Transcript Healthy and Ready to Work - Syntiro

The Ultimate Outcome: Transition to Adulthood
Children & Youth with Special Needs
Patience H. White, MD, MA, FAAP
HRTW Medical Advisor
Chief Public Health Officer,
Arthritis Foundation
Washington, DC
Patti Hackett, MEd
Co-Director
Healthy & Ready to Work National Center
Bangor, ME
LEND-DC
Wednesday, April 23, 2008
www.hrtw.org
Do you have “ICE” in your
cell phone contact list?
To Program……….
• 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)
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.
www.hrtw.org
www.hrtw.org
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Learning Objectives
1. Define transition and its components
2. Discuss the ways self determination and
person centered planning is integral to the
transition process.
3. Discuss sexual issues with youth with
disabilities
4. List ways you can assist a young person and
their family prepare to move to adult systems
www.hrtw.org
What would you think a group of
“successful” adults with disabilities
would say is the most important factor
that assisted them in being successful?
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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 / disabled friends
 Family and peer support
 Parental support without over
protectiveness
www.hrtw.org
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 /disabled friends
 Family and peer support
 Parental support without over protectiveness
Weiner, 1992
www.hrtw.org
Health & Wellness: Being Informed
“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.”
Ansell BM & Chamberlain MA. Clinical Rheum. 1998; 12:363-374
www.hrtw.org
9:00-10:30am Transition
1. What do you remember about your
adolescent years and health carewhen did you leave your pediatrician
and move to an internist?
www.hrtw.org
2. Have you had experience in assisting
a youth with a disability moving to
adult systems?
www.hrtw.org
3. What is transition?
4. Who needs transition planning?
www.hrtw.org
The Ultimate Outcome:
Transition to Adulthood
Health Care Transition
Requires Time & Skills
for children, youth, families
and their Doctors too!
www.hrtw.org
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
www.hrtw.org
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.”
www.hrtw.org
CYSHCN
9.4 million (13%) <18
www.cshcndata.org
Title V CYSHCN: 963,634 (0-18*)
SOURCE: Title V Block Grant FY 2006 Application
* Most State Title V CSHCN Programs end at age 18
www.hrtw.org
SSI Recipients
1,036,990
ages 0-17
DC – 4,354
386,360
ages 13-17
DC – 2,299
SOURCE: SSA, Children Receiving SSI,
December 2005
www.hrtw.org
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
6 Obtain financing for school
(USA)
(USA)
SOURCE: Point of Departure, a PACER Center publication Fall, 1996
www.hrtw.org
Youth are Talking: Are We Listening?
Experiences that were most important:
• learning to stay healthy
• getting health insurance
SOURCE: National Youth Leadership Network
Survey-2001,
www.hrtw.org
300 youth leaders disabilities
Youth are Talking: Health Concerns
Survey - 1300 YOUTH with SHCN / disabilities
Main concerns for health:
– what to do in an emergency,
– 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
www.hrtw.org
Outcome Realities
• Nearly 40% cannot identify a primary care
physician
• 20% consider their pediatric specialist to
be their ‘regular’ physician
• Primary health concerns that are not being
met
• Fewer work opportunities, lower high
school grad rates and high drop out from
college
• YSHCN are 3 X more likely to live on
income < $15,000
www.hrtw.org
CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002
Internal Medicine Nephrologists (n=35)
Survey Components
Percent of transitioned patients
Percentages
< 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%
www.hrtw.org
Maria Ferris, MD, PhD, MPH, UNC Kidney Center
Maintaining Insurance Coverage
NO HEALTH INSURANCE
• 2 out of 5 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 Fund 2003
www.hrtw.org
What Is Transition?
Transition is the deliberate, coordinated
provision of developmentally appropriate
and culturally competent health
assessments, counseling, and referrals.
Components of successful transition
•
•
•
•
Self-Determination
Person Centered Planning
Prep for Adult health care
Work /Independence
• Inclusion in community life
• Start Early
www.hrtw.org
The Transition Process
Referral & Transfer of Care
Pediatric Care
Adult Care
Transition
SOURCE: Rosen DS. Grand Rounds: All Grown up and Nowhere to Go:
Transition From Pediatric to Adult Health Care for Adolescents With Chronic
Conditions. Presented at: Children’s Hospital of Philadelphia; Philadelphia, PA,
2003
www.hrtw.org
RESULTS: Summary of Initial Trends
• After 3 years in AERC, active*
participants have:
–
–
–
–
–
more education
more paid work experience
more likely to leave SSI ( 3 are off SSI, 3 on their way)
Improved health from youth’s point of view
more likely to have an adult primary care
physician
* Receiving AERC services
ROI of program: 1 youth leaving the SSI rolls
pays for 1 Year of the entire program!
www.hrtw.org
Social Work and Research, 2007
Adolescent Employment Readiness
Center (AERC) Research Results:
Youth are less interested in
any transition organized
around medical issues and
more interested in a
transition to financial and
social independence.
13 year olds made the
most improvement with
least amount
of resource investment.
www.hrtw.org
Social Work and Research, 2007
Health Affects Everything!!
• Employment
• Housing
• School
• Community Living
• Recreation
www.hrtw.org
Medical Context
The youth and family find
themselves between two medical
worlds……
that often do not communicate…..
www.hrtw.org
Pediatric
Adult
Age-related
Growth&
development, future
focussed
Maintenance/decline:
Optimize the present
Focus
Family
Individual
Approach
Paternalistic
Proactive
Collaborative,
Reactive
Shared decisionmaking
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
www.hrtw.org
# of patients
Fewer
Greater
Know the OUTCOMES of your services
• Increase Quality of Life
• Prevent Secondary
Conditions
Education
• Access to Health care
Recreation
• Maintain Health
insurance
Work
• Informed decision
making by youth
www.hrtw.org
Independent
living
IOM QUALITY MEASURES
The Health care system should be:
• Safe
• Effective
• Patient centered
• Timely
• Efficient
• Equitable
SOURCE: Crossing the Quality Chasm 2001
www.hrtw.org
Health Care Processes Should Have:
• Care based on continuing healing relationships
• Customization based on patient needs and values
• Patient as source of control
• Shared knowledge and free flow of information
• Safety
• Transparency
• Anticipation of needs
SOURCE: Crossing the Quality Chasm 2001
www.hrtw.org
4. What organizations support
transition?
www.hrtw.org
Living Well with a Disability
Youth
Family
Friends
Community
Participation
Personal & Civic
Responsibility
Self
Sufficiency
Employment
www.hrtw.org
Peers
School
Attendance
Self
Advocacy
Independent
Living
Mentors/
Role Models
Other
“Encouragers”
Career
Development
Self-Care
Access to Appropriate use
of Health Care
Wellness:
Physical, Social,
Emotional
Collaboration with Community Partners
• Special Education Co-ops
• Higher Education
• Vocational Rehabilitation/
• Workforce Development
• Centers for Independent Living
• Housing, Transportation, Personal
Assistance, and Recreation
• Mental health
• Grant projects in your state
www.hrtw.org
Definition of Medical Home
Care that is:
•
•
•
•
•
•
•
Accessible
Family-centered
Comprehensive
Continuous
Coordinated
Compassionate
Culturally-effective
www.hrtw.org
and for which
the primary care
provider shares
responsibility
with the family.
What is Medical Home Really? -01
A Medical Home is a community-based,
primary care setting that integrates high
quality, evidence-based standards in
providing and coordinating family-centered
health promotion as well as acute and
chronic condition management.
www.hrtw.org
What is Medical Home Really? -02
A subspecialist can provide a Medical
Home as long as all elements of the
care needs of the patient are
addressed.
www.hrtw.org
Patient Centered Medical Home
2007
American Academy of Family Physicians (AAFP)
American Academy of Pediatrics (AAP)
American College of Physicians (ACP)
American Osteopathic Association (AOA)
www.hrtw.org
Patient Centered Medical Home (1)
• Personal physician - each patient has an ongoing
relationship with a personal physician trained to
provide first contact, continuous and comprehensive
care.
• Physician directed medical practice – the personal
physician leads a team of individuals at the practice
level who collectively take responsibility for the ongoing
care of patients.
• Whole person orientation – the personal physician is
responsible for providing for all the patient’s health
care needs or taking responsibility for appropriately
arranging care with other qualified professionals. This
includes care for all stages of life; acute care; chronic
care; preventive services; and end of life care.
www.hrtw.org
Patient Centered Medical Home (2)
• Whole person orientation – the personal
physician is responsible for providing for all the
patient’s health care needs or taking
responsibility for appropriately arranging care
with other qualified professionals.
This includes care for all stages of life; acute
care; chronic care; preventive services; and
end of life care.
www.hrtw.org
Patient Centered Medical Home (3)
• Care is coordinated and/or integrated
across all
elements of the complex health care system (e.g.,
subspecialty care, hospitals, home health agencies,
nursing homes) and the patient’s community (e.g.,
family, public and private community-based services).
Care is facilitated by registries, information technology,
health information exchange and other means to
assure that patients get the indicated care when and
where they need and want it in a culturally and
linguistically appropriate manner.
www.hrtw.org
Patient Centered Medical Home (4)
• Quality and safety are hallmarks of the medical home: Practices
advocate for their patients to support the attainment of optimal,
patient-centered outcomes that are defined by a care planning
process driven by a compassionate, robust partnership between
physicians, patients, and the patient’s family.
•
Enhanced access to care is available through systems such as
open scheduling, expanded hours and new options for
communication between patients, their personal physician, and
practice staff.
• Payment appropriately recognizes the added value provided to
patients who have a patient-centered medical home.
www.hrtw.org
Patient Centered Medical Home (5)
Background of the Medical Home Concept
• The American Academy of Pediatrics (AAP) introduced
the medical home concept in 1967, initially referring to
a central location for archiving a child’s medical record.
• In its 2002 policy statement, the AAP expanded the
medical home concept to include these operational
characteristics: accessible, continuous, comprehensive,
family-centered, coordinated, compassionate, and
culturally effective care.
www.hrtw.org
Patient Centered Medical Home (6)
Background of the Medical Home Concept (con’t.)
The American Academy of Family Physicians
(AAFP) and the American College of Physicians
(ACP) have since developed their own models
for improving patient care called the “medical
home” (AAFP, 2004) or “advanced medical
home” (ACP, 2006).
www.hrtw.org
Title V CYSHCN Agencies
6 National Performance Measures
for Systems for CYSHCN
•
•
•
•
•
•
Screening
Family and Youth Involvement
Medical Home
Insurance
Coordinated Systems of Care
Transition – the Ultimate Outcome
Block Grant - Services of Title V CSHCN agencies
How to find your state agencies
www.championsinc.org
www.hrtw.org
A Consensus Statement on 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
Pediatrics 2002:110 (suppl) 1304-1306
www.hrtw.org
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
1. Identify primary care provider



Peds to adult
Specialty providers
Other providers
Pediatrics 2002:110 (suppl) 1304-1306
www.hrtw.org
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
2. Identify core knowledge and skills

Encounter checklists

Outcome lists

Teaching tools
www.hrtw.org
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
3. Maintain an up-to-date medical summary
that is portable and accessible
 Knowledge of condition, prioritize
health issues
 Communication / learning / culture
 Medications and equipment
 Provider contact information
 Emergency planning
 Insurance information, health surrogate
www.hrtw.org
Pediatrics 2002:110 (suppl) 1304-1306
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
4. Create a written health care transition
plan by age 14: what services, who
provides, how financed
 Expecting, anticipating and planning
 Experiences and exposures
 Skills: practice, practice, practice
 Collaboration with schools and
community resources
www.hrtw.org
Pediatrics 2002:110 (suppl) 1304-1306
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
5. Apply preventive screening guidelines
 Stay healthy
 Prevent secondary disabilities
 Catch problems early
6. Ensure affordable, continuous health
insurance coverage
 Payment for services
 Learn responsible use of resources
Pediatrics 2002:110 (suppl) 1304-1306
www.hrtw.org
TOOLS
www.hrtw.org
Transition Tools:
Follow an informed decision making road
Shared management
Look to the future for needed skills
9 easy questions to plan for a
successful transition process
Guide for accommodations
www.hrtw.org
“Shared Management” as the Goal
 Consciously not using more common
term “self-management”
 View the highest level of
achievement is not independence
but effective interdependence
Kieckhefer 2000
www.hrtw.org
Shared Decision Making 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
www.hrtw.org
Levels of Support Shared Decision Making
Levels of Support
Independent
Family Role
Coach
Interdependent Consultant
Coordinates
Dependent
www.hrtw.org
Manages
Coordinates
(expand circle
of support)
Young Person
Can do or
can direct others
Can do or
can direct others
May need support in
some areas
Needs support
full-time in
all areas
Screen for All Health Needs
• Hygiene
• Nutrition (Stamina)
• Exercise
• Sexuality Issues
• Mental Health
• Routine
(Immunizations, Blood-work, Vision, etc.)
• Secondary Conditions/Disabilities
• Accelerated Aging issues
www.hrtw.org
Health & …. Life-Span
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
H
E
A
D
Home
(relationships, social support, household chores)
Education
Exercise
(school, exams, work experience, career)
Activities (peer network, time away from home)
· Ambitions
Affect
Drugs, cigarettes, alcohol
Diet (calcium, vitamin D, weight, caffeine, soft drinks)
Dental care
Driving (learning, use of public transportation)
S
Sex (concerns, periods, contraception, sexual health, puberty)
Sleep
www.hrtw.org
9 Easy steps to Plan a Successful Transition
EXPECTATIONS: Talk with child/youth/ family
about expectations for the future. Think about the
future in 1-2 year segments.
TEACH: Re-teach about the health condition and
needed services based on changing cognitive
development; provide prognosis/ natural history data
OPINION: Ask the opinion of your young
patients…get their ideas… respect confidentiality…be
open and honest.. listen and be “askable”… involve in
decision making (assent to consent, give them a sense of
competence)
www.hrtw.org
9 Easy steps to plan a Successful Transition
CHORES: Are they doing chores?
Independence skills start with having
responsibilities in the family
ATTENDANCE: consistent attendance at school
leads to a pattern of consistent attendance on
the job and likely hood of attendance to post
secondary school.
PLANNING: Transition planning is key - more
than a referral-clarify roles for all
involved/understand
health insurance
www.hrtw.org
9 Easy steps to plan a Successful Transition
PARTICIPATION: Ask about social/ leisure
activities and strategize how they can participate more
fully; acknowledge teen lifestyle
CAREER: Ask about volunteer opportunities in the
community (keep on work developmental milestones), paid
work < 20 hours/week
STAY WELL: key to being part of the action for all
players (eg HEADS)
www.hrtw.org
Post-secondary: Medical Issues
Selection of school: Career training with
support services and scholarships.
Medical supports needed at school, nearby
campus, and plans for emergency and inpatient
events.
Insurance Coverage (is it adequate and is it
one plan or a patch of plans)
Modifications: Work Load, Medical Care, and
Proactive Wellness
Visit the DSS at the start of school
www.hrtw.org
Informed Decision Makers
FERPA
Family Education Rights & Privacy Act
HIPAA
Health Insurance Portability and
Accountability Act
1. Privacy  Records
2. Consent  Signature (signature stamp)
- Assent to Consent
- Varying levels of support
- Stand-by (health surrogate)
- Guardianship (limited to full)
www.hrtw.org
Preparing for the 15 minute Doctor Visit
Know Your Health & Wellness Baseline
• How does your body feel on a good day?
• What is your typical body temperature,
respiration count, plus and elimination
habits?
www.hrtw.org
Create Portable Medical Summary
- Use as a reference tool
- Accurate medical history & contact #s
- Carry in your wallet.
- Use for disability documentation
www.hrtw.org
Survive & Thrive!
- Encourage questions at each visit.
- TOOL: 5 Q
- Assent: co-sign treatment plans.
- Youth calls for appointments and Rx refills
Concise Medical Reporting
- Give brief health status and overview of needs.
- Know the emergency plan when health changes.
www.hrtw.org
Celebrate the Paperwork!
It Means You are Alive!
Partners in Paying
- INSURANCE CARD: Carry & Present
- Fill in insurance forms ahead of visit
- Child/Youth give the co-pay
- Age 10 – call for appt & Rx refills
www.hrtw.org
5. How would you plan for transition to
adult health care for this youth?
www.hrtw.org
Health Affects Everything!
Joe’s Story
• Great job
• Excellent training
• Own apartment
• Good social life
Then what…………………….???
www.hrtw.org
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?
www.hrtw.org
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?
www.hrtw.org
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?
www.hrtw.org
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?
www.hrtw.org
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?
www.hrtw.org
10:30-10:45
www.hrtw.org
Break
10:45-11:30
Sexuality: Yes Youth Feel Sexy!
www.hrtw.org
Attitudes &…..Embarrassment?
So do you have one? Received one?
The Erection Letter
Why do these words
– make you blush?
 sex
 masturbation
 adaptive masturbation
www.hrtw.org
Transitions – adult view

Adult body

Mature (abstract) cognitive style

Separate from family/leave family home

Sustained peer relationships

Intimate relationships

Increasing autonomy….Interdependence

Define a productive adult role
www.hrtw.org
What’s on their minds?
www.hrtw.org
Transitions – youth viewpoint

Preoccupation - body & physical changes

Strong need to "belong"

Primacy of the peer group

Experimentation and risk-taking

More like those without a diagnosis
than different
www.hrtw.org
A Million
Dollar
Blanket
VC
VD
www.hrtw.org
The Myths
People with disabilities
 are asexual
 should not have sexual needs or
feelings
 are hypersexual
www.hrtw.org
The Concerns - Families
 sexual abuse
 inappropriate behavior
 pregnancy
 STDs
 education will lead to arousal,
irresponsible behavior
www.hrtw.org
The Concerns - Youth
 what to do about “the feelings”
 how to be (more)
attractive/desirable
 masturbation – dos / do nots
 Doing IT! how, when, supports
Sexuality is about acceptance of self
and acceptance by others
www.hrtw.org
The Concerns - Youth
 social segregation
 lack of referrals - “experts”
-
adults with disabilities
CILs
rehabilitation phsychologist
sexologist
 emotional survival
 manage sexual urges
 overcome social stereotypes:
childlike, need of constant care
www.hrtw.org
TIME, Sunday, Jul. 16, 2006
"Love," can't be stopped by cultural
differences or different faiths.
"Love can't be stopped by Down
syndrome."
Quote from Minister who married
Carolyn Bergeron, 29, and Sujeet Desai, 25,
www.hrtw.org
Learning to Savor a Full Life,
Love Life Included
NY Times, April 20, 2006
The one time their romance was
in trouble — a girl "was
spending too much time at
Gary's house, and I didn't like
it," Ms. Graham said — they
went to couples' counseling and
worked it out.
Their next hurdle will be moving
from their family homes, both in
Brooklyn, to a group residence.
There, for the first time, Ms.
Graham, who is mentally
retarded, and Mr. Ruvolo, who
has Down syndrome, will be
permitted to spend time
together in private.
www.hrtw.org
The Concerns -- Teachers
 What is my role?
(legal too!)
 Balance need to know
 Balance cultural / religious beliefs
 Open dialogue - respect and privacy
 What to share or not with parents?
 Where are the experts? Role
models?
www.hrtw.org
Who Starts the Discussion?
1. Medical (Doc, Nurse, OT/PT)
2. Family (how early?)
3. Teachers
4. Community resources
Everyday messages: TV, videos,
Friends, Internet – family, community
www.hrtw.org
Family Roles
 What pediatricians & teachers
don’t know - don’t want to know
 Discussion with primary care - referral
 Medical Home www.medicalhomeinfo.com
(Sexuality as part of REAL comprehensive care plan)
 Including in the IEPs, OT/PT plans
www.hrtw.org
Medical Provider Role: Transition
 HEALTH - IHTP (Individualized Health Transition Plan)
Create a written health care transition plan by
age 14: what services, who provides, how
financed
Consensus Statement on Health Care
Transitions Pediatrics 2002:110 (suppl) 1304-1306
American Academy of Pediatrics
American Academy of Family Physicians
American College of Physicians/American Society of Internal Medicine
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Family Roles
 Changing role:
Parent  Personal Support
 Honesty & Dignity (before puberty)
 Pre-plan (smoothing out awkward moments)
 When personal values differ
 Terminal does not mean asexual
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Personal Assistance Services
(PAS)
 PAS for sexual expression
 Choosing a provider
 Family as providers
 Feeling safe & comfortable with choice
 No PAS  No sex  No choice
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What We Did: Supporting My Son
 Masturbation Time!
 Supplies:
Youth (directs)
Parent (gathers)
 Role Switch: parent  personal support
 Clean-up (no talking)
 Role Switch: personal support  parent
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Youth & Family Roles
 Assess - The Plan, Supplies & Support
 Revise supports - disease progression
 Libido change: Rx Traditional - Alternative
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Sexuality & YOU
 Myths:
Green M&Ms
 The # 200 ???
 Dr. Oz
Recommendation
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200
Sexuality & YOU
 Before your conversation
with Child/Youth know
first get comfortable with Your Values
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Resources
 www.MyPleasure.com
 www.Sexualhealth.com
 The Ultimate Guide to Sex and Disability
(Kaufman, Silverberg, & Odette, 2003)
 Quality Mall – Person Centered services
supporting people with developmental
disabilities
 http://www.qualitymall.org/directory/dept1.asp?depti
d=16
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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
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?
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What
would
you do,
if you
thought
you could
not fail?
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The Ultimate Outcome: Transition to Adulthood
Patience H. White, MD, MA, FAAP
[email protected]
Patti Hackett, MEd
[email protected]
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Questions?
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11:30 - Noon
• Wrap up
• Fill out evaluation form
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Evaluation Questions:
• What in this session interested you?
• What in this session surprised you?
• What did you not find interesting or
surprising?
• Did anything in this session bother you?
• What will you use in your future work that
you learned today?
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