re-defining family centered care for youth with special health care needs ceci shapland, msn...

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

cecishapland@hrtw.org

Ceci Shapland, MSN Consultant

HRTW National Resource Center