Transitions: Growing Up Ready to Live! Transition Journey: Personal and Work Ceci Shapland, RN, MSN...
-
Upload
vivien-joseph -
Category
Documents
-
view
215 -
download
0
Transcript of Transitions: Growing Up Ready to Live! Transition Journey: Personal and Work Ceci Shapland, RN, MSN...
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
Ceci Shapland, RN, MSNConsultant-Family Involvement
Vadnais Heights, MN [email protected]
Mallory CyrYouth Coordinator, HRTW Center
Sabattus, ME
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?