If You Are Concerned about a Child’s Development…

Visit Learn the Signs, Act Early. (LTSAE)

• Use the milestones checklists provided on the LTSAE section of the AET! webpage to track your child’s development. Print it out and share it with your child’s doctor or nurse at the next visit.
• Ask your child’s doctor about your child’s developmental screens and results, including the M-CHAT for autism screening at 18 and/or 24 months.
• How to share your concerns with your child’s doctor.
• How to share your concerns  with another adult (such as a grandparent or friend speaking with the parent of the child).
• Ask for a Referral to a developmental pediatrician, or a child neurologist, psychiatrist or psychologist.
• Tips on what to say to your child’s doctor.
• Tips while you wait for an evaluation.
• Keep records [pdf] of all the contacts you make about your concerns.
• If your child’s doctor simply reassures you instead of referring you.

Visit Autism Speaks’ ASD Video Glossary to view example of worrisome behaviors in infants and toddlers to see if you are seeing any of them in your child.
Also read Autism Speaks’ Information for Parents of Infants and Toddlers on the Early Signs of Autism Spectrum Disorders

Visit Autism Speaks’First Concern to Action Tool Kit:

• Introduction and About Autism  
• Understanding Your Child's Development  
• Talking to Your Health Care Provider  
• Getting a Formal Evaluation  
• What if My Health Care Provider Says "Autism"?  
• Other Things to Know  
• Tools and Resources for Families

Visit Autism Speaks’Early Access to Care Kit for Parents:  

• Step 1: Understand Developmental Milestones & Learn More about Autism  
• Step 2: Screen Your Child and Talk to Your Healthcare Provider   
• Step 3: Access Early Intervention Services   
• Step 4:  Explore Treatment Options    

And if you have tried to discuss your concerns with your child’s doctor and others, using the materials offered above, but they still will not listen to you, read ___________

Information for evaluations and education / intervention

ECI
(IDEA Part C)
Birth-to-Three

Early Childhood Intervention  is a component of the Department of Assistive and Rehabilitative Services (DARS) that provides intervention services to qualifying children from birth until their third birthday.  These services are provided under the Individuals with Disabilities Education Act (IDEA), Part C. Click here to find your local ECI provider to request an evaluation.  

School Districts
(IDEA Part B)
Three-and-older

Local school districts are required under federal law Individuals with Disabilities Education Act (IDEA), Part B to provide a “free and appropriate education” to children with disabilities. They perform a Full Individualized Evaluation (FIE), and produce an Individualized Education Plan (IEP) that includes annual goals and objectives, altogether called an “ARD” in Texas for “Admission, Review and Dismissal” Process.  
Find your local elementary school by entering your address.  
Use this letter template to request an ARD evaluation by your local school. [pdf] You must request the evaluation in writing- keep a copy of the signed document for your records, as the school’s signature starts a clock ticking for completion of the evaluation.

Other Resources

The ARC of Texas has many resources, as well as a terrific document, IDEA, The Manual for Parents and Students about Special Education Services in Texas, 2012[pdf] that explains the ARD process for parents in Texas and includes numerous sample letters that might be needed during the ARD process.

Texas Project First (TPF) also describes The Special Education Process Step-by-Step and was developed by the Texas Family to Family Network; there are additional resources on the Family to Family webpage.

The extensive publications from the National Dissemination Center for Children with Disabilities will now be accessible at the Center for Parent Information and Resources’ (CPIR) Library.

Texas Parent to Parent (TX P2P) (the Family Voices Texas state affiliate organization) provides a variety of resources, education and training to parents, family members, professionals, and others who share an interest in improving lives of children with a disability, chronic illness, or special health care need.
The heart of TxP2P is the parent-to-parent peer support model—parents volunteering to provide support and information to other parents. You can request a match here. The parent-to-parent model has been developed by and for parents to address the powerful emotions, new responsibilities, stress and isolation that parents and families face in caring for a child with special health care needs. Read the P2P Endorsed Practices for Parent to Parent Support.

Texas Partners Resource Network (PRN) 1.800.866.4726
operates the Texas statewide network of Parent Training and Information Centers (PTI's) funded by the US Department of Education, Office of Special Education Programs (OSEP). The PTI Projects are: TEAM for Education Service Centers (ESCs) 1-4 and 20; PATH for ESCs 5-13, and  PEN for ESCs 14-19.  Look up your ESC here.

The Texas PTIs provide training, education, information, referral, emotional support, and individual assistance in obtaining appropriate services to help you:

• Understand your child's disability;
• Understand your rights and responsibilities under IDEA;
• Obtain and evaluate resources and services;
• Participate as team members with professionals in planning services for your children.

The Texas PRN is the state site for the Center for Parent Information and Resources, which provides additional resources. Click here for Region 3 including Texas.

Important Safety Information for families with children
with developmental delays and disabilities

General Safety

Autism Speaks Safety Project is designed to provide families affected by autism with tips, information, expert advice and resources so that everyone in our community can stay out of harm's way. This section of the website provides safety resources on a variety of topics.
The National Autism Association is committed to those with an ASD who may be prone to wandering off or eloping from a safe environment, and may be unable to recognize danger and/or stay safe. Wandering, elopement, “running” or fleeing behaviors among those within our community not only present unique safety risks, but also create extraordinary worry and stress among caregivers. Drowning fatalities following wandering incidents remain a leading cause of death among those with ASD.
Autism Risk Management provides autism training and resources for law enforcement, emergency first responders, parents, educators, care providers, and the autism community by Dennis Debbaudt, a parent of a son with autism and professional investigator and law enforcement trainer. He has authored or co-authored over 30 articles and books since 1993 including Autism, Advocates and Law Enforcement Professionals: Recognizing and Reducing Risk Situations for People with Autism Spectrum Disorders, articles for the FBI Law Enforcement Bulletin (April, 2001), and many other law enforcement and autism publications. Note the downloadable resources in the right column of the website, including Autism and Airport Safety, [pdf]  Plan Your Response to an Emergency,  Autism and Public Restrooms, Are You Prepared for an Autism Emergency? and an Autism Emergency Contact Form.
Safe Kids Worldwide provides a large variety of safety tips for children of all ages and levels of functioning.

Wandering

Wandering is the tendency for an individual to try to leave the safety of a responsible person’s care or a safe area, which can result in potential harm or injury. This might include running off from adults at school or in the community, leaving the classroom without permission, or leaving the house when the family is not looking. This behavior is considered common and short-lived in toddlers, but it may persist or re-emerge in children and adults with autism. Children with autism have challenges with social and communication skills and safety awareness. This makes wandering a potentially dangerous behavior. Wandering may also be referred to as Elopement; Bolting; Fleeing; Running. [AWAARE website}
The Big Red  Safety Box Toolkit  includes the following resources:
1) Get REDy booklet  [pdf] containing the following educational materials and tools:

•  A caregiver checklist
•  A Family Wandering Emergency Plan
•  A first-responder profile form
•  A wandering-prevention brochure
•  A sample IEP Letter
•  A Student Profile Form

plus Door/Window Alarms with batteries, Personalized, Engraved Shoe ID Tag, Laminated Adhesive Stop Sign Visual Prompts for doors and windows, Safety Alert Window Clings for car or home windows, and a Red Safety Alert Wristband.  Phone: 877.622.2884
The Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration [pdf] is another critical section of the NAT website with a Family Wandering Emergency Plan [pdf]
A Safety Harness [pdf] may be necessary when you are in public with your child.
Autism Speaks also provides resources for wandering.

Water Safety

In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement. [pdf- LETHAL outcomes]
The Autism Speaks Swimming and Water Safety Scholarship Fund selects eligible organizations and programs to identify qualified financially disadvantaged individuals with autism and offer scholarship funds for swimming and water safety lessons. Important Note: Individuals on the autism spectrum and their families may not apply for the program. However, Autism Speaks encourages families to contact local organizations providing swimming lessons and ask them to submit an application.
Swim and water safety lessons for children with special needs. Find your YMCA here.
Be sure that your child’s last lesson is with his/her clothes and shoes on.

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Visit these external websites for more information

Child development, developmental screening, etc.

• Learn the Signs. Act Early.  
  is an effort by the Centers for Disease Control (CDC) to provide information for parents and professionals on the importance of monitoring developmental milestones, and completing developmental screens at specific times in your child’s development.
  View the Baby Steps video to learn how to look for developmental milestones and what to do if you’re worried about your child’s development or think there’s a problem.
• Birth to 5: Watch Me Thrive!     
  is a coordinated federal effort to encourage healthy child development, universal developmental and behavioral screening for children, and support for the families and providers who care for them.
  You can also download a Screening Passport to keep track of developmental screening activities for your child and the results of the screens.
• Little Texans. Big Futures.  
  Includes guidance on what young children should know and be able to do at different points in their development. What happens in the first years of life will have an impact on your child’s future. Take some time to read through these materials – they will give you powerful knowledge to support your child’s development. Download the Infant, Toddler, and Three-Year-Old Early Learning Guidelines.  
• Texas Association for Infant Mental Health  
  is a non-profit affiliate of the World Association for Infant Mental Health. TAIMH’s mission is to increase awareness of the critical importance of the first three years of life, support conditions that enhance the quality of infant and toddler/caregiver relationships, advocate for policies and practices that support the healthy development of young children, and educate the birth-to-three workforce in best practices.
• Zero to Three  
  ZERO TO THREE is a national, nonprofit organization that informs, trains, and supports professionals, policymakers, and parents in their efforts to improve the lives of infants and toddlers. Our mission is to promote the health and development of infants and toddlers.

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Autism spectrum disorders

AUTISM SPEAKS
It’s time to listen.

Autism Speaks  
is one of the world's leading autism science and advocacy organizations, 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. Their website provides a wealth of accurate information concerning autism spectrum disorders (ASD).
There is an ASD Video Glossary that is an innovative web-based tool designed to help parents and professionals learn more about the early red flags and diagnostic features of autism spectrum disorders (ASD). This glossary contains over a hundred video clips and is available to you free of charge. Whether you are a parent, family member, friend, physician, clinician, childcare provider, or educator, it can help you see the subtle differences between typical and delayed development in young children and spot the early red flags for ASD. All of the children featured in the ASD Video Glossary as having red flags for ASD are, in fact, diagnosed with ASD.

Autism Speaks also provides a number of invaluable “toolkits” for those who live with or provide services to individuals with autism, including the First Concern to Action Tool Kit for parents who have concerns about a possible diagnosis of ASD, the 100-Day Kit for parents with a newly-diagnosed child with ASD, the Asperger Syndrome and High Functioning Autism Tool Kit, Parent's Guide to Applied Behavior Analysis, Grandparent's Guide to Autism,Grandparents Support Tool Kit, and the Advocacy Tool Kit.

The Affordable Care Act (ACA) and Autism webpages discuss this important topic, as the ACA covers applied behavioral analysis (ABA) which Medicaid currently does not.

Information for parents of infants and toddlers on the early signs of Autism Spectrum Disorders

Autism Speaks’ Resource Guide for Texas and  Local Autism Organizations

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Autism Society

The Autism Society of America was founded in 1965 by the late Bernard Rimland, Ph.D. Over the last 40+ years, it has grown from a handful of parents into the leading source of information, research, reference and support on the autism spectrum. The Autism Society is the oldest and largest grassroots organization within the ASD community.
The Autism SourceTMResource Database, is the most comprehensive database of its kind, offering only credible and reliable resources to our constituents; therefore we have employed our nationwide network of affiliates and collaborated with other autism organizations and professionals throughout the U.S. 

TARRC

Texas Autism Research & Resource Center    
The TARRC website supports individuals, families, and professionals by providing comprehensive information on autism spectrum disorders (ASD) and the programs in Texas that provide essential services and supports to people affected by ASD.

Families for Effective Autism Treatment- Houston

FEAT-Houston’s mission is to improve the quality of life of those affected by developmental disabilities by increasing resources and providing information about Applied Behavior Analysis (ABA); this is done by sponsoring workshops and meetings that provide training on effective treatment strategies for individuals with autism spectrum disorders, as well as our monthly emails and newsletters. Our tuition reimbursement and conference stipend programs help support the development of ABA resources in the Greater Houston area and make it possible for more teachers and parents to learn about scientifically validated teaching methods for children, teens and adults with autism.

Families for Effective Autism Treatment- North Texas

FEAT-NT  is located in Richland Hills, northeast of Fort Worth, and sponsors educational opportunities and conferences to provide support to over 25,000 parents and professionals.  FEAT-NT opened the very first autism resource center & library of its kind in North Texas, The FEAT-NT Resource Center & Library. They provide parent support groups, parent mentoring opportunities, social groups, sibling supports, and resources local to the Dallas- Fort Worth area.

LoneStar LEND

LoneStar LEND
is a collaborative training program with UTHealth, University of Houston, Texas Women’s University, University of Houston- Clear Lake, Baylor College of Medicine, and MHMRA of Harris County. Its purpose is to improve global service delivery to children in Texas with autism spectrum and other neurodevelopmental disabilities by professionals in 14 Core disciplines, including increased identification and diagnosis.

Texas resources for developmental delays and disabilities

THHSC

Texas Health and Human Services Commission (HHSC)  
With the Texas Department of State Health Services, and the Texas Department of Assistive and Rehabilitative Services, HHSC administers health care and financial assistance programs to support low-income families and individuals who qualify for benefits. Phone: 1-877-541-7905 or 2-1-1.
Many people with ASD and their families may qualify for these programs. Among others, these programs include:

• Children's Health Insurance Program;
• Medicaid (including STAR+PLUS and the Medicaid Buy-In Programs);
• Supplemental Nutrition Assistance Program food benefits;
• Temporary Assistance for Needy Families; and
• Disability Determination Services.

The Medicaid Buy-In program can help pay medical bills for children with disabilities. This program helps families who need health insurance, but make too much money to get traditional Medicaid. Families “buy in” to Medicaid by making a monthly payment (premium).
The federal Supplemental Security Income (SSI) program pays benefits to disabled children [pdf] who have limited income and resources. This website also provides a Child Disability Starter Kit for assistance with the application process. 1-800-772-1213

TEXAS
Department of Aging
and Disability Services

Texas Department of Aging and Disability Services  (DADS)
provides a variety of home, community and residential services to help people with physical, medical or intellectual disabilities live their lives as independently as possible. DADS also offers services for their families who help care for them.
Look up your Local “Authority” office by zip code or county by clicking here.
Learn about the process of eligibility determination- read information provided by the Mental Health Mental Retardation Authority (MHMRA) of Harris County by clicking here. [pdf]  
Medicaid waivers allow the state to be more flexible in how it spends money to provide some long-term services to some people with disabilities who are eligible for Medicaid. In the past, people had to be in nursing homes/facilities or other large institutions for Medicaid to pay for long-term services. Waivers override certain rules for how Medicaid funding can be used. If they meet the eligibility requirements, people can get the services they need in their own homes or other community settings, instead of having to go into a nursing facility or institution.
However, the Interest Lists (waiting lists) for these services in Texas can be as long as 10 or more years, and DADS maintains “Interest Lists” for the services. It is very important to put your child on the waiver Interest List as soon as you have a diagnosis. You can always decline the service when your name comes up, but it is better to be on the waitlist than wish you had access to services.
Please carefully read the booklets A Roadmap to Understanding Texas Medicaid Waivers and Which Waiver Does What?.  [PDF] It is very important to follow the checklist provided in the booklet to remain on the Waiver List over the years waiting for services.
Call 1-877-438-5658 to put your child’s name on the following Waiver lists:

• Community Based Alternatives (CBA)
• Community Living Assistance and Support Services (CLASS
• Medically Dependent Children Program (MDCP)

Call your local Authority (see DADS entry above) to put your child’s name on the following Waiver lists:

• Home and Community Services (HCS)
• Texas Home Living Waiver (TxHmL)

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TEXAS
Department of Assistive and Rehabilitative Services

Department of Assistive and Rehabilitative Services  (DARS)
includes four Divisions: Early Childhood Intervention, Blind, Deaf and Hard of Hearing, Disability Determination, and  Rehabilitative Services. DARS administers programs that help Texans with disabilities find jobs through vocational rehabilitation, ensure that Texans with disabilities live independently in their communities, and assist families in helping their children under age 3 with disabilities and delays in development to reach their full potential.
The DARS Autism Program champions excellence in the delivery of services for families of children with autism. Services are provided through grant contracts with local community agencies and organizations that provide applied behavioral analysis (ABA) and other positive behavior support strategies. The program helps improve the quality of life for children on the autism spectrum and their families.

The DARS Office of Autism Services was created on September 1, 2014.  The Office of Autism Services includes the DARS Autism Program, the Texas Autism Research and Resource Center (TARCC), and administrative support for the Texas Council on Autism and Pervasive Developmental Disorders (TCAPDD). The Office of Autism Services facilitates collaboration among agencies, organizations, universities, and community partners; advances research and evaluation in the diagnosis and treatment of autism spectrum disorder (ASD); and improves access to resources and services for Texans on the autism spectrum and their families to improve the quality of their lives and enable their full participation in society. 

Texas Council on Autism and Pervasive Developmental Disorders
4800 North Lamar Blvd.
MC 1411
Austin, Texas 78756
AutismServices@dars.state.tx.us
1-800-628-5115 (DARS Inquiries Line)

Texas Council on Autism and PDD’s (TCAPDD) mission is to advise and make recommendations to state agencies and the Texas Legislature to help ensure that the needs of persons of all ages with autism, and other pervasive developmental disorders, and their families are addressed and that available resources are coordinated to meet those needs. The Council is composed of seven public members, the majority of whom are family members of a person with autism or a pervasive developmental disorder, appointed by the governor with the advice and consent of the Texas Senate, with six representatives of the major state agencies.

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Texas Education Agency

TEA’s  mission is to provide leadership, guidance, and resources to help schools meet the educational needs of all students and prepare them for success in the global economy. TEA administers the distribution of state and federal funding to public schools; administers the statewide assessment program and accountability system; provides support to the State Board of Education in the development of the statewide curriculum, adoption of instructional materials, and managing the distribution process;  administers a data collection system on public school information;  performs the administrative functions of the State Board for Educator Certification; supports agency operations; and monitors for compliance with federal and state guidelines.
There are 20 regional Education Service Centers (ESCs) in Texas that provide leadership, training, and technical assistance in the area of special education for students with disabilities in accordance with the Texas Education Agency's focus on increasing student achievement. Each serves as first point of contact for school districts, parents, and other community stakeholders, and provides for the joint training of parents and special education, related services, and general education personnel.

2-1-1 Texas

2-1-1 Texas, a program of the Texas Health and Human Services Commission, is committed to helping Texas citizens connect with the services they need. Whether by phone or internet, their goal is to present accurate, well-organized and easy-to-find information from over 50,000 state and local health and human services programs.  This site is a comprehensive guide to the community resources in Texas. Agency profiles include service descriptions, contact information, and information about availability, disability access, fees, and eligibility requirements. Phone: 2-1-1.

Resources for early childhood professionals

The Birth to Five ToolKit include Guide[s] to Support Developmental and Behavioral Screening Initiatives for

• early education and care professionals
• early intervention and early childhood special education professionals
• home visiting programs

It also provides a Compendium of Screening Measures for Young Children

Recommended Initial Reading List (not in a particular order)

• Autism Speak’s 100 Day Kit
• Autism Diagnosis, Causes and Symptoms 
• Family Tips: Sharing, Caring and the Future
• Early Intervention and Education Rights 
• Information on Therapies and Treatments 
• Assembling and Managing Your Team 
• 10 Things Your Child Wishes You Knew
• Resources by Topic
• Action Plan for the Next 100 Days
• Safety Tips
• Useful Forms
• Glossary 
• The Arc of Texas’ IDEA, The Manual for Parents and Students about Special Education Services in Texas, 2012
• Alan Yau: Autism - A Practical Guide for Parents (2012), CreateSpace Independent Publishing Platform, ISBN 1481171372. 
• Sally J. Rogers, Geraldine Dawson, & Laurie A. Vismara, An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn (2012), Guilford Press, ISBN160918470X.
• Lynn Koegel & Claire LaZebnik: Overcoming Autism:Finding the Answers, Strategies, and Hope That Can Transform a Child's Life (2005), Penguin Group, ISBN: 0143126547
• Fred R. Volkmar & Lisa A. Wiesner: A Practical Guide to Autism: What Every Parent, Family Member, and Teacher Needs to Know (2009), John Wiley & Sons, ISBN: 0470394730
• Shirley Cohen: Targeting Autism: What We Know, Don't Know, and Can Do to Help Young Children with Autism Spectrum Disorders (2006), University of California Press, ISBN: 0520248384
• Ellen Notbohm & Veronica Zysk: Ten Things Every Child with Autism Wishes You Knew(2012), Future Horizons, ISBN 1935274651  
• Matthew Cohen: A Guide to Special Education Advocacy-- What Parents, Clinicians, and Advocates Need to Know (2009), Jessica Kingsley Publishers, ISBN 1843108933.
• National Research Council. Educating Children with Autism(2001), National Academy Press; 2001. ISBN 0309210011
• Sally Ozonoff, Geraldine Dawson, & James C. McPartland: A Parent's Guide to High-Functioning Autism Spectrum Disorder, Second Edition (2014), Guilford Press, ISBN 1462517471
• Patricia Romanowski Bashe (2014): Asperger Syndrome: The OASIS Guide, Revised Third Edition (2014), Harmony, ISBN 0385344651
• Paul Offit: Autism’s False Profits (2010), Columbia University Press, ISBN 023114637.