Family Voices of Missouri, Inc.

Contact Information

Carla Sandwell
(417) 619-2609
familyvoicesmo@gmail.com

Family Voices of Missouri, Inc. (FVMO) shares information and resources with families of CYSHCN and the professionals who serve them in a variety of ways such as: listservs and web based information; newsletters and brochures; state, academic, public and private agency development; and family and professional leadership training on federal and state policy, family advocacy and partnering, child and family development, cultural diversity and competency, working with families and CYSHCN, child abuse and neglect prevention, and physical, mental and oral health.

HIGHLIGHT: Focus on Mental Health Capacity Building Partnerships

The National Assembly on School-Based Health Care (NASBHC), through a collaborative agreement with the University of Missouri-Columbia, is partnering with FVMO & other stakeholders to embark on a new initiative to build capacity of state and local education agencies (SEA’s & LEA’s) to provide effective and sustainable school mental health services to young people. The goal of this initiative is to disseminate model mental health policies, programs & services to SEA’s/LEA’s in order to improve access to high quality, school-based mental health services. Missouri is one of only four states selected for this ground- breaking project.

With support from the Arthur Center, a community mental health partner, a weekly digest is electronically circulated statewide for parents and professionals alike. It is filled with information ranging from current legislation to parenting tips to spotlighting a mental health topic and much more.

BUILDING PARTNERSHIPS: Families and Policymakers
Through a partnership between stakeholders, a massive effort is underway to pass Missouri’s Senate Bill 621 (SB 621). SB621 changes the name of the “Division of Mental Retardation and Developmental Disabilities” to the “Division of Developmental Disabilities.” Removing the term “mental retardation” advances the support of People First language in Missouri, a national trend and major focus for FVMO.

WORKING TOGETHER FOR CYSHCN:
A sample of some of the activities in which FVMO partnered with others in 2006:

“ “Partnering with family members is essential to creating sound public policy that supports systems that are effective and efficient. It is a partnership that we cannot afford to do without.”
- CSHCN DIrector

Participated in Missouri’s CYSHCN Family Advisory Council, Family Partnership
Assisted with creation and introduction of federal legislation titled Shaken Baby Syndrome Prevention Act of 2007
Informed families and legislators of disability awareness legislation, meeting with legislators in Missouri and Washington, D.C.
Worked with Friends of the Thompson Center for Autism and Neurodevelopmental Disorders
Served on the Missouri Assistive Technology Council (MoAT)
Educated elementary education and child development college majors on “how to” work with families and CYSHCN

Useful Links

Assistive Technology:

Kids Assistive Technology (KAT): www.at.mo.gov/kat.shtm
Missouri AT Website: www.at.mo.gov/
Power Up Conference: www.at.mo.gov/powerup/index.shtm
Show-me Loans: www.at.mo.gov/loans.shtm
Swap ‘n Shop: www.at.mo.gov/swapnshop/swapnshop.shtm
Telecommunications Access Program: www.at.mo.gov/TAP.shtm

Child Care for Children with Special Needs:

Missouri Child Care Resource & Referral Network: http://moccrrn.org/
Show-me Child Care: www.dhss.mo.gov/ChildCare/
Child Care Aware: www.childcareaware.org/en/
National Association of Child Care Resource & Referral Network: www.childcareaware.org/en/ASAP/decision_tool.htm

Early Intervention:

First Steps: http://dese.mo.gov/divspeced/FirstSteps/
DESE Early Childhood Special Education: www.dese.mo.gov/divspeced/EffectivePractices/ECSEpage.htm
Parents as Teachers: www.parentsasteachers.org
Practical Parenting Partnerships: www.pppctr.org/default.asp

Education for Individuals with Special Needs:

DESE: http://dese.mo.gov/divspeced/
Procedural Safeguards: http://dese.mo.gov/divspeced/Compliance/Proc_Safe/ProcSafe_Oct2006.pdf
Guide to MAP Accommodations and the MAP-A: www.pppctr.org/mapa.asp
Complaint System: www.dese.mo.gov/divspeced/Complaint_System/index.htm
Be Involved in Your Child’s Education: www.pppctr.org/BeInvolved.pdf
LD of Missouri: www.ldamo.org/
MO-PIRC: www.nationalpirc.org/directory/MO-31.htm
MO Protection & Advocacy: www.moadvocacy.org/
Mpact: www.ptimpact.com/
No Child Left Behind: www.dese.mo.gov/divimprove/nclb/index.htm
OSEP (Office of Special Education Programs): www.ed.gov/about/offices/list/osers/osep/index.htm
OSERS (Office of Special Education and Rehabilitation Services: www.ed.gov/about/offices/list/osers/index.htm
Partnering with your Child’s School: www.hscfoundation.org/aboutus/publications/partnering_with_schools_english_guide.pdf
Special Education Technical Assistance and Dissemination Network: www.ed.gov/parents/needs/speced/resources.htm

Emergency Preparedness & Disaster Readiness for Families:

Effective Emergency Preparedness: Addressing the Needs of Employees with Disabilities: http://centralmissouri.mo.networkofcare.org/dd/library/detail.cfm?id=1574&cat=search
Mo. Dept of Mental Health: www.dmh.mo.gov/diroffice/disaster/disaster.htm
National Fire Protection Association: www.nfpa.org/categoryList.asp?categoryID=824&cookie%5Ftest=1
Personal Emergency Planning for students with disabilities: www.nfpa.org/assets/files//PDF/Fact%20sheets/EvacStudentDisabilities.pdf

Estate Planning for Children with Special Health Care Needs:

Lifecare Planning, Inc. (KC Area): www.lifecareplanningkc.org/
MetDesk:
Mike Allen (KC Area): www.kcnef.com
Todd Gentry (St. Louis Area): www.jtgentry.metlife.com/

Family-Centered Programs & Support: