centered care 2. Affordable insurance 3. Early and continuous screening for SHCN and 4. Transition services to adulthood

Surgeon General’s Call for Action Improve the Health and Wellness of Persons with Disabilities People nationwide understand that persons with disabilities can lead long, healthy, productive lives, 2. Health care providers have the knowledge and tools to screen, diagnose and treat the whole person with a disability with dignity

Surgeon General’s Call for Action Improve the Health and Wellness of Persons with Disabilities Persons with disabilities can promote their own good health by developing and maintaining healthy lifestyles 4. Accessible health care and support services promote independence for persons with disabilities.

State Title V CSHCN Block Grant National Performance Measures To help states develop effective mechanisms to achieve a system of care for all children with special health needs and their families by 2010, six national performance measures (NPM) will serve as a guide to states in meeting this goal. SOURCE: BLOCK GRANT GUIDANCE New Performance Measures See p.43 ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf

CORE National Performance Measures 1. Screening 2. Family 3. Medical Home 4. Health Insurance 5. Community Services 6. Transition SOURCE: BLOCK GRANT GUIDANCE New Performance Measures See p.43 ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf

Title V Block Grant: National Performance Measure #6 Transition to Adulthood Youth with special health care needs will receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence. (2002)

Transition & ……Screening

Health & ….Life-Span Secondary Disabilities - Prevention/Monitor - Mental Health, High Risk Behaviors Aging & Deterioration - Info long-term effects (wear & tear; Rx, health cx) - New disability issues & adjustments

Screen for Life Areas How does health affect: Employment Leisure, Recreation Community: transportation, housing, activities Higher Education or Training

Screen for All Health Needs Hygiene Nutrition (Stamina) Exercise Sexuality Issues Mental Health Routine (Immunizations, Blood-work, Vision, etc.)

Transition &…Youth & Family Participation

Health &…..Work (starts early) Home Chores - Role in the family Community Experiences School Attendance (on time and wellness) Real Skills for the real world Doctor’s Office Health …… staying well for longer periods Maximize: stamina, mobility, communication

Health &…..Work (starts early) Aspirations & Expectations Youth Involvement – Increasing overtime Informed Decision Making – Voice heard Possibilities – Opportunity to try

Transition Issues for Families Starting Early – At diagnosis – Sense of future Raising Expectations – Assisting in care – Talking with the doctor

Issues for Families: Letting Go Launching Adults – Practice, practice, practice – Supports-health surrogate – Guardianship, conservatorship

Issues for Families: Be Creative Creative problem-solving – Define concerns – Include child/youth in discussion Age of consent-a surprise! Portable Health Summary

Changing Roles-Becoming a Coach What does that mean? Youth are creative, resourceful and whole! New skills-listening(3 levels), open ended questions, changing perspective

Nurturing Independence For all youth: Do not solve all the problems, arguments, fights, etc. Teach negotiation skills

Challenge for Parents How to support health of their youth and the need for growing autonomy Negotiate and compromise regularly!

Steps to Promote Transition Talk with youth about views on how much control over health Provide opportunities to state feelings and be respected Teach health care skills at an early age Develop health care routines

Steps (cont.) Learn more about youth development Provide positive feedback Notice language-”we” Promote age appropriate health care Practice decision making and problem solving skills

New Brain Research Use it or lose it! Practice, practice, practice

Steps (cont.) Provide opportunity for youth to co-sign treatment and surgery forms. Assist in the development or identify a peer group. Take time to learn why youth is not following a treatment plan Provide opportunities to make mistakes

Steps (cont.) Research and provide information on resources and supports for living health and more independently. Promote a partnership with the doctor and youth.

Collaborative Partnership Goals: Youth defines his/her concerns Youth and doctor agree on health goals Health care skills and understanding are taught and supported A follow-up plan for staying healthy is identified.

Issues for Youth: Healthy & Informed Informed decision-making Teach about special health needs, possible changes, emergency plans Learn about general health Use resources to support learning-school and IEP

Issues for Youth: Adult Systems Health Care Insurance Family plan, Medicaid, new employee plan- aging out-what are the rules? Adult care-a different culture Identifying and planning the transition to adult care doctor

TRANSITION TEAM: The Players Youth Family Health Professionals Community Resources

Youth Centric Health Care Youth, family & physician work together to plan for youth to be in charge of his own health (youth is the constant in his/her own life) Youth is the team leader (collaboration and partnership in care)

Youth Centric Health Care Youth has knowledge of condition (sharing unbiased and complete info) Youth makes decisions on health care Physicians speak to youth PRIVATELY (meets developmental needs)

Youth Centric Health Care Design a flexible, accessible, responsive “Youth friendly” atmosphere (Accessibility- physical, appointment times, etc.) Promote youth to youth mentoring and support (consumer to consumer support)

Mentoring Important strategy in a positive transition Peer mentoring-better adherence to health care regimen Enhances physical and mental health

Youth are Talking: Are We Listening? Experiences that were most important: learning to stay healthy getting health insurance SOURCE: National Youth Leadership Network Survey-2001, 300 youth leaders disabilities

Survey of 1300 YOUTH with SHCN and disabilities Main concerns for health: – what to do in an emergency, – how to get health insurance, – what could happen if condition gets worse. SOURCE: Joint survey - Minnesota Title V CSHCN Program and the PACER Center, 1995 Youth are Talking: Health Concerns

Wisdom from Youth Learn everything about your condition, future needs and potential problems Learn self care Establish a relationship with a health care provider

Self Advocacy: Building Skills Knowing your health needs Asking for what you need Talking with the doctor – choosing a doctor – preparing for visits Knowing the law Problem solving skills

Transition &….Medical Home

Medical Home is an approach….. providing comprehensive primary care - accessible - continuous - comprehensive - family centered - coordinated - compassionate - culturally effective The National Center of Medical Home Initiatives What is a Medical Home? It’s not a building, house or hospital

American Academy of Pediatrics American Academy of Family Physicians American College of Physicians-American Society of Internal Medicine CONSENSUS STATEMENT calls on physicians to: 1. Understand the rationale for transition from child-oriented health care 2. Have the knowledge and skills to facilitate that process 3. Know if, how, and when transfer of care is indicated (Pediatrics 2002:110 (suppl) ) Consensus Statement: Health Care Transition (Sept. 2001)

4. Maintain an up-to-date portable medical summary 5. Create a written health care transition plan by age 14: what services, who provides, how financed (Pediatrics 2002:110 (suppl) ) Consensus Statement: Health Care Transition (Sept. 2001)

YOUTH are Informed “ The physician’s prime responsibility is the medical management of the young person’s disease, but the outcome of this medical intervention is irrelevant unless the young person acquires the required skills to manage the disease and his/her life.” Ansell BM & Chamberlain MA. Clinical Rheum. 1998; 12:

Positive Youth Development Youth have the right to be empowered, educated and given a decision making role in their care, as well as policy and procedures governing all youth in the community. From the National Center for Children and Poverty, Columbia University

Positive Youth Development Promotes: self esteem self confidence engages youth in the community better chance for successful transition

Positive Youth Development Perceived in a positive light, not something to be fixed! Healthy relationship with adults and peers Opportunity for skill practice and leadership Opportunity for civic engagement

Care Coordination Nurses seen by youth and families as the person to be care coordinator Those with care coordinator-more successful planning

Duties of the Care Coordinator Encourage families to have the child go away and learn care Identify assistive technology Provide specific referrals Provide skill development Educate about self care Have high expectations

Motivational Interviewing Reflective listening Rephrasing Paraphrasing

Relationship with physician Youth want to be asked about their social school life. Adult care: only concern is long term complications, exercise and strict control (For youth with diabetes)

Shared Decision Making ProviderParent/FamilyYoung Person Major responsibility Provides careReceives care Support to parent/family and child/youth ManagesParticipates ConsultantSupervisorManager ResourceConsultantSupervisor

Challenge for Health Care Providers To advocate for young person while including parents Steps: Actively involve youth in consultations Build collaborative relationship with youth so parents feel they can step back

Health Care Transition: Partners Youth and their families are the leaders! Providers: Physicians-Pediatric, Family Practice, Adult physicians, Alternative Medicine Practitioners

Community Transition: Partners School – Individual Education Plan (IEP) – 504 Plan Health & Transition Goals and Objectives Vocational Rehabilitation Community Resources

Pediatric vs Adult Care Youth want: honesty, respect confidentiality, competence Adults want: caring manner, good communication, competence

Solution? Dedicated young adult service that bridges the gap

Transition is complete when: Youth has health care that is paid for Care that is developmentally appropriate Able to self manage or support is identified Able to make health care decisions or support is in place

Transition & …. Health Care

Transition & ……Insurance No Health Insurance 2 out of 5 college graduates (first year after grad) 1/2 of HS grads who don’t go to college 40% age uninsured during the year 2x rate for adults ages SOURCE: Commonwealth Fund 2003

PUBLIC: Medicaid MAINTAIN MEDICAID - Passed SSI Re-determination - continue benefits. DROP FROM MEDICAID - Former childhood SSI recipient at age 18 did not qualify under SSI re-determination and loses benefits (income too high or does not meet disability criteria.) NEW to MEDICAID - Child did not qualify for SSI under 18 due to family income. Age 18 may qualify for SSI and Medicaid as an adult single head of household.

PUBLIC: SSI/Medicaid Loop Hole NOT APPROVED - PROVISION TO CONTINUE RECEIVING SSI BENEFITS SECTION Individuals found ineligible during re-determination may continue to receive SSI benefits IF they began receiving state vocational rehabilitation agency services before their 18th birthday. Section 301 allows the young adult to retain benefits while he/she participates in approved voc rehab program or IEP.(7/2005)

Medicaid while Working WORKING - Continued Medicaid Eligibility Section 1619(b) - still meets SSI criteria, - needs Medicaid in order to work; and - gross earned income is insufficient to pay for other public supports. MEDICAID BUY-IN via TICKET TO WORK - Worker could opt to buy-in and receive Medicaid benefits. Program is too new to assess if states are providing full benefit packages and at what level of sliding fee.

PRIVATE: Family, Employer or Solo MAINTAIN BENEFITS via FAMILY PLAN Adult Disabled Dependent Child Student Status Pays for health care benefits plan through: College - student plan Employed - group plan Self-pay: single plan Ticket to Work (Medicaid Buy-in) COBRA

Transition to Adulthood

Transition to Adulthood is successful when ….. Youth Leaders are partners in policy review and development Youth have:  PARTNERS - Voice and are heard in their own health care decisions  QUALITY - Medical care that meets their needs and developmental issues  CARE - Insurance that is not in jeopardy due to getting older or working

Effects of a well planned transition: Improved disease control Vocational readiness

Need Better Research Research on transition focuses only on one aspect of a program.

Resources Paving the Way to Work-A Guide to Career Focused Mentoring for Youth with Disabilities McDonagh, J. E. Growing up Ready for Emerging Adulthood. Presentation for Department of Health, the Royal Colleges, March 23, h/pdfs/o pdf

Resources Sawyer, S.M. and Aroni, RA. Self Management in adolescents with chronic illness. What does it mean and how can it be achieved? MJA, 2005: 183 ( Von Korff, M., Grumen, J. and Schaefer, L. et al. Collaboration management of chronic illness. Annals of Internal Medicine. 1997, 127;

Resources ww.aap.org

Ceci Shapland, MSN Consultant HRTW National Resource Center