Education for Empowerment:

1. Education for Empowerment: Schools & Teens in Healthcare Transition

2. What Data Tells US • More than 9 million or 13% of children in the U.S. have special health care needs • In a National Survey(Lotstein, McPherson, Strickland, and Newacheck, 2005): One in five had discussed issues related to transition One third had developed a transition plan These proportions were low for minority children

3. What History Tells Us • Life expectancy has been increasing Example: median life span for children with Down Syndrome circa 1970: 12 months 2005: 49 years for children who reach one year of age, it increases to 60 years Patterson and Costa, Nature Review Genetics, 2005 • Move from an institution based system of care to a community based system of care

4. What is Healthcare Transition? • Healthcare transition is the process of transitioning from pediatric to adult-oriented health care and includes: Access to providers and insurance coverage Access to needed services within new systems of care Empowering youth with disabilities with health awareness and health-related skills

5. Who is Responsible ? Transition, in all areas of living, learning and earning, is a team approach involving: Youth – the student is the key participant Parents – parental involvement is required Health care providers &/or other agencies Education professionals, the CSE team, school nursing, and others Everyone involved!

6. STUDENT

7. Schools: EVERYWHERE!

8. Transition is Change • Depending on your role, you may: Stress different components of that change Use different language describing that change Work from different systems’ rules and regulations

9. The Purpose of IDEA To ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs & prepare them for further education, employment, and independent living; Source: IDEA Final Regulations Sec. 300.1 (a)

10. Secondary Education Transition: What is required? • All classified students aged 15 and above must have an IEP that includes appropriate measurable postsecondary goals that are annually updated and based upon anage appropriate transition assessment, transition services, including courses of study, that will reasonably enable the student to meet those postsecondary goals, and annual IEP goals related to the student’s transition services needs. • There also must be evidence that the student was invited to the IEP Team meeting where transition services are to be discussed and evidence that, if appropriate, a representative of any participating agency was invited to the IEP Team meeting with the prior consent of the parent or student who has reached the age of majority.

11. IEPs that “Reasonably Enable” • Measurable Post Secondary Goals (MPSGs) are a student’s goals for the future (after high school) in the areas of Training/Education, Employment and Community Living. • Information in the IEP, from the Present Levels of Performance through the Coordinated Set of Activities, should provide a clearly linked framework which supports the student’s MPSGs.

12. Employment - MPSG Samples After college, (Student Name) will be competitively employed in the field of… After graduation, (Student Name) will participate in a supported employment program in the area of… After graduation, (Student Name) will work part time in the community with support from a community agency in the area of…

13. Training/Education – MPSG Samples • After leaving high school, (Student Name) will enroll in courses at… • After leaving high school, (Student Name) will enroll in a certification program in… • After graduation, (Student Name) will participate in an adult education program designed to provide vocational training in… • After graduation, (Student Name) will participate in on the job training to improve his work skills at…

14. IndependentLiving - MPSG Samples Upon completion of high school, (Student Name) will independently prepare for work each day including dressing, making his lunch and accessing public transportation. Upon completion of high school, (Student Name) will participate in community based activities such as…… (Student Name) will independently keep daily medication administration appointments at the college health center. (Student Name) will live in an accessible apartment with daily personal care support visits from a home health aide.

15. How Do Health Related Goals Support the MPSGs? • Sometimes health information in the present levels of performance leads to annual goals being written for a student to work on in health related areas. • Sometimes issues related to health care and transition are better addressed under the Coordinated Set of Transition Activities (CSA) section of the IEP. • Sometimes, a health activity or procedure is more appropriately performed by a registered nurse or other staff person who has had training – this information may go in another section of the IEP. This may create some concerns about independent living and the need for ongoing supports and services after high school.

16. Health Information and the IEP • Meeting health-related goals may require support from any of these school team members: - OT or PT - Speech therapist - Special education assistant - Social worker or psychologist - Regular or special education teacher - School nurse Any Related Services needs regarding transition must also be addressed in the IEP’s Coordinated Set of Activities section

17. Barriers to Healthcare Transition Planning • Fear of Change and New Roles • Typical Adolescent Development Issues • Changing Service Systems • Not recognizing the importance of early planning • Privacy Concerns on the part of students, parents, and schools alike • Assumption Healthcare System will address this Transition—that is often NOT the case

18. Insurance Is Critical to Health • Many young people qualified to receive Medicaid have to be re-determined as they transition to adulthood & criteria for re-determination are stringent so many fall through the cracks. • Other health care programs and insurances may change or be unavailable when student reaches adulthood.

19. Self Advocacy/Self Determination

20. What is the Student’s Role? • Participate as a Team Member • Explore Options • Dream, Set Goals • Voice Hopes for the Future In short, be a teenager and grow through typical teenage developmental stages

21. Parental Involvement

22. What is the Role of Parents? • Be able to state history and needs concisely • Be a good record-keeper • Include your child—share information, model skills • Know what health-related skills and supports your child will need for success in transition • Plan EARLY—learn about system changes, know your insurance • Advocate within systems, build the team • Remember you will not always be there

23. Change for your Child • Begin conversations • Provide ample time to recognize the upcoming changes, prepare, and adjust • Provide support, encouragement, and guided practice as your child begins to take ownership of their health care needs

24. Help your Child Learn about their Diagnosis and/or Disability • Provide developmentally appropriate information • Be sure to expand your child’s understanding as they age • Information is the key to evaluating services and asking informed questions

25. What are Health-Related Skills? Health-related skills include the ability to: • State medical history concisely • Recognize a medical emergency • Communicate symptoms • Call for appointments and access transportation • Keep records • Understand and recall directions • Solve problems • Formulate and ask questions • Use insurance • Solve problems • Locate, evaluate, and connect with community services

26. Plan for Future • The goal is to empower your child to independently navigate the complex healthcare system and effectively manage health conditions & life activities. • Set goals for your young person to become employed, plan for his/her financial independence, plan for their transportation needs and independent living, be a role model in building social relationships. • Remember, the focus is on developing self-determination and self-advocacy skills!

27. Moving to Adult Service SystemsLearning the Rules of the Road • Start Investigating Early – by middle school • Understand the difference between entitlement and eligibility – No IEPs in the adult world • Know the adult legal system regarding disabilities – ADA, 504, guardianship • Know about healthcare plans – navigating health insurance and public support (SSI, Medicaid, SSDI)

28. Moving to Adult Service SystemsExpanding the Team • Identify Adult Healthcare Providers • Understand the role of vocational rehabilitation system to help your young person find a job and become employed • Become an active advocate and a guide as your teen transitions to adult roles of employment and post-secondary education

29. Teaching Self-Care/Independent Living Skills

30. Breaking Tasks into Small Steps • Nectar Thickened Liquids Task: One packet of Simply Thick to every four ounces of liquid, shake vigorously Example: Start by shaking the drink and Simply Thick, move to adding Simply Thick, progress to measuring the four ounces of drink, eventually consider whether the child can order the Simply Thick supply

31. The New York State Institute for Health Transition Training www.HealthyTransitionsNY.org

32. The Healthcare Notebook as a Transition Tool

33. Healthcare includes Wellness • Encourage your child to embrace healthy habits – healthy diet, exercise, getting sleep • Set wellness goals and connect your child to community-based recreational and wellness activities • Educate them regarding adverse effects of smoking, drug abuse, high-risk sexual behaviors, etc. • Help your child understand how to use special mobility and accessibility equipment

34. Interagency Collaboration

35. Connecting the IEP and Health Issues Parents are the key to bridging the barriers between school and health providers

36. Parents: • Be involved in the transition assessment • Ask your physician for help • Share appropriate information and contacts between agencies working with your student • Attend CSE meetings, with your child • Ensure your child is actively participating or leading their IEP meetings and self- advocating appropriately • Bring important “outside” players to CSE meetings (MSCs, therapists, etc). You are the key to this connection!

37. Collaboration around Health requires all parties to: ● work together, sometimes through conflicting systems, to plan for greater teen independence • Maintain the focus on the child’s transition needs • Identify service gaps early

38. Healthcare Transition requires that everyone is always learning and reaching out to assure that a solid foundation of health underlies the transition plan. Health is the Foundation

39. The efforts are worth the results! • Research has shown that children who had healthcare transition plans have better access to health care services as they become adults. • Youth with good health and healthy behavior are better able to secure and retain jobs to develop their careers of choice. • Youth who have jobs and are engaged in their communities have better health outcomes.

40. Key Transition Points to Remember: • Transition means moving from the stage of “Entitlement to Eligibility”. • Parental involvement is key to successful transition to adulthood. • The transition process includes planning and building in our children the knowledge, skills and resilience needed to help them counter the challenges of adult life, this includes planning for health needs and teaching health-related skills.

41. Michele Juda Parent to Parent of NYS Family to Family Health Information Center V: 800-305-8817 e: f2fhealthtools@verizon.net Contact Information Nancy Hinkley Cornell University Employment & Disability Institute, ILR School V: 607-255-1109 e: nah36@cornell.edu