Healthcare Transition at 18

The following are common barriers to access:

• Students lack of knowledge and skills to access healthcare

• Limiting beliefs or unrealistic expectations

• Lack of goals or motivation

• Lack of relationships and relationship skills

• Ineffective communication

• Lack of psycho-social functioning/emotional assessments

• Lack of developmental maturity assessment

• Young adults' ability to pay for healthcare

• Lack of available adult-care practitioners with knowledge and experience

  in childhood-onset conditions that extend into adulthood

• Provider unwillingness to accept these patients into their practice

• Time barrier for adult-care providers

• Bench-marked standards for patient volume and reimbursement levels

  within practices do not address transition needs

• Increased cost of multidisciplinary services incorporated into clinics that do

  not use these services for other patients

• Steps involved in the healthcare transition algorithm are not part of

  regularly scheduled health maintenance visits

• A gap exists for those too poor to afford insurance programs

o Age out of Medicaid eligibility
o Age out of parents' insurance
o Patient Protection And Affordable Care Act access (PPACA)

• Lack of qualified adult-care providers

• Lack of clinics where the adult and pediatric providers attend and learn

  from each other

• Lack of continuing education for adult care providers, education in medical

  schools and residencies about pediatric conditions in adult care.

• Pediatricians and adult care physicians are poorly prepared to meet the

  complex medical and psycho-social needs of people with disabilities.

• Pediatric residency programs require only one month of adolescent medicine experience (ACGME).

• Adolescents are underrepresented in resident experience in providing longitudinal and continuous care for children with chronic conditions or disabilities and few providers have actually facilitated the transition process with their patients.

• There are no formal education program for pediatricians related to the transition to adult care for young people with disabilities. (Reiss and Gibson, 2006). This includes chronic care skill areas of:

  • Chronic pain

  • Nutrition

  • Developmental milestones

  • Psycho-social issues

  • Patient education

  • Assessment of caregiver needs

  • Strategies to maximize the patients’ potentials

  • Access to alternative information sources

  • Ability to assess equipment needs

  • Helping patients negotiate the health care system and coordinate health plan operations

o Identifying the need for a referral to experts
o Working with other health care professionals
o Coordinating of services
o Interdisciplinary teamwork
o Understanding, directing, and managing interactions with health plans so to minimize coverage denials and health care access delays

• Accurate and up to date medical knowledge and patient care evidence based - best practices related to this unique population with mobility, speech, cognitive, social cognition, learning disabilities and other types of impairments

• Understand and treat care needs of adults with childhood-onset conditions

• Interpersonal communication skills

• Use of inter-agency or education system communication and

  documentation to coordinate or justify services

• Chronic and longitudinal care management relevant to the care of children with disabilities.

Institute of Medicine (US) Committee on Disability in America; Field MJ, Jette AM, editors. Washington (DC): National Academies Press (US); 2007.

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AUTHORS

Marie Lewis is an author, consultant, and national speaker on best practices in education advocacy. She is a parent of 3 children and a Disability Case Manager, Board Certified Education Advocate, and Behavior Specialist Consultant. She has assisted in the development of thousands of IEPs nationally and consults on developing appropriately individualized IEPs that are outcome based vs legally sufficient. She brings a great depth of expertise, practical experience, and compassion to her work as well as expert insight, vision, and systemic thinking. She is passionate and funny and she always inspires and informs.

MJ Gore has an MEd in counseling and a degree in elementary education and natural sciences. She worked as a life-skills and learning support teacher She has been honored with the receipt of the Presidential Volunteer Service Award. She is the Director and on the faculty at the National Special Education Advocacy Institute. Her passion is social justice, especially in the area of education. She is a Board Certified Education Advocate who teaches professional advocates, educators, and clinicians the best practices in education advocacy.