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Welcome ….. Before We Start

Handout: Changing Roles- Fill in

Post It Notes “Question Lot”-your name, email, Q, topic, expertise

-What question do you want to ask?

-What expertise do you have and can share?

What does it take to become independent? Join a livelydiscussion of the information and skills youth need to be on their own and how to prepare youth for this important step.

Lively Discussion: What is On Your Mind?

Burning Questions: Need answers & Resources

- Experts in the Room- Resources post conf- Solution Network

About YOU

• 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……….

Imagine the Possibilities….

Transition to Adulthood

Transition & ……Family

During the next 90 min. 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

Transitions: Growing Up Ready to Live!The Ultimate Outcome: Transition to Adulthood

HRTW National Resource Center Team

Patti Hackett, MEdCo-Director

Mallory H. CyrYouth Coordinator

Ceci Shapland, RN, MSConsultant-Family Partnerships

Maine Integrative Services GrantAnna H. Cyr

Augusta, MEOctober 22, 2008

Part 01 – Overview National Data, Federal Policy

Part 02 – Preparing for the Difference: Roles for Providers, Family and Children/Youth

Part 03 - Tools for Providers, Family and Children/Youth

Part 04 – Discussion: Putting Ideas Into Practice: Your Strategies – Making it Work

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.

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?

“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

- Civil Rights

Outcome Realities

• Nearly 40% of youth with SHCN cannot identify a primary care physician

• 20% consider their specialist to be their ‘regular’ physician

• Primary health concerns are not being met

• Fewer work opportunities, lower high school grad rates and increased drop out from college

• YSHCN are 3 X more likely to live on income < $15,000

CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002

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

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

1. Identify primary care provider

2. Identify core knowledge and skills

3. Knowledge of condition, prioritize health issues

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

5. Apply preventive screening guidelines

6. Ensure affordable, continuous health insurance coverage

Pediatrics 2002:110 (suppl) 1304-1306

A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs American Academy of Pediatrics , American Academy of Family Physicians, American College of Physicians - American Society of Internal Medicine

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

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)

3. What is transition?

4. Who needs transition planning?

Prepare for the Realities of Health Care Services

Difference in System Practices

• Pediatric Services: Family Driven

• Adult Services: Consumer Driven

The youth and family finds themselves between two medical worlds

…….that often do not communicate….

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

does the

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

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

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

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?

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

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

health insurance status: 2005

38% 37% 35%

17%12% 11%

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

Maine Health Insurance Statute – up to age 25 Chapter 33:§2742-A. Extension of coverage for dependent children Effective August 23, 2006

Dependent child; definition. A. Is unmarried;

B. Has no dependent of the child's own;

C. Is a resident of this State or is enrolled as a full-time student at an accredited public or private institution of higher education; and

D. Is not provided coverage under any other individual or group health insurance policy or health maintenance organization contract or under a federal or state government program.

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!

How many states cover non-categorical adults?

1115 waivers State-only funds

Comprehensive 9 states: AZ, DE, HA, ME, MA, NM, NY, OR, VT

3 states: DC, MN, WA

Less than comprehensive

12 states: AR, DC, IA, ID, IN, MD, MI, MO, MT, OK, TN, UT

1 state: PA

Sources: Klein and Schwartz, 2008; Dorn, et al., 2005. Note: comprehensive programs provide (a) benefitsat least as generous as typical ESI to (b) at least all adults up to 100% FPL.

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: Preventative Care: What Tests - When

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

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.

TOOLS - You can use by FRI!

Family/Youth - Changing Roles: Families

- Changing Roles: Children & Youth

- 5 Qs

- IADL reporting template

Medical Home

- Knowledge & Skills Checklist

- Portable medical summary

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

Transition - Making the Paperwork work!

- sample VR letter

- DME letter customized powered wheelchair

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

What would you do,

if you thought you could not

Patti Hackett, MEdCo-Director, HRTW Center

pattihackett@hrtw.org

Mallory CyrYouth Coordinator, HRTW Center

Sabattus, ME

mallorycyr@htrw.org

Ceci Shapland, RN, MSNConsultant-Family Involvement

Vadnais Heights, MN

www.familyvillage.wisc.edu/

www.familyvillage.wisc.edu

www.fvkasa.org

??? NYLNwww.nyln.org/

www.ncwd-youth.info/index.html

www.familyvoices.org

www11.georgetown.edu/research/gucchd/nccc

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

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