Guest Author - Bonnie Sayers
In 1998 my oldest son Nicholas was diagnosed on the Autism Spectrum and his brother Matthew was given the diagnosis of ADHD. They were both accepted as consumers of the Regional Center System here in California. Within a few months an Interventionist was here for an assessment of each child. This was our first experience with therapists coming into the home.
Nicholas was already receiving speech therapy at one Hospital clinic with Occupational Therapy at Children's Hospital, both services through our health insurance. The behavior assessment consisted of three home visits and one community outing. Thereafter the sessions were in the home for three hours a week.
The six page assessment plan for Nicholas was very detailed, but mentioned Matthew's early intervention program school as the place Nicholas was attending. This is when I learned of the ABC terminology (Antecedent, behavior and consequence), as well as DRO - Direct or Differential Reinforcement of Other Behavior, reinforcers, frequency and setting.
If only the Interventionist was as organized in person as she was on paper, perhaps some progress would have been made. I noticed early on that Nicholas was favored over Matthew during the sessions and when it was time to request more therapy we decided not to pursue it.
Whenever we went on community outings the Interventionist drove in her own car since she could not ride along with us, per agency rules. We could meet at other locations though and did go to the grocery store, laundromat and park.
When I switched schools for Matthew's Early Intervention Program (0-3 years of age), which was funded through the Regional Center, we started having home visits from the teacher and assistant once a month. Then over time it changed to just the assistant coming for visits. Most times they would arrive with toys and related items to work on the goals as written in his education plan for each session. A parent needs to be in the home and participating in the visit as well. They are not there to babysit or be alone with the child.
For a three-month period in 2000 we tried music therapy that was also funded by the Regional Center. The therapy took place once a week for thirty minutes working on social skills goals, recpetive language skills, improve attention span and self expression. The therapist worked independently with each child, bringing along her guitar and boom box. She was quite concerned each time Nicholas touched her guitar, while I was always worried the boombox would tip over and hit someone.
The Regional Center made a change to the music therapy process, requesting that typical developing kids from the neighborhood join in the sessions. The therapist would ask each week if she could go to the Head Start place around the corner to find some kids to join in the sessions. I had no interest in this new requirement and did not seek further music therapy sessions when the funding time was over.
In 2001 there was an assessment for floortime therapy in the home that resulted in a report that I felt was not positive for our household. I did not pursue the therapy after the assessment since they would not utilize PECS in their sessions and the therapists seemed to take issue with the number of times Matthew needed a diaper change during their visit.
During that same time period Matthew was receiving Speech and Occupational Therapy at the Hospital clinic in joint sessions. The therapists wanted me to wait for the end of the session before changing his diaper, since I would sometimes have to do it twice during the hour. The very first Speech Therapist at the same Hospital actually took Matthew to the restroom and did the changed herself. That was the first and only Therapist who ever changed his diaper. She used the time to promote and facilitate speech and felt it was part of their routine each week. When he entered her room for each session they took the bag with the changing supplies.
Then there was a male therapist to do an assessment on Matthew for behavior therapy in the home. He was a third party through some agency with the first visit just the two of us while Nicholas and Matthew were at school. Once he learned there were two boys on the Autism Spectrum he spent most of the time pushing his agenda on helping both boys and was figuring out his mileage and explaining the time he would use for the therapy for driving to our house. His assessment even confused Nicholas with Matthew since he tried to see them both at the school playground. I had the assessment done over again due to his numerous mistakes and never requested the therapy.
We also went to Children's Hospital for feeding assessments that lasted many hours with several professionals. The end result was their insisting on re-evaluations for both kids and many therapies at their location several times a week. Their Pediatrician assumed the kids were mimicking the father who has Paranoid Schizophrenia.
During 2002 and 2003 we attended a family therapy support group at a church where the parents would discuss issues facilitated by a family therapist with the kids and their siblings in a play room doing arts and crafts with snacks and musical activities. The therapists there were speech students from Cal State. This was once a week and funded by the Regional Center. We got bored with it, plus they had issues with Matthew not being toilet trained.
Since December of 2002 Matthew has been receiving feeding therapy. There would be a visit in the home every few months with the rest of the sessions on a weekly basis at the clinic. Due to my numerous vehicle issues the visits started taking place in the home in the last year.
There were many times that Matthew would eat foods at the clinic kitchen but not at home. These kitchens had doors and were in a controlled environment, unlike home with no kitchen door and Television sets in adjoining rooms. For the sessions at the clinic I always brought snacks and Matthew would have to try something from that as well. The idea was to have him eat the same foods as the household already has at home.
For the most part the items for each session were from the refrigerators at the clinic. Matthew was able to adjust to each kitchen they have in their setting, which is three or four. Once the sessions were at home the food items to be tried were from our own supply. Sometimes the OT or Dietitian would bring along a specific item they wanted Matthew to try.
We adapted over time from using a tv tray in the bedroom where Matthew would be watching videos to actually sitting at a kitchen island table and stools. They bribg along the scale for Matthew to be weighed. This is funded twice a year through the Regional Center, with progress reports done prior to the end of the six-month period.
In March of 2006 we started a behavior parent therapy training taking place in the home that consisted of an initial funding by the Regional Center of 36 hours over a three-month period.
This experience was unlike any other we had with therapists entering the home. They were young girls, dressed inappropriately, utilizing their cell phones as they entered and speaking in the bathroom on them and not really being organized or experienced. It all started with rude and insulting letters from the director of the agency informing parents of certain things we as families needed to adhere to for the Behaviorist, since their time was so valuable.
I sent back emails complaining of this introductory letter plus sent a copy to the Regional Center compliance unit. The actual assessment was done by someone else and then the so called Behaviorist never followed those goals and worked on other things.
As a result of that experience I felt it was necessary to look into developing House Rules for In Home Personnel and checked with other parents online as to what their related experiences had been like. We also had young college students coming over every Sunday as a family friends volunteer for Nicholas. They went through training and were professional for the most part. One year there was a male who would continually bring his girlfriend along and ask Nicholas if he ever kissed a girl. I did inform the agency of his behavior. At one time many years ago we had an adaptive skills trainer funded through the Regional Center. We went through two males during the funding period. I had to call and request help with the first guy because his pants were always so low and his underwear was visible. This was quite awkward and uncomfortable when he would come into the kitchen to get something out of the refrigerator and bend down or over - an image I do not want in my kitchen or any place else in my home for that matter.
The second guy they sent over was more professional, but he also worked for other families and was always going outside to schedule his weekend hours. I had the same thing happen with Respite workers who needed to be in contact with their agency and other families.
Many suggested doing a form letter for all related personnel entering the home. The key issues to note would be:
1. Dress Appropriately
2. No Smoking
3. No Heavy perfume/cologne
4. No visible tatoos/piercings
5. Females must wear bras - including summertime
6. Males need to keep pants on with a belt and no underwear exposed
7. Turn off cell phone upon entering
8. Bring your own notebook
9. Consider bottled water and snacks for yourself
10. Keep makeup minimal
11. No bright nailpolish
Some things to consider are if the family wants you to remove your shoes upon entering, where the bathroom is, washing hands and using hand sanitizer, if the family has pets and/or siblings. If you carry a briefcase with all your paperwork ask the parent where it can be stored. For children not yet toilet trained the parent should be alone with child to change diaper without the therapist watching or distracting either parent or child.
There will be some forms to fill out prior to the first session. This could include whether videotaping is allowed and permission given to speak to other professionals who treat the child and school personnel. Some agency providers also do school visits so discuss what issues would arise for those appointments.
When the Dietitian and Occupational Therapy made their first visits to Matthew's school years ago I also was at these visits. We discuss what is taking place at school and home prior to a visit, get times that are good from teacher and then set up the visit with the school. It is good to wear some form of identification such as a name badge during the visit and give teacher your business card.
When the Behaviorist was here last year she did ride with us in my vehicle to the park and grocery store, so agencies may have different rules on driving with family. I know that with the family friends volunteer they could ride with us as well and on one occassion we went in their car when mine was not working.
I would advise families that rent to obtain renters insurance. Some agencies allow other family members to be in the home if the parent is working. Therapy can be conducted in a separate room, but the door must remain open and the legal guardian has to be at the residence.
Parents who run their own therapy type programs should get credentials of those they hire through online searches and check references. Observe the person with your child and make your decision.
Think about your other children and their schedules, because you will not be able to run out and pick up a sibling while the therapist is there, unless there has been a discussion and agreement with therapist or agency beforehand. I had wanted to schedule therapies at 2 pm, but Nicholas got out of school at 2:15 around the corner, so I had to either change the time or have him walk home alone.
Keep logs and notes and get a copy of the progress report before it is finalized to give your input and feedback. Remember that any professional working with your child and in your home can report any suspicious activity or bruise, etc they see. This is the same for any school personnel. The therapist is not there to discipline your child. Go over their favorite toys and what will be used as a reinforcer or therapy tool depending on the type of therapy offered in the home. Tell the therapist of any known allergies of the child or other children in the home. Consider donating unwanted toys to the agency for use with other families. Discuss upcoming conferences and get feedback from therapist on a regular basis.
Make a sample list of what a typical day is like for your child and discuss the good times for the therapy to be done in the home. A good therapist will be in tune to your child and can tell when they are tired, hungry or bored. It is good to also keep a communication notebook going between school and home. This gives family and therapist insight into the day at school and what could be triggering the behavior once at home. The same goes for informing school of any outcomes postive or negative with therapy so everyone is working toward the same goals and aware of changes in the student/child. Give the therapist ample time to change schedule for vacations and school breaks. If your child is home sick let her know if a cancellation would be better than catching a sickness. Not all therapists are a match with a family. It may take a change in the therapist to see results with the child. Find someone you are comfortable with at the agency to let them know you would rather someone else do the sessions. We have had changes in personnel over the years with positive outcomes.
Inquire if other personnel will be coming to the house to observe sessions and be given advanced notice of their arrival date. Some agencies might have interns who come to learn, ask if they follow this practice. Ask that you be given two weeks notice when a therapist is leaving the company. Consider taking photographs of each therapist that works with your child so they are familiar with them and can use with a daily schedule if need be. This helps prepare the child for the sessions. Should a therapist become pregnant discuss changes in the service as the term ends and how the child can comprehend what is taking place. Make a contingency plan for how long the therapist will be gone and introduce the new therapist along with same therapist for ease of transition.
Parents of autistic children oppose new parental supervision requirements
New York Times Publishes Article on ABA Insurance Coverage Battles - The following is an excerpt from this article:
"The University of Washington's autism center, for example, is training people with graduate degrees to design programs for individual children and to train and supervise certified paraprofessionals who provide the therapy in a child's home.
There are similar training programs at other schools, including the University of Rochester, U.C.L.A., Rutgers and universities in Kansas, Texas and Michigan."
Success Story: How I Used the School's Test Scores to Get ABA Therapy - Wrightslaw article
Bringing Jodi Back
Example of Therapist Ad in Craigslist
Wisconsinís New In-Home Autism Program
Floortime Clinicians and Educators
Autism Therapy is Called Effective, but Rare - NY Times article on wrightslaw.com. Note the following excerpt:
"Even parents who decide to pay for treatment have trouble finding private specialists. Autism schools and private behavioral therapists typically have waiting lists of more than a year. This forces parents to set up their own in-home school and hire teams of people to provide the 20 to 40 hours a week of therapy. Many parents train themselves in the behavioral therapies, and then train college students, whom they can hire for considerably less money than specialists."