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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