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Colorado Care Coordination Committee Summary of Initiative
Name of Initiative: Colorado Care Coordination Committee
Name of Coordinating Group: Ad hoc cross-agency committee with representatives from the Colorado Department of Public Health and Environment, Family Voices Colorado, and JFK Partners/University of Colorado School of Medicine
Mission: To offer a definition, values, functions and outcomes of care coordination to be accepted across all sources of such service, and provide care coordination guidance and resources for those involved with care coordination throughout Colorado Goals: 1) To develop a definition of care coordination, and to identify the functions and outcomes of care coordination; 2) to offer guidance and a framework for Colorado regarding care coordination through the Care Coordination Plan; and 3) to be a resource to collaborative conversations among entities providing care coordination Summary of aspects of the initiative most relevant to the Colorado System of Care Values and Principles: The outcomes of care coordination, identified on the accompanying document, relate to all of the system of care principles. Products that have been developed for use in the field: 1) Care Coordination Plan; 2) Care Coordination Toolkit; 3) Draft of Care Coordination Definitions, Functions and Outcomes For information on this initiative, please contact:Sarah Hoover, Director of Community EducationJFK Partners/University of Colorado School of [email protected]/724-7635
Care Coordination Definition, Functions, and Outcomes - Summary 5w!C¢
The Care Coordination Committee includes representatives from: The Colorado Department of Public Health and Environment, Family Voices Colorado and JFK Partners/University of Colorado School of Medicine
Purpose: To offer a definition, values, functions and outcomes of care coordination to be accepted across all sources of such service.
Context: This document is being developed in the framework of the system that supports and provides care coordination. It is not intended to stand alone without a system context. Other materials have been developed to offer guidance and resources for system change that will accompany this document.
Care Coordination Definition Care coordination addresses interrelated medical, social, developmental, behavioral, educational, and
financial needs to achieve health and wellness outcomes. Care coordination is a person- and family- centered, assessment-driven, team activity designed to meet the needs of individuals while enhancing the care giving capabilities of families.
Care Coordination Values
The values underlying the provision of care coordination services are as follows: • To provide a team-based, partnership approach • To make a commitment to provide family-centered care • To build on the strengths of the family in developing the plan • To share pertinent and appropriate information (between all providers and the family) • To provide accurate information and information that is understandable to everyone involved in the
care coordination plan • To utilize culturally responsive practices • To recognize that families have different levels and types of care coordination needs • To match the type of care coordination to the family’s needs • To recognize that parents are the continuity between, and have the authority of managing the
services and supports they receive • To involve the family in contributing to the description of specific activities
Care Coordination Functions 1. Assess with the family and individual their strengths as well as unmet needs across life domains. 2. Identify all sources of referrals, services, and supports, facilitate connections with these sources, and
manage continuous communication across these sources 3. Identify family/individual desired outcomes 4. Develop comprehensive plan of care and services with the family/individual. 5. Provide information around purpose and function of recommended referrals, services, and supports 6. Re-asses and modify comprehensive plan of care with family/individual. 7. Support and facilitate transitions. Care Coordination Outcomes Well-being and Satisfaction:
• Family/individual goals achieved • Reduction in percentage of unmet needs • Increase family/individual satisfaction
Care Coordination Definition, Functions, and Outcomes - Summary 5w!C¢
The Care Coordination Committee includes representatives from: The Colorado Department of Public Health and Environment, Family Voices Colorado and JFK Partners/University of Colorado School of Medicine
• Increase provider satisfaction • Family functioning is healthy/improved • Family feels knowledgeable
Process: • Ease of access to resource information
o Increased individual/family and provider access to information about available resources. o Increased positive individual/family "teach-back" skills demonstrated.
• Enhanced communication among providers/family/community partners. o Increased documentation of care plan use and oversight.
Community and Relationship Supports:
• Improved relationships with family and friends • Improved parent-child relationships • Positive social supports
o Access to community resources including: Recreation, Transportation, Spiritual, Legal, Education
Functional Essentials:
• Increased self-management skills • Increased functional abilities
o Increased functional assessment, school attendance/success, ability to perform activities of daily living.
• Support achievement of developmental trajectory o Functional levels achieved, milestones marked
• Basic needs and essentials are met that include the following: Income, Home, Utilities, Food, Clothing, Insurance, Transportation, Child care
Physical and Mental Health and Development:
• Enhance communication between family and all sources of service and support o Reduce percentage of children seen by specialist without information from PCP; reduced
percentage of children seen by PCP without information from consultation/specialist. • Increased measures of health
o Health goals reached, family perception of individual’s health increased • Increase activity, developmental screening and health promotion (Early and Periodic Screening,
Diagnosis, and Treatment Guidelines, AAP and Bright Futures Guidelines) o Increased percentage of all children screened for developmental delays and sensory deficits
by select periodic well-child visits and/or school entry • Improve access to health and mental health care
Costs of Care:
• Reduce emergency department visits as indicated by reduced utilization of emergency departments • Reduce hospitalizations/hospital length of stay • Reduce redundancy and duplication of tests, services • Reduce repeat data gathering by service providers through increased care team efficiency • Reduce caregiver work days lost
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LINKING AND ALIGNING CARE
COORDINATION PLAN
Project BLOOM is an early childhood mental health system of care grant that is funded by the
Substance Abuse Mental Health Services Agency and administered by JFK Partners/University of
Colorado Health Sciences Center and the Colorado Department of Human Services/Division of
Mental Health.
Compiled by:
Project BLOOM Staff
Project BLOOM Linking and Aligning Leadership Committee
Project BLOOM Linking and Aligning Forum Attendees
For Project BLOOM’s Linking and Aligning Project
September 30, 2008
This publication was made possible by Grant Number SM-07-016 from the Center for Mental Health Services,
Substance Abuse and Mental health Services Administration, U.S. Department of Health and Human Services.
Grant SM-07-016 was administered through the Colorado Department of Human Services, Division of Behavioral
Health in Partnership with JFK Partners.
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EXECUTIVE SUMMARY
“Care coordination has been identified by the Institute of Medicine as one of the key
strategies for potentially improving the effectiveness and efficiency of the health care system”.1
In October 2007, Project BLOOM (BLOOM) received a supplemental grant from the Substance
Abuse and Mental Health Services Administration (SAMHSA) to, in part, develop a care
coordination model focusing on the integration of behavioral and physical health for children.
To meet this objective, BLOOM sponsored four monthly forums between May and August,
2008, in which 91 stakeholders from across the state were invited to attend.
Forum participants, under the direction of staff and Leadership Committee members,
developed a care coordination plan (this full document) that includes a description of care
coordination principles, values, a mission and outcomes; essential qualities of care
coordination; recommendations for families, providers, and systems-level agencies on how to
increase the efficiency with which care coordination services are provided and received; and
recommended next steps. This document is intended for three audiences: (1)
Families/consumers of care coordination-related services; (2) Care coordinators and providers
of services2; and (3) Systems-level agencies that develop care coordination policies and
programs.
Forum participants determined that care coordination services are centered on the
following five essential qualities: (1) Relationship-Building; (2) Culturally Competent Care; (3)
Family Focused and Strengths-Based Services; (4) Active Interagency Collaboration/Information
and Referral; and (5) Process and Outcomes Evaluation.
While this document includes recommendations for each of the three target audiences, the
following recommendations are applicable for all three.
1. Promote and have access to a client-centered electronic personal health record for
improving care coordination and allowing 24/7 access of information
2. Universal health care that covers all health (oral, behavioral, mental, and physical) and
covers long term care
3. The Colorado Medical Home Standards (Appendix 1) and System of Care Values and
Guiding Principles (Appendix 2) are applied and prioritized throughout the provision and
receipt of care coordination services
4. Adopt the “no wrong door” process by which families/consumers access care
coordination services
5. Identify and participate in the development of outcomes and support the monitoring
and evaluation of these outcomes
6. Utilize and be the recipient of culturally competent practices
7. Engage in continued multi-disciplinary system assessment in order to identify unmet
needs
Recommended next steps include suggested revisions to this document and the application of
this document’s concepts at the policy, education, and community level.
1 McDonald KM, Sundaram V, Bravata DM, Lewis R, Lin N, et al., June 2007
2 Examples of the types of providers for whom this document would be useful include: mental health specialists,
physical therapists, occupational therapists, substance abuse specialists, family physicians, pediatricians, nurses,
licensed social workers, etc.
3
Project BLOOM Staff:
Jean M. Cimino, MPH
State Coordination Consultant, Project BLOOM
Sarah Hoover, M.Ed.
Director, Project BLOOM
Cordelia Robinson Rosenberg, PhD, RN
Director, JFK Partners
Claudia Zundel, MSW
Principal Investigator, Project BLOOM
Project BLOOM Linking and Aligning Leadership Committee:
Barbara J. Deloian, PhD, RN, CPNP
Health Services Director, Children and Youth with Special Health Care Needs
Colorado Department of Public Health and Environment
Tom Dillingham
Executive Director, The Federation of Families for Children’s Mental Health – Colorado Chapter
José Esquibel
Director, Interagency Prevention Systems; Chair, Colorado Prevention Leadership Council
Prevention Services Division, Colorado Department of Public Health and Environment
Eileen Forlenza
Director, Colorado Medical Home Initiative, Children and Youth with Special Health Care Needs
Unit, Colorado Department of Public Health and Environment
Doyle Forrestal
Director of Public Policy, Colorado Behavioral Health Council
Julie Holtz, MS
Chief Executive Officer, Behavioral HealthCare, Inc.
Ken Seeley, EdD
President and Chief Executive Officer, Colorado Foundation for Families and Children
Kathy Watters, MA
Director, Children and Youth with Special Health Care Needs
Colorado Department of Public Health and Environment
Project BLOOM Linking and Aligning Forum Attendee Affiliation:
Asian Pacific Development Center
Boulder County Public Health
Centennial Mental Health Center
Center for Systems Integration
Children’s Hospital
Clinica Tepeyac
Colorado Behavioral Health Council
Colorado Department of Health Care Policy
and Financing
Colorado Department of Public Health and
Environment
Family Resource Centers
Federation of Families for Children’s Mental
Health – Colorado Chapter
Foothills Behavioral Health
Grupo Vida
Colorado Department of Health Care Policy
and Financing
Jefferson Center for Mental Health
JFK Partners
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Kaiser Permanente Colorado
Larimer Center for Mental Health
Mental Health Center of Boulder and
Broomfield Counties
North Range Behavioral Health
Northeast Behavioral Health
Parent Leader
Parent of Children with Special Needs
The Arc of Arapahoe and Douglas
Tri-County Health Department
Vroon VanDenBerg, LLC
West Central Mental Health Center
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BACKGROUND
“Quality problems and spiraling costs have resulted in widespread interest in solutions that
improve the effectiveness and efficiency of the health care system. Care coordination has been
identified by the Institute of Medicine as one of the key strategies for potentially accomplishing
these improvements”.3 In 2004, in an effort to create mobilization around addressing this
strategy, the Technical Assistance Partnership at the American Institutes for Research (TA
Partnership), SAMHSA and HRSA convened a working Linking and Aligning meeting in
Washington DC by inviting 4 states (MA, WI, SC, and CO) who had successful System of Care
and Medical Home initiatives with the following meeting objectives:
• To promote a dialogue on the integration of children's primary care and behavioral
health care;
• To identify and discuss practical strategies for integrating family-centered primary care
and behavioral health care at the practice, program, system and private sector levels;
• To build on states' and communities' experiences to help develop effective strategies for
integrating primary and behavioral health in a system of care; and
• To develop an action plan to integrate the Medical Home and System of Care approach,
this may include the development of a demonstration project.
A follow-up meeting was held in Washington, D.C. in December, 2005 as a continuation of this
work with the intention of addressing the following goals:
• Review and expand on strategies and recommendations identified in the last meeting,
addressing infrastructure development, time and financial constraints, cross-training for
primary care and mental health providers, creation of effective communication systems,
and development of supportive and innovative financing systems;
• Develop a blueprint that will guide implementation of promising strategies in these
areas; and
• Propose recommendations for future activities, including action plans for participating
states as well as demonstration projects that will test the feasibility of primary and
mental health care integration.
Unfortunately, at that time, there were no resources available to continue efforts.
METHODOLOGY
In October 2007, Project BLOOM (BLOOM)4 received a supplemental grant from the Substance
Abuse and Mental Health Services Administration (SAMHSA) to, in part, continue the Linking
3 McDonald KM, Sundaram V, Bravata DM, Lewis R, Lin N, et al., June 2007
4 Project BLOOM, a partnership of the Colorado Department of Human Services, Division of Mental Health; JFK
Partners at the University of Colorado Denver; the Colorado Children’s Campaign; the Colorado Federation of
Families for Children’s Mental Health; and the four community health centers of Aurora, El Paso County, Mesa
County, and Fremont County, is an early childhood system of care. BLOOM's vision is to ensure the mental health
and social and emotional well being of Colorado by weaving family-centered, culturally competent and
community-based mental health supports and services into a seamless early childhood system of care that
promotes health social-emotional development, identifies risk factors, intervenes early, and provides high quality
services. BLOOM's focus is primarily on young children, ages 0-5, with serious emotional disturbances, with
services provided in El Paso, Fremont, and Mesa counties and the city of Aurora. Their services include training,
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and Aligning efforts. To meet this objective, BLOOM sponsored four monthly forums between
May and August, 2008 to promote dialogue on the integration of children’s primary care and
behavioral health care; and identify and discuss practical strategies for integrating family-
centered primary care and behavioral health care at the practice, program, system and private
sector levels.
Outreach was conducted to 91 stakeholders across the state. Forty-five experts and other
stakeholders, including 4 BLOOM staff and 15 panelists, attended the forums with the overall
purpose of developing subsections of the care coordination model. The process was guided by a
Leadership Committee of eight state- and regional-level professionals who address care
coordination in varying capacities. Each forum focused on the perspective of care coordination
from four stakeholder groups: providers, care coordinators, families, and system-level agencies.
The intended result of the forums was the development of a care coordination model focusing
on the integration of behavioral and physical health for children (this document). What follows
is a description of care coordination principles, values, a mission and outcomes, followed by the
essential qualities of care coordination. Next, this document outlines recommendations for
families, providers, and systems-level agencies on how to increase the efficiency with which
care coordination services are received and provided. Last, recommended next steps for this
document are articulated.
TARGET AUDIENCE
This document is intended for three audiences: (1) Families/consumers of care coordination
services; (2) Care coordinators and providers of services5; and (3) Systems-level agencies that
develop care coordination policies and programs.
While each of these groups can use this document to develop an understanding of the different
and varied perspectives involved in care coordination, specific uses include: (1)
Families/consumers may use this document to understand values and qualities behind care
coordination, as well as an educational and advocacy tool when accessing and managing care
coordination services; (2) Providers may use this document as a foundation to maximize health
care outcomes and use resources efficiently when coordinating care for families;1
and (3)
Systems-level professionals may use this document to make decisions about how to coordinate
systems-level care in a way that minimizes their financial risks and maximizes the care that
families receive.1
CARE COORDINATION: WHAT IT IS AND WHY IT’S IMPORTANT
A. Overarching Principle
integrated delivery of supports and services, statewide working groups that focus on system improvements, and
creating sustainable statewide resources for addressing children's mental health. Website: www.projectbloom.org
5 Examples of the types of providers for whom this document would be useful include: mental health specialists,
physical therapists, occupational therapists, substance abuse specialists, family physicians, pediatricians, nurses,
licensed social workers, as well as care coordinators.
7
It is recognized that care coordination occurs across a continuum; a family’s level of
participation and intensity of services changes over time and/or with the receipt of services.
Thus, the approach by care coordination providers, and the services and activities within the
family’s care coordination plan should reflect this continuum.
B. Values
The values underlying the provision of care coordination services are as follows:
• To provide a team-based, partnership approach
• To make a commitment to provide family-centered care
• To build on the strengths of the family in developing the plan
• To share pertinent and appropriate information (between all providers and the family)
• To provide accurate information and information that is understandable to everyone
involved in the care coordination plan
• To utilize culturally competent practices
• To recognize that families have different levels and types of care coordination needs
• To match the type of care coordination to the family’s needs
• To recognize that parents are the continuity between, and have the authority of
managing the services and supports they receive
• To involve the family in contributing to the description of specific activitiesMH
C. Mission
Forum participants identified the below mission as having elements of both care and
coordination:
To provide “care” is to nurture, show concern, advocate, mentor, earn trust, be respectful and
be a source of strength.
Care coordination is a dynamic process that is value-driven and crosses systems. In this process,
care coordination providers and agencies should identify and utilize a family’s strengths to meet
priority needs for optimal well-being. Care coordination occurs between the care coordination
provider and the family, as well as among providers to create one individualized and shared
plan.
D. Outcomes
According to the Colorado Department of Public Health and Environment’s Health Care
Program for Children with Special Needs’ Care Coordination Pilot Project, outcomes of care
coordination were identified to:
• Maintain or improve the health status of children;
• Reduce Emergency Room visits;
• Prevent duplication of costly treatments;
• Prevent treatment delays;
MH
Medical Home Expectation
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• Increase family understanding of recommended treatments;
• Increase patient (family) and provider satisfaction;
• Augment the support for families by utilizing community resources;
• Ensure long-range comprehensive planning;
• Create independent families; and
• Encourage families to maintain continuous health care coverage.
(CDPHE, 2007)
ESSENTIAL QUALITIES OF CARE COORDINATION
Forum participants determined that care coordination services are centered on the following
five essential qualities:
(1) Relationship-Building;
(2) Culturally Competent Care;
(3) Family Focused and Strengths-Based Services;
(4) Active Interagency Collaboration/Information and Referral; and
(5) Process and Outcomes Evaluation.
1. Relationship -Building
Forum participants prioritized the quality of the relationship between the family and provider(s)
as a foundation to providing and receiving effective and efficient care coordination services. A
high quality family-provider relationship includes the following activities:
• Developing mutual trust and respect;
• Maintaining open communication, making it okay to ask questions;
• Listening for the unasked questions; and
• Offering anticipatory guidance in a sensitive and thoughtful manner.
2. Culturally Competent Care
Working within the culture of the family, as well as between providers’ cultural systems is
essential to providing and receiving effective and efficient care coordination services. This
includes the following activities:
• Providing culturally competent care;
• Supporting the concept of “cultural brokerage” (If the care coordinator is not fluent in
the language and culture of the family, partner with someone who can understand and
interpret these needs);
• Interpreting languages across systems; and
• Building a culture of open communication.
3. Family-Focused and Strengths-Based Services
“A family-centered approach in which there is a respect and acceptance of family diversity,
promotion of the family as a decision maker, and collaboration with professionals and
programs that are responsive to family needs is essential”.6 Forum participants prioritized this
6 Jackson, Finkler, Robinson, 1992, p.224
9
concept, recognizing the need to create and coordinate care based on the strengths of the
family, and with the family as the center of this process.
This concept includes the following activities:
• Identifying, screening and assessing the needs and strengths of the family, youth and
child/ren, recognizing that the levels of which fluctuate over the course of a lifetime;
• Coordinating a written individualized and shared plan that the family is satisfied with
and able to articulate, and make revisions to reflect fluctuations over the lifespan;
• Providing information and education to the child and family that addresses the concerns
and priorities of the family, while also providing anticipatory guidance;
• Assisting family with transitions (i.e., from early childhood to preschool, provider to
provider, child to adult services, community to community, etc.); and
• Participating in and supporting communication among team members that is family-
centered and encourages the family to be a partner in health care decisionmakingMH5
.
4. Active Interagency Collaboration/Information and Referral
The need to coordinate and collaborate among agencies involved in a family’s care coordination
includes the following activities:
• Coordinating a written individualized and shared plan that the family is satisfied with
and able to articulate, and collaborate with all providers to make revisions that reflect
fluctuations in the hild/youth’s lifetime;
• Collaborating with all providers to continuously monitor the outcomes of the plan;
• Identifying, navigating and making referrals to appropriate services and supports;
• Participating in and supporting a system for children and families to obtain information
and referrals about insurance, community resources, non-medical services, education
and transition to adult providersMH4
;
• Participating in and supporting communication among team members that is family-
centered and encourages the family to be a partner in health care decisionmakingMH5
;
• Navigating through and collaborating across systems, and contributing to joint planning;
• Providing outreach services;
• Disseminating and sharing useful information and linking resources; and
• Working on a continuum of coordination from basic referral to high fidelity wraparound
in a system of care.
5. Process and Outcomes Evaluation
The need for ongoing evaluation of care coordination services includes the following activities:
• Using institutionalized processes and tools that result in documentation of outcomes of
care coordination for families and situations where outcomes did not occur;
• Monitoring the outcomes of the plan on a continual basis;
• Providing families desired information in a format accessible to them; and
• Using data to improve and/or sustain services.
MH4
Adapted from Medical Home Standard #4: Information and Referral, Education System MH5
Adapted from Medical Home Standard #5
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GENERAL RECOMMENDATIONS
The following recommendations apply to all three target audiences: families/consumers,
providers, and system-level agencies.
1. Promote and have access to a client-centered electronic personal health record for
improving care coordination and allowing 24/7 access to information;
2. Universal health care that covers all health (oral, behavioral, mental, and physical) and
covers long term care;
3. The Colorado Medical Home Standards (Appendix 1) and the System of Care Values and
Guiding Principles (Appendix 2) are applied and prioritized throughout the provision and
receipt of care coordination services;
4. Adopt a “no wrong door” process by which families and consumers access care
coordination services;
Graphic 1.1
↸ � Plan of care � Care services rendered � Referrals
ENTER
(No wrong door)
5. Identify and participate in the development of outcomes and support the monitoring
and evaluation of these outcomes;
6. Utilize and be the recipient of culturally competent practices; and
7. Engage in continued multi-disciplinary system assessment in order to identify unmet
needs.
RECOMMENDATIONS: FAMILIES/CONSUMERS
1. Advocate for your child by making your child’s and your family’s needs known to
providers;
2. Help facilitate and encourage communication among your child’s and family’s providers;
3. Participate in the development of individualized planning and role definition among
providers;
4. Maintain comprehensive records of child’s provider contact information and services
received;
5. Seek support from other families with children with special health care needs; and
6. Participate in family education services.
RECOMMENDATIONS: PROVIDERS
1. Form a partnership with families and commit to providing family-centered care;
2. Provide ongoing communication with families about their children’s care;
3. Discuss provider and family expectations with families;
4. Provide child and family education around care coordination services;
5. Help families access the tools and resources necessary for them to maintain
comprehensive records of their child’s providers and services received;
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6. Complete a thorough and individualized assessment for each family, while providing a
continual assessment of a family’s top priorities when assisting them with system
navigation;
7. Monitor the accomplishments of child and family outcomes and partnerships with
families;
8. Include in the individualized child and family plan an outline of the roles and
expectations of providers;
9. Assist families with transitions (i.e., early childhood to preschool, child to adult services,
provider to provider, etc.);
10. Identify appropriate resources and make referrals;
11. Form a partnership and collaborate with other providers; and
12. Be aware of all the services the family is receiving in order to ensure effectiveness and
avoid duplication.
RECOMMENDATIONS: SYSTEM-LEVEL AGENCIES
1. Develop a template that articulates the range of expectations and roles for different
providers in order to build infrastructure and increase the opportunity for data
collection;
2. Develop core competencies and expectations for care coordination providers;
3. Provide core training for professionals and families to include the following:
a. Overview of key systems and services, including specific government programs
(e.g., HCP, WIC, EPSDT, Prenatal Plus, CHP+, etc.);
b. Relationship-building skills;
c. Cultural competency; and
d. Overview of the quality of life for those living with disabilities.
4. Establish communication pathways for coordination among education, and health and
behavioral health systems;
5. Support all elements of service delivery;
6. Develop processes whereby the evaluation of outcomes and quality can be established;
7. Create standards that allow for flexibility in the implementation of care coordination
consistent with local resources and values;
8. Share accountability across agencies and pursue increased funding;
9. Prioritize funding for research;
10. Review of Request For Proposals for child and youth programming to determine
possibilities of streamlining resources; and
11. Develop a process for information sharing across systems.
RECOMMENDED NEXT STEPS
Determined by participants at the fourth forum and by Leadership Committee members, the
following action items were recommended for continuing Linking and Aligning efforts in
Colorado. The next steps fall into two categories, revisions and modifications to the document
itself, and action items for furthering the goals of Linking and Aligning. Overall, it was
determined that interagency collaboration should be a priority when considering these next
steps.
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Successes of this Care Coordination Plan
• Developed a comprehensive toolkit to help communities in identifying resources for: (1)
Assessments; (2) Quality Assurance; (3) Permission for Information Sharing; and (4) the
care coordination plan.
• Solicited feedback on the document from Family Leadership participants.
• Plan has been included in state-level activity and Colorado’s State Plan for Prevention,
Intervention and Treatment Services for Children and Youth.
• A Care Coordination Committee has formed to further define care coordination and
develop a guidance document for the state regarding the functions and outcomes of
care coordination.
Next Steps for Linking and Aligning and the Care Coordination Committee
• Collaborate with system-level agencies that are charged with care coordination,
including Part C, EPSDT, Mental Health, and Developmental Disabilities.
• Collaborate with Colorado LINKS, the Colorado System of Care Collaborative, and the
Prevention Leadership Council to use this document to guide coordination of care
• Conduct outreach with the intention of getting endorsement of the concepts from
different groups already involved in care coordination efforts.
• Develop a pilot project with a county partner. The purpose of the pilot would be to
demonstrate the result of putting these care coordination concepts into practice.
• Use the document to educate providers to promote interdisciplinary collaboration with
the purpose of increasing efficiency via the following networks:
o American Association of Pediatrics
o Child and Adolescent Psychiatry
o Medical Homes for Children, including the CO Medical Home Initiative
o CO System of Care Collaborative
o State Council on Social Work
o Colorado Behavioral Health Council
o Community Colleges: Bring curriculum for workforce development. The current
qualifications differ by discipline.
• Conduct focus groups with providers to get feedback on whether these concepts are
feasible.
REFERENCES
Health Care Program for Children with Special Needs, Colorado Department of Public Health
and Environment. HCP Care Coordination Summary 1999-2007 DRAFT. 2007
Jackson, B., Finkler, D., Robinson, C. (1992). A case management system for infants with chronic
illnesses and developmental disabilities. Children’s Health Care, 21(4), 224-231.
McDonald KM, Sundaram V, Bravata DM, Lewis R, Lin N, Kraft S, McKinnon M, Paguntalan H,
Owens DK. Care Coordination. Vol 7 of: Shojania KG, McDonald KM, Wachter RM, Owens DK,
13
editors. Closing the Quality Gap: A Critical Analysis of Quality Improvement Strategies.
Technical Review 9 (Prepared by the Stanford University-UCSF Evidence-based Practice Center
under contract 290-02-0017). AHRQ Publication No. 04(07)-0051-7. Rockville, MD: Agency for
Healthcare Research and Quality. June 2007.
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Appendix 1. Colorado Medical Home Standards
Provides 24 hour 7 day access to a provider or trained triage service.
Child/family has a personal provider or team familiar with their child’s health history.
Appointments are based on condition (acute, chronic, well or diagnostic) and provider
can accommodate same day scheduling when needed.
A system is in place for children and families to obtain information and referrals
about insurance, community resources, non-medical services, education and transition
to adult providers.
Provider and office staff communicates in a way that is family centered and
encourages the family to be a partner in health care decision making.
Provider and office staff demonstrate cultural competency.
The designated Medical Home takes the primary responsibility for care coordination.
Age appropriate preventive care and screening are provided or coordinated by the
provider on a timely basis.
The designated Medical Home adopts and implements evidence-based diagnosis
and treatment guidelines.
The child’s medical records are up to date and comprehensive, and upon the
family’s authorization, records may be shared with other providers or agencies.
The Medical Home has a continuous quality improvement plan that references
Medical Home standards and elements.
From the Colorado Medical Home Initiative (CMHI)
16
Appendix 2. System of Care Values and Guiding Principles
Core Values
1. The system of care should be child centered and family focused, with the needs of the child and family dictating the types and mix of services provided.
2. The system of care should be community based, with the focus of services as well as management and decision-making responsibility resting at the community level.
3. The system of care should be culturally competent, with agencies, programs, and services that are responsive to the cultural, racial, and ethnic differences of the populations they serve.
Guiding Principles
1. Children with emotional disturbances should have access to a comprehensive array of services that address their physical, emotional, social, and educational needs.
2. Children with emotional disturbances should individualized services in accordance with the unique needs and potentials of each child and guided by an individualized service plan.
3. Children with emotional disturbances should receive services within the least restrictive, most normative environment that is clinically appropriate.
4. The families and surrogate families of children with emotional disturbances should be full participants in all aspects of the planning and delivery of services.
5. Children with emotional disturbances should receive services that are integrated, with linkages between child-serving agencies and programs and mechanisms for planning, developing, and coordination services.
6. Children with emotional disturbances should be provided with case management or similar mechanisms to ensure that multiple services are delivered in a coordinated and therapeutic manner and that they can move through the system of services in accordance with their changing needs.
7. Early identification and intervention for children with emotional disturbances should be promoted by the system of care in order to enhance the likelihood of positive outcomes.
8. Children with emotional disturbances should be ensured smooth transitions to the adult service system as they reach maturity.
9. The rights of children with emotional disturbances should be protected, and effective advocacy efforts for children and adolescents with emotional disturbances should be promoted.
10. Children with emotional disturbances should receive services without regard to race, religion, national origin, sex, physical disability, or other characteristics, and services should be sensitive and responsive to cultural differences and special needs. From Stroul, B. & Friedman, R. (1986). A system of care children and youth with severe emotional disturbance (rev. ed., p. 17). Washington, DC: Georgetown University Child Development Center, National Technical Assistance Center for Children's Mental Health.
1
LINKING AND ALIGNING
CARE COORDINATION
TOOLKIT
Compiled by:
JFK Partners Staff
JFK Partners Linking and Aligning Toolkit Development
Committee
For JFK Partners’ Linking and Aligning Project
March 16, 2009
This publication was developed by JFK Partners through the Administration on Developmental Disabilities UCEDD
Grant (#90DD0632) and the Maternal and Child Health Bureau LEND Grant (#1T73MC11044).
2
TABLE OF CONTENTS
Project Description
Introduction
[Your Agency’s Name]’s Mission, Values, and Principles
Background Figure 1. Substance Abuse and Mental Health Services
Administration’s (SAMHSA) System of Care
Toolkit Purpose How is the toolkit organized?
How was the toolkit developed?
Terminology and the Importance of Collaboration
Toolkit Resources A. Assessment
B. Quality Assurance
C. Permission for Information Sharing
D. The Care Plan
E. Community-Based Resources & Referrals
Recommendations: System-Level Agencies
Recommended Next Steps
Appendices
3
PROJECT DESCRIPTION
Upon completion of the 2007-2008 supplemental funding for the Linking and Aligning project
from the Substance Abuse and Mental Health Services Administration (SAMHSA) to, in part,
develop a behavioral and physical health integration care coordination plan for Colorado
stakeholders, additional funding from JFK Partners was secured to create an accompanying
comprehensive toolkit. The following toolkit was developed based on the same foundation of
principles of the Linking and Aligning Care Coordination Plan: integrating the Medical Home and
System of Care approach.
JFK Partners is a multifaceted Interdepartmental Program of the Departments of Pediatrics and
Psychiatry of the University of Colorado Health Sciences Center. Designated as Colorado's
University Center for Excellence by the Administration on Developmental Disabilities and as
Colorado's LEND Program (Leadership Education in Neurodevelopmental Disabilities) by the
Maternal Child Health Bureau, JFK Partners has strong collaborative relationships with
numerous organizations that are a part of Colorado's developmental disability and special
health care needs communities.
The mission of JFK Partners is to promote the independence, inclusion, contribution, health,
and well-being of people with developmental disabilities and special health care needs and
their families through consumer, community, and university partnerships. At the core of our
mission is a commitment to family and person-centered, community-based, culturally
competent programs and services. This mission is accomplished through the pursuit of
excellence in education and training, consultation, technical assistance, direct service, research,
program development, policy analysis, and advocacy.
The development of this toolkit was supported by the following federal grants:
1. University Center on Developmental Disabilities Research, Education, and Service
(UCEDD), PI: Cordelia Robinson, PhD, RN, US Department of Health and Human Services,
Administration for Children and Families, Administration on Developmental Disabilities,
Award #: 90DD0632/02, 7/1/07-6/30/11.
2. Leadership Education in Neurodevelopmental and Related Disorders Training (LEND), PI:
Cordelia Robinson, PhD, RN, Health Resources and Service Administration (HRSA),
Maternal Child Health Bureau (MCHB), Award #:T73 MC11044, 9/1/08-8/31/11.
3. Family Support 360, PI: Cordelia Robinson, PhD, RN, US Department of Health and
Human Services, Administration for Children and Families, Administration on
Developmental Disabilities, Award #: 90DN0205/05, 9/30/04-9/29/09.
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4
INTRODUCTION
On behalf of the Colorado Family Leadership Task Force, I am delighted to endorse the Linking
and Aligning Care Coordination Toolkit. Developed through a collaborative partnership with
various stakeholders in Colorado, including family leaders, this toolkit serves as a resource to
guide and connect providers with valuable information.
Promoting authentic partnerships between families and providers is a core value of the
Colorado Medical Home/Systems of Care Initiatives. Families throughout Colorado have
consistently expressed their desire and readiness to be active partners in their child’s health
care. Coordinating care between many providers and disciplines has proven to be challenging
for families, and yet, families understand how important it is! As you utilize the resources found
in this toolkit we encourage you to continue to engage the individual and their family in all
levels of care planning. It is the shared vision of many families and agencies across Colorado
that services will be coordinated, comprehensive and culturally respectful and this toolkit is a
resource to support this vision.
Thank you for your ongoing commitment to partner with individuals with special health care
needs and their families to deliver quality, family-centered health services.
Eileen Forlenza
Colorado Family Leadership Task Force
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5
[YOUR AGENCY’S NAME]’S MISSION,
VALUES, AND PRINCIPLES
Please use this space to include your agency’s mission, values, principles, etc.
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6
BACKGROUND
For families of children with special health care needs, the current health care system offers
fragmented care, with limited access to a single provider who can coordinate the necessary
multiple sources of care.i This often results in an inefficient use of resources, as well as the loss
of quality services and spiraling health care costs for both families and providers.ii Because
compromised social, emotional or behavioral health places children at high risk for short-and
long-term problems, families of children with special health needs can benefit from the
coordination of physical and behavioral health care. Care coordination has been identified by
the Institute of Medicine as one of the key strategies for potentially addressing the
aforementioned challenges.iii Similarly, according to the Colorado Health Care Foundation, one
of the four components of integrated care is care coordination, which should occur “across all
elements of the health care system and the patient’s community including family, public and
community-based services”.iv
Figure 1 below, from the Substance Abuse and Mental Health
Services Administration’s (SAMHSA) System of Care, illustrates this concept.
The Linking and Aligning project identifies care coordination as “a dynamic process that is value-
driven and crosses systems.” To that end, the five essential qualities of care coordination
involve relationship-building; the provision of culturally competent, family-focused and
strengths-based care; active interagency collaboration that includes information and referral
processes; and process and outcomes evaluation.
While there are little data available regarding the benefits of care coordination, available
research suggests that it does have a positive impact on the well-being of both the child and
family. Specific benefits include:
• Ongoing health promotion and disease prevention consultation;
• Appropriate use of community resources;
• Integration of their family within the community;
• Supportive and enjoyable family-child relationship;
• Accessible and safe home environment;
• Appropriate and accessible family health care;
• Understanding of medical conditions, treatments, and medications;
• Reduced ER visits and avoidable hospitalizations; and
• Active participation in child’s Individual Family Service Plan (IFSP) and Individual
Education Plan (IEP).v
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7
Figure 1.
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For a list of Community-Based Resources organized by these categories, click here.
8
TOOLKIT PURPOSE
This toolkit, developed as an accompanying document to the Linking and Aligning Care
Coordination Plan, is primarily intended for care coordinators and providers of services1
(hereafter referred to as providers) who are beginning to build, or want to evaluate their
capacity to provide care coordination. Thus, the toolkit is designed to be used as a
comprehensive resource guide when working directly with families in a variety of settings
across Colorado. However, families/consumers can use this toolkit as a guide for developing
expectations about their care and as an advocacy tool when interacting with their care
coordinators or health care providers. Systems-level agencies can also use this toolkit as a
document to make policy and programmatic decisions based on the included
recommendations.
NOTE: This toolkit includes examples of tools that providers may find useful in their work with
families. In using this toolkit, it is not a requirement to use any particular tool. It is the
expectation that providers may use any of the tools as a new implementation to the care they
provide and/or that some tools may provide a useful question(s) that could be added to the
tools currently being used. Please keep in mind that the reliability and validity of a tool is
compromised if it is not used with fidelity.
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How is the toolkit organized? The Toolkit is divided into five main sections:
(1) Assessment;
(2) Quality Assurance;
(3) Permission for Information Sharing;
(4) The Care Plan; and
(5) Community-Based Resources & Referrals.
Included resources have no hierarchy within the toolkit, but are listed in alphabetical order.2
Following this collection of resources are recommendations for system-level agencies and
recommended next steps, by the Toolkit Development Committee, for the progression of this
work.
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1 Examples of the types of providers for whom this toolkit would be useful include: mental health specialists,
physical therapists, occupational therapists, substance abuse specialists, family physicians, pediatricians, nurses,
licensed social workers, as well as care coordinators, service coordinators, navigators, and family advocates. 2 The Linking and Aligning Project recognizes that there are a variety of available resources related to the
components of this toolkit, yet 3-5 resources per section were chosen at this stage of toolkit development so as
not to overwhelm the user.
9
How was the toolkit developed? In October 2008, a 13-person committee, including four staff, was convened to assist in the
development of this toolkit. Committee members were invited to attend based on their
experience and role within care coordination initiatives across Colorado. It was the intention of
the staff to have the voices of families, service providers, and administrative agencies
represented on the committee.
Two in-person meetings were held to discuss the focus and format of the toolkit, as well as to
identify resources to be included in the toolkit. The committee, joined by additional colleagues,
participated in a review of the toolkit. During this process, the toolkit was reviewed for content,
organization and grammar.
JFK Partners acknowledges and appreciates the time and effort that the Toolkit Development
Committee members and external reviewers spent on developing this document. These
individuals are:
Christina Ells, BA
Program Administrator, Colorado
Children’s Healthcare Access Program
Colleen Head
Community Coordinator, Early
Intervention Colorado, Division for
Development Disabilities
Colorado Division of Human Services
Mark Kling
Executive Director, Family Resource
Centers
David Lack
Executive Director, Clinica Tepeyac
Miranda Meadow
Projects Coordinator, Colorado
Children’s Healthcare Access Program
Steven Rosenberg, PhD
Associate Professor, Clinical Psychology
Division
University of Colorado Denver
Julie Schilz, RN, BSN
Manager, IPIP and PCMH
Colorado Clinical Guidelines
Collaborative
M. Kay Teel, PhD, LCSW
Instructor, JFK Partners
Department of Psychiatry, School of
Medicine
University of Colorado Denver
Cathy White, RN, MSN
Director, School Health Initiatives
Colorado Department of Public Health
and Environment
10
Staff
Jean M. Cimino, MPH
State Coordination Consultant, Linking
and Aligning, JFK Partners
University of Colorado
Sarah Hoover, M.Ed.
Senior Instructor, JFK Partners
University of Colorado Denver
Cordelia Robinson Rosenberg, PhD, RN
Director, JFK Partners
University of Colorado Denver
Claudia Zundel, MSW
Division of Behavioral Health
Colorado Department of Human
Services
External Reviewers
Connie Carroll-Hopkins, Barbara Deloian, Judy Dettmer, Virginia Howey, Gina Robinson,
Colorado Family Leadership Task Force members, and JFK Partners Consumer Advisory
Council members
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11
Terminology and the Importance of
Collaboration
The developers of this toolkit recognize that the term care coordination and care coordinator,
while referring to a similar concept and role, respectively, differ across disciplines and systems,
examples of which are noted below. This toolkit is meant to be all-inclusive to those providers
working with families who have children with special health care needs who are in need of a
variety of services, regardless of the level of intensity of need. This wide variety of terms
illustrates the need for collaboration among existing and future care coordination-related
initiatives. Thus, one intention of this toolkit is to foster communication and partnerships
between service providers working with the same families.
• 360°
• Care guides
• Case management/case managers
• Coaches
• Continuum of care
• Early Periodic Screening,
Diagnosis, and Testing (EPSDT)
• Family Service Plan (Child
Welfare)
• Holistic care
• Individual Education Plan (IEP) –
Individual Family Service Plan
(IFSP/IEP) - 504 (Education
system
• Individual treatment plan
• Integrated care
• Medical Home
• Navigation/Navigators
• Service coordination
• System of Care
• The nursing process
• Wraparound/Facilitators
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12
TOOLKIT RESOURCES
A. Assessment
B. Quality Assurance
C. Permission for Information Sharing
D. The Care Plan
E. Community-Based Resources &
Referrals
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13
A. ASSESSMENT
Assessment, identified by Colorado’s Health Care Program for Children with Special Needs
(HCP) as an essential care coordination activity, is to “collect and review medical and
educational information, and family input to identify strengths, needs and available
resources.”vi Conducting an assessment is not exclusive to other care coordination activities, yet
is part of a process that leads the way to the development of an appropriate care plan.vii
Assessments are most effective when conducted by skilled professionals.
This section includes five suggested resources for conducting an assessment.
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14
1. Colorado Family Support Assessment
Used by the Colorado Family Resource Centers, the purpose of the Colorado Family Support
Assessment is to learn about the level of support needed by families across various areas of life
through discussion and dialogue initiated by a family advocate. Both the family and the family
advocate provide input into the assessment. This assessment is intended for families who are
receiving more intensive and long-term family support services, and includes 16 domains, some
of which are Health Care Access, Housing, Food, and Mental Health.
The complete assessment, as well as the Colorado Family Support Example Interview Guide, can
be found as Appendix A below. The assessment is available in both English and Spanish.
2. Cultural Competence Health Practitioner Assessment
The Cultural Competence Health Practitioner Assessment (CCHPA) was developed by the
National Center for Cultural Competence (NCCC) at the request of the Bureau of Primary Health
Care, Health Resources and Services Administration, U.S. Department of Health and Human
Services. The CCHPA is intended to enhance the delivery of high quality services to culturally
and linguistically diverse individuals and underserved communities. It is also intended to
promote cultural and linguistic competence as an essential approach for practitioners in the
elimination of health disparities among racial and ethnic groups.
The CCHPA can be completed online at:
https://www4.georgetown.edu/uis/keybridge/keyform/form.cfm?formID=277
3. Health Care Program for Children with Special Needs (HCP) Care Coordination Acuity
Tool
The HCP Care Coordination Acuity Tool offers the provider an opportunity to discuss a variety of
issues to determine the level of care coordination a family needs. Sections are provided to track
when referrals are made, when a parent and/or child are informed or taught information about
a specific issue, and space is provided to develop a summary for developing a care plan.
The complete assessment can be found as Appendix B below.
4. Phases, Activities, and Skill Sets of the Wraparound Process: Strengths, Needs,
Culture, and Vision Discovery (section 1.3a)viii
The Phases and Activities of the Wraparound Process represents the results of a research
project intended to clarify the types of activities that must be included in a full wraparound
process. It is one component among a set of materials produced by the National Wraparound
Initiative, a project with a goal to clearly operationalize and define this important and
innovative model for working with families. This document focuses on what needs to happen in
wraparound and how the work is accomplished. Merely accomplishing the tasks is insufficient
unless this work is done in a manner consistent with the 10 principles of wraparound WHAT
ARE THE 10 PRINCIPLES? The Strengths, Needs, Culture, and Vision section in this process is an
example of a comprehensive assessment. Following this model would allow the care
coordinator or provider of services to engage in a dialogue with the family about their
15
experiences, thus enabling the ability to identify appropriate community resources to meet the
family’s needs.
The complete assessment can be found as Appendix C below.
5. Traumatic Brain Injury Care Coordination: Health Screening Questionnaires for Parents
The Traumatic Brain Injury Care Coordination: Health Screening Questionnaires for Parents tool,
designed by Colorado’s HCP, is a two-page, parent-completed assessment that assists the care
coordinator in identifying necessary care coordination services. The worksheet also offers space
for the care coordinator to track referrals and services requested for the family.
The complete assessment can be found as Appendix D below.
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B. QUALITY ASSURANCE
For the purposes of this toolkit, quality assurance refers to the capacity by which a practice,
clinic, or program has the infrastructure and ability to provide care coordination services. HCP
identifies several indicators as quality-based outcomes of care coordination, including
“improved clinical status, improved functional status, enhanced quality of life, client
satisfaction, adherence to the treatment plan, improved client safety, cost savings, and client
autonomy.” Additionally, HCP recommends that care coordination programs have the capacity
to include “sustained family involvement in systems improvement – through surveys, advisory
committees, family consultants, and regular forums.”ix
This section includes five suggested resources for assessing a practice, clinic, or program for its
ability to provide quality care coordination services. Resources are available to be completed by
both the practitioner and the family.
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17
1. Cultural and Linguistic Competence Policy Assessment (CLCPA)
The Cultural and Linguistic Competence Policy Assessment (CLCPA) was developed by the
National Center for Cultural Competence (NCCC) at the request of the Bureau of Primary Health
Care (BPHC), Health Resources and Services Administration (HRSA), U.S. Department of Health
and Human Service (DHHS) to assist community health centers to advance and sustain cultural
and linguistic competence. The CLCPA is intended to support health care organizations to
improve health care access and utilization, enhance the quality of services within culturally
diverse and underserved communities, and promote cultural and linguistic competence as
essential approaches in the elimination of health disparities. The NCCC has also developed a
companion Guide for Using the Cultural and Linguistic Competence Policy Assessment
Instrument that provides step-by-step instructions on how to conduct an organizational self-
assessment process.
The CLCPA can be accessed online at:
https://www4.georgetown.edu/uis/keybridge/keyform/form.cfm?formID=277
2. Family-Centered Care Self-Assessment Tool: (1) Family Tool and (2) Provider Tool
The Family-Centered Care Self-Assessment Tool, developed by Family Voices, is not designed to
provide a score, but is meant as an opportunity for reflection and quality improvement
activities related to family-centered care within outpatient health care practices. It can also be
used by families to assess their own skills and strengths, the care their children and youth
receive, and to engage in discussions within health care settings and with policy makers in
organizations, health plans and community and state agencies about ways to improve health
care services and supports.
The tool is intended to assess care for all children and youth and also has some questions that
are specific to the needs of children and youth with special health care needs and their families.
Questions on the tool address the ten components of family-centered care and the key aspects
of family/youth/provider partnerships.
Both tools, along with a User’s Guide, can be accessed online at:
http://www.familyvoices.org/pub/index.php?topic=fcc
3. National Initiative for Children’s Healthcare Quality: (1) Medical Home Index and
(2) Medical Home Family Index
The Medical Home Index (MHI) is a validated self-assessment and classification tool designed to
translate the broad indicators defining the medical home (accessible, family-centered,
comprehensive, coordinated, etc.) into observable, tangible behaviors and processes of care
within any office setting. It is a way of measuring and quantifying the "medical homeness" of a
primary care practice. The MHI is based on the premise that "medical home" is an evolutionary
process rather than a fully realized status for most practice settings. The MHI measures a
practice's progress in this process.
18
The Medical Home Family Index is a companion survey intended for use with a cohort of
families of children and youth with special health care needs who receive care in a designated
practice. This tool gives the practice a valuable consumer perspective while allowing family
corroboration of the practice’s self-assessment (as reported on the Medical Home Index).
Both tools can be accessed online at:
http://www.medicalhomeimprovement.org/assets/pdf/MHIK-tools.pdf
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C. PERMISSION FOR
INFORMATION SHARING
As discussed above, children with special health care needs often require multiple service
providers. In order to provide care efficiently and effectively, it is important that the various
providers coordinate referrals and services provided, as well as participate in the creation and
evaluation of the care plan. However, the family must agree to the sharing of their child’s
health information.
This section includes two examples of forms that give permission for the sharing of personal
information, as well as information about The Health Insurance Portability and Accountability
Act (HIPAA).
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20
1. Behavioral/Physical Health Coordination
This form, developed by the State of Indiana’s Office of Medicaid Policy and Planning, Family &
Social Services Administration, contains a section on the first page, entitled Patient Consent,
which may be used as an example of obtaining permission for sharing a child’s health
information among providers.
This form can be accessed online at: http://in.gov/icpr/webfile/formsdiv/51856.pdf
2. The Health Insurance Portability and Accountability Act (HIPAA)
HIPAA is a federal law that protects the privacy of personal health information. The Office for
Civil Rights, under the U.S. Department of Health & Human Services, enforces HIPAA. Families
must give permission before personal health information can be shared with the following:
• Employers
• Health care providers
• Hospitals
• Insurance companies
• Schools
• State and federal agencies
• Any other entity requesting health information
-Information about HIPAA can be accessed online at:
http://www.hhs.gov/ocr/privacy/index.html
-The Colorado Department of Human Services, Alcohol and Drub Abuse Division HIPAA
Workgroup, and Colorado Mental Health Services published a HIPPA manual “to inform
providers about HIPAA and assist them in their efforts towards HIPAA compliance.” This manual
can be accessed online at:
http://www.cdhs.state.co.us/dmh/PDFs/providers_HIPAA_Manual_and_Attachments.pdf
3. Information Release Form: Family Education Rights and Privacy Act
The Family Educational Rights & Privacy Act (FERPA) is a federal law that protects the privacy of
student education records, both financial and academic. For the student’s protection, FERPA
limits release of student record information without the student’s explicit written consent;
however, it also gives the student’s parent(s)/guardian the right to review those records if the
parent(s)/guardian claim the student as a dependent on their federal income tax return. This
form may be necessary when collaborating with a child’s educational services.
An example of this form can be accessed online at: http://orientation.wooster.edu/ferpa.pdf
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D. THE CARE PLAN
Planning, identified by HCP as an essential care coordination activity, is to “assist the family to
develop a care coordination plan with specific objectives, goals and actions to meet identified
needs.”x The development of a care plan allows both the practitioner and the family to
continually monitor and evaluate the effectiveness of the services provided to the family.xi
Care
plans are a dynamic document that can capture the changing needs of the family that occur
over time. The ultimate goal of a care plan is to achieve positive outcomes for the family.
This section includes five examples of how a care plan can be organized. Care plans for both
practitioners and parents are included.
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1. Care Plan for Children with Special Health Care Needs
This three page template, developed by the State Government of Victoria, Australia,
Department of Human Services (September 2008), is designed to supplement the Universal
Child Health Record (UCHR, CH-14). It is intended to be used for children with special health
needs. The UCHR is designed to be concise and does not provide sufficient space for detailed
instructions that a CSHN might need. This Care Plan should be used when instructions for the
child’s care cannot be fit on to the UCHR. This Care Plan can be utilized as a template and be
adapted as needed. Not all parts need to be completed for some children, but other children
may require extra pages to be attached to fully explain the instructions for the child’s care. In
order to facilitate communication between the health care provider and the parent, it may be
best to complete this form with the parent/guardian present.
The Care Plan for Children with Special Health Care Needs can be found as Appendix E below.
2. Care Plan and Services Template
This two page plan, developed by the United Kingdom’s National Children’s Bureau (2006),
allows the practitioner or family to document contact information and an outcomes timeline
for each provider contributing care within nine domains, note the type of care plan, and record
a contingency plan.
This resource can be accessed online at: http://www.ncb.org.uk/careplanning/pdf/Care-plan-
and-services-template.pdf
3. Colorado’s Individualized Family Service Plan (IFSP)
The Individualized Family Services Plan (IFSP) is the process and document that guides and
directs the provision of early intervention services. The IFSP is based on the individualized,
functional needs of the infant or toddler and the concerns and priorities of the parents. The
IFSP is routinely reviewed and changed as needs, concerns and priorities change.
The IFSP can be accessed online at:
http://www.eicolorado.org/index.cfm?fuseaction=Professionals.content&linkid=61
4. Service Coordination Plan
This two page plan, developed by Australia’s Victorian Department of Human Services (2006),
allows the practitioner to record the individual care plans of all workers, practitioners, or
agencies involved in a consumer’s care to allow a coordinated approach to service delivery.
This resource can be accessed online at:
http://www.health.vic.gov.au/pcps/downloads/coordination/service_coordination_plan.dot
5. What’s the Plan?
This one page worksheet, developed by the Washington State Department of Health’s Center
for Children with Special Needs at Children’s Hospital and Regional Medical Center, is designed
to help parents organize their questions and concerns. Completion of this plan can help families
23
plan for doctor visits. This worksheet is available in English, Spanish, Chinese, Vietnamese,
Russian, and Korean.
This resource can be accessed online at: http://cshcn.org/planning-record-keeping/care-plans-
parents/parents-create-care-plan
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E. COMMUNITY-BASED
RESOURCES & REFERRALS
Care coordination often requires some level of referral to comprehensively meet a family’s
needs. Making appropriate referrals, especially for complex patients, requires being
knowledgeable about medical and social resources available in your community.xii
This section includes a list of statewide services that offer community-based resources
throughout Colorado. Resources are organized according to the Substance Abuse and Mental
Health Services Administration’s (SAMHSA) System of Care Model, Figure 1, illustrated on page
7 of this toolkit. The website, and in some cases a phone number, is included. Some resources
maybe appear in more than one category.
What follows this list is a section that includes three suggested resources for navigating the
referral process.
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1. Local Resources
Educational Services
Child Find
Child Find offers information and resources related to the earliest possible identification
of young children and their families who may benefit from early intervention or
education services.
Child Find is a component of Individuals with Disabilities Education Act (IDEA) that
requires states to identify, locate, and evaluate all children with disabilities, aged birth
to 21, who are in need of early intervention or special education services. The below
Child Find web site is mainly focused on Part C of the IDEA, the Early Intervention
Program for Infants and Toddlers with Disabilities. However, much of the information
and many of the links listed on the Child Find web site can be useful in conducting child
find for all young children, not just child find for infants and toddlers.
Website: http://www.childfindidea.org/
Colorado Department of Education
The Colorado Department of Education offers a variety of resources for educators,
administrators, and parents and students. Parents and students can find information on
performance & accountability, existing educational programs, and district-specific
information.
Phone: 303-866-6600
Website: http://www.cde.state.co.us/
Colorado Family Resource Centers
The Family Resource Center Association is a collaborative network of 24 community-
based family resource centers that provide a comprehensive and proven approach to
improving health, social, educational and economic outcomes for entire families, not
just individuals.
The statewide Association (FRCA) unites stand-alone centers to strengthen programs
and service delivery through advocacy and outreach, joint programming and evaluation,
capacity-building training and technical assistance, and resource development.
Phone: 303-388-1001
E-mail: [email protected]
http://www.cofamilycenters.org/
26
Early Childhood Colorado (Early Childhood Colorado Information Clearinghouse)
This website is a one-stop-shop for all Coloradans to access services and resources
related to young children and the people who care for them. Website users can search
by county to see a complete listing of services and resources available in that county, or
a keyword search can be conducted.
Website: http://www.earlychildhoodcolorado.org/
Early Intervention Colorado
Early Intervention Colorado offers supports and services for infants, toddlers, and their
families. Resources are available online for both families and professionals (providers,
service coordinators, and system partners). Families can use the site to determine
whether their child is eligible to receive Early Intervention (EI) services, how to get
connected to services, etc. County contacts for EI services can also be found on this
website, as well as information on the referrals process and related forms.
Website: http://www.eicolorado.org
Parent to Parent of Colorado
Parent to Parent of Colorado (P2P-CO) is a parent initiated, parent controlled, organized
group that connects families of sons and daughters with disabilities or special healthcare
needs in communities in Colorado.
Toll free information and referral line in English and Spanish: 877-472-7201
Email: [email protected]
Website: http://www.p2p-co.org/
United Way
United Way is a national network of nearly 1,300 local organizations that work to
advance the common good by focusing on education, income and health. These are the
building blocks for a good life: a quality education that leads to a stable job, enough
income to support a family through retirement, and good health
Find a local United Way Organization: http://www.liveunited.org/myuw/
Family Advocates
Colorado Department of Public Health and Environment, Health Care Program for Children
with Special Needs (HCP)
At the Health Care Program for Children with Special Needs (HCP), professionals and
families work as a team. HCP provides information, referral to services and support.
Families make choices and take action. Together, we help children with special health
needs get what they need and grow to be their healthiest, as well as reach the full
potential of their independence.
27
HCP can help you find:
• Screenings and clinics
• Medical Home, health, transition and community services
• Financial assistance
• Family support groups
• Respite care
• Answers to questions...and more
Phone: 303-692-2370
Website: http://www.cdphe.state.co.us/ps/hcp/
Colorado Family Resource Centers
The Family Resource Center Association is a collaborative network of 24 community-
based family resource centers that provide a comprehensive and proven approach to
improving health, social, educational and economic outcomes for entire families, not
just individuals.
The statewide Association (FRCA) unites stand-alone centers to strengthen programs
and service delivery through advocacy and outreach, joint programming and evaluation,
capacity-building training and technical assistance, and resource development.
Phone: 303-388-1001
E-mail: [email protected]
http://www.cofamilycenters.org/
Family Voices of Colorado
Family Voices Colorado is a chapter of the national, grassroots organization composed
of families and friends who care for and about our children with special health care
needs. The primary goal of the organization is to ensure that our children's health is
addressed amidst change in public and private health care systems.
Family Voices Colorado provides:
• Information and Referral
• Advocacy Support Information
• Private Health Insurance Advocacy
• Training
• Systems Change/ Policy Work
Phone: 1-800-881-8272
Website: http://www.familyvoicesco.org/
28
The Federation of Families for Children’s Mental Health – Colorado Chapter
The mission of the Federation (a family organization) is to promote mental health for all
children, youth and families. The website offers links for youth; a list of support groups
by county; a list of community mental health centers; crisis lines by state region; and
resources covering evidence-based practice, advocacy, family involvement, and
understanding your child’s behavior (ages 0-6), as well as a list of books on a variety of
mental health topics
Phone: 303-572-0302
Website: http://www.coloradofederation.org/
Parent to Parent of Colorado
Parent to Parent of Colorado (P2P-CO) is a parent initiated, parent controlled, organized
group that connects families of sons and daughters with disabilities or special healthcare
needs in communities in Colorado.
Toll free information and referral line in English and Spanish: 877-472-7201
Email: [email protected]
Website: http://www.p2p-co.org/
Health Services
Colorado American Academy of Pediatrics
The mission of the Colorado Chapter American Academy of Pediatrics is “to provide an
active voice promoting the optimal health and welfare of infants, children, adolescents,
and young adults in Colorado; to support the continuing education of health care
providers in matters of child and adolescent health; and to encourage participation and
fellowship in these areas by Pediatricians throughout the state.” This membership
organization is active in legislation related to the health of young children, endorses
several public health programs across the state, and provides CME opportunities.
Website: http://www.coloradoaap.org/
Colorado Department of Public Health and Environment, Health Care Program for Children
with Special Needs (HCP)
At the Health Care Program for Children with Special Needs (HCP), professionals and
families work as a team. HCP provides information, referral to services and support.
Families make choices and take action. Together, we help children with special health
needs get what they need and grow to be their healthiest, as well as reach the full
potential of their independence.
HCP can help you find:
• Screenings and clinics
• Medical Home, health, transition and community services
29
• Financial assistance
• Family support groups
• Respite care
• Answers to questions...and more
Phone: 303-692-2370
Website: http://www.cdphe.state.co.us/ps/hcp/
Colorado Family Resource Centers
The Family Resource Center Association is a collaborative network of 24 community-
based family resource centers that provide a comprehensive and proven approach to
improving health, social, educational and economic outcomes for entire families, not
just individuals.
The statewide Association (FRCA) unites stand-alone centers to strengthen programs
and service delivery through advocacy and outreach, joint programming and evaluation,
capacity-building training and technical assistance, and resource development.
Phone: 303-388-1001
E-mail: [email protected]
Website: http://www.cofamilycenters.org/
Colorado Medical Home Initiative
A Medical Home is not a building, house or hospital, but a team approach to providing
health care. A Medical Home originates in a primary health care setting that is family-
centered and compassionate. A partnership develops between the family and the
primary health care practitioner. Together they access all medical and non-medical
services needed by the child and family to achieve maximum potential. The Medical
Home maintains a centralized, comprehensive record of all health related services to
promote continuity of care.
Children with special health care needs may have many professionals invested in their
physical and emotional well-being. Coordination of care is an essential activity to
assure communication and planning amongst team members, including family, primary
health care practitioners, specialists, community programs and insurance plans.
Website: http://www.cdphe.state.co.us/ps/hcp/medicalhome/index.html
Early Childhood Colorado (Early Childhood Colorado Information Clearinghouse)
This website is a one-stop-shop for all Coloradans to access services and resources
related to young children and the people who care for them. Website users can search
by county to see a complete listing of services and resources available in that county, or
a keyword search can be conducted.
30
Website: http://www.earlychildhoodcolorado.org/
Early and Periodic Screening, Diagnostic and Treatment (EPSDT)
EPSDT is a health care benefit package for all Medicaid enrolled children ages 20 and
under and pregnant women. EPSDT services include:
• All Medicaid benefits and dental benefits, hearing aids and limited orthodontia
• Case management services with an EPSDT Outreach Coordinator in your community
help you: EPSDT Outreach Coordinator
• Locate providers that accept Medicaid
• Obtain non-emergency medical transportation
• Childcare
• Food or shelter
• Part C Head Start
• The Women, Infants and Children (WIC) program
• The Health Care Program for Children with Special Needs (HCP) program
Most counties have an EPSDT Outreach Coordinator who can help a client navigate the
Medicaid system, as well as non-Medicaid community systems. To access contact
information for the EPSDT Outreach Coordinator in your county, click on this website:
https://hcpf.cdhs.state.co.us/HCPF/EPSDT/CountyAddressEPSDT.doc
Website: https://hcpf.cdhs.state.co.us/HCPF/EPSDT/EPSDTindexnew.asp
Family Voice Provider Hotline
Family Voices Colorado offers a provider hotline to answer the questions of pediatric
practices and provide resource information for children with special health care needs
(including disabilities and chronic illness).
The purpose of the hotline is to:
1. Assist pediatric practices with resources they may not be aware of for treating
children and youth with special health care needs;
2. Identify case management services for families who may not know they are
available;
3. Identify gaps or shortages in services through the data collected.
The Provider Resource Hotline is 1-877-731-6017.
For assistance or more information:
- Call Monday - Friday from 8:00 a.m. to 4:00 p.m./ Voice mail 24/7
- E-mail [email protected]
- Fax information sheet to 303-691-0846
Website: http://www.familyvoicesco.org/hotline/index.htm
31
Parent to Parent of Colorado
Parent to Parent of Colorado (P2P-CO) is a parent initiated, parent controlled, organized
group that connects families of sons and daughters with disabilities or special healthcare
needs in communities in Colorado.
Toll free information and referral line in English and Spanish: 877-472-7201
Email: [email protected]
Website: http://www.p2p-co.org/
United Way
United Way is a national network of nearly 1,300 local organizations that work to
advance the common good by focusing on education, income and health. These are the
building blocks for a good life: a quality education that leads to a stable job, enough
income to support a family through retirement, and good health
Find a local United Way Organization: http://www.liveunited.org/myuw/
Mental Health Services
Colorado Department of Human Services, Division of Behavioral Health
(This division encompasses the two divisions formally known as the Alcohol and Drug
Abuse Division and the Division of Mental Health.) The Division of Mental Health web
site is provided as a resource for mental health providers, children, adolescents, adults
and their families, policy makers, and all citizens of Colorado.
The Division of Mental Health administers non-Medicaid community mental health
services for people with serious emotional disturbance or serious mental illness of all
ages, through contracts with six specialty clinics and seventeen private, nonprofit
community mental health centers. The Division of Mental Health strives to ensure high
quality, accessible mental health services for Colorado residents, by reviewing
community mental health programs; adopting standards, rules and regulations;
providing training and technical assistance; and responding to complaints from non-
Medicaid consumers.
Phone: 303-866-7400
Information for Providers: http://www.cdhs.state.co.us/dmh/
Colorado Medical Home Initiative
A Medical Home is not a building, house or hospital, but a team approach to providing
health care. A Medical Home originates in a primary health care setting that is family-
centered and compassionate. A partnership develops between the family and the
primary health care practitioner. Together they access all medical and non-medical
services needed by the child and family to achieve maximum potential. The Medical
32
Home maintains a centralized, comprehensive record of all health related services to
promote continuity of care.
Children with special health care needs may have many professionals invested in their
physical and emotional well-being. Coordination of care is an essential activity to
assure communication and planning amongst team members, including family, primary
health care practitioners, specialists, community programs and insurance plans.
Website: http://www.cdphe.state.co.us/ps/hcp/medicalhome/index.html
Early Childhood Colorado (Early Childhood Colorado Information Clearinghouse)
This website is a one-stop-shop for all Coloradans to access services and resources
related to young children and the people who care for them. Website users can search
by county to see a complete listing of services and resources available in that county, or
a keyword search can be conducted.
Website: http://www.earlychildhoodcolorado.org/
Family Voice Provider Hotline
Family Voices Colorado offers a provider hotline to answer the questions of pediatric
practices and provide resource information for children with special health care needs
(including disabilities and chronic illness).
The purpose of the hotline is to:
1. Assist pediatric practices with resources they may not be aware of for treating
children and youth with special health care needs;
2. Identify case management services for families who may not know they are
available;
3. Identify gaps or shortages in services through the data collected.
The Provider Resource Hotline is 1-877-731-6017.
For assistance or more information:
- Call Monday - Friday from 8:00 a.m. to 4:00 p.m./ Voice mail 24/7
- E-mail [email protected]
- Fax information sheet to 303-691-0846
Website: http://www.familyvoicesco.org/hotline/index.htm
The Federation of Families for Children’s Mental Health – Colorado Chapter
The mission of the Federation (a family organization) is to promote mental health for all
children, youth and families. The website offers links for youth; a list of support groups
by county; a list of community mental health centers; crisis lines by state region; and
33
resources covering evidence-based practice, advocacy, family involvement, and
understanding your child’s behavior (ages 0-6), as well as a list of books on a variety of
mental health topics
Phone: 303-572-0302
Website: http://www.coloradofederation.org/
Parent to Parent of Colorado
Parent to Parent of Colorado (P2P-CO) is a parent initiated, parent controlled, organized
group that connects families of sons and daughters with disabilities or special healthcare
needs in communities in Colorado.
Toll free information and referral line in English and Spanish: 877-472-7201
Email: [email protected]
Website: http://www.p2p-co.org/
Social Services
Colorado Department of Human Services, Division of Developmental Disabilities
The Division for Developmental Disabilities (DDD) is the State office that provides
leadership for the direction, funding, and operation of services to persons with
developmental disabilities within Colorado. DDD services are administered under the
Office of Adult, Disability and Rehabilitation Services (OADRS) of the Colorado
Department of Human Services (CDHS).
State leadership and oversight includes: policy, planning, program development, budget
development, program operation guidelines and technical assistance, training,
determination of funding needs, setting priorities, contracting and allocation of
resources, review of services and funding utilization, program quality, monitoring, and
evaluation, and management information. These functions are performed in concert
with service providers, advocacy groups, and consumers and their families.
Phone: 303.866.7450
Website: http://www.cdhs.state.co.us/ddd/
Colorado Family Resource Centers
The Family Resource Center Association is a collaborative network of 24 community-
based family resource centers that provide a comprehensive and proven approach to
improving health, social, educational and economic outcomes for entire families, not
just individuals.
The statewide Association (FRCA) unites stand-alone centers to strengthen programs
and service delivery through advocacy and outreach, joint programming and evaluation,
capacity-building training and technical assistance, and resource development.
34
Phone: 303-388-1001
E-mail: [email protected]
http://www.cofamilycenters.org/
Early Childhood Colorado (Early Childhood Colorado Information Clearinghouse)
This website is a one-stop-shop for all Coloradans to access services and resources
related to young children and the people who care for them. Website users can search
by county to see a complete listing of services and resources available in that county, or
a keyword search can be conducted.
Website: http://www.earlychildhoodcolorado.org/
Early Intervention Colorado
Early Intervention Colorado offers supports and services for infants, toddlers, and their
families. Resources are available online for both families and professionals (providers,
service coordinators, and system partners). Families can use the site to determine
whether their child is eligible to receive Early Intervention (EI) services, how to get
connected to services, etc. County contacts for EI services can also be found on this
website, as well as information on the referrals process and related forms.
Website: http://www.eicolorado.org
Family Voice Provider Hotline
Family Voices Colorado offers a provider hotline to answer the questions of pediatric
practices and provide resource information for children with special health care needs
(including disabilities and chronic illness).
The purpose of the hotline is to:
1. Assist pediatric practices with resources they may not be aware of for treating
children and youth with special health care needs;
2. Identify case management services for families who may not know they are
available;
3. Identify gaps or shortages in services through the data collected.
The Provider Resource Hotline is 1-877-731-6017.
For assistance or more information:
- Call Monday - Friday from 8:00 a.m. to 4:00 p.m./ Voice mail 24/7
- E-mail [email protected]
- Fax information sheet to 303-691-0846
Website: http://www.familyvoicesco.org/hotline/index.htm
35
The Federation of Families for Children’s Mental Health – Colorado Chapter
The mission of the Federation (a family organization) is to promote mental health for all
children, youth and families. The website offers links for youth; a list of support groups
by county; a list of community mental health centers; crisis lines by state region; and
resources covering evidence-based practice, advocacy, family involvement, and
understanding your child’s behavior (ages 0-6), as well as a list of books on a variety of
mental health topics
Phone: 303-572-0302
Website: http://www.coloradofederation.org/
Parent to Parent of Colorado
Parent to Parent of Colorado (P2P-CO) is a parent initiated, parent controlled, organized
group that connects families of sons and daughters with disabilities or special healthcare
needs in communities in Colorado.
Toll free information and referral line in English and Spanish: 877-472-7201
Email: [email protected]
Website: http://www.p2p-co.org/
Substance Abuse Services
Colorado Department of Human Services, Division of Behavioral Health
(This division encompasses the two divisions formally known as the Alcohol and Drug
Abuse Division and the Division of Mental Health.) The mission of the Alcohol and Drug
Abuse Division (ADAD) is to reduce the health, social, and economic consequences of
alcohol, tobacco, and other drug abuse and illegal use by fostering effective and
efficient prevention services.
ADAD works in partnership with federal and state entities as well as with ADAD
providers serving communities to encourage the use of multiple prevention strategies
implemented through effective practices and ethical behavior. ADAD also licenses and
monitors nearly 400 treatment provider agencies, with over 750 locations throughout
the state; administers the Advocates for Recovery program, and develops and enforces
regulations for Level I and Level II DUI education and treatment programs.
Website: http://www.cdhs.state.co.us/adad/index.htm
Vocational Services
Colorado Family Resource Centers
The Family Resource Center Association is a collaborative network of 24 community-
based family resource centers that provide a comprehensive and proven approach to
36
improving health, social, educational and economic outcomes for entire families, not
just individuals.
The statewide Association (FRCA) unites stand-alone centers to strengthen programs
and service delivery through advocacy and outreach, joint programming and evaluation,
capacity-building training and technical assistance, and resource development.
Phone: 303-388-1001
E-mail: [email protected]
http://www.cofamilycenters.org/
The Federation of Families for Children’s Mental Health – Colorado Chapter
The mission of the Federation (a family organization) is to promote mental health for all
children, youth and families. The website offers links for youth; a list of support groups
by county; a list of community mental health centers; crisis lines by state region; and
resources covering evidence-based practice, advocacy, family involvement, and
understanding your child’s behavior (ages 0-6), as well as a list of books on a variety of
mental health topics
Phone: 303-572-0302
Website: http://www.coloradofederation.org/
United Way
United Way is a national network of nearly 1,300 local organizations that work to
advance the common good by focusing on education, income and health. These are the
building blocks for a good life: a quality education that leads to a stable job, enough
income to support a family through retirement, and good health
Find a local United Way Organization: http://www.liveunited.org/myuw/
Other
2-1-1 Information & Referral Search
Call 2-1-1 or visit the 211 website if you are in need of essential human services,
including, but not limited to training, employment, food pantries, help for an aging
parent, addiction prevention programs, affordable housing options, support groups,
volunteer opportunities, etc.
Website: http://www.211.org/
United Way
United Way is a national network of nearly 1,300 local organizations that work to
advance the common good by focusing on education, income and health. These are the
37
building blocks for a good life: a quality education that leads to a stable job, enough
income to support a family through retirement, and good health
Find a local United Way Organization: http://www.liveunited.org/myuw/
38
2. This section includes three suggested resources for navigating the referral process.
a. Guide to Care Coordinators in Our Community
The Guide to Care Coordinators in Our Community was developed by the Center for Children
with Special Needs, a Program of Children’s Hospital & Regional Medical Center in Seattle,
Washington and the Washington State Department of Health Children with Special Health Care
Needs Program. This guide may be helpful in noting contact information for the family/child’s
various health care providers. (NOTE: Adaptation for state/local resources may be necessary as
the form includes Washington State-specific websites.)
This resource can be accessed online at: http://www.cshcn.org/forms/CareCoordinator-
BlankGuide.pdf
b. Referral Process for Infants and Toddlers 0-3 and Referral Process for Children 3-5
Following a Colorado Leadership Workshop: Advancing a Collaborative Agenda to Improve the
Health and Development of Young Children3, a task force organized to address issues related to
increasing screening for developmental delays in primary care provider’s offices including social
and emotional delays. The task force consisted of 8 organizations including four state agencies,
(The Colorado Departments of Human Services, Public Health and Environment, Health Care
Policy and Financing, and Education) and some of the state’s preeminent experts in early
childhood mental health, including the Colorado Children’s Hospital. The task force reviewed
barriers to screening identified by primary care providers identified by Colorado Children’s
Healthcare Access Program (CCHAP) and an EPSDT Screening Pilot funded by The Colorado
Health Foundation. Knowing that primary care offices often did not know where to refer
children once they were identified, the task force decided that an algorithm or flow chart that
would outline the referral process for children from birth through age five would be helpful.
After a year of work the task force developed two such algorithms, one for children from birth
through three years of age and one for children ages three through five. The separation was
developed because Part C organizes a different and more streamlined process for children 0-3.
The Referral Process for Infants and Toddlers 0-3 can be accessed online at:
http://www.eicolorado.org/index.cfm?fuseaction=Referral.referral&CFID=1115846&CFTOKEN=
39140251
The Referral Process for Children 3-5 can be accessed on:
http://dev.civicore.com/cffc2/
NOTE: Both flowcharts are color coded to identify responsibilities that are housed in the
primary care office, outside resources or both. Behind many of the boxes on the flowchart are
3 This workshop was co-sponsored by the Maternal and Child Health Bureau, Health Resources and Services
Administration, U.S. Department of Health and Human Services in 2006.
39
additional resources and forms that may be helpful to the provider. By clicking on the box this
additional information can be accessed.
[back to Toolkit Resources]
[back to Table of Contents]
40
RECOMMENDATIONS:
SYSTEM-LEVEL AGENCIES
1. Develop core competencies and expectations for care coordination providers;
2. Provide core training for professionals who are doing care coordination and advocacy
and families to include the following:
a. Overview of key systems and services, including specific government programs
(i.e., Health Care Program for Children with Special Health Care Needs [HCP];
Special Supplemental Nutrition Program for Woman, Infants, and Children [WIC];
Early Periodic Screening, Diagnostic, and Treatment [EPSDT]; Prenatal Plus; and
Child Health Plan Plus [CHP+]);
b. Relationship-building and assessment skills;
c. Cultural competency; and
d. Overview of the quality of life for those living with disabilities.
3. Establish communication pathways for coordination among education, and health and
behavioral health systems;
4. Develop processes whereby the evaluation of outcomes and quality can be established;
5. Develop “comprehensive, consistently defined system-level measures on access,
utilization and cost”xiii
;
6. Create standards that allow for flexibility in the implementation of care coordination
consistent with local resources and values;
7. Share accountability across agencies and pursue increased funding that will provide
reimbursement for care coordination functions;
8. Develop a process for information sharing across systems; and
9. Identify existing care coordination programs, regardless of level, and their funding
streams.
[back to Table of Contents]
41
RECOMMENDED
NEXT STEPS The time available to develop this toolkit was short (3+ months). Therefore the Toolkit
Development Committee recognized that additional strategies could be explored to enhance
the design and impact of this document.
1. Assign the resources within each section to care coordinators and providers of services
based on their level of providing care coordination services. Toolkit Development
Committee members suggested defining these levels according to the Department of
Education’s 2007 Early Childhood Council grant process, i.e., (1) Emerging Care
Coordination Agency; (2) Capacity-Building Care Coordination Agency; and (3) Model
Care Coordination Agency.
2. Create accompanying toolkits for families/consumers and system-level agencies.
3. Continue to partner with the Colorado Family Leadership Task Force on toolkit review
and development.
4. Adapt long care coordination templates for streamlining to appeal to agencies who seek
to coordinate care for their families.
5. Pilot the toolkit within a community agency that services families with high needs and
high-complexity cases in order to best determine the effectiveness of the included tools.
[back to Table of Contents]
42
APPENDICES All Appendices can be access online at
http://www.jfkpartners.org/WorkShopItemInfo.asp?Type=2&Number=150
Assessment
A. The Colorado Family Support Assessment (available in both English and Spanish), and
The Colorado Family Support Example Interview Guide
B. HCP Care Coordination Acuity Tool
C. Phases, Activities, and Skill Sets of the Wraparound Process: Strengths, Needs, Culture,
and Vision Discovery
D. Traumatic Brain Injury Care Coordination: Health Screening Questionnaires for Parents
The Care Plan
E. Care Plan for Children with Special Health Care Needs
[back to Table of Contents]
i The Colorado Health Foundation ii McDonald, K.M., Sundaram, V., Bravata, D.M., Lewis, R., Lin, N., Kraft, S., McKinnon, M., Paguntalan,
H., & Owens, D.K. Care Coordination. Vol 7 of: Shojania KG, McDonald KM, Wachter RM, Owens DK,
editors. Closing the Quality Gap: A Critical Analysis of Quality Improvement Strategies. Technical Review
9 (Prepared by the Stanford University-UCSF Evidence-based Practice Center under contract 290-02-
0017). AHRQ Publication No. 04(07)-0051-7. Rockville, MD: Agency for Healthcare Research and Quality.
June 2007. iii Ibid.
iv Ibid. i v Health Care Program for Children with Special Needs (2006 DRAFT). A public health model for health
care coordination services for children and youth with special health care needs. Denver, CO: Health Care
Program for Children with Special Needs, Colorado Department of Public Health and Environment.
Accessed at: http://www.cdphe.state.co.us/ps/hcp/form/carecoordination/carecoordination.pdf vi Ibid. vii Primary Care Partnerships (2007). Good practice guide for practitioners. A resource of the Victorian
service coordination practice manual. A statewide primary care partnerships initiative. State of Victoria,
Department of Human Services. Accessed at: www.health.vic.gov.au/pcps/publications. viii Walker, J.S., Bruns, E.J., VanDenBerg, J.D., Rast, J., Osher, T.W., Miles, P., Adams, J., & National
Wraparound Initiative Advisory Group (2004). Phases and activities of the wraparound process. Portland,
OR: National Wraparound Initiative, Research and Training Center on Family Support and Children’s
Mental Health, Portland State University. ix Ibid. v
x Ibid. v xi Ibid.
43
xii Palfrey, J.S., Sofis, L.A., Davidson, E.J., Liu, J, Freeman, L, & Ganz, M.L. (2004). The pediatric alliance for
coordinated care: Evaluation of a medical home model. Pediatrics, 113, 1507-1516. xiii Dougherty Management Associates, Inc. (2005). Children’s mental health benchmarking project fourth
year report. Lexington, MA: Author.