Road To Success...Within Our Reach

MCHB funded National CentersAchieving Community-Based System of Services

for Children and Youth with Special Health Care Needs

Family Voices Conference

Moving Forward: The Future of Health Care

for Children and Youth

Washington, DC

May 26, 2007

Addressing Federal Goals

  Amended Legislation for Title V of the Social Security Act (OBRA 1989):

“Facilitate the development of community-based systems of services”

Healthy People 2010 Objective 16.23 “Increase the proportion of States and territories that

have service systems for children and youth with special health care needs (CYSHCN)”

 

President’s New Freedom Initiative (NFI) Responsibility given to HRSA for developing and implementing a plan to reduce barriers to community services and independent living for CYSHCN and their

families

The MCHB Mission

The mission of the Maternal and Child Health Bureau

(MCHB) is to provide national leadership, in

partnership with key stakeholders, to improve the

physical and mental health, safety and well-being

of the maternal and child health (MCH)

population which includes all of the nation’s

women, infants, children, adolescents, and their

families, including fathers and children with

special health care needs.

The MCHB Vision/Principles (excerpts)

There is equal access for all to comprehensive,

quality health care provided in a supportive,

culturally competent environment, which is

family-centered and community-based.

All women and children, especially children with

special health care needs, are linked to a

comprehensive, community-based service

system through a medical home.

The MCHB Vision/Principles (excerpts)

Family and community participation and

engagement are key to the development

of effective, quality health systems and

services.

What Is A Community System?

Graphic: Champions For Progress National Center/EIRI

Building A Community System: 6 Core Outcomes

Strategies for Success: Grants

State Level- State Implementation D-70/NFI- F2F HIC’s- TBI, etc.

National• National Centers & Cooperative Agreements

• Monitoring and Measuring

- National Surveys for CSHCN - Performance Measures

• Partnerships

Got Data?

www.mchb.hrsa.gov/data/

HRSA/MCHB Title V Information Systems (TVIS)

Got Data?

www.cshcndata.orgData Resource Center National Survey for CSHCN

Road To Success...Within Our Reach

MCHB funded National Centers

What we do ……..

How we can help YOU!

www.familyvoices.org

National Center forFamily & Professional Partnerships

• National Network of Family Leaders - Expertise in health care policy & practices - Family Leaders in every state - Funded family-run F2F HICs, plus volunteers

• Families as Partners - Promoting partnerships at all levels of care to ensure family centered care (individual child to the program and policy level)

Who We Are ………..

National Center forFamily & Professional Partnerships

• Information & Resources: Info for families to help other families Materials: Website, hard copy materials

• Technical Assistance - Topical Calls - eNews - Onsite Training (state, regional, national)

• Legislative Action Center - learn about current issues, updates and how to participate in policy issues

How We Can Help YOU ………..

National Center forFamily & Professional Partnerships

• State Activities: Connections with FV activities within your state

• Youth Leadership: KASA - National Network for youth/young adult self advocacy

• Evidenced Based: Committed to develop information to document the value of family partnership and family centered care

www11.georgetown.edu/research/gucchd/nccc

National Center

for Cultural Competence (NCCC)

Who We Are ………..

The NCCC receives Federal funds to support family

organizations, and state Title V programs

concerned with CYSHCN and their families to plan

for, implement and evaluate the services and

supports that they provide for all families.

National Center

for Cultural Competence (NCCC)

Who We Are ………..

Special emphasis is placed on helping

polices, services and supports to meet the

unique needs of families from diverse

cultural, linguistic, geographic, gender,

religious, and racial backgrounds.

National Center

for Cultural Competence

Who We Are ………..

Mission ………. is to increase the capacity of

health and mental health programs to design,

implement, and evaluate culturally and

linguistically competent service delivery systems.

National Center

for Cultural Competence

Foundations of Cultural & Linguistic Competence

- Definitions - Compelling Need - Policies to Advance and Sustain

• Conceptual Frameworks/Models

• Guiding Values & Principles

• Tools and Processes for Self-Assessment

National Center

for Cultural Competence

How we can help You ………..

• Provide training, TA and consultation

• Conduct virtual meetings

• Facilitate community of learner activities

• Link individuals and organizations

• Family & Youth Perspectives

National Center

for Cultural Competence

How we can help You ………..

• Resources, Guides & Tools

- Guide for Advancing Family-Centered and

Culturally and Linguistically Competent Care

- Cultural and Linguistic Competence Policy

Assessment (CLCPA)

• Topical Conference Calls

• Consultant Pool

Medicalhomeinfo.org

National Center of Medical Home Initiatives

INSERT LOGO HERE

Who We Are…

• Mission: to work in cooperation with federal agencies, particularly the Maternal and Child Health Bureau to ensure that CYSHCN have access to a medical home

• A Medical Home is not a building,house, or hospital, but rather an approach to providing comprehensive primary care.

Elements of Medical Home

Care that is:• Accessible• Family-centered• Comprehensive• Continuous• Coordinated• Compassionate• Culturally-effective

and for which the primary care provider shares

responsibility with the family.

National Center of Medical Home Initiatives

National Center of Medical Home Initiatives

How We Can Help YOU ………..

• Finding local, state, & national resources

• Strategies to support medical homes

• Tools - screening and surveillance

• Training manuals, marketing materials, power pointslides, and resources

• Monthly Listserv

June 29 to July 1, 2007Orlando, FL

www.medicalhomeinfo.org

www.medicalhomeinfo.org/FOP%20Brochure_1.pdf

www.hdwg.org/catalyst/index.php

State-at-a-Glance Chartbook on Coverage and Financing of Care for Children and Youth with Special Needs

Catalyst Center for Improving Financing of Care for CYSHCN

We provide support to the efforts of

stakeholders at the federal, state and local

levels in assuring adequate health

insurance coverage and financing to meet

the diverse needs of children and youth

with special health care needs and their

families.

Who We Are ………..

Catalyst Center for Improving Financing of Care for CYSHCN

The goals of the Catalyst Center include

empowering families and other

stakeholders to share a common language

and knowledge base around financing

issues. 

Catalyst Center for Improving Financing of Care for CYSHCN

Our work is organized around four central domains:

- reducing uninsurance

- reducing underinsurance

- increasing financing strategies for wrap-around supports

- increasing strategies that promote the infrastructure of care.

Catalyst Center for Improving Financing of Care for CYSHCN

How We Can Help YOU ………..

Short-term TA via phone or e-mail:

- Questions/health care financing policy

- Locating data sources

- Connecting to solve complex financing

Catalyst Center for Improving Financing of Care for CYSHCN

How We Can Help YOU ………..

- Monthly topical conference calls

- Financing Toolkit of publications

- Expand financing knowledge base

infanthearing.org

National Resource Center for Early Hearing Detection and Intervention

Every day, 33 babies (or 12,000 each year)

are born in the United States with

permanent hearing loss.

With 3 of every 1,000 newborns having a

hearing loss, it is the most frequently

occurring birth defect.

National Resource Center for Early Hearing Detection and Intervention

Mission ………..

To ensure that all infants and toddlers with

hearing loss are identified as early as

possible and provided with timely and

appropriate audiological, educational, and

medical intervention, an early hearing

detection and intervention

National Resource Center for Early Hearing Detection and Intervention

Three basic components

- Newborn screening

- Audiological diagnosis

- Early intervention

National Resource Center for Early Hearing Detection and Intervention

How We Can Help YOU ………..

- TA

- Resource /promising practice development

- Dissemination

- Public awareness activities

- Education and training

- Policy and financing initiatives

- Evidence-based data for quality assurance.

http://www.championsinc.org

Champions for Inclusive CommunitiesChampions for Progress

Who We Are…..

Champions for Inclusive Communities is

the National Center responsible for

Performance Measure #4

“Services are organized so families can

use them easily and are satisfied with

the services they receive.”

Champions for Inclusive CommunitiesChampions for Progress

How We Can Help YOU ………..

• Provide models of team building, coalitions and family-professional partnerships that are empirically tested

• Highlight community efforts across the country that have proven, replicable models

• Help State-Community teams connect with ongoing initiatives for funding and support

www.hrtw.org

Healthy & Ready to Work National Resource Center

Health Impacts All Aspects of Life

• To stay healthy, young people need an understanding of their health and to participate in their health care decisions.

• We provide information and connections to health and transition expertise nationwide – from those in the know, doing the work and living it!

The Ultimate Outcome: Transition to Adulthood

Healthy & Ready to Work National Resource Center

Four cornerstones of our work

• Youth Involvement

• Title V Leadership

• Medical Home & Transition

• Interagency Partnerships

The Ultimate Outcome: Transition to Adulthood

Healthy & Ready to Work National Resource Center

Health Care Transition Takes Time & Skills

• Increasing Youth Involvement

• Health & Wellness Baseline

• Maintaining Health Insurance

• Documenting Disability

Info & TA …for Leaders, Title V & Providers

The Ultimate Outcome: Transition to Adulthood

Healthy & Ready to Work National Resource Center

• Web-based Tips & Tools (use and adapt)

• Provide templates, text, materials

• TA: Topical Calls, Email, Phone, On-site

• Review drafts

• Transition Data: Block Grant NMP6 & SSI

How We Can Help You…….

The Ultimate Outcome: Transition to Adulthood

How YOU can help Us!

How YOU can help US!

• Contact us: Tell us what you need (see check off forms on your tables)

• Keep us updated: Help us understand the challenges you & the families face

• Share your skill areas: Offer to review drafts, test tools with families, identify resources for Centers’ materials, newsletters and websites.

How YOU can help US!

• Share your stories and experiences

• Identify programs and organizations

that are doing good things (promising

practices) that reflect an understanding of

and honor different cultural beliefs and

practices.

How YOU can help US!

• Get involved in Centers’ activities - Participate in questionnaires and surveys - Join Topical calls – provide feedback - Join list servs to learn and later to share ideas - Offer to join our activities, trainings as family faculty, serve on Advisory Councils

• Speak up for what you know is rightPoint out what is not correct …AND…provide solutions and resources to address the issue.

Every change begins with the actions of one

Let’s Talk……Questions?