# Presentation: 390943

## Parent Professional Partnership Assuring an Integrated System of Care for CSHCN

## Deborah Garneau, OSHCN DirectorRI Department of HealthLisa Schaffran, Associate DirectorRI Parent Information Network

- Deborah Garneau, OSHCN DirectorRI Department of HealthLisa Schaffran, Associate DirectorRI Parent Information Network

## Parent Professional Partnerships at Work

- _[ ](http://law.rwu.edu/sites/visiting/content/images/ri_map.gif)__ _

## Parent Professional Partnerships at Work

**Health Care in Rhode Island**
- Universal Newborn Screening
- Hospitals and Specialty Services
- Comprehensive Medicaid Program
- 3 Major Health Plans
- RIte Care/RIte Share

**Notes:**
DEB
RI population and other stats-- Deb

Universal Newborn Screening including metabolic, hearing and developmental screening.
State has one large maternity hospital and one Level II nursery; one children’s hospital; one large multi-disciplinary evaluation site; one mental / behavioral health hospital for children; one health department – no local depts, etc.
Medicaid program offers comprehensive health care, care coordination, a continuum of home and community based services
BC/BS----United----NHP
Insurance rate:   Rite Care is a comprehensive health plan for low income and children in placement and CSHCN.  Public insurance rates:  

## Parent Professional Partnerships at Work

**Health Care in Rhode Island**
- High Rates of Insured Children
- Medical Home Model
- Medical Care for CSHCNs
- CEDARR Family Centers

**Notes:**
DEB
Rate of Insurance for Children:  98% Second highest in the country 
Medical home model is somewhat fragmented – not a strong local AAP
Medical Care for CYSHCN: one major birthing hospital with state’s only NICU, one Children’s Hospital, one multi-disciplinary evaluation center, one place for specialty care / clinics
CFC: RI’s care coordination services

## Parent Professional Partnerships at Work

**The RI you may not know...**
- 6th highest prevalence of CSHCN
- Early Intervention and Special Education
- Facing a budget deficit of $500 Million
- Immigration
- Languages

**Notes:**
Lisa– comparisons to other states, counties with similar populations
EI- 9% (6th in Nation– 2nd in NE)  Special education: 21% statewide and CF 27% and Woon. 28%

Immigration---refer to kids Count Fact Sheet
 In 2006, 23% (52,533) of Rhode Island children were living in
immigrant families, comparable to the U.S. rate of 22%.
 In 2006, 4% (9,848) of Rhode Island's 237,447 children under age 18 were foreign-born, 21% of
whom were naturalized citizens of the United States.
Regions of Birth, Foreign-Born Children, Rhode Island, 2005-2006
25% Caribbean
17% Africa
16% South America
15% Central America
14% Europe
9% Asia
5% Canada, Mexico & Bermuda
Children born in Puerto Rico are U.S. citizens and are not counted as foreign-born, but may pose language barriers
Twenty-three percent of children in immigrant families in Rhode Island lived in linguistically isolated
Households.

Languages
Talk about languages – over 40 dialects 
Interesting fact: There are roughly 6,500 spoken languages in the world today. However, about 2,000 of those languages have fewer than 1,000 speakers. 

## Parent Professional Partnerships at Work

**Needs Assessment**
- Physician and Family Concerns
- Disconnect between health care and community social services
- Difficult to navigate community-based service and support systems

**Notes:**
DEB
Title V Needs Assessment in 2004 revealed physicians dedicated to serving CSHCN reporting to go broke; could no longer serve KSHCN because it took to long, families were asking for resources they didn’t have, physicians felt inadequate and frustrated, mental health and education issues were so pervasive, physicians and families were frustrated with the state for always changing programs and applications and eligibility
DOH and Medicaid felt as though we had so many resources and a responsive system, but it was disconnected from where the families were turning for help. ? Use of CEDARRs

## Parent Professional Partnerships at Work

**State Partners Pilot Program to Bridge the Gap**
- Development of a model to bridge the physician practices & community programs & resources
- Provides parent consultant services to primary and specialty care physicians dedicated to serving CSHCNs and their families
- PPEP model was established – Pilot implemented

**Notes:**
DEB
First – Pilot project with 8 sites---expanded to 20 with PNF Grant

## Parent Professional Partnerships at Work

## Parent Professional Partnerships at Work

**Department of HEALTH**
- Title V Special Needs Office
- Quality Assurance Initiatives
- Valuing Parents as Partners
- Natural Development of Model

**Notes:**
DEB
Deb—My Office (three areas of programming)
Title V Mandate: Ensuring family-centered services in the CSHCN service delivery system (example of writing in the contract vs. parent consultant)
Over 15 years of employing parents in the policy and advocacy roles – EI, DFH programs
Why this model---professional model less effective, not connected to community—expensive.
Role—Partner—funded...data—changes at systems level...etc

## Parent Professional Partnerships at Work

**What is the PPEP?**
- Medical Home project that provides enhancement services in a high quality and cost effective manner
- Family centered approach to health care
- Collaborative care that depends on all partners for success
- THE PARTNERS

**Notes:**
DEB
Medical Home is care that is accessible, family-centered, continuous, comprehensive, coordinated, compassionate and culturally effective. 
Family centered—empowerment model of teaching families not doing for.
Need partners for success– knowledge of docs, community resources , state initiative, health plan info
Often people say things wouldn’t be possible without the partners – but this one is true – Medicaid (DHS) paying, RIPIN needs to hire, train and supervise the parents, NHPRI provides access to behavioral health and access to medical equipment, Family Voices makes referrals and provides information

Partners –see next slide

## Parent Professional Partnerships at Work

**The Rhode Island Partners**
- Department of Health- OSHCN
- Department of Human Services
- Rhode Island Parent Information Network
- Neighborhood Health Plan of RI
- Family Voices of RI
- Hasbro Children’s Hospital
- American Academy of Pediatrics
- All Participating Sites

**Notes:**
DEB
Talk about AAP and DHS 
 Already Highlighted Health in previous slide,
 RIPIN and NHP – 2 other partners are here

## Parent Professional Partnerships at Work

**Department of HEALTH**
- Administer the PPEP
- Financial Management
- Physician / Practice Correspondence
- Data and Evaluation

**Notes:**
Deb – 
Secure the mechanisms – deal with DHS to get the $, contract with RIPIN, sought the New Freedom Initiative to fund expansion; facilitating ongoing sustainability discussions
Correspondence from general marketing of program, to initial presentations to potential sites, to application process and approval, to monthly connection with physician
Data and Evaluation of the Project – keep the database and generate the reports

## Parent Professional Partnerships at Work 

**Notes:**
Lisa

## Parent Professional Partnerships at Work 

**Rhode Island Parent Information Network (RIPIN) **
- Founded in 1991
- Statewide, 501(c)(3), charitable, nonprofit organization with a collective programmatic reach that extends to every Rhode Island community, the state’s major family-serving systems, schools, associations, and agencies
- Serves more than 20,000 families each year

**Notes:**
Lisa

## Parent Professional Partnerships at Work

**Rhode Island Parent Information Network (RIPIN)  Mission**
- 	RIPIN informs/educates, supports, and empowers ALL families to be equal partners in advocacy for the education, health, and socio-economic well being of their children and families....And Achieves family centered systems changes, which are culturally competent, and community based by partnering with, collaborating with, and educating key stakeholders.

**Notes:**
Lisa  - review mission
And how do we accomplish this----next slide

## Parent Professional Partnerships at Work 

**Rhode Island Parent Information Network (RIPIN)    **
- Offers 11 programs and services to all families and professionals in RI
- Federally designated: **PTIC, PIRC**, and the **Family to Family Health Information and Education Center**
- Home to **Family Voices of RI**
- Provides Parent Consultant Services

**Notes:**
LISA
Including F w/CSHCNs
Federally designated: Parent Training and Information Center (PTIC) and Parent Information and Resource Center (PIRC), and the Family to Family Health Information and Education Center
PTIC in every state
PIRC –coordinates PAT and HIPPY
FV Leadership team provides PPEP oversite
Several other partnerships and funding sources – 
Resource Center
Have networking and up to date resources – resource parents and PCs all over state, including at Health and EI
PC contract – grant process – Oct 2000—although partnered long before

## Parent Professional Partnerships at Work

**Why this model of peer-to-peer support?**
- Track record of success
- Commitment
- System navigation
- Networking
- RIPIN Connection
**Collaborating/Networking is the key to success!**

**Notes:**
Lisa
Why this model

Peer support – can add that it was not an easy road and challenges are being worked out daily
Up to date information exchange is continually happening—via parents, systems, plans – all about the positive, open partnership where  state values family input.  Can make change happen at the community level, empowering one family at a time
Success - Other PCs in community – health and EI
Level of passion/commitment from parent consultants is strong because they have “been there” 
Understand the complex system of navigating resources and know who to call for supports – parent know how to do it.  Professionals will respond to parent requests
Have access to 75 staff members and hundreds of other families  
Access to networking – give examples. F2F– will connect with the appropriate peer
Community/Clinical placements with strong connection to RIPIN- just hiring parents/consumers with not connection doesn’t work
Success comes with addressing and overcoming the challenges

## Parent Professional Partnerships at Work

**Where do parents get their information?**
- Sherlock Center on Disabilities – RIC
- Parents
- Face-to-Face and One-to-One
- Consistent Findings

**Notes:**
Lisa
In a study conducted by the Sherlock Center on Disabilities at Rhode Island College, parents were asked who they contacted for information and reliable resources. The number one response: other parents who have navigated complex medical, educational, maternal and child health, and human service systems and have an understanding of available resources, eligibility criteria and benefits.

They also preferred face-to-face contact----put greatest value on information from other families and individuals with disabilities. Findings are consistent with other studies

## Parent Professional Partnerships at Work

**Who are the Parent Consultants (PCs)?**
- 	Parents and family members who have CSHCNs and individuals with SHCNs who have experience in navigating the complex systems of care in Rhode Island. This experience includes knowledge of resources: from information re: basic needs (food, shelter, clothing) to accessing the appropriate insurance plan or specialty evaluation.

**Notes:**
So who are they???
Variety of PCs – all with experience with Health, DHS, DCYF (adoption and resources/supports with adoption)

## Parent Professional Partnerships at Work

**RIPIN’s Role in PPEP**
- Recruit
- Hire
- Train
- Development of training plan - Individual and Team
- Ongoing support and supervision
- Parent Consultant Activities

**Notes:**
Lisa
Overall Mgt of PCs
Describe recruitment—BCI and references
Collaborative process with clinical setting
Process- clinical setting has choice and final say in PC 
20-30 hours
Train-Orientation to RIPIN/Health resources, training and support services
Provide training plan and examples of training – working with families (empowerment, not do for)
Describe supervision- Laura, Linda and Paula ---- and RIPIN – how often  - meetings...
Supervisory training and support
Staff meetings w/DOH
How DOH and RIPIN work together to support PCs and docs—Equal partners
Works well—address issues and challenges immediately with open and continuous communication with docs and PCs
Training and Prof Dev—many PC are hired by agency   (Hasbro) – Term limits
***Enhance practice but also have staff understand FCP and provide resource materials for staff to use  - helps to understand Medical Home
Give examples of what PC do – Work with families, docs and system---Referrals – follow up and help families understand process (or dx or where to go and what to do when they get to hosp.

## Parent Professional Partnerships at Work

**Participating Primary Care Sites**
- 12 Primary Care Sites including:
- Hospital Based Primary Care Clinics
- Health Centers
- Private Physician Office
- Private Physician Group Practices
- Neo-natal Follow-Up Clinic

**Notes:**
Deb
Provide updated listing and Copy of RI  Map of all sites—(Lisa will get)

## Parent Professional Partnerships at Work

**Participating Specialty Care Sites**
- 13 Specialty Care Sites including:
- Hospital Based Multi-Disciplinary Evaluation Sites (2)
- Intensive Clinical Services: NICU, VIP, Rehabilitation
- Disability Specific Programs: Autism, Asthma
- Special Needs Dental Provider
- Special Intervention Teams: Housing, Behavioral Health, Women’s Prison, Prevent Child Abuse, Young Parents

**Notes:**
Deb

## Parent Professional Partnerships at Work

**How do we measure success?**
- Individual Level Evaluation
- Demographics / General Information: Age, Diagnosis, Race, Ethnicity, # in Household, Problems Identified
- Process Measures: Activity Type, Activity Location, Activity Content, Time Spent
- Outcomes: Goal Achievement, CEDARR Referrals, Referrals Made & Type, Utilization Analysis

**Notes:**
Deb
We collect a lot of data!
Data partnership with RIPIN PCs and Health

## Parent Professional Partnerships at Work

- In 4 years:
- Served 1927 CYSHCN and their families
- Had 8,721 contacts with families
- Addressed 2,749 family concerns
- Assisted families in achieving 71% of concerns
- 25 Parent Consultants are currently working on 662 concerns

**Notes:**
Deb

## Parent Professional Partnerships at Work

**Categories of Concerns:**
**22% Education**
**19% Mental / Behavioral Health**
**17% Specialty Evaluation**
**9% Health Insurance**
**7% Recreation / Social**
**7% General Parenting**
**5% Housing**
**4% Food / Clothing**
**4% Nutrition**
**3% Medical Equipment**
**3% Child Care**

**Notes:**
Deb

## Parent Professional Partnerships at Work

**How do we measure success ?**
- Practice Level Evaluation
- Identification of CSHCNs within practice
- Track and monitor CSHCNs
- Practitioner productivity
- Comprehensive service delivery / provision

**Notes:**
Deb

## Parent Professional Partnerships at Work

**Practice Level Results:**
**Physician Productivity**
**Patient Satisfaction**
**Physician Satisfaction**
**Comprehensive Care**
**Knowledge of System**
**Family Wait Time**
**FAMILY CENTERED CARE **

**Notes:**
Deb
MDs getting home earlier, asking “Is there anything else I can do for you?”
Better clinical care – Park pre-PPEP no follow through on appointments to specialists; post-PPEP 100% follow-through – saves on surgeries!

## Parent Professional Partnerships at Work

**How do we measure success?**
- System Level Evaluation
- Systems Barriers identified and worked on
- Integrated Service Delivery System for CSHCN and their families
- Practices Buying-In
- Recognition as a Reimbursable Service!

**Notes:**
Deb

## Parent Professional Partnerships at Work

**System Level Results**
- CEDARR works better
- Reduce Wait Lists
- Increase in Family Education
- Identified Need for Coordinated Information
- INTEGRATED SYSTEM OF SERVICES

**Notes:**
Deb
CFC – more responsive to families; changed policies around access
Family Education Materials – Complete Care Notebook (to assist families in being in charge of their child’s care), RI Resource Guide for Families Children who are Deaf or Hard of Hearing; RI Resource Guide for Families of Children with Autism Spectrum Disorder, Mental Health Guide in publications, Family Voices Resource Guide, On-Line Resource Engines – Ask Rhody?, CEDARR Guide
Coordinated information – need resources and people
Quality Assurance throughout the system – educated families in the system to drive family-centered practices (contract example)

## Parent Professional Partnerships at Work

**How do we measure success?**
**Utilization Analysis**
- NHPRI members seen in the PPEP practice sites
- Those members with a least a year’s worth of claims before and after entry into the PPEP
- Medical, pharmacy and behavior health services

**Notes:**
I can review this – and we can add in the poster to our packets.

##  Parent Professional Partnerships at Work

**Finding for Utilization Study**

- Major reduction in Inpatient Utilization: > -56% (-65)
- Increase in Outpatient / Home & Community-based Services
- Major shift in Behavioral Health Services:
- 48% Increase in Outpatient Services
- 100% Decrease in Inpatient and Day/Night Services

**Notes:**
Lisa

##  Parent Professional Partnerships at Work

**Cost Analysis **

- Over 57% of members had lower health care costs after becoming involved in PPEP
- Cost Decreases:
- Behavioral Health (Inpatient and Day/Night)
- Institutional (Hospital affiliated Services)
- Cost Increases: Professional & Pharmacy

**Notes:**
Lisa

## Parent Professional Partnerships at Work

**Summary of Findings**
- Decreased Costs
- Decreased utilization of Inpatient / More Intensive settings
- Increased utilization of Home & Community-Based services
- Increased Professional and Pharmacy

**Notes:**
Lisa

##  Parent Professional Partnerships at Work

**Family Outcomes**

- Families report:
- greater understanding and satisfaction of care
- feel empowered
- increased knowledge of supports
- Family Success story

**Notes:**
Lisa
Increased understanding of Svc del model – 
Resources
Emp to manage own care  - care notebook
Read a success story---add booklets

##  Parent Professional Partnerships at Work

**Challenges**
- Sustainability
- Ensuring that Parent Consultants are well-informed of community resources; RIte Care benefits; available care management programs for Medical and Behavioral Health
- Developing linkages to critical health care and social services

**Notes:**
Deb

Reimbursement-??? More buy- in
Ask audience for feedback?  Consider time
Transition from Ped to adult care

##  Parent Professional Partnerships at Work

**Opportunities**
- Enhanced reimbursement for the “Medical Home”
- On-going training of Parent Consultants
- Co-Location of behavioral health services in the medical practice
- Collaboration and partnerships with community-based health care and social services organizations
- Creating a similar model to support adults with disabilities
- Medical Home and Adolescent Transition

**Notes:**
Deb

## Parent Professional Partnerships at Work

- Interactive / Toolkits....
- Developing / enhancing a parent information center in your state
- Forms, Surveys, Agreements & Data Reports –
- 	the How To’s of PPEP
- Policy directed by the community / consumer
- Promoting Adolescent Healthcare Transition in the Medical Home

**Notes:**
Kit includes: 
State PTICs, FV, MoD, etc
Surveys
Database (develop an accessible one)
Fact Books-
US Census 
Sample MOAs, postings, JDs, interview questions
Locating “champions” in your state

## Parent Professional Partnerships at Work

**Deborah Garneau**
- Chief, OSHCN
- RI Department of Health
- 401.222.5929
- _[Deborah.Garneau@health.ri.gov](mailto:Deborah.Garneau@health.ri.gov)_
**Lisa Schaffran**
- Associate Director
- RI Parent Information Network
- 401.727.4144 x153
- _[schaffran@ripin.org](mailto:schaffran@ripin.org)_

## ...and we are making a difference.

- ...and we are making a difference.

## Questions?