Children affected with autism have unique needs and often require an in-home therapy program to address them. The unique needs could including many issues such as: managing behaviors, enable learning, and the ability to work on deficits. These programs are in place ultimately to help the child prepare for typical learning placements at their local school.
Some of the tried and true programs include: Applied Behavoiral Analysis (ABA), Floortime, Son Rise, RDI, and others. Whatever program selected should have some standard curriculum as well as address the unique needs of the child.
Many parents have read the studies of Dr. Ivar Lovaas and the ability to integrate children with autism into typical peer schooling without aides using Applied Behavioral Analysis (ABA) therapy. All parents read with hope that this intensive one-on-one therapy will save their child from autism. This is our common goal.
As mentioned, there are many therapy options including: ABA, Floortime, Son Rise, and many other methods. I recommend each parent visit at least 1-2 centers or in-home programs providing these therapies to children diagnosed with autism. Seeing these programs yourself will help you make the therapy decision that is best for your child!
This document is based on ABA Therapy only since that is the choice I made for my son. This does not discount the other therapies out there. This was a personal family choice. You may not choose ABA for your child but the information below still will help you select and organize the program right for your child.
ABA is considered the “gold standard” for autism intervention and children by many state agencies and school districts. More importantly – these resources often PAY for ABA and not others due to the studies available. Consider the availability for funding when evaluating behavior methods.
Note: To read the studies, please go to the www.lovaas.com site for the details and statistics.
Starting an in-home program vs. Not
Starting an in-home program is a good idea vs. starting with a center-based/school-based program. This ensures that the program is productive and has good start. Many families find that starting at home gives the child comfort to learn.
Please know that ANY good in-home ABA program overall goal is moving the child into a typical peer preschool or kindergarten setting. Staying with an in-home program IS NOT FOREVER!
What to do while you wait on providers' waiting lists?
Consider buying this book: * Behavioral Intervention for Young Children with Autism, Maurice, Green & Luce – 1996 (Please see more web and book resources and the end of this document.)
This behavioral intervention book has many beginning principles and guidelines for starting drills, beginning therapy supplies and things you will need for an in-home program. While my family waited on wait lists with all the ABA providers we began with some of the “basic” drills, read about them and tried them on our son. This book also demonstrates the framework of each drill and task. The value of the book also provides the associated drills and tasks including the next steps and what your child will be working towards. It is a wonderful guide for knowing what they are working on and towards in a beginning ABA program.
WAIT LIST TIPS: It is important to also ask the ABA providers some questions that may help speed your wait time. Here are some points to consider:
- BEHAVIOR ASSESSMENT OR INTAKE: Many times providers can perform an assessment or intake quickly. This assessment once completed provides valuable insight on what your unique child needs are and what is recommended. Obtaining this report from one or more providers is an important first step.
- WHAT IS THE FASTEST WAY TO START A PROGRAM? Some providers have long waiting lists. Often it is good to ask if they have supervisors and/or therapists for programs. Here are some scenarios to ask about:
- In some cases there are therapist shortages – if you find your own therapists the provider can staff a supervisor to supervise the in-home program (see additional note below HIRING THERAPISTS.)
- In some cases – it is the other way around – they have a supervisor shortage and not a therapist shortage. For a short period of time, ask for experienced therapists to work with your child on basic behaviors and getting the child ready for an in-home program.
- PARENT WORKSHOPS: if no therapist are available – does the provider hold parent workshops and parent training for beginning drills?
Funding an In-home Program:
Finding funds for your program is the toughest thing to do. ABA programs can be costly anywhere from $15,000-$80,000 and beyond a year. Many early start programs and school districts do not offer ABA therapy, or QUALITY, trained therapists, or provide therapy in a many-to-one setting (i.e., many children to one teacher and/or try to provide therapy in a distracting environment). In addition, programs may be offered as an eclectic combination of all the therapies available (i.e., a combination of ABA, TEACCH or Floortime.) Be sure the program is provided on a one-to-one basis and with qualified, trained personnel, in an optimal learning situation.
I have shied away from combination-based programs that I have seen because I found them confusing in the beginning. As the child progresses and acquires base skills this may later be a valid option. In addition, you can start with one program and move to another at any times – especially if a child responds to one flavor of therapy versus another.
Funding for these programs are typically provided by the early start program (in California this is the Regional Center) or via the school district. Many other sources are available as well and are outlined below.
In many cases, parents hire advocates or attorneys to assist them in obtaining the most appropriate program for their child and so that that program is completely funded by the responsible party (i.e., state agency or school district.)
More Info:
What to look for in an in-home program:
In finding the appropriate program, please make sure these decision points are included in the program selection process:
- Qualified, trained therapists (some parents use 1-4 therapists in providing the number of hours they need for their child’s unique needs.)
- A supervisor who has at least 4 years experience with ABA programs and a degree in child psychology or similar degree or credentials. This supervisor should spend 1-5 hours a week providing help to therapist, parents and advising on enhancing and updating the child’s program.
- The appropriate number of hours per week for your child. (This varies per child. Some families start with 15 hours a week and move up to 40 hours a week.)
- All the necessary training tools (i.e., toys, photo cards, etc.)
- A proper recording log book to track successes and where a therapist needs help. This is also a good way to keep track of; therapists time, questions and notes between clinic meetings.
- ABA should be done in a quiet room with no distractions to the child
- ABA should be provided in a one-on-one environment
- Clinic or team meetings on a monthly or bi-monthly basis so that the team can meet together and discuss your child’s unique needs and case specifics.
- Documentation of your in home program is crucial. Documentation should be for each task or drill with an eye to goals and objectives unique to the child. The documentation should be recorded in the same manor by each therapists and reviewed by the supervisor for accuracy, task completion and for moving the program forward.
Many parents choose to fund a program themselves or work with the state agency or school district in making sure the program is executed appropriately. The only way to make sure is to be a knowledgeable parent! Please make sure to read the book "Right From the Start" listed at the bottom of this document in the BOOK RESOURCES where funding ideas for an ABA program are provided in different case scenarios.
Should the early start program or school district indicate they do not fund home programs or a program that includes one-on-one training, seek the advice of an attorney or advocate specializing in your area.
Special notes:
- Some parents provide ABA therapy themselves. If you choose this path, please make sure you receive the necessary training. As well as, I still recommend a supervisor to review your records and make sure the child is getting the therapy they need.
- It is OK to not be an ABA therapist for your child. Some parents are not comfortable in providing therapy and want to be the parent. It is a tough job to be both parent and teacher. If you choose to be the parent and coordinator of your childs program, please still educate yourself on ABA, be a part of the clinic meetings (usually held bi-monthly to review your childs progress and troubleshoot). ABA principles can be used throughout the your child's day and should be consistent.
Why Do Outside or Independent Evaluations? Read more.
How long do you do an in-home program?
This is the toughest question of them all – how long does the child need to be educated at home? It varies extremely by child and their individual needs. Some children need a year of in-home intervention. While some children need 2-8 years of intensive in-home therapies at different levels to assist in skill development of age-appropriate goals. The length of time is completely dependent on the child and their unique needs. Choose a provider or work with your school district in providing the right program for your child.
Note: Some severely children with autism need some level of ABA services throughout their life.
Hiring Therapists:
Some therapy providers the supervisor and all the individual therapists who will work with your child each day.
Other providers may ask that you hire and manage the therapist team that works with your child. By taking this route, the hourly rate you pay can be cheaper. Management of a team takes a significant amount of work and coordination efforts.
Be sure to understand how your provider works and what they expect you to do in assisting your child’s program. Every program provides parent involvement at some level.
Finding good therapists: look for candidates who understand the program principles, have experience and LIKE children! Ask the same questions you would ask an experienced babysitter, including ask some additional questions like:
- What experience do you have?
- What training have you had? By whom?
- How often do you attend follow-up training?
- What books have you read or recommend on ABA?
- How many families have you worked for? Why did you leave?
- How do you work with difficult children misbehaving?
- What are your 1 year and 3 year plans for the future?
- Set up parameters on how to handle sick/vacation time
- How long do you plan on working for my family?
- Standard questions: Have you ever been arrested? Do you have a valid drivers license, how long have you lived at your current resident? Do you have a recent TB (tuberculosis) test? Can you please provide the test results?
- Be specific on setting goals for discipline – discuss at the interview
- Be specific on setting expectations for log and documentation – some therapist take 20 minutes each session for set up and documentation – discuss at the interview
- Be clear on:
- How much they are paid
- Who pays them
- How often checks are paid
- Hourly rates (training rates, standard rates and weekend rates – if different – need to be clarified)
- Be sure to use a therapist agreement between the family and the therapist.
- Please provide 3 references – find out who these people are.
Suggestions for finding ABA Therapists :
- www.abaconnections.com
- Autism_Therapist Yahoo! group
- autismaba Yahoo! group
- www.craigslist.org (childcare and education sections for a city local to you)
- Local newspapers often have discount postings for families - if you ask
- Local colleges/universities that offer degrees in teaching/special ed.
(Try UCLA, UCI, Long Beach State, Cal State Fullerton, Fresno State, UC Santa Barbara and UC San Diego) - www.therapyrecruiter.com/jobs.asp
- www.occupationaltherapistjobs.com
- www.otjoblink.org
Paying for therapists depends on three things: 1) your geographic area, 2) the number of years of experience and 3) the demand in a market for skilled therapists. Ask your provider the standard going rate for an experienced therapist. Rates are anywhere from $12-30 per hour for privately hired therapists and $45-60 per hour for agency-provided therapists.
Suggestions to keeping therapists happy:
You want to keep your therapists happy and working with you for as long as possible. They are hard to find and equally hard to replace! To do that:
- Therapists need reinforcement systems too! Raise systems to reward hard working staff or provide praise and encouragement as much as possible.
- They love to be heard – frequently as them about their sessions with your child
- Let them be sick without guilt
- Avoid calling therapists at home after hours unless info can’t wait until the next time you seen them
- Encourage them to seek additional training
- Encourage a modest amount of overlap with other team members on a monthly basis outside clinic dates to brainstorm and work on the needs of your child.
Supervision of Your Child’s Case:
Besides having qualified, trained therapists you need a “supervisor” for your child’s case. This person should have an advanced degree and years of experience working with children with autism. In many cases, these supervisors have been therapists in the past.
The supervisor of your child’s program is typically involved anywhere from 2-10 hours per month. They are more involved with your child if progress is not being made, therapists require additional training or overlap hours, or if there are significant behavioral problems.
Overall your child’s supervisor is providing many things to help organize, shape, and manage the program to fit your childs unique needs. These areas may also include:
- Training therapists on ways to work with your child
- Setting up the curriculum for your child's program (i.e., the drill or log book and the management of this important document.)
- Working with your other paraprofessionals – the speech pathologist, occupational therapies and other professionals on creating the a quality learning outcome for your child.
- Finding appropriate placement for schooling from preschool and beyond.
- Holding and managing regular staff or Clinic Meetings to discuss your child’s specific needs with all the therapists on your child's team.
- Introducing new concepts to your child and training the therapists. Verifying delivery of each drill or new concept is done similarly to not confuse the child.
- Visiting different settings to observe your child at preschool, school, park or with play dates for evaluating their play skills, interaction with peers, socialization, ability to work in classroom and the environment, etc.
- Working with your family on setting appropriate goals and objectives that are submitted to the school district or early start programs.
- Providing annual standardize testing and reporting to demonstrate skills acquired and how your child is doing on their goals and objectives.
- Identifying areas of need for example: self-help skills (potty training, getting dress, feeding issues) and socialization skills.
- Working on “family homework” and things you can do as parents outside therapy time to generalize and further learning.
- And more
Your child’s supervisor should be someone you should call when you have questions, concerns or to help address the needs for your child. They are the manager or go-to person for your therapists and for your family as your child moves through the necessary curriculum and program to make the progress they need to succeed in life! This is one important person to a child’s program!
Regular Staff or “Clinic” Meetings
Your provider should gather the therapists and the supervisor for regular staff meetings also known as clinic meetings. These meetings should include the therapists working with the child, supervisor supervising the case, the child, and the parents. These meetings should review the following items:
- Behaviors
- Learning issues (academic areas)
- Drill list
- Social skills and play skills
- Annual goals and objectives (not needed for a full review at each meeting but they should be discussed on how we are doing)
- Therapist issues
- Supervisor issues
- Parent/child issues
These regular meetings help adjust, add, delete activities in the program. They should help trouble shoot any problems of the team (including parents) and help adjust and grow as the childs needs change.
These meetings can occur 1-3 times a month or as needed. They can occur in your home or at the providers office based on scheduling and needs.
What do in-home programs look like after the first year?
Many programs will start out in a strict, regimented drill list that will do many things to help the child with autism. In short – they are:
- Helping extinguish and minimize behaviors
- Teach appropriate play
- Getting the child ready to learn
- Teaching basic academic concepts so they can build on these
- AND MUCH MORE
Many families have found these programs become fluid and change often as the child’s needs change and they acquire new skills. A good provider should adjust and move as the child learns and progresses.
For example – a good in-home program will evaluate the child’s needs for:
- Social skills (including preschool, play ground, play dates, and school activities. These will grow and expand as the child grows in skills and readiness
- Self-help skills (toilet training, self dressing, self care and eating)
- Family interactions (including chores, eating out, shopping and being part of the community.)
After one year, a program is much more than sitting in a chair in a room. It is about getting a child ready for school, helping with learning issues, minimizing behaviors, social skills and getting that child ready to be a part of the community. My son’s programs has become less about “drills” and “book work” and more about being a valuable member of our society.
Personal Summary:
Our son Jeff has currently been undergoing an ABA program since January 2000. Many accomplishments have been made since the start Jeff’s program. Early in his program, I provided 4-6 hours of ABA a week myself with the rest of the services being provided one-on-one professional therapists that I hire and manage in my home. I have a great supervisor that grows, manages, and trouble shoots Jeff program to meet his unique needs. We have bi-monthly clinic meetings where the entire team meets and talks about Jeff’s case. I sincerely recommend an ABA program for any child with Autism.
NEED MORE INFORMATION ON ABA?
ABA Web Sites:
- www.lovaas.com
Lovaas main Web site (Founder of ABA) - www.autismconsultants.com
Autism Spectrum Consultants – So Calif. Resource - www.centerforautism.com
Center for Autism & related disorders - www.iqonline.net/murphy/bradley/controversy.htm
ABA general site - members.tripod.com/RSaffran/aba.html
ABA general site - www.wmich.edu/aba/index.html
Assoc for Beh Analysis - www.envmed.rochester.edu/wwwrap/behavior/jaba/jabahome.htm
Journal of ABA - www.envmed.rochester.edu/wwwrap/behavior/jaba/jabahome.htm
ABA Legal Briefs - www.tclc.com
Autism & ABA Resources - Childhood Learning Center - www.meca-autism.com
Autism ABA therapies resources & funding - www.Jerichoschool.org
Dr. Carbone - www.behaviorchange.com
Dr. McGreevy - www.behavioranalysts.com
Dr. Partington/Dr. Sundberg - www.ChristinaBurkABA.com
Great ABA site - www.bacb.com
Beh. Analysis Certification Board - www.behavior.org
Cambridge MA Behavioral Site - www.kathyandcalvin.com
ABA general site - www.behavior-analysis.org
Florida based site - www.drcarbone.net
Dr Vince Carbone ABA Site - www.ABAconnections.com
Therapist job postings and other hints - www.autismprograms.com
So California ABA provider - www.worksheetfactory.com
Handy worksheets for ABA programs
Picture Exchange Communication System ( PECS):
- www.pyramidproducts.com or www.pects.com
Pryamid – creator of PECS - trainland.tripod.com/pecs.htm
Parent site w/ good resources
Speech:
- www.apraxia-kids.com
A great resource for speech issues - www.pyramidproducts.com/index.html
PECS - Picture Exch. Comm System - members.home.net/keyharris/hidden/net1234.htm
Teaching Language -Sundenberg - www.kidspeech.com/
Kaufmans Children Center for Speech - www.promptinstitute.com/index2.html
Prompt Institute for Language Dev. - www.scilearn.com/
Fast Forward for Language Processing - facstaff.uww.edu/bradleys/cdprograms.html
Speech Pathology - Training - www.asha.org/siteindex.cfm
Am Speech & Language Hearing Assoc.
Book & Video Resources:
- www.specialneeds.com/store/
Special needs carries almost EVERYTHING - www.futurehorizons.com
Another great resource
Education & Therapy Supplies:
- www.do2learn.com
ABA & Toys for children with autism - www.mayerjohnson.com
Products for Special Ed - www.intellitools.com
Products for Special Ed - www.pfot.com
Pocket full of therapy – products for Spec Ed - www.edmark.com
EdMark Teaching supplies - www.theraproducts.com
Therapy products - www.stageslearning.com/
Therapy products - www.connectionscenter.com/
Autism web resource - autismsocialvideos.com/
Home Schooling web site resource - www.unschooling.com/
Home schooling resource - www.home-school.com/Groups/OrgList.html
Home school resources by state - www.hyperlexia.org/
Hyperlexia Foundation - www.sra4kids.com
For Spelling Mastering - www.sammonspreston.com
Sammon Preston Therapy Supplies - www.laureatelearning.com/
Laureate Learning Supplies - www.superduperinc.com/
Supplies for speech and language dev. - www.linguisystems.com
Another resource for speech & supplies
Sites on Inclusion in Typical Education Environments:
- www.autcom.org/criteria.html
- www.ctfeat.org/ctfeat/newslet/NewsLet_2(2).htm#inclusion
- www.newhorizons.org/spneeds_schwartz2.html
- www.education.ucsb.edu/~autism/recent_publications.html
- And these two sites are not specific to autism & inclusion, but may be helpful:
BOOKS
There are DOZENS of books on ABA, one-on-one early intervention therapies, speech and sensory integration. What is truly scary – I own a good portion of them! What is even more scary – I have read most of them!! I have tried to outline the books where I received the most information I could use to help my son Jeff. Here is the list:
* Let Me Hear Your Voice - A Family’s Triumph over Autism, Catherine Maurice - 1993
* Teaching Developmentally Disabled Children - The Me Book, O.Ivar Lovaas – 1981
* Behavioral Intervention for Young Children with Autism, Maurice, Green & Luce – 1996
Teaching Children with Autism, Robert & Lynn Koegel – 1996
Visual Strategies for Improving Communication, Linda Hodgdon
The Child With Special Needs: Encouraging Intellectual and Emotional Growth, Stanley Greenspan - 1998
*Right From the Start - Behavioral Intervention for Young Children with Autism, Sandra Harris & Mary Jane Weiss – 1998
Making a Difference : Behavioral Intervention for Autism, Catherine Maurice , Gina Green , Richard Foxx
Do-Watch-Listen-Say: Social and Communication Intervention for Children With Autism, by Kathleen Ann Quill
Reaching Out, Joining in: Teaching Social Skills to Young Children With Autism, Mary Jane Weiss , Sandra L. Harris
Autism: Your Child's Right to a Special Education, David A. Sherman, Edited by Lynne Arnold
The Complete IEP Guide: How to Advocate for Your Special Ed. Child, Lawrence Siegel, revised 2007
Comic Strip Conversations, Carol Gray
The New Social Story, illustrated, Carol Gray
Treasure Chest of Behavior Strategies for Individuals with Autism, Beth Fouse
Solving Behavior Problems in Autism, Linda Hodgdon
These last 2 books are read to children with autism
Too Safe For Strangers, Robert Kahn
Too Smart For Bullies, Robert Kahn
Where to start first? Buy the books with asterisks above and read them in the order presented. Then start web surfing for additional data and research in helping you make your decision or help your program.
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