1 The Primary Care PerspectiveJane Turner, MD, FAAP

2 Learning Objectives Appreciate the primary care perspective regarding healthcare and behavioral issues in children/youth with epilepsy and other CYSHCN Describe Children and Youth with Special Health Care Needs (CYSHCN) Describe Children’s Special Health Care Services beneficiaries Describe Children with Medical Complexity

3 Learning Objectives Locate community and family resources to assist with CYE and other CYSHCN Recognize behavioral health needs of children and youth Identify YOUR ROLE in the care of CYSHCN, CSHCS and CMC Identify YOUR ROLE in the care of children/youth with social/emotional challenges

4 Primary care clinic: March 137:45 J D 2 m WCC 7:45 RN 12 y/o ADHD 8:00 FL 4 d/o newborn 8:15 MM 15 y/o ED f/u 8:30 DW 6 m WCC, seizure 8:45 JT 6 y cough 9:00 GG 4 y/o fever 9:15 EG 24 m WCC, TS 9:30 JJ 18 m throwing up 9:45 MS 17 y trouble breathing 10:00 RA 11 y behaviors 10:15 ES 7 y WCC ASD 10:30 MM 4 y ear pain 10:45 BP 11 y WCC 11:00 SM 14 y rash 11:15 CR 4 m WCC f/u hosp for colic

5 Children and Youth with Special Health Care NeedsCYSHCN are “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally”

6 Prevalence Profile: 2011/12 NSCH & 2009/10 NS-CSHCN Source: 2011-12 NSCH Source: 2009-10 NS-CSHCN

7 Common conditions in CYSHCNADHD % Asthma 30% Learning Disabilities 27% Dev Delay 15% ASD 8% Bone, joint, muscle 8% Epilepsy 3% 41% experience two or more conditions. According to the 2011/12 National Survey of Children with Special Health Care Needs:

8 Children’s Special Health Care ServicesCSHCS is an important component of Michigan’s Title V program (Maternal Child Health) that addresses the medical needs of children and youth with special health care needs. The mission of the program is spelled out in Michigan’s public health code.

9 Criteria for Medical EligibilityDiagnosis Severity of Condition Chronicity of Condition Need for Treatment by a Physician Specialist (pediatric subspecialist)

10 Diagnosis The individual must have a CSHCS qualifying diagnosis where his activity is or may become so restricted by disease or deformity as to reduce his normal capacity for education and self-support. Psychiatric, emotional and behavioral disorders, attention deficit disorder, developmental delay, mental retardation, autism, or other mental health diagnoses are not covered by the CSHCS Program

11 Sample CSHCS diagnosesCancer Cerebral palsy Cleft lip/palate Liver disease Club foot Hypospadius Spina bifida Paralysis Hemophilia Cystic fibrosis Hearing loss Insulin-dependent diabetes Muscular dystrophy Certain heart conditions Epilepsy Kidney disease Sickle cell anemia Certain vision problems

12 Severity The severity criteria are met when it is determined by the MDCH medical consultant that specialty medical care is needed to prevent, delay, or significantly reduce the risk of activity becoming so restricted by disease or deformity as to reduce the individual’s normal capacity for education and self-support.

13 Need for Treatment by a Physician SpecialistThe condition must require the services of a medical and/or surgical subspecialist at least annually, as opposed to being managed exclusively by a primary care physician.

14 Chronicity A condition is considered to be chronic when it is determined to require specialty medical care for not less than 12 months.

15 Children with Medical ComplexityMultiple significant chronic health problems that affect multiple organ systems Child/youth experiences functional limitations Health care costs are high Medical technology is often needed Approximately 1% of children account for up to one-third of health care costs

16 Children with Medical ComplexityEvidence suggests that CMC have the highest risk for adverse medical, developmental, psychosocial and family outcomes. There is no one best way to identify CMC High utilization Multiple subspecialty providers Functional limitations Social and psychological and family complexities

17 Children with Medical ComplexityChildren with medical complexity see a median of 13 outpatient physicians from a median of 6 distinct medical specialties (Cohen 2012). 13% of patients use 47% of hospital services!

18 Let’s take a look at my patients and see who has typical needs, who has special health care needs, who is eligible for CSHCS and who has medical complexity. As we go through the list, think about your role, if any, in providing care for this child/youth and family.

19 7:45 Johnny D 2 month old for WCCMother’s score on depression screen = 13 Father is incarcerated Mother describes Johnny as “just like his Dad – cranky and demanding”

20 7:45 Robbie N 12 y/o ADHD Very thin but growingStimulant meds help with focus Moody, especially after weekends with Dad In and out of counseling Lives with Mom, grandmother helps Occasional weekends with Dad and his girlfriend

21 8:00 Felicity N 4 d healthy newbornWeight down 7% from birth weight Breast feeding

22 8:15 Marisa 15 y f/u ED visit for headachesHx syncope Hx respiratory distress Hx of PICU stay with dx “pseudoseizures” Seen at Sparrow, DeVos, U of M MRI, EKG, Holter monitor – all reassuring

23 8:30 Denzel W 6 m WCC Hospitalized at 2 weeks for seizure On KeppraEvaluated for possible child abuse Found to have extra fluid around the brain On Keppra Has small heart lesion

24 8:45 Jenny 6 y cough NO SHOW! Time to take a breath…… and return a phone call……

25 9:00 Greg 4 y fever Temp to 102 for two days Runny nose and coughNo appetite but drinking ok Past medical history unremarkable

26 9:15 Myles 24 m WCC Myelodysplasia (spina bifida)Care has been fragmented Mother moves often Father incarcerated Mother has problems with substance abuse Currently in foster care – working on reunification

27 9:30 Jack 18 m throwing up Generally healthy childLast WCC at 13 months

28 9:45 Mark 17 y/o trouble breathingEpilepsy – Lennox-Gastaut syndrome Cerebral Palsy G-tube Chronic and recurrent respiratory problems Fever and cough – working hard to breathe today Oxygen sats low overnight

29 10:00 Ralph 11 y behaviors Suspended from school for fightingGrades have dropped Dad is incarcerated

30 10:15 Eric 7 y WCC Autism Spectrum DisorderADHD – stimulant medicine helps Services in the school Mother has not pursued evaluation by CMH for ABA

31 10:30 Molly 4 y ear pain Congestion for 3 daysWoke up in the night with ear pain and fever

32 10:45 Brianne 11 y WCC No concerns No psychosocial risksHealthy preteen Father has concerns about HPV vaccine

33 11:00 Sophia 14 y rash Diabetes type 1 Hgb A1C 11Missing school – has a truancy officer Depressed Mother is overwhelmed

34 11:15 Caleb 4 m WCC WCC and follow up for hospitalizationAdmitted for “spells” Discharge diagnosis: “colic” Losing developmental milestones Was starting to roll over – not now Doesn’t smile like he used to

35 Now what? How do we assure that each child gets what he/she needs when he/she needs it? How do we coordinate services across systems? Education Health care Behavioral/mental health Community and recreation

36 Coordination of Care Practice level coordinationcare manager and practice team Plan level coordination MHPs case managers Local Health Department CSHCS nurse CMDS clinic care plan PARENT coordinates the child’s care

37 Family-Centered Care How do we support families so they can achieve THEIR goals? How do we reduce the burden of chronic health conditions on families? How do we build on the strength and resilience of families? How do we support inclusion and self-determination for all?

38 Preview of the afternoonWe will create care maps to look at ways to coordinate care. Care maps will help us identify ways case managers and care coordinators can assist children/youth and families. We will hear from families about their experiences to learn ways we can better provide Family Centered Care.

39

40 9:15 Myles 24 m WCC Myelodysplasia Father incarceratedMother has problems with substance abuse Mother moves often Currently in foster care – working on reunification

41 Myles – 24 m myelodysplasia

42 BREAK for LUNCH

43 11:15 Caleb 4 m WCC WCC and follow up for hospitalizationAdmitted for “spells” Discharge diagnosis: “colic” Losing developmental milestones Was starting to roll over – not now Doesn’t smile like he used to

44 9:45 Mark 17 y/o trouble breathingEpilepsy – Lennox-Gastaut syndrome Cerebral Palsy G-tube Chronic and recurrent respiratory problems Fever and cough – working hard to breathe today Oxygen sats low overnight

45 11:00 Sophia 14 y rash Diabetes type 1 Hgb A1C 11Missing school – has a truancy officer Depressed Mother is overwhelmed

46 8:15 Marisa 15 y f/u ED visit for headachesHx syncope Hx respiratory distress Hx of PICU stay with dx “pseudoseizures” Seen at Sparrow, DeVos, U of M MRI, EKG, Holter monitor – all reassuring

47 PARENT PANEL Latrieva Collins-Boston Charity Wilson Kathy ForrestKathleen Stempniewski