Transitions: Growing Up Ready to Live!

Transition Journey: Personal and Work

Ceci Shapland, RN, MSNConsultant, Family & Youth Involvement

Patti Hackett, MEdCo-Director

HRTW National Resource Center

F2F-NV, Family TiesMonday, December 22,2008

Part 01 • The Journey: Starting from where you are now to where you want to go (personal) Celebrate: Past/Progress Future/Renewed energy Q & As

Part 02• Just the Facts: Health & Transition Celebrate: Policy knowledge to put into practice! Q & As

Part 03• Tools You can use Celebrate: new dialogue leads to action & change Q & As

• Create new contact

• Space or Underscore ____ (this bumps listing to the top)

• Type “ICE – 01” – ADD Name of Person - include all ph #s - Note your allergies

You can have up to 3 ICE contacts (per EMS)

Do you have “ICE” in your cell phone contact list?

To Program……….

Transition & ……Family

Growing Up Ready to LIVE!

Health & Wellness …. + Humor

During the next two days we will .....

• Affirm your beliefs

• Ah Ha Moments!

• Make You Squirm

• Tools to Use

• Choose to Disagree

You are advocates with skills

Your skills are for certain time frames

Now is the time to learn the

next set of skills

Putting Policy Into Practice

• Action Policy = Change over time

Reduction of Barriers, Increase ease of access

• Action Practice = NOW KSAs Knowledge, Skills & Abilities

- Tools to increase quality

- Tools to Reduce stress

- Tools to Expedite determination for services

Keep in Mind: Two Different Issues

1. What do you remember about your teen years and health care

2. When did you leave your pediatrician and

move to an internist? Your own child?

3. Have you had experience in assisting a

youth with a disability moving to adult

systems?

What is Health Care Transition?

Components of successful transition

• Self-Determination• Person Centered Planning• Prep for Adult health care• Work /Independence

• Inclusion in community life • Start Early

Transition is the deliberate, coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals.

Pediatric Adult

Age-related Growth& development, future focussed

Maintenance/decline:Optimize the present

Focus Family Individual

Approach PaternalisticProactive

Collaborative,Reactive

Shared decision-making

With parent With patient

Services Entitlement Qualify/eligibility

Non-adherence >Assistance > tolerance

Procedural Pain Lower threshold of active input

Higher threshold for active input

Tolerance of immaturity

Higher Lower

Coordination with federal systems

Greater interface with education

Greater interface with employment

Care provision Interdisciplinary Multidisciplinary

# of patients Fewer Greater

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.

Transition to Adulthood : Your Personal Journey Role of Health & Wellness

Fears that slow down personal progress

Past YOU – Recognize how far you have comeYOUR CHILD – Recall what they could not do

CurrentYOU – Now? 5 years? 10 years?YOUR CHILD – Are skills on target or behind? both?

Future

Exercise: Perspective-providing an opportunity for shifting viewpoint

YOU : skills, knowledge, abilities to strengthen or acquire

YOUR CHILD: what skills can be transferred, learned, practiced or may need additional supports?

YOUR WORK: thinking ahead, what needs to change to assure health and transition activities are included in daily functions, intake, forms, workshops, and/or conference presentations?

Changing Roles: Preparing for the Difference

Goal: Interactive discussion of the 17 essential skills to prepare for health care transition YOU – skills, knowledge, abilities to strengthen or acquire

YOUR CHILD – What to learn, to practice or may need additional supports?

YOUR WORK – consensus as an agency to include health & wellness in all phases of work.

HANDOUT: KSAs

Life Span Skills for Health: Transition BasicsKnowledge, Skills and Abilities for Changing Roles

Summary & Charge

HOMEWORK:

1.Work Tasks Injecting health, wellness and transition into work functions

2.Changing Roles: KSAs

Q & As

Transitions: Growing Up Ready to Live!

Transition Overview: Policy, Data,

Practice & Trends

“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.”

Source: McPherson, M., et al. (1998). A New Definition of Children

with Special Health Care Needs. Pediatrics. 102(1);137-139.

http://www.pediatrics.org/search.dtl

Who Are CYSHCN?

Disabled?? Special Health Care Needs?

<18 -- HEALTH SERVICES CYSHCN - Children & Youth with Special Health Care Needs - Genetic - Chronic Health Issues - Acquired

>18 -- Adult

- Person with Disability

- Person with Health Impairment

ADA

- Civil Rights

HRSA/MCHB Block Grant: NPM #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)

SOURCE: BLOCK GRANT GUIDANCE

New Performance Measures See p.43

ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf

CORE National Performance Measures

Transition & ………

1. Family

2. Screening

3. Medical Home

4. Health Insurance

5. Community

6. Transition

1.Youth Involvement

2.Secondary Disabilities

3.Peds to Adult

4.Extend Dependent Coverage

5.Entitlement to Eligibility

6. Inclusion in Community

1. Identify primary care provider

2. Identify core knowledge and skills

3. Maintain an up-to-date medical summary that is portable and accessible

4. Create a written health care transition plan by age 14: what services, who provides, how financed

5. Apply preventive screening guidelines

6. Ensure affordable, continuous health insurance coverage

SOURCE: Pediatrics 2002:110 (suppl) 1304-1306

Ped

Consensus Statement: Health Care TransitionCritical First Steps to Ensuring Successful Transitioning

To Adult-Oriented Health Care

What would you think

a group of “successful”

adults with disabilities

would say is the most

important factor

that assisted them

in being successful?

6 Choices

FACTORS ASSOCIATED WITH RESILIENCE for youth with disabilities: Which is MOST important?

Self-perception as not “handicapped”

Involvement with household chores

Having a network of friends

Having non-disabled and disabled friends

Family and peer support

Parental support w/out over protectiveness

Source: Weiner, 1992

FACTORS ASSOCIATED WITH RESILIENCE for youth with disabilities: Which is MOST important?

Self-perception as not “handicapped”

Involvement with household chores

Having a network of friends

Having non-disabled and disabled friends

Family and peer support

Parental support w/out over protectiveness

Source: Weiner, 1992

Time

Jan 2004

Societal Context for Youth without Medical Conditions in Transition

• Parents are more involved - dependency “Helicopter Parents” …Blackhawk types…(CBS 2007)

• Twixters = 18-29 - live with their parents / not independent - cultural shift in Western households - when members of the nuclear family become adults, are expected to become independent

• How they describe themselves (ages 18-29) 61% an adult 29% entering adulthood 10% not there yet

(Time Poll, 2004)

Transition and the Youth with Development Disabilities

• Level of participation

• Supports

• Health advocate

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

• Youth Leaders are partners in policy review and development

What

does the

Data

tell us?

Natl CSHCN 2005-06

HRTW 2004-06

NC Neph 2005

Youth – MN 1997

Youth – NYLN 2003

Got Data?

www. cshcndata.orgData Resource Center National Survey for CSHCN

Nov.2007

NS-CSHCN 2005Section 6: Family Centered Care - Transition Qs

49.3%

NO

If YES, have they talked with you about having [CHILD’S NAME] eventually see doctors or other health care providers who treat adults?

53.8%

NO

46.2%

YES

Have [CHILD’S NAME]’s doctors or other health care providers talked with you or [CHILD’S NAME] about his/her health care needs as he/she becomes an adult?

NS-CSHCN 2005Section 6: Family Centered Care - Transition Qs

78.7%

NO

Eligibility for health insurance often changes as children reach adulthood. Has anyone discussed with you how to obtain or keep some type of health insurance coverage as [CHILD’S

NAME] becomes an adult?

Never11.9%

Sometimes16.3%

Usually23.0%

Always48.7%

 

How often do [CHILD’S NAME]’s doctors or other health care providers encourage him/her to take responsibility for his/her health care needs, such as:  

IF 5-11 Years: learning about (his/her) health or helping with treatments and medications?

IF 12+ Years: taking medication, understanding (his/her) health, or following medical advice?

Barriers to Transition *rated extremely important or very important (combined)

HRTW Questionnaire 2006-2007

Medical HomesN=52

in 26 states

NACHRIHospitals

N=19 in 18 states

StatesN=42 of 59 States/Territories

Lack of capacity of adult providers to care for youth/adults with SHCN

83% 85% 95%

Lack of understanding of reimbursement eligibility differences between adults and children with special health care needs

65% 63% Not Asked

Fragmentation of care among systems providers

87% 73% 89%

Lack of knowledge about or linkages to community resources that support youth in transition

85% 58% 50%

Health Care Health Care Transition ActivitiesTransition Activities

Medical HomesN=5226 states

NACHRIHospitalsN=19 18 states(12%)

Shriners HospitalsN=20 15 states & Canada (91%)

State Title V AgenciesN=42 of 59 States/Territories(71%)

Create an individualized health transition plan 34% 43% 25% 50%

Promote health management, self care, and prevention of secondary disab.

63% 79% 95% 72%

Discuss legal responsibility for medical decisions and health records <18.

21%Written

81% assent

58% 100% 62%

Recruit adult primary /specialty providers to assume care of youth with special needs

56% 58% 35% 53%

Youth With Disabilities Stated Needs for Success in Adulthood

PRIORITIES:

1 Career development (develop skills for a job and how to find

out about jobs they would enjoy)

2 Independent living skills

3 Finding quality medical care (paying for it; USA)

4 Legal rights

5 Protect themselves from crime (USA)

6 Obtain financing for school (USA)SOURCE: Point of Departure, a PACER Center publication Fall, 1996

Survey - 1300 YOUTH with SHCN / disabilities

Main concerns for health:

• What to do in an emergency,

• Learning to stay healthy*

• 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

*SOURCE: National Youth Leadership Network Survey-2001300 youth leaders disabilities

Youth are Talking: Are we listening?

Internal Medicine Nephrologists (N=35)

Survey Components Percentages

Percent of transitioned patients < 2% in 95% of practices

Transitioned pats. came with an introduction 75%Transitioned patients know their meds 45%Transitioned patients know their disease 30%Transitioned patients ask questions 20%Parents of transitioned patients ask questions

69%

Transitioned Adults believed they had a difficult transition

40%

Maria Ferris, MD, PhD, MPH, UNC Kidney Center

ASSENT to CONSENT Eastern Maine Medical Center

A parent or guardian is generally required to sign for a patient under the age of 18. Patients aged 14-17 should also sign. See IDD 20.041.

If an adult is unable to make or communicate medical decisions, then the following may sign in the priority given: agent under healthcare power of attorney, guardian, spouse, domestic partner, next-of-kin. See IDD 20.060 Indicate capacity of representative.

Maintaining

Health Care Insurance

Transition & ……Insurance

NO HEALTH INSURANCE

40% 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, 2003, 2005

44

Percentage of adults ages 19–29 reporting going without various services because of cost, by health

insurance status: 2005

38% 37% 35%

45%

57%

17%12% 11%

18%

31%

Fill prescriptions Necessaryspecialist visits

Medical test,treatment, or

follow-up

Doctor visit formedical problem

Any of theseservices

Uninsured Insured

Source: Collins, et al., 2007.

Extended Coverage – Family Plan

• Adult Disabled Dependent Care

Incapable of self-sustaining employment by reason of mental or physical handicap, as certified by the child's physician on a form provided by the insurer, hospital or medical service corporation or health care center

• Adult, childless continued on Family Plan

Increasing age limit to 25-30

CO, CT, DE, FL, ID, IN, IL, ME, MD, MA, MI, MT, NH, NJ, NM, OR, PA, RI, SD, TX, VT, VA, WA, WV

Handouts: Private Health Insurance

Requires

An insurer may require, as a condition of eligibility for continued coverage in accordance with this section, that a covered person seeking continued coverage for a dependent child provide written documentation on an annual basis that the dependent child meets or continues to meet the requirements

Celebrate Annual Documentation!

Q & As

Case Study

Health Affects Everything!

Joe’s Story

• Great job• Excellent training• Own apartment• Good social life

Then what…………………….???

Assessing Health in Transition:Employment

• Does Joe’s health condition dictate certain work conditions?

• Will Joe’s medication affect his job duties?

• Should he disclose his health condition to the employer?

• Does his health dictate hours of work?

Post Secondary Education

• Does Joe need to take his medication while in class or at work?

• How will it affect his performance?

• Will Joe need accommodations in his schedule for medical treatments and/or appointments?

Home Living

Does Joe …….

• understand his seizure disorder?

• carry his own emergency medical information?

• understand the side effects of his medication?

• have an emergency plan?

• have health insurance?

Community Life

Does Joe ……..• have an adult health care practitioner?

• know how to communicate his health care needs?

• know when, how and where to fill a prescription?

• know how to travel to the doctor or drugstore? Does he have transportation?

Leisure-Recreation

• Does Joe understand the effects of recreational

drugs or alcohol on his health and seizure

disorder?

• Will his medication or health condition affect his

choice of activities?

Using the IEP for Health Transition

Goal:• I will learn about my seizure disorder and my health

needs to live more safely in the community.

Objective:• I will write a report for social studies on seizure

disorders.• I will learn three side effects of my medication

Using the IEP for Health Transition

Objective:

• I will develop an emergency plan with my physician and present it to my case manager.

• I will identify and interview two adult physicians and choose a new adult doctor by June, 2008.

Q & As

HANDOUTS:

Portable Medical SummaryTracking Poly Pharm

Prep for Office Visit: 5 Qs

Skills Before 10 Before 18

• Carry and present insurance card X

• Know wellness baseline, Dx, Meds X X

• Make own Doctor appts X

• Call in Rx refills X

• Learning Choice X

• Decision making (assent to consent) X

• Prepare for Doc visit: 5 Qs X X

• Present Co-pay X X

• Assess: Insurance, SSI, VR X

• Gather disability documentation X

Handout: Portable Medical Summary

Carry in your wallet

Good Days

- Cheat Sheet: Use as a reference tool

- Accurate medical history - Correct contact #s- Document disability

Health Crisis

- Expedite EMS transport & ER/ED care

- Paper talks when you can not

Know Your Health & Wellness Baseline

• How does your body feel on a good day?

• What is your typical

- body temperature

- respiration count

- elimination habits?

- quality of skin (front and back)

HANDOUT:

Prep for Office Visit: 5 Qs

How do we tie a knot of transition

between pediatric and adult healthcare?

• Start early• Teach advocacy to youth• Tell people where to find the other rope• Teach the strands to work together

Reality check: Have all of us done the prep work for the send off before the hand off?

Tie a knot to create a continuous rope

The pediatric rope

should transition

into the adult rope

Patti Hackett, MEdCo-Director, HRTW Center

pattihackett@hrtw.org

Ceci Shapland, RN, MSNConsultant-Family Involvement

Vadnais Heights, MN cecishapland@hrtw.org

Mallory CyrYouth Coordinator, HRTW Center

Sabattus, ME

mallorycyr@htrw.org

Q & As

www.ncwd-youth.info/index.html

www.familyvoices.org

www11.georgetown.edu/research/gucchd/nccc

www.fvkasa.org

??? NYLNwww.nyln.org/

Medicalhomeinfo.org

www.hdwg.org/catalyst/index.php

State-at-a-GlanceChartbook onCoverage and Financingof Care for Children andYouth with Special Needs

http://www.championsinc.org

What would you do,

if you thought you could not

fail?