re-defining family centered care for youth with special health care needs ceci shapland, msn...
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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 GlossFamily, Youth & CC Ceci Shapland & Trish ThomasInteragency Debbie Gilmer
HRTW University Jon Nelson
HRTW website: www.hrtw.org
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%) <18 www.cshcndata.org
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 adulthood4. Transition services to adulthood
Surgeon General’s Call for Action Improve the Health and Wellness of Persons with Disabilities 2005
1. 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 2005
3. 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
HealthProfessionals
CommunityResources
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 www.medicalhomeinfo.org
What is a Medical Home? It’s not a building, house or hospital
American Academy of Pediatrics American Academy of Family PhysiciansAmerican 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) 1304-1306)
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) 1304-1306)
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; 12:363-374
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
Provider Parent/Family Young Person
Major responsibility
Provides care Receives care
Support to parent/family and child/youth
Manages Participates
Consultant Supervisor Manager
Resource Consultant Supervisor
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 19 - 29 - uninsured during the year
• 2x rate for adults ages 30-64
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 301 - 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)
http://policy.ssa.gov/poms.nsf/lnx/0412515001
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 http://ent.groundspring.org
McDonagh, J. E. Growing up Ready for Emerging Adulthood. Presentation for Department of Health, the Royal Colleges, March 23, 2006.
http://217.35.77.12/archive/England/papers/health/pdfs/o4137428.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 (80 405-409
Von Korff, M., Grumen, J. and Schaefer, L. et al. Collaboration management of chronic illness. Annals of Internal Medicine. 1997, 127; 1097-1102
Resources
www.brightfutures.orgwww.familyvillage.wisc.eduwww.kidshealth.orgww.aap.orgwww.search-institute.org
