+ All Categories
Home > Documents > Colorado Care Coordination Committee Summary of Initiative …€¦ ·  · 2016-12-15Colorado Care...

Colorado Care Coordination Committee Summary of Initiative …€¦ ·  · 2016-12-15Colorado Care...

Date post: 10-Apr-2018
Category:
Upload: lamngoc
View: 216 times
Download: 3 times
Share this document with a friend
62
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 Education JFK Partners/University of Colorado School of Medicine [email protected] 303/724-7635
Transcript

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

HooverS
Typewritten Text
HooverS
Typewritten Text
HooverS
Typewritten Text
HooverS
Typewritten Text
DRAFT
HooverS
Typewritten Text
HooverS
Typewritten Text
March 2011

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

1

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.

2

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

4

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

5

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,

6

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

8

• 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

10

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;

11

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.

12

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.

14

APPENDICES

15

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.

[back to Table of Contents]

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

[back to Table of Contents]

5

[YOUR AGENCY’S NAME]’S MISSION,

VALUES, AND PRINCIPLES

Please use this space to include your agency’s mission, values, principles, etc.

[back to Table of Contents]

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

[back to Table of Contents]

7

Figure 1.

[back to Table of Contents]

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.

[back to Table of Contents]

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.

[back to Table of Contents]

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

[email protected]

Colleen Head

Community Coordinator, Early

Intervention Colorado, Division for

Development Disabilities

Colorado Division of Human Services

[email protected]

Mark Kling

Executive Director, Family Resource

Centers

[email protected]

David Lack

Executive Director, Clinica Tepeyac

[email protected]

Miranda Meadow

Projects Coordinator, Colorado

Children’s Healthcare Access Program

[email protected]

Steven Rosenberg, PhD

Associate Professor, Clinical Psychology

Division

University of Colorado Denver

[email protected]

Julie Schilz, RN, BSN

Manager, IPIP and PCMH

Colorado Clinical Guidelines

Collaborative

[email protected]

M. Kay Teel, PhD, LCSW

Instructor, JFK Partners

Department of Psychiatry, School of

Medicine

University of Colorado Denver

[email protected]

Cathy White, RN, MSN

Director, School Health Initiatives

Colorado Department of Public Health

and Environment

[email protected]

10

Staff

Jean M. Cimino, MPH

State Coordination Consultant, Linking

and Aligning, JFK Partners

University of Colorado

[email protected]

Sarah Hoover, M.Ed.

Senior Instructor, JFK Partners

University of Colorado Denver

[email protected]

Cordelia Robinson Rosenberg, PhD, RN

Director, JFK Partners

University of Colorado Denver

[email protected]

Claudia Zundel, MSW

Division of Behavioral Health

Colorado Department of Human

Services

[email protected]

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

[back to Table of Contents]

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

[back to Table of Contents]

12

TOOLKIT RESOURCES

A. Assessment

B. Quality Assurance

C. Permission for Information Sharing

D. The Care Plan

E. Community-Based Resources &

Referrals

[back to Table of Contents]

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.

[back to Toolkit Resources]

[back to Table of Contents]

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.

[back to Toolkit Resources]

[back to Table of Contents]

16

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.

[back to Toolkit Resources]

[back to Table of Contents]

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

[back to Toolkit Resources]

[back to Table of Contents]

19

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).

[back to Toolkit Resources]

[back to Table of Contents]

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

[back to Toolkit Resources]

[back to Table of Contents]

21

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.

[back to Toolkit Resources]

[back to Table of Contents]

22

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

[back to Toolkit Resources]

[back to Table of Contents]

24

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.

[back to Toolkit Resources]

[back to Table of Contents]

25

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.


Recommended