Lessons Learned: Expanding Oregon's Care Coordination Program to Youth with Special Health Care Needs OCCYSHN Spring Partners’ Training - May 2, 2014

Lessons Learned: Expanding Oregon's Care Coordination Program

to Youth with Special Health Care NeedsOCCYSHN 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 decision-making 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% School – 48% Developmental Disabilities – 4% Vocational Rehabilitation – 3% 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

Marion

Klamath

Coos Douglas

Jackson

Malheur

Linn

Clatsop

Lake

Harney

Josephine

Curry

Benton

Lincoln

Polk

Yamhill Clackamas Wasco

Jefferson

Crook

Wheeler

Grant

Baker

Union

WallowaUmatilla

Morrow

Gilliam

ShermanTillamook

Lane

Columbia

MultnomahHood River

Deschutes

Washington

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

• 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

• 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: [email protected]

Jean Clinton, RN, Ph: (541) 322-7476 E-mail: [email protected]

Chelsie Evans, RN, Ph: (541) 962-8800 E-mail: [email protected]