Notes

Outline

Transitioning Children and Youth to Adulthood American Academy of Pediatrics Family Voices Maternal and Child Health Bureau National Association of Children’s Hospitals and Related Institutions and Shriners Hospitals for Children

Learning Objectives: By the end of this component, participants will be able to: Describe barriers that often interfere with a young person’s successful transition to work, independence, and adult health care. Describe strategies and promising practices that can assist young people, their families, and providers overcome these barriers. Assist youth to obtain the services and resources needed to successfully transition from pediatric to adult health care and school to work Support self-determination of youth with disabilities in thoughts, words, deeds,  and in higher expectations

Hopes And Dreams Of All Youth In Transition: Raising Expectations Being valued as a human being and treated with dignity Inclusive opportunities for social experiences, dating, community involvement, recreation, and worship Education and/or job training Increased freedom and independence Meaningful work for reasonable pay

Data: Harsh Realities That Beg For Personal Action Persons with Disabilities (PWD) 3 x more likely to live in a household with an income <15,000 (SSI is often a life in poverty) 32% PWD ages of 18-65 work vs 81% of general population 65% PWD drive vs 90% of general population

Think Of Two Youths In Your Practice Youth # 1 Emotes self-determination and Is proactive in wellness/well-being Youth # 2 Has difficulty in moving forward in all areas of life and Believes there is little he/she can do to influence health or other desire outcomes

Overview of Transitions Component Early preparation and letting go Medical/ health transition including skill building and funding issues School to work including education jobs, funding, community support. Self determination Promising practices

Transition Begins In Childhood Career planning begins in utero Focus on health promotion and normal growth and development Prevent secondary disabilities Promote self-care and independence Promote socialization and peer activities Encourage early volunteer and later work experiences Refer to developmentally supportive services early intervention, early start, special education or Section 504

Prepare For The Coming Of Adolescence  And “Letting Go” Transition is more than a process. It takes all of us to make the journey as smooth as possible. Medical Provider Facilitating the process by setting the example at different developmental stages. Family Changing care decision-making role to promote independence and self-determination as developmentally appropriate. Child/Youth Assuming roles and responsibilities for preparing for a healthy/productive adulthood.

Prepare For The Coming Of Adolescence  And “Letting Go” (Cont.) Talk with the child/youth as well as their family. Think about the future in 5 year segments. Teach and re-teach about the health condition based on changing cognitive development. Ask the opinion of your young patients…get their ideas… involve in decision making (assent to consent) Ask children and pre-teens what they plan to do when they "grow up" and support their plan. Ask how they can help their families and communities make their dreams become reality.

Medical Health Transition: Support During Adolescence Focus on typical adolescent issues first Encourage health promotion and injury prevention activities Regularly do an adolescent risk assessment

Address Common Concerns Of Adolescence Am I like my friends? Do I fit in? Am I attractive? Can I be sexy? How Can I be safe?

Communicate Effectively With Adolescents Means Talking and LISTENING Be confident and act comfortable Begin with open-ended questions and follow with explicit questions Move from less sensitive to more sensitive question Pay attention to inconsistencies (yours and theirs) Show that you care (validate their feelings) Be available. How can they reach you when they have a question? (ie, Phone or e-mail)

Adult Health Care Realities Providers may have less experience with “congenital” conditions Adult health care may be less interdisciplinary and more fragmented Overall there seem to be fewer resources for adults than children Adult health care providers have higher expectations for learning, personal choice, self-care, and independent follow up.

Prepare Youth To: Become more informed of their health issues and proactive ways to maintain and sustain wellness. Take charge and be responsible for their own health Handle more choices with less direction Become their own advocate Become their own care coordinator Find and use resources

Prepare for the Realities of Health Care Funding This age group is more vulnerable due to age, life opportunities and complex needs Aging out of health care plans and services (private insurance, EPSTD, state Title V) Temporary jobs often do not include insurance or premiums are too high compared to the starting pay Desire to work and be independent may jeopardize dependent status to remain on health plan. Increased salary may affect SSI payments (lower or eliminate which then may cause to lose Medicaid)

Insurance Options: Private Insurance Criteria for Maintaining: Birthday rule Age cap Permanent dependent status

Private Insurance Strategies COBRA (Consolidate Omnibus Budget Reconciliation Act of 1986) Continues health plan after employment is terminated. HIPPA (Health Insurance Portability and Accountability Act of 1996) Allows eligibility coverage to be portable from a previous plan to a new plan

Private Insurance Savvy Review member explanation of benefits packages carefully Evaluate benefits Ask office billing clerks which plans cover needed services. Ask other families about covered services and out-of-pocket expenses. Provide adequate documentation to justify specialized services and customized DMEs. More than a script is needed these days. Brief descriptions, test results, preventative cost savings and pictures are helpful. Understand appeals process and assist family in providing additional documentation. Key test- The Benefit Inquiry

How to Stay Funded after Age 18? Medicaid through SSI must be re-determined at age 18 30% lose benefits Medicaid through special home and community-based waivers Medicare with SSDI from parents or own work experience

Special Help for Youth in Transition SSI Work Incentives 1619A – working, decreases SSI benefits, maintain Medicaid 1619B – working, loss of SSI Benefits, maintain Medicaid Section 4733 of BBA- buy-in Medicaid IWRE (Individual Work Related Expenses) PASS (Plan for Achieving Self-Support) Ticket to Work /Work Incentives Improvement Act (TWWIIA) Buy-in Medicaid for Adults If working and lose SSI Can buy Medicaid

Transition to Adult Health Care Funding & Coordination More than a referral  Requires: Coordination of care Referral to adult services Skill and determination to sort out funding issues A focus on continuum of quality care

School to Work: Support During Adolescence Work skills start with having responsibilities/tasks in the family Consistent attendance at school which will later lead to a pattern of consistent attendance on the job Volunteer opportunities in the community

School to Work: Support During Adolescence (Cont’d) Identifying a passion and skills for future job Finding a mentor to guide the way Getting the first job and taking the leap to get the next job Key - Stay well to be part of the action

Steps to Independence Personal Identification: License or State ID Transportation: Scheduling or driving Residence: Solo or coordinating/paying for support Personal attendant services; hiring, funding, firing Recreation and Leisure Companionship Financial Management and Supports Legal Issues (assent to consent)

Transition Laws, Safeguards, and Opportunities ADA IDEA for special education Section 504 of the Rehabilitation Act for students in regular education/inclusive settings Vocational Rehabilitation Services

IEP (IDEA) versus 504 Plan (ADA) Transition Plan in IEP by age 14; Services by age 16  (Making the most by being ready before age 14) Section 504: Civil Rights for People with Disabilities Bill that ensures access to same programs and services available to students who do not have disabilities (e.g., physical access, modification for testing or due to health condition.)

Vocational Rehabilitation Meet eligibility criteria: disability, order of selection Need support to prepare or pursue employment SSI childhood recipients are referred by SSA to VR at age 16 VR counselors in larger high schools Seasons for asking for financial support (fiscal Year and spend down times)

Issues in Transition to Post-Secondary Education Disabled Student Services Student Rights and Responsibilities Meets qualifications for disability based on ADA definition Must request reasonable accommodation 504 and the ADA ensure ACCESS; not SUCCESS Student must know rights and responsibilities for themselves and for the institution

Post-Secondary Education 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 (one plan or a patch of plans). Modifications: Work Load, Medical Care, and Proactive Wellness.

Self-determination Founded on Four Principles: Freedom Authority Support Responsibility

Self Determination:  The Roles Individuals with disabilities Trusted others Independent brokers

Promising Practices Start early and promote resilience and self-determination in families and their children/youth. Create and support hope and higher expectations Focus on strengths, capacities and opportunities rather than limitations or deficits. Develop  partnerships with families and children/young people and community resources. Support a vision of a future which can include work and life in an inclusive community. Support ideas for residential and financial independence and personal life choices. Plan comprehensively.

Learning Objectives: By the end of this component, participants will be able to:  Describe barriers that often interfere with a young   person’s successful transition to work, independence,   and adult health care.  Describe strategies and promising practices that can   assist young people, their families, and providers   overcome these barriers.  Assist youth to obtain the services and resources   needed to successfully transition from pediatric to   adult health care and school to work.  Support self-determination of youth with disabilities    in thoughts, words, deeds,  and in higher    expectations.