1. FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS
A MEDICAL HOME MODEL
FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS
Adriana Matiz MD
Associate Professor of Pediatrics
Columbia University Irving Medical Center

2. Our Community Northern Manhattan
Now let me describe to you the WIN community. WIN serves the area of North. Manhattan - specifically the area shaded on this map. Extends as south as the 130’s and upto the tip of Northern Manhattan,
WIN predominantly serves this community – zip code criteria applied originally, education to all who accessed our program

3. Community Data- Census 2015
66% Hispanic
54% foreign-born
52% Spanish-only
56% Low acculturation score
43% have a household income <$20,000 USD

4. Children with Special Health Care Needs (CSHCN)
“those who have or are at increased risk for a chronic physical, developmental or emotional condition and who also require health and related services of a type or amount beyond that required by children generally” 4

5. Asthma Autism ADHD Complex congenital heart disease
Multiple Organ Involvement
Gastrostomy, Tracheostomy
Seizures
Prematurity
Neural tube defects
Chronic Lung Disease
Diabetes
Genetic Syndromes
Cerebral Palsy

6. WHY? CSHCN comprise 15-18% of all children in US (12.5 million)
CSHCN account for 80% of pediatric health care expenses
CSHCN have grown by 30% in the past 20 years due to improved medical care and testing
Account for >2.5 times the number of school absences, 2x as many unmet health needs, >5 times as many hospital days/ 1000 children

7. Latino Children in the US
Fastest growing minority population in the US (16%-2011)
Multiple health disparities, health access and socioeconomic challenges
Patient and family-centered care can help to address health disparities and improve population health
The National Center has a special interest in children and youth with special health care needs, including those living in vulnerable and underserved communities as well as members of minority populations.
One of these populations is children of Hispanic origin. Hispanics in general make up 16% based on Census By 2050 estimated to be 30%. In particular, the National Center is interested in working on projects related to this population because of some of the data and evidence that indicates this population suffers from health disparities.
Non hispanic US families report 16% of children have special needs, hispanic Eng speaking families report 14% have special needs and non-eng speaking families report 8.2% have special needs
Parents of hispanic CSHCN report that their children have a higher proportion of severe conditions as compared to the parents of the gen populatin of US children
Fortunately, primary care has been associated with decreased health care expenditures, improved population health, reduced disparities in health outcomes, and increased patient and family satisfaction with health care.
Since its introduction in the 1960’s, the patient- and family- centered medical home model of care has become the standard of primary care for both adults and children, particularly children with special health care needs.
Studies looking specifically at the Hispanic population have shown that lack of a medical home is associated with disparities in quality of care.
Family-centered care, including shared decision-making and cultural competence, are all key components of the medical home model.
Given its focus of medical home implementation and family-centered care, the National Center decided to take a look and see what the medical home landscape (including family-centered care and shared decision-making) is like for the Hispanic pediatric population.

8. National Survey of CSHCN, 2009/2010
The primary data source that the US government uses to determine how many children and youth with special health care needs receive care within a medical home is through the National Survey of Children and Youth with Special Health Care Needs.
The National Survey collects answers from parents/families on questions that look at access to a family-centered medical home.
On this slide you will see results from the most recent survey, distributed in 2009/2010.
Data specific to the Hispanic population is circled; the audience will notice that 68% of the Hispanic population surveyed at this time was not receiving care within a medical home.

9. Case Patient Y born with prenatally diagnosed TEF, VSD
s/p TEF repair and at age 3 mos suffered esophageal rupture
subsequent critical course and major complications
9 months admission at Children’s Hospital discharged with:
esophageal stricture
G tube and J tube
chronic lung disease
global developmental delay
hypertension
He did not really have a pediatrician in the community and his mom asked for one of the inpatient attendings to become his pediatrician 9

10. This is Patient Y. His mother gave full consent for the use of this picture. In fact, when I asked her for a picture she sent me about 20 of them… this highlights how interested she and some many parents of CSHCN are in educating us about their children. I’ve learned so much from this family and they have been critical in this journey I share today with you.
So this is how patient Y has looked at various times in his life.

11. Special Kids Achieving Their Everything
(SKATE)
Improved care for high-risk & high-cost pediatric populations w/specialized needs
Outcomes Evaluation
University
Community MDs
Inter-disciplinary team -based visits for patients
w/complex medical,
behavioral &
social morbidities
Goal of 25% reduction in preventable ED visits & inpatient
re-admissions
House: 1 practice NYPWC, 4 NYP-CU
Who are these patients? Traditional CSHCN, sever asthma, mental health issues, and extreme obesity
Community based non-physician care for stable patients in need of chronic disease monitoring
(CHWs, CBOs)
Intensive Care
Coordination

12. Funding from Medicaid Reform in New York
Program
Management
Care
Management
Information
Technology
Care Managers
3 FTE
Program Manager
Patient Registry
Community Health Workers (CHWs)
4 FTE
Tailored appointments
Registry pilot at WHFHC
Expansion 2013 fall
Physician Leads
Integrated CHW findings in EMR
Psychiatric NPs
3 FTE
Adapted EMR In
Interdisciplinary Team Meetings

13. Pediatric Care Managers
Navigation
Coordinate appointments and procedures
Home care services
Pharmacy and supply needs
Connect to child welfare agencies, schools, insurance companies
Medication reconciliation
Accompany to appointments
Coordinate multidisciplinary meetings
Pilot 2014 April

14. Pediatric Psychiatry Nurse Practitioners
Diagnose
Short-term therapy
Coordinate referral to acute service or longitudinal therapy
Coordinate with school based psych
Support pediatrician medication management

15. Community Health Workers (CHW)
Hospital-Community partnership model
Bilingual
Peer-level culturally-sensitive education and support
Trained on CSHCN topics
Disease based, services (disability resources and special education)
Social needs which compete with self-management and coordination of care
Housing, literacy, food insecurity, immigration

16. Population
54%
Pilot started
N=8162
March 2017

17. Age Distribution

18. Risk Stratification

19. Pediatric Practices

20. Risk Stratification
12% have a care manager

21. CHW Cases
N=76

22. Metrics Program Patient/Family Social determinants
Housing, access to care, food insecurity
Goal attainment
Provider and family
Social service referrals
Number of monthly contacts
ED and hospitalization
Diagnosis understanding
Knowledge on accessing care
Medication management
Confidence in self-management
Level of distress
School connectivity
NEED NUMBERS FROM ABSTRACT JAIMEEIn 2015, as part of DSRIP, NewYork-Presbyterian and 2 community partners created a model known as Special Kids Achieving Their Everything (SKATE). The goal of SKATE was to improve coordination through the inclusion of care managers, psychiatric nurse practitioners, and community health workers (CHWs) from partner agencies, at 4 patient centered medical homes (PCMHs). To facilitate implementation, information technology enhancements were developed including: a registry, an EMR dashboard tool, outpatient notes, a shared care plan for transitions, alerts for scheduling longer appointments, integration of CHW documentation into the EMR and adoption of the RHIO. Weekly interdisciplinary meetings became a mainstay.
Results: As of March 2017, n=8162 CSHCN were identified and stratified. The distribution across PCMHs includes 14% at the most complex, 36% intermediate and 50% at the least complex level. The care managers have worked with 157 patients, of which 20% are most complex and 7% are unstable. CHWs enrolled 55 patients in the peer-level intervention, completed 10 cases and made 183 service referrals mostly for food insecurity, housing, and ESL classes.

23. Preliminary Outcomes and Next Steps
RN Care Managers – 160 patients
CHWs – 76 families
183 service referrals mostly for food insecurity, housing, and English as Second Language classes
Analyze ED and hospitalizations, primary care visits and subspecialty visits

24. Lessons Learned
Identifying and risk stratifying a population is essential to understand their needs and allocate resources.
CHWs and Practice-based RN care managers support families’ experience in the medical home.
The medical home model needs to be flexible and evolving as it adapts to changing resource opportunities but remain grounded in its core mission to support families.

25. CONTACT INFORMATION
Adriana Matiz MD
Associate Professor, Columbia University Irving Medical Center
Medical Director -- Center for Community Health Navigation