1. Health Care for Persons with Developmental Disabilities
for the STARability Family Forum
December 12, 2018
Janet Hess, Dr PH
University of South Florida

2. What is FloridaHATS?

3. Florida’s clearinghouse for health care transition information
I’m going to go thru the algorithm and talk about resources. All of them can be found on the FloridaHATS web site.

4. What is Health Care Transition?
Preparation
Increased responsibility for health care self-management; understanding and planning for changes in health needs, insurance, and providers in adulthood; should occur across ages
The purposeful, planned movement of adolescents and young adults, with and without special health care needs, from child-centered to adult-oriented health care systems.
Health Care Transition (HCT)
Transfer of Care
Discrete event, physical transfer from a pediatric to an adult provider; should occur between ages
Preparation is a process that should occur over time, starting at age It involves increasing the patients responsibility for managing their own health (like take medications independently, being able to communicate with providers, making their own doctor’s apt, etc.). It’s also understanding and planning for changes in insurance coverage and health care needs in adulthood.
Transfer is the discrete event, or hand-off from a pediatric provider to an adult provider, which ideally happens between ages
Successful Transition
Patients are engaged in and receive on-going patient-centered adult care.

5. Why is Health Care Transition Important?
Without adequate support in moving from pediatric health care to adult care, youth and young adults may:
Experience loss/gaps in your health insurance
Have poor connections to the adult health care system
Lose support with medications and self-care regimens
Have increased ER visits & hospitalizations
Experience short term decline in health and poor long term results
Loss of insurance
Decrease access
Decrease medication compliance
Increase ER visit and hospitalizations
Decline in health and poor outcome such as uncontrolled diabetes, transplant rejection, premature death with congenital heart disease.
Institute of Medicine, 2007; Boyle et al. 2001; Callahan et al. 2001; Betz 2003; Freyer et al. 2008; Tuchman et al. 2008), Watson 2000; Annunziato et al. 2007; Gurvitz et al. 2007; Dugueperouxet al. 2008; White 2002; Williams 2009. 5

6. Why is Health Care Transition Important?
“A poor transition in health care can threaten health and undermine other transitions, for example in education, work, social relationships, and independent living.”
Institute of Medicine, 2007 6

7. Goals for Transition Manage your own health
Medical decision-making
Disease self-management
Prevention, substance use, safety, sexuality
Appropriately access adult primary care, specialists, therapies, equipment, supplies, etc.
Have access to adequate and continuous health insurance
Implement education and vocational goals
The immediate benefits outweigh long term risk, examples are pregnancy, complications with health condition and taking medications require a commitment to a daily routine.
Scal, et. Al. Pediatrics 2002; Lotstein DS, et. al J Adol Med ;43:23-29 7

8. Why is it Difficult to Find Health Care Providers?

9. Barriers in the Adult System of Care9
Provider capacity and training
Lack of physicians who are
Trained in pediatric onset conditions and developmental disabilities
Willing to take primary responsibility for care
Service fragmentation
Minimal case management in adult practices
Lack of linkages to community-based adult services
Low Medicaid reimbursement rates 9

10. Adequate Insurance Coverage10
Aging out of childhood health insurance plans can create gaps/loss in coverage
Benefits in temporary jobs often limited, unavailable, or have high premiums
Increased salary may lower/eliminate public benefits
Limited benefits provided in adult Medicaid package 10

11. Are Resources and Training Available?

13. Training for Clinicians13
Web-based, cross-disciplinary training for practitioners in the clinical setting
10 modules, minutes each
Free CME/CE for physicians, physician assistants, LPNs, RNs, and other allied health professionals, through Florida AHEC Network at
Modules also posted on 13

14. Training for Clinicians

15. Training for School-Based Professionals15
Training for teachers, school nurses and other professionals in the school setting
Available at 15

16. Training for Self-Advocates16

17. Self-Management Videos
Short videos
with step-by-step instructions

18. Self-Management Smartphone Apps
Healthy Transition
There are many smartphone apps available to help youth and young adults manage their own health. Example of these are:
Medisafe is an App that provides education about medications and conditions and shares your progress
Carezone App- is a way to organize health information and access health services such as automatic reminders to take medication, create a medication list, refill prescription, or track health status.
MedCoach – is an App that will remind youth and young adults to take their medication(s).
Healthy Transitions mobile app help youth and young adults build skills for independence and manage their own health.
Healthy Transitions.
These and others discussed in this presentation can be found on the PACER Center: The Path to Independence: Mobile Apps to support Transition-Age Youth website and can be downloaded and printed.

19. Health Insurance Plan for change in insurance coverage Medicaid
Parents’ plan
Employer-based
Marketplace plans

20. Decision-Making
Consider options, such as power of attorney (POA), supported decision-making guardianship, guardian advocacy
Explore long-term financial planning strategies, such as a special needs trust

21. Voc Rehab
SSI/SSDI
APD/Med Waiver

22. FloridaHATS Service Directory
The FloridaHATS website has a Health Services Directory for young adults to help youth and young adults and their families find resources within their community. As you become aware of resources not listed in the directory you can also submit them to FloridaHATS. This will help other youth and young adults in your community become aware of services and providers in their community that they would not otherwise know.

23. Contacts Janet Hess, DrPH FloridaHATS Project Director
University of South Florida
(813)
Joni Hollis, MSN, RN, CNL
Director, Program Planning & Development Unit
Office of Children’s Medical Services Managed Care Plan
(850)