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It Is Not A Hospital Discharge… It Is A Community Admission

It Is Not A Hospital Discharge… It Is A Community Admission. It Is More Than Health Care ... Fitting the pieces together. Socia l. Literature. $. Dev/Educ. Technol. OVERVIEW. Medical Home for CWD - a little different Working with the educational system

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It Is Not A Hospital Discharge… It Is A Community Admission

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  1. It Is Not A Hospital Discharge… It Is A Community Admission

  2. It Is More Than Health Care...Fitting the pieces together Social Literature $ Dev/Educ Technol

  3. OVERVIEW • Medical Home for CWD - a little different • Working with the educational system • IFSP and early intervention programs • IEP and the education system • ITP and transition to adulthood • Accessing community resources • parent educ, advocacy, support • community agencies • respite and recreation • financial • Educating the PCP

  4. Special KidsSpecial Skills ???(not really)

  5. But, a few more.... • assessment tools • team members • community supports • minutes • dollars

  6. Medical Home • traditional pediatric care • emphasizes a mutual relationship • broad health care plan • medical (traditional and non-traditional) • developmental • behavioral • educational • social • long range (infancy to adulthood)

  7. Components of any Medical Home (MH) • accessible • continuous (age & spectrum of care) • compassionate • comprehensive • coordinated • culturally competent • family-centered

  8. Child/Family, includes family support resources Pediatrician and other medical providers School, includes early intervention Community-Based Team Insurance providers/financial resources Religion /spiritual supports Social Services, includes mental health

  9. CWD: Additional Components Broader array of assessment tools Awareness of community resources Team Skills vs Care Coordination Skills: • medical and surgical subspecialists • social workers and home health nurses • therapists, orthotists, prosthetists, DME vendors • intervention specialists, teachers, ed diagnos • counselors, psychol, behavior mgmt specialists Advocacy Skills: • authorizations for medical care • authorizations for school related services • financial assistance programs • public policy issues

  10. The “Standard” Assessment • History • Chief complaint • History of present illness • Pregnancy and neonatal history • Family history • Developmental and school history • Review of systems • Physical Exam • Screenings • hearing and vision • growth and development • dental • Hct, etc

  11. Beyond the “Standard” Assessment • Developmental • Socio-emotional • Functional • Educational • Transitional

  12. Developmental • AAP emphasis on the developing brain • Developmental monitoring • Screening • Surveillance • Assessment • Goal: Early referral to an early intervention program (EIP)

  13. Questionnaires PDQ AAP EIP Customized Observation Denver - II ELMS CAT/CLAMS BINS Dev Profile - II Screening Tools

  14. Surveillance • The art of being suspicious • Parental concerns are valid!!! • Continuous monitoring at every visit • Pre-printed milestone checklists • Developmental milestone tables (texts/articles) • Use of standardized tools to validate suspicions • Developmental age for eachstream developmental age chronological age > 85% is normal 70 - 85% is suspect < 70 %is abnormal

  15. EXAMPLES 10 mos old w/ GM skills solid to 8 mos 8 mos = 80% 10 mos 10 mos old w/ GM skills solid to 6 mos 6 mos = 60% 10 mos

  16. Developmental Assessment • Targets children at risk • Time consuming • Requires training and expertise • Often performed by a team • Assesses quality as well as skill level • Addresses etiology (neuro, genet, etc)

  17. Functional Assessment • Follows developmental assessments • Assesses the child’s ability to perform skills independently w/wo devices • Mobility • Communication • Self Help: feeding, dressing, hygiene • Standardized tools • Vineland • WeeFIM • PEDI • AAMR

  18. Early Intervention Programs • Available to infants from the time of diagnosis until age 3 years • Known disability • Developmental delay • At risk for disability or delay • Promote development & family function • Mandated by the IDEA entitlement • Large menu of services • parent education, empowerment, advocacy • habilitation services (OT, PT, ST, behav mgmt) • assistive technology • respite, transportation, etc

  19. Evolution of IEP’s • Privately funded . . . . Publicly funded • Open referral . . . . . . Geographic assign • Multidisciplinary . . . . Transdisciplinary • Center-based . . . . . . . Home based or DCC • Child centered . . . . . . Family centered • IDP. . . . . . . . . . . . . . . . .IFSP

  20. EIP:Pediatrician’s Role • Referral - early, don’t wait for DX - “48 Hour Rule” • Medical assessment • etiology vs co-existing disorders • subspecialty consultations • Care Coordination • Development of the IFSP • Authorizations for treatment • Education of providers re: diagnosis • Communication and monitoring

  21. Transition to School • Occurs at age three years • Individual Education Plan (IEP) • Based on an educational assessment • Physician advocacy may be necessary

  22. Educational Supports • Re-authorization of the IDEA (1997) • Entitlement: DX 21 yrs • Special education techniques & staff • Related services (PT, OT, ST, RN) • Assistive technology • Extended year services • Non-educational services • Transitional services

  23. Components of an IEP • Current level of functioning and DX • Goals and objectives for school year • Related services needed to goals • special education • therapy (PT, OT, ST) and nursing • assistive technology devices • Frequency, duration and provider of related services

  24. Components of an IEP • Placement (LRE philosophy) • Supports needed for LRE placement • Transitional services - if > 14 years old • Extra curricular activities • Respite (“non-education funds”) • Extended year services • Recreation • Monitoring of progress • Tools • Frequency • Signatures

  25. Physician’s Role in the IEP • Authorize for svc via medical categories: • Other Health Impaired (ADHD, CHI, SZ) • Orthopedically Handicapped • Vision and/or Hearing Impaired • MR diagnoses (Down, FXS, William's) • Advocate for psychometric testing • Evaluate for co-existing health concerns…..authorize medical Rx • Coordination of services • Communication and educ (med<-- >EIP) • Advocate for related svc & assist technol

  26. Medically-based Therapy • health care service requiring physician Rx • requires insurance/HMO pre-authorization • addresses periodic life issues • new equipment (braces, crutches, W/C) • post surgical • transition to oral feeding Educational-based Therapy • provided at no cost (gov subsidized) • usually consultative • addresses devel and educ milestones • driven by the IFSP services at home • driven by the IEP services at school

  27. Assistive Technology • Purpose:to prevent (or decrease) deformity to increase function • Timing is critical and depends on DD • Low tech vs. high tech devices • Positioning • Mobility • ADL (activities of daily living) • Communication • Educational • Recreational • Service animals

  28. Assistive TechnologyClearing Houses • Abledata • RESNA • Alliance for Tech Access • TRACE

  29. Computer Technology • Apple: 1-800-600-7808 • IBM: CAT (Center for Adapted Tech) Easter Seals in Colorado Phone: 1-303-233-1666 Fax: 1-303-233-1028 • RJ Cooper Software 24843 Del Prado Dana Point CA 92629

  30. Service Dog Information • Houston: (281) 497-2505 • Austin: (512)891-9090 • Website: www.THSD.com

  31. Transition School Work Home Community Pediatric Adult Care Centered Care

  32. School Work Background: PACER Center • ADA (1990) • Rehab Act (1992):“supportive employment” • IDEA (1990 and reauthorized in 1997) Individualized Transition Plan (ITP) • supplements or replaces the IEP at age 16 • student becomes a member of the team • identify vocational goals • addresses training (OJT and volunteer) • community agencies and services • rehab counselor is important team member • evaluation of progress

  33. Home Community Training (informal &/or formal ILS classes) • early responsibility for self-care, hygiene • behavior, social skills, and leisure activities • homemaking (cooking, cleaning, laundry) • financial and budgeting • public transportation or adaptive vehicles • interview, hire, supervise & fire attendants Settings: LRE • institutional • group homes • apartments • own home with/without spouse

  34. Transition in Health Care Preparation • Encourage responsibility for own care • Should be planned, not crisis initiated • Identification of new adult provider(s) • Transition interview • Self-directed portable records • Teaching physical exam Process • Evaluate readiness* • Record sharing and open communication • Overlap in care • Then let go………. but do not abandon

  35. Transition in Health Care Barriers • lack of readiness (teen, parent, doctors) • strong emotional attachments • reluctant adult care providers • few multidisciplinary options • lack of funding

  36. Guardianship: The Alternative to Transition • Formal determination is now required at 18 years of age • Often triggered by surgery or a hospitalization • Requires legal action, not by default • petition must be filed • court hearing • Costs between $500 - $2000

  37. Guardianship • Is different from conservatorship of the estate • Responsible for all decisions except: • psychosurgery • electric shock therapy • sterilization • experimental treatments • If teen is borderline alternatives • Kinship is not the conclusive factor in determining the guardian

  38. OVERVIEW • Medical Home for CWD • Working with the educational system • IFSP and early intervention programs • IEP and the education system • ITP and transition to adulthood • Accessing community resources • parent educ, advocacy, support • community agencies • respite and recreation • financial • Educating the PCP

  39. Community Supports • In the family’s eyes, these are often more critical than medical services when caring for CWD • Lack of physician knowledge and expertise often the source of parental discontent • Surveys reveal physician-parent mismatch

  40. Levels of Support • Natural • family • neighbors • friends • Informal • clinic and IEP contacts • parent support groups • community agencies • Literature & Internet • Formal Entitlements • education (IEP and schools) • Medicaid, SSI

  41. Formal Informal Natural

  42. Informal Supports • Parent Literature and Web sites • Parent Support Organizations • Peer Support Organizations • Community Agencies • Child Care • Respite and Respite Care Waivers • Recreation • Organized Sports

  43. Parent Literature • Exceptional Parent Magazine • Monthly publication (articles, advertisments) • Special inserts (spasticity, mitochondrial DO) • Family Library • Annual Resource Guide • Web site • Search and Respond • Brookes Publishing • Woodbine House • Medic Publishing • AACPDM List

  44. CWD Web Sites for Families • Ctr of Children with CI & D • Exceptional Parent Magazine • Family Voices • MUMS (parent support) • Natl Ctr for Youth with Disabilities • National Parent Network on Disabilities • NICHCY • Our Kids

  45. OVERVIEW • Medical Home for CWD • Working with the educational system • IFSP and early intervention programs • IEP and the education system • ITP and transition to adulthood • Accessing community resources • parent educ, advocacy, support • community agencies • respite and recreation • financial • Educating the PCP

  46. CWD Web Sites for Families • Ctr of Children with CI & D • Exceptional Parent Magazine • Family Voices • MUMS (parent support) • Natl Ctr for Youth with Disabilities • National Parent Network on Disabilities • NICHCY • Our Kids

  47. Parent Support Groups • Disability-Specific Agencies • National: literature, research, referral directories, conferences • Local: parent-to-parent support, meetings, literature • Parent Training and Information Ctr • Disability rights • Advocacy training • Family Voices - political advocacy • SNAP (Special Needs Adocacy for Parents) • Internet Disability Chat Rooms

  48. Peer-Support Groups • Friends Health Connection • Winners on Wheels • NICHCY • Disability-Specific Chat Rooms • Sib-Shops (206-368-4911)

  49. Informal Supports • Parent Literature • Parent Support Organizations • Peer Support Organizations • Community Agencies • Child Care • Respite and Respite Care Waivers • Recreation • Organized Sports

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