Connecting and Networking

Caregiving Support/Information

People-First Language

People-First Language: The words you use can have a powerful impact. Using respectful person-first language puts the person before their disability and helps eliminate old, prejudicial, and hurtful descriptors. Using people-first language helps promote positive change in how we see others and ourselves.

Exceptional Parent (EP): EP is an outstanding online multi-media company dedicated to be the ultimate resource for everything related to the special needs community. Providing practical advice, emotional support, current trending news and educational information to empower caregivers and families of children and adults with disabilities and special healthcare needs. As well as to the physicians, allied health care professionals, and educational professionals who are involved in their care and development.

Parenting Special Needs Magazine: Parenting Special Needs Magazine’s mission is to provide parents and caregivers of children with special needs of all ages and stages of life, both information and inspiration. The Magazine provides practical tips, real-life experiences, sibling support, a variety of information and resources ranging from shoelaces to IEP meetings to Life Planning.

Autism Speaks:  Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of people with autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions. Resource tool kits are available for download.

Family Caregiver Alliance – National Center on Caregiving: The Family Caregiver Alliance strives to improve the quality of life for family caregivers and the people who receive their care. Caring for Yourself.

Advocacy Organizations / Trainings

Advocacy Specialists – Missouri Division of Developmental Disabilities (DD) – Regional Office: Regional Advocacy Specialist positions were created through the Division of DD and the Regional Offices to help expand and enhance self-advocacy and self-determination skills throughout Missouri. The Advocacy Specialists are responsible for providing leadership, trainings, role modeling, and mentoring of self-advocacy to individuals in their assigned region.

Missouri People-First: Missouri People-First is a self-advocacy organization that was formed by, is run by, an exists for people with developmental disabilities in the state of MO. People-First promotes equality for people with disabilities so they can live the life they want in the community. Area chapters exist throughout the state.

Self-Advocates Becoming Empowered (SABE): SABE is the United States’ national self-advocacy organization. SABE works to ensure that people with disabilities are treated as equals and that they are given the same decisions, choices, rights, responsibilities, and chances to speak up to empower themselves. Membership consists of representatives from every state in the US.

The Riot! Newsletter: The Riot, which is housed at the Human Services Research Institute (HSRI), is a newsletter created by HSRI staff and self-advocates from around the country. The newsletter features topics such as art, games, advocacy tools, and much more.

American Association on Intellectual and Developmental Disabilities (AAIDD): AAIDD is a leading professional organization in the field of intellectual and developmental disabilities. AAIDD offers cutting-edge educational opportunities to the global disability community through webinars, on-line trainings, and by hosting an annual meeting. Many materials are archived and available to watch at no cost.

Missouri Chapter

The Arc of Missouri: is a grassroots organization working to support and empower persons with intellectual and development disabilities (I/DD) and their families through advocacy, education, expanding individual choices and promoting community inclusion. The Arc of MO frequently provides educational workshops on topics that effect individuals with intellectual and developmental disabilities.

The Missouri Developmental Disabilities Council (MODDC): The MODDC is a federally- funded, 23-member, consumer-driven council appointed by the Governor.  Its mandate is to assure that individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration  in all aspects of community life.

Real Voices Real Choices Conference - Missouri Department of Mental Health: The annual conference is an opportunity for individuals and families living with mental illness, developmental disabilities, or are in recovery for substance use disorders. Individuals, family members, friends, self-advocates, and persons in recovery come together to learn about programs, service issues, opportunities, and self-advocacy. The conference helps foster growth and empowerment, as well as finding tools to be successful in the community.

Leadership/Volunteer Opportunities

Quality Advisory Council (QAC) - Missouri Division of Developmental Disabilities (DD): The QAC consists of members who are individuals with developmental disabilities, family members, and representatives from various agencies. The purpose of the QAC is to provide input and recommendations to the Division of DD on the development of and enhancements to the comprehensive quality management system of the DD service continuum through data analysis and feedback.

Parent Advisory Council (PAC): The Missouri Department of Mental Health (DMH) funds five Regional Autism Projects, which collectively provide autism services statewide. Each Autism Project has a Regional Parent Advisory Council (PAC) made up of parents or adults with autism. Regional PACs serve as a statewide network of advocates working together to influence policy and services for individuals with autism. PAC members offer advice, consultation, and recommendations to the Division of DD regarding policy, budget, services, and service providers, among other things.

The Governor´s Council on Disability (GCD): The GCD promotes full participation and inclusion of the nearly 1 million Missourians with disabilities in all aspects of community life by educating citizens, businesses, schools, universities, and others of their rights and responsibilities under the Americans with Disabilities Act.

Youth Leadership Forum (YLF) - Missouri Governor’s Council on Disability (GCD): The YLF is a unique career leadership-training program for high school students with disabilities, ages 16 – 21. Youth delegates are selected from their local communities to cultivate leadership, citizenship, social, and career development skills.

Legislative Education Project (LEP) - Missouri Governor’s Council on Disability (GCD): The Governor’s Council sponsors the LEP during legislative sessions. The LEP provides opportunities to become more active in creating positive public policies for people with disabilities. The LEP is available for individuals/organizations that are a novice to the legislative process or need additional learning about the Missouri legislative process regarding disability policies or proposed legislation that impact people with disabilities.

The Missouri DD Council (MODDC): MODDC is a unique entity bringing together people with diverse perspectives who are appointed by the Governor. The Council is mandated through Public Law 106-402 to assure that 60 percent of its membership consists of individuals with developmental disabilities and family members. Membership is made up of people with developmental disabilities, family members, representatives of state agencies and service providers, advocates, and other interested citizens.

Partners in Policymaking – Missouri Developmental Disabilities Council (MODDC): Partners in Policymaking is a leadership-training program for adults with disabilities and parents of children with developmental disabilities.  The program teaches leadership skills and techniques to develop positive partnerships with elected officials, school personnel, and other individuals who make policy decisions about services that you and/or your family use.

Missouri Family to Family (MOF2F) Family Leadership & Volunteer Network: The Leadership and Volunteer network provides opportunities for parents, self-advocates, other family members, professionals, or other interested individuals to “volunteer” their time to give back to the disability community.

Fostering Self-Determination

Self-Determination – Missouri Division of Developmental Disabilities (DD): The Missouri Division of DD supports and encourages self-determination and follows five key principles of self-determination.

National Center on Secondary Education and Transition (NCSET): NCSET was established to create opportunities for youth with disabilities to achieve successful futures. NCSET provides information and resources through publications focused on a variety of topics. Self-determination.

Fostering Self-Determination among Children and Youth with Disabilities – Ideas from Parents for Parents:  The Waisman Center at the University of Wisconsin-Madison is dedicated to advancing knowledge about human development, developmental disabilities, and neurodegerative diseases through research, training, providing services, and promoting outreach to the community.

National Gateway to Self-Determination: The National Gateway to Self-Determination is a clearinghouse for resources, training, and information on promoting self-determination. The web portal provides information for self-advocates, professionals, policy-makers, families and the general public on the current best practices and evidence-based activities in enhancing self-determination in the lives of people with intellectual and developmental disabilities.

Peer-to-Peer Matching

Missouri Family-to-Family (MOF2F) Peer Mentor Program: MoF2F Peer Mentor Program is Missouri’s parent-to-parent/peer support network for parents of children with developmental disabilities or special healthcare needs, individuals with disabilities, and professionals. You may have questions and concerns about dealing with your child’s needs and your own feelings. You are not alone. We have been there. Let us be there for you.

Parent-to-Parent USA (P2P USA): P2P USA is a national non-profit organization that promotes excellence in parent-to-parent programs across the nation. Parent-to-Parent programs have been providing emotional and informational support to families.  We know there is strength and power in connecting parents of children (throughout lifespan) with disabilities or special health care needs, for a wide range of conversations that will be helpful throughout their parenting experiences.

Sibling Support

The Sibling Support Project: The Sibling Support Project is a national program dedicated to the life-long and ever-changing concern of millions of siblings of people with special health, developmental, and mental health concerns.

http://siblingleadership.org/: The SLN promotes a broad network of siblings who share the experience of disability and people concerned with sibling issues by connecting them to social, emotional, governmental, and provisional supports across the lifespan, which enables them to be effective advocates and change agents.