How to Start an In-Home Therapy Program for Your Child

July 7th, 2010

Children affected with autism have unique needs and often require an in-home therapy program to address them. The unique needs could include many issues such as: managing behaviors, enabling 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 Behavioral Analysis (ABA), Floortime, Son Rise, Relationship Developmental Intervention (RDI), and others. Whatever program selected should have a standard curriculum or something similar or should address the unique needs of the child.

Many parents have read the studies conducted by 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, SonRise, 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 focused 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 will still help you select and organize the program(s) right for your child.

Therapy options are a personal decision and should be researched and reviewed for each child and their unique needs. This information is to provide you with the necessary research information on the ABA/Lovaas therapy option.

ABA is considered the “gold standard” for autism intervention for children with autism by many state agencies and school districts. More importantly these resources often PAY for ABA and not for others due to the studies available. This is why the recommendation for parents to evaluate this treatment option is mentioned.

Note: To read the studies, please go to the Lovass Institute’s website for the details and statistics of Dr. Lovaas’ studies and the Lovaas approach.

Books

There are dozens of books on ABA, one-on-one early intervention therapies, and 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 from which I received the most information I used to help my son Jeff.

Starting an In-Home program vs. Not

Starting a program in-home is a good idea versus starting with a center-based/school-based program. This helps ensure the program is productive and has good start. Many families find that starting in home gives the child comfort to learn.

Please know that ANY good in-home ABA program’s 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 about how possibly help speed up your wait time. Here are some points to consider:

  1. BEHAVIOR ASSESSMENT OR INTAKE: Many times providers can perform an assessment or intake quickly. This assessment once completed provides valuable insight on what are your child’s unique needs and what is recommended for them. Obtaining this report from one or more providers is an important first step.
  2. WHAT IS THE FASTEST WAY TO START A PROGRAM? Some providers will have long waiting lists. and occasionally, some cancellations. Often, it is good to ask if they have supervisors and/or therapists for programs. Here are some scenarios to ask about:
    1. In some cases, there are therapist shortages. If you find your own therapist(s ), the provider can staff a supervisor to supervise the in-home program (see additional note below on HIRING THERAPISTS.)
    2. 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 an experienced therapist(s) to work with your child on basic behaviors and getting the child ready for an in-home program.
  3. PARENT WORKSHOPS: If no therapists are available, ask this question: 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 each year and beyond. Many early start programs and school districts do not offer ABA therapy, or QUALITY, trained therapists, or provide therapy in a too-many-to-one setting (i.e., too many children to one teacher. Or they may provide therapy in a distracting environment.) In addition, programs may be offered as the “best of class” (also known as “eclectic”) of all the therapies available (i.e., a combination of ABA, TEACCH or Floortime.) You have to be sure the program is provided on a one-to-one basis and with qualified, trained personal, in an appropriate learning situation that meets your child’s unique needs.

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 basic skills this may later become a valid option. In addition, you can start with one program and move to another at any time, especially if a child responds to one flavor of therapy versus another.

Funding for these programs are typically provided by the state agency/early start program 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 to help make sure the program is completely funded by the responsible party (i.e., state agency or school district).

See Who Pays for What? (PDF) for more information.

What to look for in an In-Home Program

When finding the appropriate program, please make sure these decision points are considered in the program selection process:

  • Qualified, trained therapists (some parents use 1-4 therapists to provide 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 a similar degree or credentials. This supervisor should spend 1-5 hours a week providing help to the therapist and 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 areas where a therapist needs help. This is also a good way to keep track of therapists’ time, questions, and notes between clinic meetings.  Parents should have access to these logs.
  • 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 should be held 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 manner by each therapist and reviewed by the supervisor for accuracy, task completion, and for when to move the program forward.

Many parents choose to fund a program themselves or work with the state agency or school district to make sure the program is executed appropriately. The only way to be sure is to be a knowledgeable parent! Please be sure to read the book Right From the Start by Sandra L. Harris, Ph.D. and Mary Jane Weiss, Ph.D., which provides funding ideas for an ABA program in different case scenarios.

Should the early start program or school district indicate that 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 city.

Special notes:

  1. Some parents provide ABA therapy themselves. If you choose this path, please make sure you receive the necessary training. I still also recommend having a supervisor review your records and make sure the child is getting the therapy they need.
  2. 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 & coordinator of your child’s program, please educate yourself on ABA and be a part of the clinic meetings (usually held bi-monthly to review your child’s progress and to troubleshoot any issues). ABA principles can be used throughout your child’s day and should be consistent.

Why Do Outside or Independent Evaluations?

Click here to 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 in the home? It varies extremely by child and their individual needs. Some children need a year of in-home education; some children need 1-8 years of intensive 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 the right amount of time that works for your child.

Note: Some severely affected children with autism may need some level of ABA services throughout their lives.

The best way to know is to watch your child. They will tell you (sometimes without words) what they need and what they do not need.

Hiring Therapists

Some therapy providers will not only provide the supervisor to your child’s program, but also all the 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. However, management of a team takes a significant amount of work and coordination effort.

Be sure to understand how your provider works and what they expect you to do in assisting your child’s program. Every program requires parent involvement at some level.

To find good therapists, look for candidates who understand the program’s principles, have experience, and LIKE CHILDREN! Ask the same questions you would ask a babysitter, including some additional questions like;

  • What experience do you have?
  • What training have you had? From 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 would you manage a child who was misbehaving?
  • What are your one year and three year plans for the future?
  • Set up parameters on how to handle sick time/vacation time – Discuss at interview
  • 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 residence? Have you had a recent TB (tuberculosis) test? Request a copy of the TB test results.
  • Be specific on setting goals for discipline – Discuss at the interview
  • Be specific on setting expectations for report logs and documentation – some therapists 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 at the interview)
    • Be sure to use a Therapist Agreement (PDF) between the family and the therapist.
    • If they commute, then if their gas/mileage costs are reimbursed
  • Please provide three references – find out who these people are.

Suggestions for Finding Therapists

Paying for therapists depends on the geographic area, the number of years of experience, and the demand in the market for their services. Ask your ABA provider for the standard “going rate” for a good therapist. Rates are anywhere from $18-30 per hour for privately hired therapists and $50-75 per hour for provided therapists by ABA agencies.

Suggestions for 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, here are some suggestions:

  • 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 ask them about their sessions with your child and seek their input.
  • Let them be sick without guilt.
  • Avoid calling therapists at home after hours unless information 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.
  • Recommend additional training seminars (via support groups, conferences, etc.).

Supervision of Your Child’s Case

Besides having a qualified and trained therapist, 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, and/or you are troubleshooting significant problems altogether.

Overall, your child’s supervisor should provide many things to help organize, shape, and manage the program to fit your child’s 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 therapists and other professionals on creating 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 so as to not confuse the child.
  • Visiting different settings to observe your child at preschool, school, the 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 standardized 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 dressed, and 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 can call when you have questions or concerns or to address the needs of your child. They are the manager or go-to person for your aides 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 very important person in 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, or delete activities in the program. They should help troubleshoot any problems of the team (including parents) and help a child’s program adjust and grow as the child’s needs change.

These meetings can occur one to three times a month or as needed. They can occur in your home or at the provider’s office based on scheduling as well as individuals’ 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:

  • Help extinguish and minimize behaviors
  • Teach appropriate play
  • Get the child ready to learn
  • Teach basic academic concepts so they can build on these
  • AND MUCH MORE!

Many families have found these programs to be fluid and change often as the child’s needs change as 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, playground, play dates, and school activities. These will grow and expand as the child grows in social skills and social 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, an in-home 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, improving social skills and getting the child ready to be a part of the community. My son’s program has become less about “drills” and “book work” and more about becoming 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 of 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 by professional therapists that I hired and managed in my home. I have a great supervisor who grows, manages, and troubleshoots Jeff’s 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 based on our experience.

Resources

ABA Web Sites:

Picture Exchange Communication System ( PECS):

Speech:

Book & Video Resources:

Education & Therapy Supplies:

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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