ࡱ> s(   =D0www.de.state.az.us/azeipXDwww.hs.state.az.us/phs/ocshcn/crs/2www.eparent.com0 www.thearc.orgH 4www.raisingspecialkids.com@,www.de.state.az.us/dddN:www.hs.state.az.us/phs/ocschn8$www.de.state.az.us6"www.ppmedhome.com4) www.pbrookes.com/ 00DTimes New Romanv 0( 0DArialNew Romanv 0( 0W" DWingdingsRomanv 0( 0W0DverdanasRomanv 0( 0W"c ).nP  @n?" dd@  @@`` LR H!E     "$% .   4:! )+, #C4&(-7FG 0e0e     A@  A5% 8c8c     ?1 d0u0@Ty2 NP'p<'pA)BCD|E||S"@87I0ʚ;2Nʚ;g4KdKdv 0ppp@ <4!d!d` 0L<4dddd` 0L ? %f3Approach to Children with Special Health Care Needs44(Tressia Shaw, M.D.  Goals and Objectives8Provide an approach to office visits Define pediatrician s role Provide information on available services Provide information on family support services >: Definitionf Children with Special Health Care Needs are those who have or are at elevated risk for chronic physical, developmental, behavioral, or emotional conditions and who also require health related services of a type or amount not usually required by children. The Federal Maternal and Child Health Bureau, 1995&33/Children with Special Health Care Needs (CSHCN)Chronic physical, developmental, behavioral, or emotional conditions Require health and related services out of proportion to other children Need or get special therapies@<HBirth Defects  Estimated IncidencepHeart Defects 1/115 births Chromosomal syndromes 1/600 births Club foot 1/735 births Down syndrome 1/900 births &pq$fffA=Estimated Incidence cont.Cleft lip/palate 1/930 births Spina bifida 1/2,000 births Metabolic disorders 1/3,500 births PKU 1/12,000 births Source March of Dimes `qq$fffffffff ` Affect on Health Care SystemSickest 1% consume 30% of health care resources Sickest 5% consumes 50% of health care resources Prevention and care coordination is important! Case 13 month old male, former 24 week pre-term infant presents to your office for initial visit. Additional neonatal history includes 4 weeks on a vent, Grade II IVH, and NGT feeds during NICU stay. Currently he is on oxygen and taking nipple feeds well at home.Z  Case 1 cont.On exam, length and weight are in the 50% when corrected for gestation. He has poor tone and head control. He does not appear to follow past midline. The remainder of the examination is unremarkable.  Case 1 cont.Mom has several questions regarding her child s prognosis. She is also confused regarding specialists and services.  Small Group DiscussionsWhat is your role as the pediatrician in this case? How do you answer questions about prognosis? Do you have a systemic way to address the issues of this complex patient? What services are available and what referrals should be made?ZFBSmall Group Discussions What is your role as the pediatrician in this case? How do you answer questions about prognosis? Do you have a systemic way to address the issues of this complex patient? What services are available and what referrals should be made? 67ZZ6Role of the PediatricianRecognize the disability Communicate with the family Coordinate care in systematic manner Refer to appropriate services and specialists Prevention of secondary conditions GCSmall Group DiscussionWhat is your role as the pediatrician in this case? How do you answer questions about prognosis? Do you have a systemic way to address the issues of this complex patient? What services are available and what referrals should be made? (Z6-Communication with FamilyEmpower parents Assess their understanding of the situation Provide information in a simple and clear format Be honest and give range of possibilities Communication cont.Be upbeat, stress the positive when possible. Explain all medical terms Discuss concerns and reactions. Recognize caregiver s expertise about their child. Provide information on support services. Communication cont.Arrange follow-up. Have mutually agreed upon goals for treatment. Provide written information if appropriate. Give an active role in the treatment plan. Provide positive reinforcement, empathy, support. Stress child s strengths. HDSmall Group DiscussionWhat is your role as the pediatrician in this case? How do you answer questions about prognosis? Do you have a systemic way to address the issues of this complex patient? What services are available and what referrals should be made? (ZcJ@Systematic Approach Identify relationship of people present. Identify primary caregiver Explain the roles of any medical persons present Review pending issues from the last visit Systematic Approach cont.Gather interim history Address concerns for today Review medication list, problem list Address issues of school, IEP, therapies, equipment Clarify your role Encourage partnership  Forms to HelpLong Term Care WCC Therapy prescriptions Durable medical equipment prescriptions (all above developed by Phoenix Pediatrics) Emergency info form by AAP (website) BS,%S,'IESmall Group DiscussionWhat is your role as the pediatrician in this case? How do you answer questions about prognosis? Do you have a systemic way to address the issues of this complex patient? What services are available and what referrals should be made?  Z@ ReferralsAppropriate Specialists The alphabet soup& AZEIP  Arizona Early Intervention Program DDD  Division of Developmental Disabilities CRS  Children s Rehabilitation Services LTC  Long Term Care State Insurance&++*Arizona Early Intervention Program - AZEIPState program with network of services provided for patients with developmental delay or at risk. Age 0-36 months No fees requiredAZEIP - EligibilityReached <50% of developmental milestones for age Known diagnosis associated with delay: Chromosomal abnormality Metabolic disorder Hydrocephalus, neural tube defects IVH Cerebral palsy Failure to Thrive Periventricular leukomalacia Severe auditory or visual impairments .XZZX' AZIEP  ServicescInfant Massage Respite Play groups PT/OT/Speech Individual Family Service Plan (IFSP) Habilitation bAZEIP - ReferralPhone, mail, or in person By PCP, parent, or other caregiver www.de.state.az.us/azeip 480-820-3605 Evaluation begins after referral School system assumes services after age 3."=[!0=U,Division of Developmental Disabilities - DDDmState program providing services for patients with developmental delay. Any age Must manifest prior to age 18 DDD - EligibilitydAutism Cerebral Palsy Epilepsy Mental Retardation Condition must be likely to continue indefinitely DDD- Eligibility, cont.Diagnosis must result in substantial limitations in 3 or more of these areas: self-care receptive and expressive language learning mobility self-direction capacity for independent living economic self-sufficiency .NN!DDD - ServicesRespite Care Housekeeping Case management Long Term Care nursing Augmentive communication devices Funding of up to $3000 for equipment/modification bi-annually Home modifications PT/OT/speech TransportationA B>DDD - ReferralFamily completes application Pediatrician completes medical documentation Apply at DDD office  (602) 870-1721 www.de.state.az.us/ddd !0o"Case 2A 7 y/o female with cerebral palsy, mental retardation, g-tube, trach, and contractures presents to your office. Family recently moved to Arizona from the east coast. They are here to establish care. Mom has questions about the child s IEP. Z,@ #>Case 2  Small Group DiscussionHow do you approach the visit? How do you approach the physical exam? What are the appropriate referrals? What is an IEP? What obligations does the school have in providing services? JFSmall Group DiscussionHow do you approach the visit? How do you approach the physical exam? What are the appropriate referrals? What is an IEP? What obligations does the school have in providing services? $"Systematic ApproachqLong term care WCC for this child Use the systematic approach we just discussed! Communication skills still applyKGSmall Group DiscussionHow do you approach the visit? How do you approach the physical exam? What are the appropriate referrals? What is an IEP? What obligations does the school have in providing services? &'r:6 Physical Exam May need to ask caregiver about approaches that have worked in the past (especially if behavior issues Take patient out of wheelchair  this may require help Check pressure points for decubitus ulcers, skin breakdown Carefully move extremities with contractures , 8 ;7Physical Exam - Wheelchairs^Check for appropriate fit Check for signs of use Check position in the chair Check restraints <8 Physical ExamG/J tube sites Should be able to turn button Evaluate for erythema and skin breakdown Ask about leaking and how feeds are tolerated&uu; A=9 Physical ExamTracheostomy Evaluate size Evaluate for skin breakdown, erythema Discuss if parent has extra trach and knows how to replace it.& s s6 , LHSmall Group DiscussionHow do you approach the visit? How do you approach the physical exam? What are the appropriate referrals? What is an IEP? What obligations does the school have in providing services? &F$N'# Referrals_Appropriate medical specialists Social work Other allied health More alphabet soup CRS DDD LTC&T T ($PChildren s Rehabilitative Services - CRS Provide for medical treatment, rehabilitation, and related support services to medically and financially qualified individuals who have certain medical, disabling or potentially disabling conditions which have the potential for functional improvement.   )% CRS - cont.Provides multidisciplinary team approach Does NOT replace primary care pediatrician State program Medicaid patients required to see specialists through CRS*&CRS - EligibilityClub feet, dislocated hip, cleft palate, mal-united fractures, scoliosis Spina bifida Congenital GU and GI anomalies Many muscle and nerve disorders Epilepsy Congenital heart disease Rheumatic heart diseasertI }+'.CRS  Eligibility cont.Cerebral palsy Certain eye and ear conditions may be eligible Cystic fibrosis Burn scars which are causing functional limitations L>3,(.CRS  Eligibility cont.wPKU and other related metabolic disorders Sickle cell anemia Neurofibromatosis Hydrocephalus Rheumatoid arthritis xx) =(-).CRS  Eligibility cont.!Financial qualification Age 0-21.+CRS - Services}Diagnosis Surgery Hospitalization Medication Nutritional supplements and evaluation Wheelchair evaluations/wheelchair Walkers/*CRS - ReferralDoctors, nurses, parents or friends may refer Pediatric History and Referral Form and the CRS Financial Application Onlinewww.hs.state.az.us/phs/ocshcn/crs/ or Call 800-392-2222*.L"!0{MISmall Group DiscussionHow do you approach the visit? How do you approach the physical exam? What are the appropriate referrals? What is an IEP? What obligations does the school have in providing services? &jN0,&Individualized Education Program - IEPMandated by Individuals with Disabilities Act (IDEA) Schools must provide individualized education programs for those that qualify Education must take place in least restrictive environment possible1-"IEP  The processChild is identified  parent, teacher, physician, other Evaluation starts Eligibility is determined IEP meeting scheduled Team meets and plan is made Services are provided IEP is reviewed at least yearly Reevaluation at least every 3 yearsZ2.IEP - ContentsVCurrent performance Annual goals  short and long term Academic, behavior, and social issues all addressed Specific information about services provided  where, when, who 3/IEP - Contents@Time spent in participation in non-special education classes Measures of Progress Transition Issues  starting at age 14 Address barriers to achieving set goals402IEP  Pediatrician s RoleAsk parent about their child s IEP Encourage them seek revisions if they are unhappy with current IEP Support them in this process Encourage them to take another support person with them to IEP meetings Pediatrician can be involved in IEP meetings if necessary% Case 3A 17 y/o male with Down Syndrome comes in for routine well check He has mild mental retardation Performs activities of daily living independently The family is asking how long you will see this patient in your pediatric office &!>Case 3  Small Group DiscussionrWhat is your role in helping this adolescent transition to adulthood? How can you help make the transition easier?62Transition to AdulthoodMany children with special health care needs are living longer Transition a growing issue for this population Start thinking about transition early and discussing with the family/patient Transition starts in early childhood with expectations and planning!Z73 TransitionIdentify barriers Identify adult health care provider Provide a brief and complete health care summary to the patient and new provider Provide list of specialists, medications, equipment, and other services84 TransitionEstablish uninterrupted flow of care Discuss issues including living arrangements, further education, jobs Empower the youth to assume health care responsibility 51Preventive CareDisease Specific Important role of pediatrician Guidelines exist through AAP and other sources To be discussed in future lectures& C?Parent ResourcesNMANY websites that are disease specific MANY support groups and organizations 95Useful websites Exceptional Parent www.eparent.com Association for Retarded Citizens www.thearc.org Raising AZ Special Kids www.raisingspecialkids.com !0# !0GU !0oD@Useful WebsitesAZ Office of CHSCN www.hs.state.az.us/phs/ocschn AZ Department of Education www.de.state.az.us Southwest Institute for Families and Children with Special Needs www.swifamilies.org 8 B !01!0N`!0Take Home PointsThe pediatrician plays an important role in the management of children with special health care needs. Good communication and a systematic approach to office visits is a skill that can be developed. It is important to recognize children who qualify for services and make referrals. ZNJ ReferencesAAP Policy Statement. The Medical Home. Pediatrics, 110(1), 184-186. Girgus A., Sanson-Fisher, R.W. (1995). Breaking Bad News: Consensus Guidelines for Medical Practitioners. Journal of Clinical Oncology, 13, 2449-56. Nickel, Robert E. & Desch, Larry W. (2000) The Physicians Guide to Caring for Children with Disabilities and Chronic Conditions. Paul H. Brookes Publishing Company. (www.pbrookes.com) Northouse, P.G., & Northouse, L.L. (1992). Health communication strategies for health professionals, 2nd Ed. Norwalk, CT: Appleton & Lange, pp. 73-117. Pantell, R. H., Stewart, T.J., Dias, J.K., Wells, P., & Ross, A.W. (1982). Physician Communication with Children and Parents. Pediatrics, 70(3), 396-402. ZZZ*""t"";"T"e"8""*"""G  {{)!0PL ReferencesRoter, D.L., Stewart, M., Putnam, S.M., Lipkin, M., Stiles, W., & Inui, T.S. (1997). Communication Patterns of Primary Care Physicians. JAMA, 277(4), 350-356. Wilson, Golder and Cooley, Carl. Preventive Management of Children with Congenital Anomalies and Syndromes 2000 Don t forget all the websites included in this lecture! dI" " "q:"6"xEASpecial Thanks to }Dr. David Hirsch and Dr. Kevin Berger of Phoenix Pediatrics Southwest Institute for Families and Children with Special Needs ! ` .T3f` T3f3f` 999MMM` lff3f3޲` eoHff33Ҷ` ff!>?" dd@,?nPd@  d " @ ` n?" dd@   @@``PR(   @ ` `Hp>> LD(  T   "T  C# Z  BCEF @` o   BpC=E$F =pp @  ` 5   BpC=EFh=pp @ `;    BpCrE0F" 5EhrrpEp5HP,5@   ` ~   BpC=E$F h==pp* @  `= c    BpCE0F" `Xpp@   `=     BxCjE<F&-=0j==`=8jx=x- -h----@    `: u    BpC=E$F =pp @  `     BpC=EFh=pp @ ` A     BpCrE0F" 5EhrrpEp5HP,5@   `   BpC=E$F h==pp* @  `     BpCE0F" `Xpp@   `     BxCjE<F&-=0j==`=8jx=x- -h----@    `    BpC=E$F =pp @  `R    BpC=EFh=pp @ `    BpCrE0F" 5EhrrpEp5HP,5@   `   B#CqEFp#q#'p @ `]   BpCE0F" `Xpp@   `_   BxCjE<F&-=0j==`=8jx=x- -h----@    `[v B  FZ0e0e  ?BCEFvvvd @5%8c8c     ?1d0u0@Ty2 NP'p<'p@A)BCD|E?||] @ `v B  FZ0e0e  ?BCEFvvv @5%8c8c     ?1d0u0@Ty2 NP'p<'p@A)BCD|E?||k @ `  s *8 "   T Click to edit Master title style! !  c $ "  RClick to edit Master text styles Second level Third level Fourth level Fifth level!     S  c $ "k  \* 2  c $s "`   ^*(2  c $s "`@ s ^*(2Z  B޽h))? ? T3f3f Dad`s Tie  @A(  T   "T  C#   BCEF @` o   BpC=E$F =pp @  ` 5   BpC=EFh=pp @ `;    BpCrE0F" 5EhrrpEp5HP,5@   ` ~   BpC=E$F h==pp* @  `= c    BpCE0F" `Xpp@   `=     BxCjE<F&-=0j==`=8jx=x- -h----@    `: u    BpC=E$F =pp @  `     BpC=EFh=pp @ ` A     BpCrE0F" 5EhrrpEp5HP,5@   `   BpC=E$F h==pp* @  `     BpCE0F" `Xpp@   `     BxCjE<F&-=0j==`=8jx=x- -h----@    `    BpC=E$F =pp @  `R    BpC=EFh=pp @ `    BpCrE0F" 5EhrrpEp5HP,5@   `   B#CqEFp#q#'p @ `]   BpCE0F" `Xpp@   `_   BxCjE<F&-=0j==`=8jx=x- -h----@    `[X B  (0e0e  ?BCEFvvvd @5%8c8c     ?1d0u0@Ty2 NP'p<'p@A)BCD|E?||] @ `@ B  0e0e  ?BCEFvvv @5%8c8c     ?1d0u0@Ty2 NP'p<'p@A)BCD|E?||k @ `  0u "} u T Click to edit Master title style! !  c $pu "   u W#Click to edit Master subtitle style$ $  c $(x "` u `* 2  c $ x "`  x b*(2  c $T x "`@ x b*(2Z  B޽h))? ? T3f3f 0$(  r  S xx x r  S 4x   x H  0޽h ? T3f3f  P,$(  ,r , S x   x r , S x x H , 0޽h ? T3f3f  `$(  r  S x   x r  S x x H  0޽h ? T3f3f  p$(  r  S Dx   x r  S x x H  0޽h ? T3f3f  $(  r  S lx   x r  S (x x H  0޽h ? T3f3f  $(  r  S *6(%%$ $``m--&&Zo-3f->$m]m[j[g[^\R]E]>\5[#Z[[ ] #0>JU]cgiklm--&&Wn-T-6$llllllzlnlelal^l\l[l]_^T^I^@]0[$ZXY [l--&&n--$ lldYL>/l--&&Fqn-3f-4$jlKlJhIcHWGHG8G(HI JKjm oo o,o3n<mNlWk_kfjl--&&n--.$llhcWH8( ,<HS\l--&&'n-3f-8$%l$l"lllllllllllbYPJD=5$ %%l--&&Nn-->$Jl#l!i f ]"Q#D#="4 "  ! #JL MM"M/L=KIJTJ\JbJfJhJjJkJl--&& o--6$mmmmmmmmmmmmm`UJA1% m--&&Bo-3f-$ @mmeZM?0 @@m--&&{n--4$llh~c}W|H|8|(}~   ,3<NW_fl--&&2n--$ 0ll0/..,-<.H.S/\0l--&&]n-3f-8$ZlYlWlTlQlGl<l1l'l$l!lll"b$Y%P%J%D%=$5"$ [Zl--&&Tn-3f->$lXlViUfU]WQXDX=W4U"UUV X "/=IT\bfhjkl--&&&0&--&&- $  - $  - $- $((vvv- $((00&&&- &>$#&(_,2./.-+R)8(&%$#"!d ?h 5!"#&&-&& &&-&&>$#&(_,2./.-+R)8(&%$#"!d ?h 5!"#&&- $  - $  - $- $((vvv- $((00&- --&&&Pr&--&&- $PPZZ- $ZZdd- $ddnn- $nnrr&&&- &D$ UUTTnTTU7UUVVWXmX!Z[\?\\\\\[|ZaYHX2VTRPppU&&-&& &&-&&D$ UUTTnTTU7UUVVWXmX!Z[\?\\\\\[|ZaYHX2VTRPppU&&- $PPZZ- $ZZdd- $ddnn- $nnrr&- --&&&&yC&w@K P؟ww wf^- &w& --{{-- @Times New Roman؟ww wf^- 3f.:2 "Approach to Children with Special %  # &  . 3f.!2 Health Care Needs% # &.--Q{-- 3f@"ArialK ؟ww wf^- .2 Tressia ! . .2 A Shaw, M.D.$&+&.--"System^f^ !D-&TNPP &՜.+,D՜.+,    6On-screen Shown-s;|F KTimes New RomanArial Wingdingsverdana Dad`s Tie4Approach to Children with Special Health Care NeedsGoals and Objectives Definition0Children with Special Health Care Needs (CSHCN)%Birth Defects Estimated IncidenceEstimated Incidence cont.Affect on Health Care SystemCase 1 Case 1 cont. Case 1 cont.Small Group DiscussionsSmall Group DiscussionsRole of the PediatricianSmall Group DiscussionCommunication with FamilyCommunication cont.Communication cont.Small Group DiscussionSystematic Approach Systematic Approach cont.Forms to HelpSmall Group Discussion Referrals+Arizona Early Intervention Program - AZEIPAZEIP - EligibilityAZIEP ServicesAZEIP - Referral-Division of Developmental Disabilities - DDDDDD - EligibilityDDD- Eligibility, cont.DDD - ServicesDDD - ReferralCase 2 Case 2 Small Group DiscussionSmall Group DiscussionSystematic ApproachSmall Group DiscussionPhysical ExamPhysical Exam - WheelchairsPhysical ExamPhysical ExamSmall Group Discussion Referrals)Childrens Rehabilitative Services - CRS CRS - cont.CRS - EligibilityCRS Eligibility cont.CRS Eligibility cont.CRS Eligibility cont.CRS - ServicesCRS - ReferralSmall Group Discussion'Individualized Education Program - IEPIEP The processIEP - ContentsIEP - ContentsIEP Pediatricians RoleCase 3 Case 3 Small Group DiscussionTransition to Adulthood Transition TransitionPreventive CareParent ResourcesUseful websites Useful WebsitesTake Home Points References ReferencesSpecial Thanks to  Fonts UsedDesign Template Slide TitlesF 8@ _PID_HLINKSAp< http://www.de.state.az.us/azeip*http://www.hs.state.az.us/phs/ocshcn/crs/http://www.eparent.com/http://www.thearc.org/#http://www.raisingspecialkids.com/http://www.de.state.az.us/ddd%http://www.hs.state.az.us/phs/ocschnhttp://www.de.state.az.us/http://www.ppmedhome.com/http://www.pbrookes.com/%_; xCarol BenwellCarol Benwell  !"#$%&'()*+,-./0123456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~Root EntrydO)Current UserSummaryInformation( PowerPoint Document(;DocumentSummaryInformation8