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Support Groups & Advocacy

Local



• Access II - Independent Living Center: For Multiple Counties
  Promotes a positive change in attitudes about disability and persons with disabilities and encourages greater independence for persons with disabilities within the communities. As a center for independent living, Access II is committed to the provision of a full range of independent-living services.
  
  
• Encouraging Families with Exceptional Children Together (EFECT): For Multiple Counties
  Empowers families of children with disabilities by providing education, information, encouragement, support and pathways to services. EFECT presently serves more than 1,200 individuals in the Greater Kansas City area.
  
  
• Higginsville Habilitation Center (HHC): For Multiple Counties
  Supports individuals with developmental disabilities who require intensive habilitation and behavior supports in order to return to community settings. HHC is one of six state-operated residential facilities administered by the Division of Mental Retardation and Developmental Disabilities (MRDD), Missouri Department of Mental Health. It provides specialized residential support services and primarily serves the more severely disabled, behaviorally disordered, court or criminally committed and medically fragile individuals.
  
  
• Jackson County: Children’s TLC
  Offers pre-academic, social, physical and emotional support to children who are developmentally delayed, autistic or deaf. A home-based program is also available.
  
  
• Metropolitan Council on Developmental Disabilities: For Multiple Counties
  Believes all people with developmental disabilities have fundamental rights to an opportunity for them or their families to choose and to participate in lifestyles that enable them to live, work and play in their own communities; and to receive an appropriate academic and functional education and the opportunity to be participating members of their communities. Its advocacy and service efforts support the individual and family as they nurture and support each other in fulfilling their goals and dreams.
  
  
• National Alliance for the Mentally Ill of Greater Kansas City: For Multiple Counties
  Educates families and the public regarding issues of importance to those with mental illness and their families. Some of the programs are geared toward autism and pervasive developmental disorders, attention deficit/hyperactivity disorder and other severe and persistent mental illnesses that affect the brain.
  
  
• Project Access: For Multiple Counties
  Provides support and technical assistance to school districts serving students with autism. Staffed with resource specialists in autism, Project Access offers two major types of services to Missouri public schools: professional development opportunities and two tiers of autism consultation. For Kansas City Regional residents, click on ABA Consultants on the left and find Kansas City or Central – Warrensburg.
  
  
• UMKC Institute for Human Development: For Multiple Counties
  Improves the quality of life for persons with developmental disabilities by promoting community inclusion, community membership, independence, productivity and social participation and individualized supports for persons with developmental disabilities and their families.
  
  
• Whole Person: For Multiple Counties
  Provides services to support individuals with disabilities to live independently. These services include information & referral, education, benefits and peer counseling.
  
  

State/National



• Assistive Technology Network
  Developed by The California Foundation for Independent Living Centers under contract with the California Assistive Technology System (CATS). Provides advocacy, resources and education.
  
  
• Association on Aging with Developmental Disabilities
  Provides support to older (generally ages 45 years and up) individuals with developmental disabilities so they can maintain their independence and be active members of their communities. Supports include education, referral, transition planning, retirement groups, and in-home support.
  
  
• Autism Education Network
  A Web site created to raise awareness about the importance of effective education programs and to help parents secure appropriate special education services for their children with autism, dedicated to connecting parents and professionals through the internet to influence and improve education policy and programs for individuals with autism.
  
  
• Autism Network International
  A self-help and advocacy organization for people with autism, run by people with autism.
  
  
• Autism Speaks
  Seeks to change the future for all who struggle with autism spectrum disorders, and is dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
  
  
• Children's Hemiplegia and Stroke Association
  A nonprofit organization, offering support and information to families of infants, children, and young adults who have hemiplegic cerebral palsy, hemiplegia, hemiparesis, prenatal stroke, childhood stroke, infant stroke, perinatal stroke, neonatal stroke, in utero stroke, and stroke in neonates.
  
  
• Consortium for Citizens with Disabilities
  A coalition of approximately 100 national disability organizations working together to advocate for national public policy that ensures the self determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society.
  
  
• Down Syndrome Guild of Kansas City
  A non-profit volunteer organization whose mission is to provide support and resources for individuals with Down syndrome and their families. The Guild seeks to provide the entire community with information and education to broaden awareness and foster positive attitudes regarding people with Down syndrome.
  
  
• Down’s Syndrome Association of Greater St. Louis
  The mission of the Down Syndrome Association of Greater St. Louis is to benefit the lives of people with Down syndrome and their families through individual and family supports, information, public awareness and advocacy.
  
  
• Easter Seals Missouri
  Seeks to help individuals with disabilities and special needs, and their families, live better lives. Advocates for the passage of legislation to help people with disabilities achieve independence.
  
  
• Epilepsy Foundation
  A non-profit organization dedicated to the welfare of people with epilepsy, with a mission to work for children and adults affected by seizures through research, education, advocacy and service.
  
  
• Epilepsy in Young Children
  Intended to support parents and other caregivers of children with epilepsy.
  
  
• Epilepsy Support Group
  EPILEPSY-L is an E-mail based support group (discussion list) for people with epilepsy and those who care about and for them. People with epilepsy (PwEs), parents of children with epilepsy, family and friends of PwEs, and health professionals who work with PwEs are all welcome to join.
  
  
• Exceptional Parent Magazine
  Provides information, support, ideas, encouragement and outreach for parents and families of children with disabilities, and the professionals who work with them.
  
  
• Fragile X Foundation
  Unites the Fragile X community to enrich lives through educational and emotional support, promote public and professional awareness, and advance research toward improved treatments and a cure for Fragile X.
  
  
• Governor's Council on Disability
  Promotes full participation of Missourians with disabilities in all aspects of community life by educating employers and employees of their rights and responsibilities under the Americans with Disabilities Act (ADA). Maintains communication with disability advocates and service providers to disseminate information and receive feedback on problems affecting people with disabilities in order to recommend policy improvements.
  
  
• Learning Disabilities Association of Missouri
  Provides information and support to parents, learning disabled individuals and professionals. Monitors and advises on special education legislation at the federal and state levels. Advocates the need for appropriate and effective teacher training.
  
  
• March of Dimes: Missouri Chapter
  Seeks to improve the health of babies by preventing birth defects, premature birth, and infant mortality. This mission is carried out through research, community services, education and advocacy to save babies' lives. March of Dimes researchers, volunteers, educators, outreach workers and advocates work together to give all babies a fighting chance against the threats to their health: prematurity, birth defects and low birth weight.
  
  
• Missouri Assistive Technology
  Works to increase access to assistive technology for Missourians with all types of disabilities, of all ages.
  
  
• Missouri Association of Sheltered Workshop Managers
  Represents employment specialists for people with disabilities in Missouri. Advocates for people with disabilities and acts as a catalyst for development of other needed services and supports. Instrumental in the support and passage of voter authorized county tax levies to assist people with developmental disabilities providing for continued support of the local workshop and expanded service opportunities for people with disabilities in their local community.
  
  
• Missouri Association of the Deaf
  The Missouri Association of the Deaf (MoAD) is the oldest and largest consumer based non-profit organization of deaf and hard of hearing people in the state of Missouri. MoAD was founded in 1904 by the alumni of the Missouri School for the Deaf for the advancement of the deaf and incorporated in 1907.
  
  
• Missouri Commission for the Deaf and Hard of Hearing
  Functions as an agency of the state to advocate for public policies, regulations, and programs to improve the quality and coordination of existing services for individuals with hearing loss, and to promote new services whenever necessary. To these ends, the Missouri Commission for the Deaf and Hard of Hearing works with individuals, service providers, organizations, and state agencies to improve the lives and opportunities of all Missourians with hearing loss.
  
  
• Missouri Council of the Blind
  The Missouri Council of the Blind is a support group that can provide more information and help guide you through the maze of questions that will arise as you build your new lifestyle. Information provided includes scholarships, summer camps, special services program, adaptive technology information, health benefits, employment and legislation issues and public awareness programs.
  
  
• Missouri Department of Elementary and Secondary Education: Division of Vocational Rehabilitation
  Seeks to enable individuals with disabilities to obtain and keep employment. Champions high-quality services to persons with disabilities. Advocates equity and access for all persons. Assist persons with disabilities by providing individualized support and services, creating a caring workplace that fosters teamwork and personal and professional growth. Acts as an employment resource for businesses and people with disabilities.
  
  
• Missouri Developmental Disability Resource Center (MODDRC)
  Serves all Missourian's free of charge as the main source for information on disability and related topics, and provides connections to community supports. The MODDRC is a partnership between the University of Missouri - Kansas City Institute for Human Development, the Department of Mental Health, and the Missouri Planning Council for Developmental Disabilities.
  
  
• Missouri Fetal Alcohol Syndrome Rural Awareness and Prevention Project
  Designed to Reduce alcohol-exposed pregnancies in at-risk women ages 18-44 through community level and individual level interventions, educate health care providers on FAS, alcohol exposure and reproductive risk factors for best practice integration into their standards of care for women of childbearing age (12-44), and enhance existing surveillance systems to monitor the prevalence of alcohol consumption and contraceptive use in women of childbearing age and the incidence of FAS.
  
  
• Missouri Parents Act
  A statewide parent training and information center serving all disabilities. MPACT’s mission is to ensure that all children with special needs receive an education that allows them to achieve their personal goals. MPACT serves parents of children with all disabilities and works with public and private agencies, parent groups, professional organizations and advocacy groups.
  
  
• Missouri Planning Council for Developmental Disabilities
  A federally funded, 22-member, consumer-driven council appointed by the Governor. Its mandate is to plan, advocate for, and give advice concerning programs and services for persons with developmental disabilities that will increase their opportunities for independence, productivity, and integration into communities.
  
  
• Missouri Planning Council for Developmental Disabilities - Regional DD Councils
  Regional Councils are knowledgeable about local needs and service gaps in their region and provide a grassroots system of planning and advocating for improving the supports and services for persons with developmental disabilities. The regional councils are also the main advisory group to each of the Division of Mental Retardation and Developmental Disabilities' eleven regional centers.
  
  
• Missouri Protection and Advocacy
  A Federally mandated system in the state of Missouri which provides protection of the rights of persons with disabilities through legally based advocacy. MO P&A provides eight federally funded programs to protect the legal rights of persons with disabilities. Due to limited funding in each program, the protection and advocacy system establishes specific service priorities and objectives on an annual basis.
  
  
• Missouri Speech Language Hearing Association
  Serves as the state association representing speech-language pathologists, audiologists, speech, language, and hearing scientists and related personnel associated with organized speech, language, and hearing education and health-care settings. More specifically, to provide leadership, to perform membership services, to advocate rights of people with communication disorders, and to serve as the catalyst for practice innovation toward enabling members to better serve public interest and the profession.
  
  
• Missouri Statewide Independent Living Council
  Monitors, reviews, and evaluates the implementation of the State Plan for Independent Living (SPIL). Develops, signs and submits the SPIL in cooperation with Vocational Rehabilitation and Rehabilitation Services for the Blind. Supports the Centers for Independent Living and advocates for disability rights and related issues. Gathers and disseminates information, conducts studies and analyses, develops model policies, conducts training on Independent Living issues, provides outreach to unserved and underserved populations, and works to expand and improve Independent Living services.
  
  
• Missouri Statewide List of Autism Support Groups
  Provides meeting times and locations of Autism support groups throughout Missouri.
  
  
• MO-FEAT (Missouri Families for Early Autism Treatment)
  Provides advocacy, education, and support for the autism community and to support early diagnosis and effective autism treatments such as Applied Behavior Analysis.
  
  
• National Association of the Deaf
  Seeks to promote, protect, and preserve the rights and quality of life of deaf and hard of hearing individuals in the United States of America.
  
  
• National Federation of the Blind Missouri Chapter
  The ultimate purpose of the National Federation of the Blind is the complete integration of the blind into society on a basis of equality. This objective involves the removal of legal, economic, and social barriers; the education of the public to new concepts concerning blindness; and the achievement by all blind people of the right to exercise to the fullest their individual talents and capabilities. It means the right of the blind to work along with their sighted colleagues in the professions, common callings, and skilled trades.
  
  
• National Organization for Rare Disorders
  A unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
  
  
• Partners in Policy Making
  In 1994, the Missouri Planning Council for Developmental Disabilities began sponsoring this innovative leadership training program that teaches people to be community leaders. The training package is designed to provide information, training, resources, and skill building to self-advocates and parents of young children with disabilities to enable them to obtain the best available services for themselves and others.
  
  
• Prader-Willi Syndrome Association of Missouri
  Promotes the ongoing work necessary to guarantee a fulfilling lifestyle for children, teenagers and adults with PWS by supporting medical research, education and individualized residential living arrangements.
  
  
• Rehabilitation Research and Training Center on Aging with Developmental Disabilities (RRTCADD)
  Promotes the successful aging of adults with intellectual (mental retardation) and developmental disabilities (I/DD) in response to physical, cognitive, and environmental changes. Its coordinated research, training, and dissemination activities promote progressive policies and supports to maintain health and function, self-determination, independence, and active engagement in life. The RRTCADD is a national resource for researchers, people with intellectual and developmental disabilities, their families, service providers, policy makers, advocacy groups, students, and the general community.
  
  
• Self Advocates Becoming Empowered
  Makes self-advocacy available in every state including institutions, high schools, rural areas and people living with families with local support and advisors to help.
  
  
• Sharing Our Strengths
  A statewide support network of parents, family members, people with developmental disabilities and professionals who are matched with peer mentors to share experiences, offer emotional support and to network with others.
  
  
• TASH
  An international association of people with disabilities, their family members, other advocates, and professionals fighting for a society in which inclusion of all people in all aspects of society is the norm.
  
  
• United Cerebral Palsy (UCP)
  The leading source of information on cerebral palsy and a pivotal advocate for the rights of persons with any disability. As one of the largest health charities in America, UCP's mission is to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network.
  
  
• Wrightslaw
  Provides accurate, current information about special education law and advocacy for children with disabilities.