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www.hrtw.org Health Care Transition Transitions in Care for Adolescents with Special Health Care Needs Preparing for the Difference between pediatric and adult health care Patience H. White, MD, MA, FAAP
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www.hrtw.org
Health Care Transition
Transitions in Care for Adolescents with Special Health Care Needs
Preparing for the Difference between
pediatric and adult health care
Patience H. White, MD, MA, FAAP
www.hrtw.org
Disclosure
• Dr. White does not have a financial relationship or interest with any proprietary entity producing health care goods or services related to the content of this CME activity.
• The content will not include discussion/reference of any commercial products or services.
• Dr. White does not intend to discuss an unapproved/ investigative use of commercial products/devices.
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www.hrtw.org
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What age would people say
would be the best years
of their lives
beginning at age 10
in 5 year blocks?
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Don’t Want to Grow Up: age adults say they want to remain
(USA Today Poll 2000)
Age (yrs) Men (%) Women (%)
5-10 8 8
11-14 4 6
15-20 34 20
21-25 29 2826-30 8 10
31-35 7 10
36-40 3 7
41 and up 7 9
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Health Is A Resource For 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
Objectives
• List the key elements of the national academies’ (AAP, AAFP, ACP, IOM) young people’s and HCPs’ perspective on transition to adult healthcare
• Define the role of physicians and other care providers/coordinators in the transition of youth from pediatric to adult medical care.
• Discuss use of transition tools from the Healthy and Ready To Work (HRTW) website and other national resources.
www.hrtw.org
Think about
• What do you think youth with SHCN say about successful transitions to adulthood?
• At what age should children/youth start asking their own questions to their Doctor?
• At what age does your practice encourage assent signatures?
Not everything that can be counted counts,
and not everything that counts can be counted.Albert Einstein
What does
the Data
tell us?
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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
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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
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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?
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 and disabled friends
Family and peer support
Parental support w/out over protectiveness
Source: Weiner, 1992
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2005 British Study of 77 17 year old youth with JIA: 20% NOT taking their own meds
Significant association with independent visits (p=0.002)
55.8% see Rheum with parents, 26% see GP independently
79% household chores; only 1 work exp (none for 12-14 yr olds)
14% had had no Career counselling (CC)Median no. of CC sessions 1 (0 to 6)
Adolescent Rheumatology Transition Knowledge Questionnaire ART – KQ Sub-optimal-Median score = 9 (1 to 15)
HRQol (JAQQ) - Median 2.9 (1 to 6.8)Biggest problems: Depression 63.6%
Fatigue 49.4% Frustration 39%
Are 17 year olds Involved in their Disease Self Management?
Shaw KL, Southwood TR, McDonagh JE 2005
www.hrtw.org
AERC Outcome Research
200 youth (ages 12-20)with SHCN & parents completed the following instruments:
CMI, work experience, demographics, parents perception of work readiness
Results: - Majority of youth with SHCN feel future certain
(attitude similar to age mates without disabilities), delayed in all other CMI categories, esp. knowledge of workplace
- Parents think first job experience should be at age 16 or older
- parental SES not correlated with CMI
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Internal Medicine Nephrologists (n=35)Survey Components Percentages
Percent of transitioned patients < 2% in 95% of practices
Transitioned pats. came with an introduction 75%75%Transitioned patients know their meds 45%45%Transitioned patients know their disease 30%30%
Transitioned patients ask questions 20%20%Parents of transitioned patients ask questions
69%69%
Transitioned Adults believed they had a difficult transition
40%40%
Maria Ferris, MD, PhD, MPH, UNC Kidney Center
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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
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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
6 Critical First Stepsto Ensuring Successful Transitioning
To Adult-Oriented Health Care
www.hrtw.org
IOM QUALITY MEASURES 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
Objectives
• List the key elements of the national academies’ (AAP, AAFP, ACP, IOM) young people’s and HCPs’ perspective on transition to adult healthcare
• Define the role of physicians and other care providers/coordinators in the transition of youth from pediatric to adult medical care.
• Discuss use of transition tools from the Healthy and Ready To Work (HRTW) website and other national resources.
www.hrtw.org
Think About
• What is transition for youth with SHCN?
• When did you transition to adult care? How about your children?
• What skills do youth need before transitioning to adult HC providers?
• How do you support families in their transitioning roles?
www.hrtw.org
What is 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.
www.hrtw.org
The Transition ProcessThe 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
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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
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Time
Jan 2004
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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)
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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….
www.hrtw.org
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
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Think About
• Are you/primary care providers using the ACP/AAP/AAFP/Consensus Statement as a guide to accomplish transition for youth with SHCN?
• Have Transition programs been shown to work?
• What age does the literature show is the most effective time to start discussing with the youth about the transition process?
• How do you teach children and youth with SHCN about their wellness and disease baseline?
www.hrtw.org
HRTW Surveys: Results
About Those Who Responded
52 physicians / 26 statesMost involved with Medical Home projects47 pediatricians, 4 Med-Peds, 1 Family
Consensus Statement- Knowledge
50% were familiar 6 % unsure 42% not
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87% Fragmentation of care among systems
56% Lack of services for YSHCN who require supported living
43% Unwilling to transition youth SHCN
82% Lack of knowledge or linkages to community resources
85% Lack of staff time
Results: Barriers to Transition Extremely Important/Important
www.hrtw.org
83% Lack of capacity of adult providers for care of YSHCN
73% Inability to access adult specialty care
75% Limited coverage for services by public/private insurance 61% Low reimbursement levels for transition services
Results: Barriers to Transition Extremely Important/Important
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Results: Identify Primary Care
46% Have Policy to Transition Youthif yes, what age? 18-22
1% posted the policy for families/youth to see
63% Have practice to whom they referif yes, why that practice? 70% personal
relationship
56% recruit providers adult primary /specialty (31% want help)
64% support adult providers assuming care for YSCHN (29 % want help)
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Results: Identify Primary Care
92% provide care coordination to youth with complex conditions (7% want help)
50% have dedicated staff member who coordinates transition
care coordinator (overlap)>social worker>nurse
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Results: Core Knowledge & Skills
36% have forms to support transition (82% want help)
39% provide educational materials
regarding transition (48% want help)
www.hrtw.org
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)
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Results: Core Knowledge & Skills
63% promote independence in health condition management
(25% want help) When youth tern 18-writen policy to
discuss? 77% no Do you seek verbal assent? 81% Written 23%
50% refer to skill-building experiences
(35% want help)
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Results: Core Knowledge & Skills
79% refer to community resources/ public benefits (15 % want help)
Formal referral mechanisms in place:
39% mental health/counseling 25% adult subspecialty 21% adult PCPs 21% dental
< 15% make formal referral to adult services VR, SSI work incentives, school or college services, recreation, transportation, attendant care, Centers for Independent Living, supported living, housing (about 20% provide information)
www.hrtw.org
Results: Create Portable Medical Summary
35% Make transportable medical record for some patients (43% want help)
www.hrtw.org
Results: Written Health Transition Plan
33% Create individualized health transition plan for at least some patients (39% want help)
61% Helped write IEP goals:
29% none 36% 1-5 x in past year 35% 6 or more times in past year
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Results: Preventive Screening
86% Preventive screening – CYSHCN
32% AAP forms 21% GAPS 18% Bright Futures
18% Guidelines to Clinical Preventive Services
7% State health department forms
Others – created or adapted forms
www.hrtw.org
Results: Preventive Screening
65% Screen to identify YSHCN who need transition services
(29% want help)
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Results: Ensure Continuous Health Insurance (6)
43% assist with planning for continuous health insurance during transition
(32% want help) 75% assist with SSI medical documentation/re-determination
(25% want help)
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Results: Ensure Continuous Health Insurance (6)
88% want information on coding for reimbursement for transition services
who turn for info?
Self directed 44% Staff based coor 40% Family to Family 33% Title V 23%
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Results: Overall practice assessment
Rate your practice with regards to transition processes in general:
not interested 2%
not have, interested 29% beginning stages 25%
working on policy/processes 19% have policy and processes integrated 13%
www.hrtw.org
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 to give youth with SHCN the tools/skills to negotiate adult health care practices
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1. Identify appropriate primary care provider
2. Identify core knowledge and skills Encounter checklists Outcome lists Teaching tools
Concensus Statement Pediatrics 2002:110 (suppl) 1304-1306
6 Critical First Stepsto Ensuring Successful Transitioning
To Adult-Oriented Health Care
www.hrtw.org
Core Knowledge & Skills: Office POLICY
1. Written transition policy and posted 2. Legal health care decision making is discussed
prior to youth turning 18 3. Prior to age 18, youth sign assent forms for
treatments4. Office forms developed to support transition
processes5. Identified staff person coordinates transition
activities6. CPT coding used to maximize reimbursement
for transition services
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Core Knowledge & Skills: MEDICAL HOME
1. Practice creates an individualized health transition plan before age 14
2. Organizes a structured observation visit to adult office before transfer
3. Practice refers youth to specific primary care physicians
4. Practice actively recruits adult primary care /specialty providers for referral
5. Practice provides support and confers with adult providers pre/post transfer
6. Practice provides care coordination for youth with CTD
www.hrtw.org
Core Knowledge & Skills: FAMILY & YOUTH
1. Practice discusses transition planning and transfers youth when CTD disease is not in a crisis
2. Practice provides educational packet or handouts
2. Youth participate in shared care management
and self care
4. Practice assists families/youth to develop an emergency plan
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Do you have “ICE” in your cell phone contact list?
• 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)
To Program……….
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How to prepare for the difference in 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
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Core Knowledge & Skills: FAMILY & YOUTH
6. Practice assists with planning for school and/or work accommodations (504 Plans in high school; letter for DSS for post secondary school; discuss how/when to disclose illness/disability)
7. Practice assists with medical documentation for program eligibility if needed (SSI, VR, College)
8. Practice refers family/youth to resources that support skill-building: transition programs, mentoring, camps, recreation, activities of daily living, volunteer/ paid work experiences
www.hrtw.org
Have Transition Programs been shown to improve transition/health outcomes?
YES
Adolescent Employment Readiness Program (USA): generic pediatric hospital based service offering educational, life skills, career and employment readiness
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AERC Research:
Youth are less interested in any transition organized
around medical issues and
more interested in a transition to financial and
social independence.
www.hrtw.org
AERC Context: Data on Adolescent Work in the USA
Employers rank prior work experience, attitude and communication skills most important in hiring decisions
Work patterns of teenagers during the school year: - 40% 7th and 8th graders - 80% high school students
Educational level attained relates to survival, future income level and probability of labor force
participation (Yeltin 1996)
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AERC Context: Data on Adolescent Work in the USA
Teens take health risks less if work under 20 hrs/week (JAMA, 1998)
Part-time work data key to employment success:- essential to future work success (Skurikor 1993)
Minority, poor and disabled youth have less work experience but when work, same hours and wages attained
www.hrtw.org
2002 AERC/SSA Program: cohort selection
1510 fliers mailed by health insurance to social security income recipients 12 -18 years in DC
Diagnosis: SSI Qualify 80% MR,LR, CP 40% co morbidity with CI (e.g. asthma, diabetes, CTD)
178 completed the baseline instruments Mean age-14.8 yrs race: AA 96% Latino 4%
46 lost to follow up after 1 year 132 completing research data at year 2 45 inactive / 87 activeProgram centered on vocational readiness not health
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AERC/SSA Grant: Instruments Administered
Process (Formative) Outcome: Improvement in measures evidence for
improved functioning for those too young for summative outcome measures (employment,
off SSI)
Measures used with age matched norms available:
Ansell-Casey Life Skills Assessment (ACLSA) both youth and Caregiver
Career Maturity Index (CMI) Pediatric Quality of Life Scale (PQLS) Schalock Quality of Life
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AERC RESULTS
After 1 Yr in the AERC, active* 13 yr olds:
- More engaged (three times as many 13 year olds wanted to join AERC program than other ages)
- had less differences in measurements compared to age mates w/o disabilities; gap between norms and participants increased with age of participants
- made significant improvement compared to other ages in the intermediate outcome measures: ACLSA Life Skills, CMI, and Pediatric QoL
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AERC RESULTS
After 3 years in AERC program, participants receiving AERC services have:
- more education - more paid work experience - more likely to leave SSI (6 off SSI at end of study) - Improved health from youth’s point of view - More had an adult primary care physician
ROI of program: 1 youth leaving the SSI rolls pays for 1 Year of the program!
Wolf-Branigin, Schuyler, White: Research in Social Work, 2007
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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
Pediatrics 2002:110 (suppl) 1304-1306
6 Critical First Steps
to Ensuring Successful Transitioning To Adult-Oriented Health Care
www.hrtw.org
Create Portable Medical Summary
Create by/with Youth
Use as a reference tool
Accurate medical history & contact #s
Carry in wallet/on computer
Use for disability documentation, if needed
www.hrtw.org
Preparing for the 15 minute Doctor Visit
Know Your Health & Wellness Baseline
How does your body feel on a good day?
Prepare questions at each visit
Give brief health status & overview of needs.
Know emergency plan when health changes.
What is the youth’s typical body temperature, respiration, heart rate and blood pressure.
www.hrtw.org
4. Create a written health care transition plan by age 14: what services, who provides, how financed (see handout for example of transition plan steps, check lists) Expecting, anticipating and planning
Experiences and exposures
Skills: check lists for skills and practice, practice, practice
Collaboration with schools (add health skills to IEP) and community resources
Pediatrics 2002:110 (suppl) 1304-1306
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
www.hrtw.org
5. Check that preventive screening guidelines are being completed for youth and young adults
Stay healthy Prevent secondary disabilities Catch problems early
Source: Pediatrics 2002:110 (suppl) 1304-1306
6 Critical First Stepsto Ensuring Successful Transitioning
To Adult-Oriented Health Care
www.hrtw.org
6. Ensure affordable, continuous health insurance coverage
Payment for services Learn responsible use of resources
Pediatrics 2002:110 (suppl) 1304-1306
6 Critical First Stepsto Ensuring Successful Transitioning
To Adult-Oriented Health Care
www.hrtw.org
Core Knowledge & Skills: HEALTH CARE INSURANCE
1. Practice is knowledgeable about state mandated and other insurance benefits for youth after age 18
2. Practice provides medical documentation when needed to maintain benefits
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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 Fund 2003
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Access to Employer-Based Coverage for Low and High Wage Families, 1998
KFF Medicaid and the Uninsured January 2004
010
2030
4050
6070
8090
100
low wage <$7/hr high wage $15/hr
Covered by own orspouce's employer
declined offer fromown or spouce'semployernot offered throughown or spouce'semployer
www.hrtw.org
Health Care Coverage Look with the parents at their health
insurance policy small print Check state policies to see if youth can
stay on their parents health insurance longer
Review the College health care coverage if applicable
Reinforce the need for Education to improve employment outcome/wage levels
www.hrtw.org
Extended Coverage – Family Plan
Adult, childless continued on Family Plan
Increasing age limit, unmarried, childless, most depend on student status (18 states)
Up to age 24 - DE, IN, SD*
age 25 - CO, ID, ME, MD, MT, NM, RI, TX, VA , WA, WV
age 26 - CT, MA, NH, UT
age 30 - NJ, SD*employer option
BILL INTRODUCED IN 2007 NOT PASSED YET (10 states)
AK, CA, FL, MN, MO, NV, NY, PA, OH, TN
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Coverage – Family Plan
COVERAGE FOR GRANDCHIDLREN (4 states) with/without disabilities
MD, MN, NY, TX
www.hrtw.org
Extended Coverage – Family Plan
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
AZ, AR, CA, CT, FT, GA, HI, ID, IL, IN, LA, ME, MD, MA, MI, MN, MS, MO, MT, NE, NV, NH, NJ, NM, NY, NC, ND, OH, OR, RI, SC, SD, TN, TX, UT, VA, VT, WA, WI and WY
www.hrtw.org
Having a Voice: Children and Youth
Partners in Paying
Insurance Card: Carry & Present
Youth pay co pay
Fill in insurance forms ahead of visit
Learn about coverage and coding
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
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
DSS visit at the start of school
www.hrtw.org
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?
www.hrtw.org
Objectives
• List the key elements of the national academies’ (ACR, AAP, AAFP, ACP, IOM) young people’s and HCPs’ perspective on transition to adult healthcare
• Define the role of physicians and other care providers/coordinators in the transition of youth from pediatric to adult medical care.
• Discuss use of transition tools from the Healthy and Ready To Work (HRTW) website and other national resources.
www.hrtw.org
ANY QUESTIONS?
www.hrtw.org
Patience H. White, MD, MA, FAAPMedical Advisor- HRTW Center
Chief Pubic Health OfficerArthritis Foundation
Washington, DC
Patti Hackett, MEdCo-Director, HRTW Center
Bangor, ME
www.hrtw.org
www.hrtw.org
www.hrtw.org
Title V Leadership
Toni Wall, MPA
Kathy Blomquist, RN, PhD
Theresa Glore, MS
Federal Policy
Patti Hackett, MEd
Tom Gloss
Interagency Partnerships
Debbie Gilmer, MEd
Medical Home & Transition
Richard Antonelli, MD, MS, FAAP
Patience H. White, MD, MA, FAAP
Betty Presler, ARNP, PhD
Family, Youth & Cultural Competence
Mallory Cyr
Ceci Shapland, MSN
Trish Thomas
HRSA/MCHB Project Officer
Elizabeth McGuire
HRTW TEAM
www.hrtw.org
www.hdwg.org/catalyst/index.php
State-at-a-Glance Chartbook on Coverage and Financing of Care for Children and Youth with Special Needs
www.hrtw.org
Medicalhomeinfo.org
www.hrtw.org
www11.georgetown.edu/research/gucchd/nccc
www.hrtw.org
www.familyvoices.org
www.hrtw.org
Got Data?
www. cshcndata.orgData Resource Center National Survey for CSHCN
Nov.2007
