Lessons Learned:
Expanding Oregon's Care Coordination Program
to Youth with Special Health Care Needs
OCCYSHN Spring Partners’ Training - May 2, 2014
Oregon CaCoon (Care Coordination) Program
Goal:
• Assure coordinated care for children and
youth with special health needs (CYSHN) and
their families
Method:
• Provide public health nurse (PHN) home
visiting services to families of CYSHN
CaCoon Public Health Nurse Activities
CaCoon PHNs provide:
• Care coordination related to health, education and
social services
• Nurse assessment for medical/health needs and
developmental monitoring appropriate for condition
• Assistance accessing the health care and social
service systems
• Referral, linkage and monitoring access to
community services
• Parental support and advocacy toward autonomy
CaCoon Program Administration
OCCYSHN:
• Contracts with local public health
departments in 34 of Oregon’s 36 counties
• Provides ongoing program development,
monitoring and evaluation
• Provides ongoing teaching and TA for
community-based CaCoon PHNs
Who is eligible for CaCoon?
• Children and youth birth to 21 years with a
chronic health condition
• Families are eligible regardless of income or
insurance status
• There is NO cost to families
CaCoon Services – FY2013
• 1,793 children received 8,735 visits from
CaCoon nurses
• Families received an average of 5 visits
• CaCoon PHNs made over 5,600 referrals to
community services
YSHN – What can data tell us…
2009-2010 National Survey of CSHCN
% of CSHCN, 12-17 years
Oregon
Nationwide
Outcome #1: Families are partners in shared decisionmaking for child's optimal health
67.8%
71.0%
Outcome #2: Receive coordinated, ongoing,
comprehensive care within a medical home
40.9%
43.1%
Outcome #3: Consistent and adequate private and/or
public insurance to pay for the services they need
51.6%
59.4%
Outcome #4: Screened early and continuously for
special health care needs
69.0%
80.6%
Outcome #5: Easily access community based services
64.3%
65.0%
Outcome #6: Receive the services necessary to make
appropriate transitions to adult health care, work and
independence
35.6%
40.0%
2010 Oregon Title V Needs Assessment – Findings
N = 122 Families of YSHN (12 to 21 years)
• 13% received information for their YSHN about
transitioning to adult health care
• 56% reported “someone” talked to them about
transition planning.
–
–
–
–
66%
48%
4%
3%
School
Developmental Disabilities
Vocational Rehabilitation
Primary Care Provider
• 16% reported it was difficult or very difficult to find
an adult provider for their YSHN
MCHB Innovative Evidence-Based Models for
Improving Systems Services for CYSHCN
Problem:
• Oregon YSHN often lack coordinated care and needed supports in
preparing for and transitioning to adult health care systems.
• Care coordination through public health nurses has been effective
for younger children in Oregon but is significantly less available for
youth 12 to 21 years.
MCHB Innovative Systems Services Grant:
• Expanding Oregon's Care Coordination Program to Youth with
Special Health Care Needs or the “CaCoon for Youth Project“ (C4Y)
• Initiated September 2011
Project # 1 D70 MC23055 01-01
CaCoon for Youth (C4Y) – Expanding CaCoon to YSHN
Project Goal:
Expand the CaCoon Care Coordination program to
youth with special health care needs, 12 to 21 years
• provide care coordination
• assure access to a medical home
• support transition to adult care
C4Y Project – Strengths to draw upon in CaCoon
• CaCoon PHNs have a broad knowledge of health and
developmental conditions.
• CaCoon PHNs are in a "neutral" place in the
community, they are able to engage a wide variety of
community agencies.
• Local CaCoon programs have established 20+ year
relationships with primary and specialty care
providers, service agencies and other key partners.
C4Y Project – Pilot Counties
Clatsop
Columbia
Tillamook
Washington Multnomah
Yamhill
Polk
Clackamas
Hood
River
Umatilla
Sherman
Wallowa
Morrow
Wasco
Union
Gilliam
Marion
Lincoln
Jefferson
Grant
Linn
Benton
Baker
Wheeler
Crook
Lane
Deschutes
Coos
Douglas
Josephine
Curry
Jackson
Harney
Klamath
Lake
Malheur
C4Y Project – Program Development & Outreach
• Community engagement which provided opportunities to:
 CaCoon PHNs to share information about the expanded CaCoon
program.
 Community partners to come together to identify local gaps, barriers
and opportunities as well as share information about available services
and resources for YSHN and their families.
 Improve communication and linkages among CaCoon PHNs, primary care
providers and other community-based services.
• Outreach to local PCPs and other community partners to
inform them of the C4Y project.
• Identified local services and resources available to YSHN and
their families.
Benton Context for C4Y – A Rural County
•
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•
Population - 85, 928
Population Density – 26.6 persons/square mile
Poverty level - 21.0%
Unique Features - Co-located with county Mental
Health, Developmental Disabilities and a Federally
Qualified Health Center
• Unique Challenges - Lack of adult-oriented provides
willing/able to care for YSHN
Benton County Approach
• Established relationships with PCPs, hospital and
community partners
• Convene monthly meetings with Mental Health,
Developmental Disabilities and local FQHC
• Partner with School Nurses to identify YSHN
• Facilitate and convene “care coordination” meetings
with other community-partners, youth and family
• Epic
• Secure email
Benton – Opportunities, Challenges, Lessons Learned
• Times are “a changing”
• CaCoon babies become CaCoon teens
• Limited resources
• Make yourself known
Deschutes Context for C4Y– A Rural-Suburban County
•
•
•
•
Population - 160,338
Population Density – 52.3 persons/square mile
Poverty level - 11.4%
Unique Features - Public Health Department
oversees four School-based Health Centers
• Unique Challenges - Long distance to travel for
specialty health care; Lack of engagement from
adult-oriented providers
Deschutes County Approach
• Initiated and continuing ongoing Transition
Campaign - Population-based approach to health
transition
• First 2 years of grant, embedded CaCoon PHNs in
School-Based Health Centers to provide CaCoon for
Youth services
• Worked with local pediatric clinics to identify YSHCN
in need of care coordination and transition
assistance
Deschutes County – Opportunities, Challenges,
Lessons Learned
• Opportunities:
– Launch of project brought many referrals from local school
districts.
– SBHC RN’s identified clients seen at clinic.
– Current staff are outreaching to providers and
participating in community events.
Challenges
– Turn over of staff, supervisors and change in SBHC
organization & process
– Little opportunity for formal orientation to C4Y
– Families of youths are hesitant to engage if they haven’t
had CaCoon contact previously.
– Referrals reported to Child Welfare by the school causing
difficulties for the RN’s
Lessons Learned
– CaCoon for youth clients are youth regardless of
their diagnosis
– To make C4Y sustainable in Deschutes County,
more opportunities for formal orientation to C4Y
would be helpful for PHNs and community
partners
Union County Context for C4Y – A Frontier County
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•
•
•
Population - 26,325
Population Density – 12.91 persons/square mile
Poverty level - 18.1%
Unique Features - Public Health Department is a
non-profit; Has supported community-based “CYSHN
CHT teams”
• Unique Challenges - Long distance to travel for
specialty health care and other needs in county
Union County Approach
• Completed weekly team meetings for planning,
implementation, and next steps
• Convening quarterly meetings with community partners to
identify and discuss needs/barriers of serving of local YSHN.
• Developed a community action plan addressing YSHCN and
family needs across the system of care.
• Working with Developmental Disabilities and County Mental
Health to identify YSHN who would benefit from C4Y.
Union County – Opportunities
Opportunities:
• Team Oriented Approach with
educational/medical professionals
• Improved communication
• Effective outreach with more awareness of
services for YSHCN
• Additional services available through DD
services
Union County: Challenges
• Engaging educational personnel.
• Medical vs. Educational diagnosis of Autism for
professionals and families
• Mental health issues tied to clients with multiple
diagnosis
• Mental health issues of family members
• Paperwork and the process to get a diagnosis can be
daunting for parents of YSHN
Union County: Lessons Learned
• CaCoon home visiting is valuable in coordinating care of YSHN
• Identified a community need, followed through with the need and in the
end we were able to provide a workshop to county wide professionals
• Team Approach, common goal for the community, better communication
amongst professionals
• Engagement of our local pediatric clinic and possible expansion around
providing a primary care home for children with ASD.
• Prior to the C4Y project CaCoon was not recognized as a useful
tool/resource for families amongst professionals due to lack of
knowledge. Through the efforts of the expansion process we were able to
strengthen relationships and promote CaCoon services
C4Y Project Learnings – Unique challenges in
serving YSHN
Challenge 1: Case Finding
• Difficulty for CaCoon PHNs to know how and when
to identify clients
• Lack of established referral pathways and intake
processes for older clients
• Lack of engagement from YSHN and families
– YSHN/families need food, shelter, safety before addressing
health and health related needs
– Health and transition are a low priority for YSHN
C4Y Project Learnings – Unique challenges in
serving YSHN
Challenge 2: Referrals
• Lack of time and capacity of community partners to
engage with CaCoon PHNs
• Lack of understanding among community partners
of CaCoon Program and CaCoon services provided to
YSHN and their families
• Families referred to C4Y experience “service fatigue”
or have low follow through
C4Y Project Learnings – Unique challenges in
serving YSHN
Challenge 3: Finding and Providing Services
• Lack of services and resources available to YSHN
– Dwindling services, especially in mental and behavioral
health
– Services for YSHN have “stricter” eligibility criteria
• Lack of availability/willingness of adult-oriented
PCPs to serve YSHN
• Lack of parent support for YSHN increases difficulty
for CaCoon PHNs to help YSHN truly “launch” into
adulthood
C4Y Project – Key Preliminary Findings
CaCoon Nurse Practice Level:
• YSHN are engaged for a short period of time, work with YSHN to
prioritize and address needs.
• Transition planning must start early, must be comprehensive and
ongoing.
• YSHN with a high functioning medical home were less likely to
need C4Y services.
• Working with community partners is essential to meeting the
needs of YSHN. - One entity cannot address and meet all the needs
of YSHN.
• Community meeting and Care Coordination meeting work! –
Provide a platform to collectively address the needs of YSHN.
C4Y Project – Key Preliminary Findings
Program Level:
• Allow time for a Cultural Shift: need time for local CaCoon
programs to “build” a system for serving older children and youth
• Build in time and capacity for relationship building and systems
change
• Change service delivery model to meet YSHN/family needs
– Meet YSHN where they are – schools, Voc Rehab, physicians office
– Flexibility on initial assessment and number of visits
• Utilize expert or experienced CaCoon PHNs to serve YSHN – they
have had time and experience to build relationships and learn
about the systems of care
C4Y Project – Key Preliminary Findings
Policy and System Level:
• Support and spread of medical home practices that
include effective care coordination and adolescent
healthcare transition
• Enhance mental and behavioral health system of
care to meet needs of YSHN
• Include health in Education-based transition
planning and processes – it’s the one place
transition planning is happening consistently
Oregon Center for Children and Youth with
Special Health Needs
Presenter Information:
Jan Liebeskind, RN, Ph: (541) 766-6653
E-mail: jan.e.liebeskind@co.benton.or.us
Jean Clinton, RN, Ph: (541) 322-7476
E-mail: jean.clinton@deschutes.org
Chelsie Evans, RN, Ph: (541) 962-8800
E-mail: cevans@chdinc.org