Autism spectrum disorders support groups and resources
Support groups in Kentucky
Big East Cooperative Region (Boyd, Elliott, Greenup, Carter and Lawrence Counties)
Parents United for Support and Help (PUSH)40
Barb Worden
Telephone: 606-324-3005
bworden@pahtways-ky.org
Jefferson County Exceptional Child Education Service Region
Autism Society of Kentuckiana (ASK)
Deanna Gadjen Telephone: 812-949-2922
Laurie Spezzano Telephone: 502-222-4706
Vonya Gresham vgresham@hospices.org
FEAT of Louisville, Inc.
Donna Beasley Telephone: 502-596-1258
DBeasley@homeoftheinnocents.org
Caveland Education Cooperative Region
Allen County Autism Support Group
Amanda Reagan Telephone: 270-618-3181
amanda.reagan@allen.kyschools.us
Autism Awareness and Research Foundation of Edmonson County
Meredith York Telephone: 270-246-0332
Angela Johnson Telephone: 270-246-1328
Autism Group of Cumberland County
Spri Wheatley
autismgroup.sw@gmail.com
Barren River Area Autism Support Group
(Barren, Hart, Monroe, Logan, Butler, Allen, Edmonson, Simpson, Warren Counties) 41
Hart of Autism (Hart County)
Stephanie Turner Telephone: 270-774-1180
etaa8416@yahoo.com
groups.yahoo.com/HartofAutism
Central Kentucky Cooperative Region
Autism Society of the Bluegrass (Central Kentucky)
Sara Spragens Telephone: 859-299-9000
saraspragens@gmail.com
Danville/Boyle County Autism Parent Support Group
(Boyle, Mercer, Casey, Lincoln, Garrard Counties)
Julie DeCoteau
markdecoteau@bellsouth.net
Melissa Caudill Telephone: 859-236-8812
gmcbrc@bellsouth.net
Franklin County Autism and Related Disorder Support Group
Stacy Moore Telephone: 502-352-2425
Stacy.Moore@Franklin.kyschools.us
Parent and Professional Autism Support Group in Powell County
(Wolfe, Montgomery, Clark, Powell Counties)
Marilyn Barnett
happy-top@msn.com
Washington County Autism Support Group
Katie Essex Telephone: 859-336-0059
kentuckylady@bellsouth.net
Northern Kentucky Cooperative Region Autism Society of Greater Cincinnati
Comforting Ties Autism Support Group (Cincinnati and Northern Kentucky)
Sandy Knollman Telephone: 513-703-6215
sandraknollman@yahoo.com
Autism Project of Southern Ohio
(Ohio and Northeastern Kentucky)
Wendy Potts Telephone: 740-357-2273
Mothers of Children with Special Needs of Northern Kentucky
Pam Blackburn
Pam.Blackburn@ky.gov
Campbell County Autism Parent Support Group
Lindsey Mattingly Telephone: 859-635-2118 ext. 110
Lindsey.Mattingly@campbell.kyschools.us
Ohio Valley Educational Cooperative Autism Support Group of Shelbyville
Renea Sageser Telephone: 502-633-1007
rena@kidtherapy.org
Wilderness Trail Cooperative Region
Eastern Kentucky University Autism and Related Disorders
100 Ross Drive, Richmond, KY 40475
Telephone: 859-623-6074
Rita Brockmeyer
Myra Beth Bundy
MyraBeth.Bundy@eku.edu
River Region Cooperative Region
Autism Support Network of Owensboro (ASNO)
Donna Lanham
djl423@yahoo.com
Trudi Laumas
laumas@att.net
Fort Knox Autism Support Group (Open to all military card holders)
Marla Harris
marla.harris@us.army.mil
Elizabethtown Autism Parent Support Group
Lori Hill 43 Telephone: 270-769-0058
Lori.Hill@peoplefirstrehab.com
Upper Cumberland Cooperative Region Autism Support 4 Lake Cumberland
Donna Littrell Telephone: 606-561-8282
awareness4autism@gmail.com
Parents of Autistic Children
(Southeast Kentucky)
Angie Parman Telephone: 606-682-3416
angie@p4ac.com
Joyce Steele Telephone: 606-682-2454
jsteele912@alltel.net
East Kentucky Autism Support Group
Katrina Justice Telephone: 606-432-9367
Becky Harrell Telephone: 606-437-0066
Western Kentucky Cooperative Region
Autism Support Group
(Union County)
Chi Rho Health and Wellness Center in Morganfield 270-389-9696
Laura Ervin Telephone: 270-333-2305 (home) 270-997-0223 (cell)
lervin9@gmail.com
Christian County Special Needs Autism Parent Support (SNAPS)
Janet Godsey Telephone: 270-887-7004
janet.godsey@christian.kyschools.us
Fort Campbell Autism Support Group
Group is open to all; primary focus is military families
Kerry Graef Telephone: 270-798-2727
kerry.moline@us.army.mil
FEAT of Western Kentucky 44
www.featofwesternky.org
Tammi Halvorson
tammih7@comcast.net
Kentucky Valley Cooperative Region
Autism Support of Letcher County
Linda Collins Telephone: 606-855-9026
hootandl@bellsouth.net
Autism Support Group of Perry County
Russ or Kim Baker Telephone: 606-436-0761
Resources
- AIM - Autism Internet Modules
- American Academy of Pediatrics
- Autism Focused Intervention Resources and Modules
- Autism Research Institute
- Autism Society
- Autism Speaks
- Center for Disease Control
- Center for Disease Control/Learn the Signs, Act Early
- Center for Parent Information and Resources
- Concerned about development
- First Signs
- Interactive Autism Network
- International Society for Autism Research (INSAR)
- National Autism Association
- National Autism Center’s National Standards Report
- National Institute of Neurological Disorders and Stroke (NINDS) Autism Facts
- Organization for Autism Research
Kentucky-specific resources
- Arc of Kentucky
- Consumer Directed Option
- First Steps
- Hart Supported Living Program
- Home and Community Based wavier (HCB)
- Kentucky IMPACT
- Michelle P waiver
- Office of Vocational Rehabilitation
- Special Olympics Kentucky
- Supported Employment Training Project
- Supports for Community Living waiver
Federal resources
- Apply For Disability Benefits-Child (under Age 18)
- Benefits for Children with Disabilities
- Tapping New Talent: People with Autism
- Understanding Supplemental Security Income SSI for Children
Additional Resources
Kennedy Krieger Institute (KKI)
Center for Autism and Related Disorders (CARD)
The Center for Autism and Related Disorders (CARD) at Kennedy Krieger Institute is a multifaceted, multidisciplinary program that serves children, families and professionals in the ASD community. The Center combines research, clinical service and training programs to unlock the potential of children with ASD, enrich their life experiences, empower parents and promote the well-being of families through evidence-based practices. One of our main endeavors is developing effective new models of care for families and providers locally, nationally and internationally.
American Academy of Pediatrics (AAP)
Parents who receive a diagnosis of autism in their child face a daunting set of questions. To provide them with guidance and support, the AAP, led by the Council on Children with Disabilities (COCWD) Autism Subcommittee, has created a series of audio interviews with developmental and behavioral pediatricians, a pediatric neurologist, a general pediatrician, autism researchers, and parents of children with autism.
Autism Science Foundation
The Autism Science Foundation was founded in 2009 as a nonprofit corporation organized for charitable and educational purposes, and exempt from taxation under section 501(c)(3) of the IRS code. The Autism Science Foundation's mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. Our organization adheres to rigorous scientific standards and values. (Note: ASF has a page specifically about Autism and Vaccines titled "Beyond the Vaccine/Autism Hypothesis: What Parents Need to Know About Autism Research."
Autism Society of America (ASA)
The Autism Society, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. We do this by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy.
Autism Speaks
Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Their longtime friend Bernie Marcus donated $25 million to help financially launch the organization. Since then, Autism Speaks has grown into the nation's largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. 100 Days Kit for Newly Diagnosed Families
Centers for Disease Control and Prevention's Family Caregiver site
If you are a family member who cares for someone with a disability, whether a child or an adult, combining personal, caregiving, and everyday needs can be challenging. This site has information for family caregivers such as yourself to help you and those you care for stay safe and healthy.
Disabled Sports USA
Everyone deserves to have a fun time playing sports, according to Disabled Sports USA. Founded by injured Vietnam War veterans, the organization has expanded to anyone with a permanent disability who wants to play sports, but who hasn't been able to in a standard setting. Using sports as rehabilitation, many special needs children and young adults gain confidence and dignity through their teamwork and active exercise. Disabled Sports USA also works with the United States Olympic Committee to help choose athletes to compete in the Paralympics.
Exploring Autism
The Exploring Autism website is the result of a collaboration between researchers, non-profit groups, and families who are living with autism. Organizations who make this site possible range from major universities and medical centers to the National Alliance for Autism Research.
Family Voices
Family Voices "aims to achieve family-centered care" for all special needs children by providing families with the "tools to make informed decisions" about health care and education, build partnerships between families and their service providers and serve as a trusted resource on health care. They also help families learn to advocate for improved policies to best serve their special needs children. One of their main goals is to empower young people with disabilities so that they may become self-advocates for various causes that affect those with special needs.
Federation for Children with Special Needs
Headquartered in Boston, this national organization provides information, support and assistance to parents of children with disabilities, their professional partners and their communities. By allowing these families to more fully participate in community life, special needs children are able to grow to their full potential. The Federation promotes the active and informed participation of parents of special needs children in shaping and influencing public policies that affect their families. The peer support network the group provides allows for families to meet with those who share their light.
IAN (Interactive Autism Network)
IAN Community
Families, researchers, and anyone impacted by ASDs can take part in the IAN Community, a comprehensive online library and meeting place focused solely on ASD research. Visitors can learn about the latest research, become more informed consumers of research, and join in a worldwide collaboration of people dedicated to finding answers.
IAN Research
Thousands of people from around the world are coming together through IAN Research, an innovative online initiative connecting researchers with individuals and families affected by autism spectrum disorders (ASD). The information being shared by those living with an ASD is already helping researchers discover new insights about the disorder and is assisting community leaders advocating for improved services. This dynamic exchange is the largest autism research study and is making remarkable strides to improve the lives of individuals and families affected by ASD. This collaborative effort strives to accelerate important breakthroughs about causes, diagnosis, and treatments which may lead to the discovery of a possible cure.
Interacting With Autism
A video-based resource about understanding, treating and living with Autism Spectrum Disorder. This site was developed through a grant with the Agency for Healthcare Research and Quality.
National Center on Birth Defects and Developmental Disabilities (NCBDDD)
NCBDDD Autism Information Center - The National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) seeks to promote optimal fetal, infant, and child development; prevent birth defects and childhood developmental disabilities; and enhance the quality of life and prevent secondary conditions among children, adolescents, and adults who are living with a disability.
National Collaborative on Workforce and Disability for Youth
NCWD focuses on young teens and helps them to learn how to cope with their disability and find their place in the workforce. It also teaches kids to access the education they need. Once the young adults are able to achieve their educational and employment goals, the NCWD works to assist these special needs youth with living as independently as possible.
National Institute of Child Health and Human Development (NICHD)
The NICHD, part of the National Institutes of Health (NIH), is one of the primary Institutes doing research into various aspects of autism, including its causes, prevalence, and treatments. The goal of this site is to provide easy access to the most current information about NICHD research projects, publications, news releases, and other activities related to autism and similar disorders.
National Institute of Mental Health (NIMH)
NIMH's investment in autism-related science more than doubled over the past 4 years. New Institute initiatives aimed at advancing basic knowledge of brain development and genetics also hold promise for understanding complex behavioral disorders like autism. NIMH's autism-related activities range from efforts to improve awareness, diagnosis and treatment, to studies involving brain imaging, tissue banks, animal models, genetics, developmental neurobiology, and neuropsychology.
National Parent Technical Assistance Center
The ALLIANCE National Parent Technical Assistance Center provides resources and materials about special needs children to community centers and families in areas all around the country. By advocating for and providing best practices for caring for these special children, NPTAC is able to encourage families to work with local professionals to find the best quality of care for their children. The group also works with schools and other educators to improve the education of special needs children.
National Youth Leadership Network
Led by young citizens, the National Youth Leadership Network works to build strength and "break isolation" among people with disabilities between the ages of 16 and 28. They try to create a culture of full inclusion, sparking new ideas about how to measure success and ability and supporting youth with disabilities in leadership roles. The group hosts workshops around the country for young people to learn how to develop leadership skills.
Parent to Parent USA
This group matches parents with a buddy parent who has a child with the same disability, allowing each parent or family to have a contact to share information with and receive emotional support from. By matching parents one-on-one with another mom or dad going through the same issues, the parents of children with special needs can receive the emotional support they need, all while creating a new friendship.
Sesame Street and Autism
Sesame Workshop created Sesame Street and Autism: See Amazing in All Children, a nationwide initiative aimed at communities with children ages 2 to 5. Developed with input from parents, people who serve the autism community, and people with autism, See Amazing in All Children offers families ways to overcome common challenges and simplify everyday activities. At the same time, the project fosters an affirming narrative around autism for all families and kids.
The M.O.R.G.A.N. Project
The M.O.R.G.A.N. Project stands for Making Opportunities Reality Granting Assistance Nationwide. This group, established by parents Robert and Kristen Malfara, supports families in their journey of raising a special needs child, be that child biological, adopted or within the foster care system. In addition to having a large library of resources and information on their website, the group also assists families with travel expenses for medical treatments and gifts of medical equipment that aren't covered by insurance, such as wheelchairs. It works to create a group of parents who are supportive of each other in difficult times.