Family Voices Webinar with Autism NOW June 30, 2011

8/6/2019 Family Voices Webinar with Autism NOW June 30, 2011

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Promoting Family-to-Family ConnectionsTo Ensure Family-Centered Care

Autism NOWJune 30, 2011

Karen Anzola, Co-DirectorNational Center for Family/Professional Partnerships

Family Voices, Inc.


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OUR MISSION

Family Voices aims to achieve

family-centered care for all

children and youth with specialhealth care needs and/or

disabilities.

Through our national network, we provide familiestools to make informed decisions, advocate for

improved public and private policies, build partnerships

among professionals and families, and serve as a

trusted resource on health care.


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ABOUT US

We bring our children home

We help other families

We improve hospital polices

We believe every child has the right to go to school

We are fathers and advocates

We seek cultural competence

We become researchers

We live family-centered care

We improve state and federal policies

We encourage youth to speak out

We partner with government agencies

We train leaders


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OUR FAMILIES


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CONNECTING FAMILIES

Coming together is the

beginning.

Keeping together is progress.

Working together is

success.

~ Henry Ford


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OURMEMBERS

Family Voices works with andprovides support to family-led organizations and family

leaders in each state and theterritories.

State AffiliateOrganizations (SAOs)

OrganizationalMembers

Individual Members

Family-to-Family Health Information Centers (through

NCFPP project)


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OUR PROJECTS

The National Center for Family/Professional

Partnerships (NCFPP)

Kids As Self Advocates (KASA)

Improving Maternal (and Child Health)

Programs (so) All Children Can Thrive

(IMPACT)

The National Data Resource Center (DRC)


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PROJECT: KASA


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KASAMISSION STATEMENT

Kids As Self Advocates [KASA] is created by youth with disabilities for youth to educate

society about issues concerning youth with a wide spectrum of disabilities andhealthcare needs. KASA believes in supporting self-determination, creating support

networks and proactive advocacy for all youth with disabilities in our society.

For more information and resources, please visit www.fvkasa.org
http://www.fvkasa.org/http://www.fvkasa.org/


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Focused on maternal and child

health policies and programs for the

benefit of all children, including

children with special needs andtheir families. Includes:

Bright Futures for Families

Family Matters: Using Bright

Futures to Promote Health andWellness

Families and Title V

www.brightfuturesforfamilies.org

PROJECT: IMPACT
http://www.brightfuturesforfamilies.org/http://www.brightfuturesforfamilies.org/


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Data Resource Center for

Child & Adolescent Health

An interactive website that

allows access to data fromnational surveys about

children's health. Currently

the DRC contains information

about two surveys:

PROJECT: DRC

National Survey for Children with Special Health Care Needs

(NS-CSHCN)

National Survey of Childrens Health (NSCH)

www.childhealthdata.org
http://www.childhealthdata.org/http://www.childhealthdata.org/


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PROJECT: NCFPP

National Center for

Family/Professional Partnership

A cooperative agreement with

the Maternal and Child Health

Bureau (MCHB) providing

leadership in helping families

of children and youth with

special health care needs /disabilities and professionals

partner to improve care


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What are F2F HICs?

Nonprofit, family-staffed organizations, funded through MCHB, that

assist families of children and youth with special health care needs

(CYSHCN) and the professionals who serve them by providing:

Information, education, training, support and referralservices

Outreach to underserved / underrepresented populations

Guidance on health programs and policy

Collaboration with other F2F HICs, family groups, andprofessionals in efforts to improve services for CYSHCN

Evaluation and outcome assessment

NCFPP: F2F HICs


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How Do F2F HICs Help Families Partner in

Decision-Making?

F2F HICs develop trusting relationships with

families, helping them build confidence by

providing:

emotional support for families in crisis expert knowledge on health care access

relevant, up-to-date information on community resources

F2F HICs provide 1-1 advice and training on

family leadership development & communicating with providers

F2F HICs provide mentorship and opportunities for

systems level involvement in their state

F2F HICs share the family perspective and

build partnerships with professionals

NCFPP: F2F HICs


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What do families say about the 1-1 assistanceand training they receive?

80.99% are better able to partner with their childs

provider

89.79% are better able to navigate community

services 85.82% feel more confident in getting needed

services for their child

Family Voices of North Dakota have supported my whole family by awareness,

education, sibling support, medical information, resources, connections to otherfamilies and support, and just a voice to hear and listen. Everyday I go to mycomputer to receive the information and support I need to better the lives of all ofus in my family and the caregivers for AaronThe days that I feel lost and not

knowing where to turn to I know I can turn to Family Voices and they will help orfind someone or somewhere that can. - a mother

NCFPP: F2F HICs


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Exchange of ideas, innovative practices,

resources (over 250 resources shared by

F2Fs in Resource Repository)

Diverse and knowledgeable pool of experts

that address questions and issues raised by

other F2F HICs (listserv averages over 100

msg/month)

This is an incredibly resourceful community of learners. The staff as well as

colleagues from other states brings together an amazing scope of knowledge.- F2F HIC responder in 2010 Feedback Survey

Support & facilitation of F2F network for both spontaneous &structured peer-to-peer assistance:

NCFPP:Peer-to-Peer Organizational Support


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1-1 technical assistance from responsive,knowledgeable team of leaders:

2 Co-Directors with experience and linksto national networks in MCH

7 regional and 2 national field TAcoordinators with on-the-job family leaderexperience

National-based staff expertise in specific

areas, such as partnerships, policy,reporting, grant management

Collaboration with youth-ledKASA project

NCFPP:1-1 Assistance


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National & Regional Field Coordinatorsprovide 1-1 assistance, conference calls/webinars, in-person meetings by region.


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Trainings in a variety of subjects provided throughmultiple venues

Conference calls and webinars provide F2F HICS with training

opportunities in such areas as data collection, Affordable Care Act,

New Performance Measures, etc.

NCFPP helps facilitate monthly project officer calls

In-person trainings are provided at biennial regional meetings and

national conferences

NCFPP:Trainings


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NCFPP creates tools and resources tohelp family leaders and family-led

organizations build their organizational

capacity and achieve their mission to help

families.

Washington Update, disseminated

weekly, provides up-to-date information

on policy.

A monthly e-newsletter, Fridays Child,features innovative practices of FV State

Affiliates and F2F HICs, news from

partners, and resources

from other organizations.

NCFPP:Tools & Materials


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2010 Feedback Survey responses on how the NCFPP has had aninfluence in preparing families to work with providers:

We share materials from the NCFPP that help to prepare families to moreeffectively partner with their providers

Through discussions about the process of building effective partnership and

discussion about medical home and strategies to access medical home

NCFPP gives us the training and education to be able to then educate families

By helping increase the knowledge of our staff so that they can then pass thisknowledge along to families

Resources from the NCFPP have given us information to share with families andinfluences the manner in which we train and prepare families in leadershiproles

FCC Tools to help us build connections with medical home practices anddevelop goals to work towards

NCFPP:Impact on F2F HICs Families Partnering


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Analysis and summary of F2F HIC datato highlight success of 1-1 assistance

and training to build

family/professional partnerships

Customizable state-specific F2F HIC

data reports combining information

from National Survey of CSHCN

Documentation of F2F HIC Promising

Practices

Documentation of Evidence Base for

Family/Professional Partnerships

(Summer, 2011)

NCFPP:Advancing Partnerships and F2F Model

FAMILY VOICES & th NCFPP


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Link you with family leadership within every state

funded F2F HICs and Family Voices State Affiliates

Provide tools and resources developed by family and youth

leadership on family centered care, family professionalpartnerships, youth leadership/self advocacy, Title V and more

Provide opportunities to shareyour work through our listservsand online newsletter Fridays Child

Explore potential joint conference calls/webinars

Explore potential training opportunities

FAMILY VOICES & the NCFPP:What We Can Do For You


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2340 Alamo SE, Suite 102, Albuquerque, NM 87106

Family Voices, Inc.2340 Alamo SE, Suite 102, Albuquerque, NM 87106

Phone: 505.872.4774 Toll-Free: 888.835.5669 Fax: 505.872.4780

Family Voices: www.familyvoices.org

KASA: www.fvkasa.org

IMPACT: www.brightfuturesforfamilies.org

DRC: www.childhealthdata.org

NCFPP: www.fv-ncfpp.org
http://www.fv-ncfpp.org/http://www.familyvoices.org/http://www.fvkasa.org/http://www.brightfuturesforfamilies.org/http://www.childhealthdata.org/http://www.fv-ncfpp.org/http://www.fv-ncfpp.org/http://www.fv-ncfpp.org/http://www.fv-ncfpp.org/http://www.childhealthdata.org/http://www.brightfuturesforfamilies.org/http://www.fvkasa.org/http://www.familyvoices.org/

Documents

Family Voices Webinar with Autism NOW June 30, 2011