To Do List for Families with a New Diagnosis
The Kentucky Autism Training Center (KATC) is dedicated to giving families access to the information, services and supports they need by providing an up-to-date, comprehensive website. We understand that the amount of information available on the web regarding autism spectrum can be overwhelming. The purpose of this page it to give you a road map for your travels.
If your child was recently diagnosed, click on each item in the list below to educate yourself about autism and the actions you should take to obtain services.
Learn all that you can about autism spectrum disorders. There are many wonderful, parent-friendly resources to help you.
Kentucky Autism Training Center also houses an extensive resource library.
The Autism Society of America (ASA), the nation's leading grassroots autism organization, exists to improve the lives of all affected by autism. ASA is the leading source of trusted and reliable information about autism.
At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders. We are 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. Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle. The 100-Day Kit by Autism Speaks is a toolkit to assist families in getting the information they need in the first 100 days after an autism diagnosis.
The Organization for Autism Research (OAR) was created in December 2001–the product of the shared vision and unique life experiences of OAR's seven founders. Led by these parents and grandparents of children and adults on the autism spectrum, OAR set out to use applied science to answer questions that parents, families, individuals with autism, teachers and caregivers confront daily. No other autism organization has this singular focus. (Click "resources", select "Life Journey Through Autism Series"; OR search "parent guide")
The Autism Internet Modules (AIM) were developed with one aim in mind: to make comprehensive, up-to-date, and usable information on autism accessible and applicable to educators, other professionals, and families who support individuals with autism spectrum disorders (ASD). Written by experts from across the U.S., all online modules are free, and are designed to promote understanding of, respect for, and equality of persons with ASD.
The mission of PACER Center (Parent Advocacy Coalition for Educational Rights) is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.
Regional Evaluation Centers
List of regional evaluation centers where you can take your child.
Create notebook to carry with you to all of your child's medical appointments and school meetings. It is easy to forget many of the fine points when a great deal of information is shared. Writing things down will help you to keep track of all of the important details. An excellent example is posted at the National Center for Medical Home Implementation.
Join the Kentucky Autism Training Center's listserv to learn about local, regional, state and national resources and trainings. Also sign-up for monthly updates from the KATC-see our home page.
Seek early intervention, if your child is under age 3, contact the First Steps Program. Referrals should be made to the Point of Entry (POE) for your local area. The POE list can be found at the First Steps website or by calling (800) 442-0087.
Contact your local school district's special education department, if your child is age 3 or older to secure special education services your child is entitled to under the Individuals with Disabilities Education Act (IDEA), all children with disabilities have the right to a free and appropriate public education.
Review your child's insurance coverage. Contact your insurance company and employer's benefits coordinator to discuss medical and behavioral health coverage.
Explore the possibilities associated with government-administered insurance programs. Information about eligibility guidelines for the Medicaid and KCHIP programs can be found at the Department of Medicaid Services website.
Review eligibility information about Supplemental Security for children with disabilities by visiting the Social Security Administration website or by calling your local Social Security office.
Learn about treatment and intervention options. For a brief overview of evidence-based interventions, consult chapter 3 of the Kentucky Family Guide to Autism Spectrum Disorders.
Find out what resources are available in your area. The Kentucky Autism Training Center's online Services and supports guide can be searched by local region. In addition chapter 5 of the Kentucky Family Guide to Autism Spectrum Disorders discusses social service programs within the state.
Contact your local Kentucky Comprehensive Care Centers. Publicly-funded community services for Kentuckians with mental health, mental retardation, and substance abuse problems are provided through Kentucky's 14 regional mental health and mental retardation (MHMR) boards. Regional boards are private, nonprofit organizations established by KRS Chapter 210 (see Related Links) that serve residents of a designated multi-county region. For information about mental health, mental retardation or substance abuse services, contact the local office of your regional MHMR board.
Learn about the Medicaid waiver programs.
- The Michelle P. Waiver (MPW) is a home and community-based waiver under the Kentucky Medicaid program developed as an alternative to institutional care for individuals with mental retardation or developmental disabilities. MPW allows individuals to remain in their homes with services and supports.
- The Home and Community Based (HCB) Waiver program provides services and support to elderly people or children and adults with disabilities to help them to remain in or return to their homes.
- Supports for Community Living (SCL) is a home and community-based waiver under the Kentucky Medicaid program developed as an alternative to institutional care for individuals with mental retardation or developmental disabilities. SCL allows individuals to remain in or return to the community in the least restrictive setting.
Find other parents who understand the challenges of raising a child with autism. Consider joining a support group. A list of support groups is available from the Kentucky Autism Training Center. Check the websites of local groups to information about local services and resources.
Plan ahead for day care and summer needs such as aftercare programs or YMCA programs. Explore your local resources and make the contacts.
Take deep breath. Your child is, first and foremost, your child, a unique human being with gifts and challenges like all of us. It is the responsibility of the adults in your child's world to learn how to support them successfully.
Your child is doing the very best your child can with the support available at this stage of their development.
You are not alone. Other parents can be your lifeline during difficult times. Locate and attend a parent support group or link up with one online to share common issues and concerns and brainstorm solutions.
Take care of yourself. Sometimes we become so involved in supporting our child that we don't take time for ourselves. Remember, you can't give from an empty cup.
Although your child may have significant needs, it's OK to take time for your other children and your spouse.
Be open to what others say, but trust yourself when it comes to your child and what your child needs. You know your child and have important knowledge to share with others about your child.
Remember, not everything has to be educational. Make sure your child has some time every day that's fun.
We all belong. Allow your child to participate in community activities and give the community the opportunity to learn to support your child.