Session Information

Session Title: Controversies and Challenges for Children and Youth with DisabilitiesSession Number: H1017

Faculty Name: Patti Hackett, MEdFaculty Institution: HRTW National Resource Center

Faculty Name: Harry L. Gewanter, MD, FAAP, FACRFaculty Institution: Pediatric & Adolescent Health PartnersMedical Home Plus, Inc

Midlothian, VA

Faculty Disclosure Information

Patti Hackett, MEd

In the past 12 months, I have no relevant financial relationships with the manufacturer(s) of any commercial product(s) and/or provider(s) of commercial services discussed in this

CME activity.

I do not intend to discuss an unapproved/investigative use of a commercial product/device in my presentation.

Faculty Disclosure Information

Harry L. Gewanter, MD, FAAP, FACR

In the past 12 months, I have no relevant financial relationships with the manufacturer(s) of any commercial product(s) and/or provider(s) of commercial services discussed in this

CME activity.

I do not intend to discuss an unapproved/investigative use of a commercial product/device in my presentation.

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.”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

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

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

What is Health Care Transition?

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

Components of a Successful Transition

• Self-Determination

• Person Centered Planning

• Prep for Adult health care

• Work /Independence

• Inclusion in community life

• Starting Early

What is “Early”?

Data from studies in Europe and the US suggest ages 11-13

• Youth most interested in involvement with future career like their peer group without disabilities

• If intervene with transition planning, able to keep them on developmental milestones compared to those starting later

• Have least differences in standardized QoL and life skills measures

• Youth > 14 years had bigger differences than peers w/o disabilities and interventions show less improvement

www.hrtw.org

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 Care Transition Requires

Time & Skills

for children, youth, families and

their Doctors too!

The Ultimate Outcome: Transition to Adulthood

“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.”

SOURCE: Ansell BM & Chamberlain MA. Clinical Rheum. 1998; 12:363-374

What is the point?Why bother?

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

A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs

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

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

AAP, AAFP, ACP-ASIM

A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs

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

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

AAP, AAFP, ACP-ASIM

Medical Home includes:

• A partnership - family and primary care doctor.

• A relationship - mutual trust and respect.

• Connections - supports - services for child / family.

• Respect for the family’s cultural and religious beliefs.

• After hours & weekend access to medical consultation

• Families feel supported in caring for their child

• Primary doctor works with team/other care providers

A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs

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

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

AAP, AAFP, ACP-ASIM

HRTW Surveys: Results 2007

About Those Who Responded

- 52 physicians / 26 states

- Most involved with Medical Home projects

- 47 pediatricians, 4 Med-Peds, 1 Family

Consensus Statement- Knowledge

• 50% were familiar

• 06% unsure

• 42% not

Results: Core Knowledge & Skills

36% have forms to support transition

(82% want help)

39% provide educational materials regarding transition

(48% want help)

Results: Core Knowledge & Skills

58% help youth/families plan for emergencies

(31% want help)

68% assist with accommodations school/studying or work

(21% want help)

35% Make transportable medical record for some patients (43% want help)

Results: Core Knowledge & Skills

63% promote independence in health condition management (25% want help) When youth turn 18, is there a written policy to discuss?

77% no

Do you seek verbal assent? 81% Do you seek written assent? 23%

50% refer to skill-building experiences (35% want help)

Results: Core Knowledge & Skills

33% Create individualized health transition plan

for at least some patients

(39% want help)

65% Screen to identify YSHCN who need transition services (29% want help)

Overall practice assessment

Rate your practice with regards to transition processes in general:

- Not interested 02%

- Do not have yet, interested 29%

- Beginning stages 25%

- Working on policy/processes 19%

- Have policy and processes integrated 13%

Conclusions

• Respondents are reluctant to transition their youth with SHCN to adult practices

• Respondents are well versed in coordinated care, but are reluctant to adopt processes that give youth with SHCN the tools/skills to negotiate adult health care practices

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

Preparing for New Roles: Shared Decision Making

Provider Parent Young Person

Major responsibility Provides care Receives care

Support to parent and child

Manages Participates

Consultant Supervisor Manager

Resource Consultant Supervisor

Prepare for NewLevels of Support

Levels of Support Family Role Young Person

Independent Coach

Can do or can direct others

Interdependent ConsultantCoordinates

Can do or can direct othersMay need support in some areas

DependentManagesCoordinates(expand circle of support)

Needs support full-time in all areas

A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs

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

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

AAP, AAFP, ACP-ASIM

Utilizing the IEP to Increase Knowledge and Competence

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

Utilizing the IEP to Increase Knowledge and Competence

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, 2007.

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)

www.hrtw.org

Youth are Talking: Are We listening?

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 & PACER Center, 1995

*SOURCE: National Youth Leadership Network Survey-2001

300 youth leaders disabilities

A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs

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

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

AAP, AAFP, ACP-ASIM

Portable Medical Summary

To be carried in your wallet

GOOD DAYS

CHEAT SHEET: Use as a reference tool

• Accurate medical history

• Correct contact numbers

• Document disability

BAD DAYS/HEALTH CRISIS

• Expedite EMS transport & ED/Hospital Care

• Paper talks when you cannot

www.hrtw.org

Health Care Transition Plans

YOUTH INVOLVEMENT (Skills, practice & time)

• How to involve the young person in introducing, creating and participating in that plan

UPDATE PERIODICALL

• Partnership – youth, family and provider

• Plan assessed periodically and changes are made

when needed (interests, medical, etc)

A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs

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

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

AAP, AAFP, ACP-ASIM

www.hrtw.org

Screening

SECONDARY DISABILITIES

- Prevention/Monitor - Mental Health - High Risk Behaviors

AGING & DETERIORATION

- Info long-term effects (wear & tear; Rx, health cx)

- New disability issues & adjustments

www.hrtw.org

Screen for All Health Needs

•Hygiene (look good, feel good, smell good)

•Nutrition (Stamina, Bowel Management, obesity, etc.)

•Exercise (fitness and stamina)

•Sexuality Issues (masturbation, STIs, GLBT)

•OB-GYN (Routine care, Birth Control, Rape)

•Mental Health (genetic, situational)

•Routine (Immunizations, Blood-work, Vision, etc.)

www.hrtw.org

Screen for Life Areas

How does health affect:

• Employment

• Leisure, Recreation

• Community: transportation, housing,

activities

• Higher Education or Training

A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs

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

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

AAP, AAFP, ACP-ASIM

www.hrtw.org

TICKET TO WORK

http://www.socialsecurity.gov/work/aboutticket.html

• Employment Network (EN) of their choice to obtain employment services, vocational rehabilitation services, or other support services to help the beneficiary find and maintain employment

MEDICARE (SSDI)• Premium-free coverage for 4.5 years beyond the

current limit for disability beneficiaries who work.

Medicaid (SSI)• Most States have the option of providing Medicaid

coverage to more people between the ages of 16-64 with disabilities who work.

www.hrtw.org

Disability Program Navigator Functions

- One-Stop Career Centers

• outreach and provide direct services to people with disabilities (PWD)

• prepare for, find, or retain employment by collaborating with mandated and non-mandated WIA partners and agencies.

• coordinator on SSA work incentives:Ticket to Work, linkages to SSA field offices, SSA Benefits Planning, Assistance and Outreach (BPAO) counselors, and Employment Networks.

• Assist beneficiaries in understanding the effects of earnings on SSA and other program benefits.

www.hrtw.org

Extended Coverage – Family Plan

1. Adult Disabled Dependent Care (40 states)

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

2. All Youngs Adults, 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

www.hrtw.org

9 Easy steps to Plan a Successful Transition

EXPECTATIONS: Engage them in their vision of their future-What do you want to do when you are older? Next year? Five years? TEACH: What can you tell me about your medical issues? Do they affect you from doing what you want in the day?

OPINION: What do you think of the…? Be open and honest.. listen and be “askable”… Involve in decision making (assent to consent, give them a feeling of competence)

www.hrtw.org

9 Easy steps to Plan a Successful Transition (2)

CHORES: Are you doing chores?

ATTENDANCE: How are you doing in school?

PLANNING: How are you doing with your transition plan?

www.hrtw.org

9 Easy steps to Plan a Successful Transition (3)

PARTICIPATION: What do you do when not in school?

CAREER/WORK: What kind of work/career do you want to do?

STAY WELL: Are you taking care of your health?

www.hrtw.org

YOUTH Responsibilities:

• Know about your disability and be able to talk to other people about your disability and health needs.

• Prepare to participate in team meetings and make sure that everyone is aware of your feelings.

• Need to be able to talk about your wants, needs, and goals.

www.hrtw.org

YOUTH RIGHTS:

• To have a say in your future & YOUR LIFE

• To be treated fairly

• To have your feelings, thoughts and wants taken SERIOUSLY

• To be involved your IEP, medical treatments, and transition plans (educational & medical)

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

• Bottom line: with or without us- youth and families get older and will move on…Think what can make it easier; do what’s in your control and support youth to tackle what’s their control.

1.Start early

2.Ask and reinforce life span skills prepare for the marathon (post your practice transition policies, help families to understand their changing role)

3.Assist youth to learn how to extend wellness

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

References

Healthy & Ready To Work: http://www.hrtw.org

Family Village: http://www.familyvillage.wisc.edu

Transition Coalition: http://www.transitioncoalition.org

Transition Solutions: http://www.transitionsolutions.org

The Youthhood: http://www.youthhood.org

Health Care Transitions: http://hctransitions.ichp.edu

DATA

National Longitudinal Transition Survey 2 (NTLS2) http://www.nlts2.org

References -02

EDUCATION

- National Dissemination Center for Children with Disabilities (NICHCY) http://www.nichcy.org- National Secondary Transition Technical Assistance Center (NSTTAC) http://www.nsttac.org- National Center on Secondary Education and Transition (NCSET) http://www.ncset.org

-US Department of Education: http://www.ed.gov-Special Education Resources http://seriweb.com-National Collaborative on Workforce and Disability (NCWD) http://www.ncwd-youth.info/index.html-National Post-School Outcomes Center: http://psocenter.org

References-03

Council for Exceptional Children http://www.cec.sped.org

IDEA Partnership http://www.ideapartnership.org

Pacer Center http://www.pacer.org

Wrightslaw http://www.wrightslaw.com

Disaboom http://www.disaboom.com

TecAccess http://www.tecaccess.net