Serving Children Ages 3 through 8
Who Have Autism Spectrum Disorder
January 15, 2009
In August 2007, the Legislative Budget Board, in conjunction with the Office of the Governor, instructed the Health and Human Services Commission to transfer $5 million in general revenue for the biennium to DARS to fund services, such as applied behavior analysis (ABA), for children ages three through eight with an autism spectrum disorder (ASD).
Given the time-limited nature of the funds, as well as the lengthy process of developing program rules, DARS chose to award up to five grants for autism services to be administered as contracts. The grant model allowed DARS to implement services more quickly to children with ASD and to choose different service models that will allow for comparative analysis at the end of the project.
Following a competitive procurement process, DARS awarded the following four service providers grants of $1.25 million to provide autism treatment services beginning April 1, 2008 and ending August 31, 2009:
Child Study Center (CSC) is providing assessments by a board certified neurodevelopmental pediatrician; psychological testing, if indicated, by a Ph.D. psychologist; and up to 30 hours of applied behavior analysis (ABA) treatment per week under the supervision of board certified behavior analysts (BCBAs) for several months followed by a gradual fading of intensity for the remainder of the grant period. The fading of intensity is based on a child's clinical needs, school placement, and other therapeutic activities. The CSC anticipates serving over 80 children. CSC provides services at its facility located at 1300 West Lancaster Avenue in Fort Worth.
Easter Seals North Texas(ESNT) is providing up to 20+ hours per week of ABA under the supervision of behavior analysts, along with speech-language therapy, physical therapy, occupational therapy, and audiology evaluations, as indicated. The University of North Texas is providing Ph.D. level consultants in applied behavior analysis, special education, and applied anthropology. ESNT anticipates serving 50 children at its two locations, one at 4201 Brook Spring Drive in the Oak Cliff section of Dallas, and another at 4443 North Josey Lane in Carrollton.
MHMRA of Harris County is providing 90 days of intensive ABA treatment under the supervision of BCBAs through its SkIP Program, followed by weekly then monthly consultation. The initial 90 days of intensive training may be extended if clinically indicated. Children who are unable to attend the SkIP program may receive home-based services tailored to meet their individual needs. The agency anticipates serving over 140 children at its two service locations, one in western Harris County at 7011 Southwest Freeway in Houston and the other in eastern Harris County at the University of Houston at Clear Lake.
Texana Center is providing ABA services through its Behavior Treatment and Training Center. Under the supervision of BCBAs, children receive 32.5 hours per week of individual and small-group services, or 15 hours per week if transitioning into the school system and needing additional assistance. The center anticipates serving 40 children at its facility located at 4910 Airport Avenue in Rosenberg near Houston.
The total number of children to be served during the 17-month grant period is 317. As of November 30, 2008, one hundred and thirty-six children were in service or had received services. The following chart illustrates the target number of children projected to receive services by each provider during the seventeen months of the grant period and the actual number of children served during the first eight months.
Hurricane Ike affected DARS autism services in the Houston area when it hit Galveston and the surrounding area on September 13, 2008. The MHMRA of Harris County administration building at 7011 Southwest Freeway in Houston suffered extensive damage when the roof blew off allowing wind and rain to devastate the inside of the building. The Skills Intervention Program (SkIP) located in this building ceased operation for two weeks until the program was able to relocate to a temporary site pending renovation of the building. The program is scheduled to move back to the Southwest Freeway location in mid-January 2009. SkIP services at the University of Houston Clear Lake closed for a few days because of power outage, but the facility itself suffered no damage. Services at Texana Center in Rosenberg were suspended for one day as the storm approached, but the physical plant suffered no damage.
The DARS autism specialist conducted on-site monitoring visits with the Dallas and Fort Worth providers in September and the Houston providers in October 2008. The monitoring visits included an evaluation of compliance with the DARS Autism Program Quality Indicators (APQI). Compliance with the APQI was assessed by
All four providers were determined to be in basic or substantial compliance with the APQI.
In an effort to enhance the quality of services provided to children served under the grants, the DARS Autism Program organized its first “cross-pollination” visits on November 5–6, 2008, with Child Study Center (CSC) in Fort Worth and Easter Seals North Texas (ESNT) in Dallas serving as hosts. Representatives from MHMRA of Harris County and Texana Center toured and observed service delivery at CSC and ESNT. The site visits also included a discussion and sharing of best practices, reporting requirements, and case presentations. Those in attendance found the site visits very helpful and informative. The Houston area providers will host cross-pollination visits for the Dallas and Fort Worth providers in January 2008.
The following chart illustrates the amount of grant funds expended by each provider through the first eight months of the grant period (April 1, 2008 through November 30, 2008) in comparison to the respective grant awards. The total amount of funds expended through November 30 was $1,857,536.
Autism spectrum disorder (ASD) is the fastest-growing serious developmental disability in the United States, affecting an estimated 1 in 150 children. In 2008, there were an estimated 50,100 Texas children under age 21 with ASD. With the number of children diagnosed growing at such a rate, there continues to be an unmet need for services. As of November 30, 2008, nearly 600 children were waiting for services at the four DARS provider agencies.
Child Study Center (CSC) cites four potential reasons for the reduction in its waiting list: (1) Some of the children on the waiting list “aged out” (i.e., they turned 9 before they were able to be served); (2) Some families declined enrollment for various reasons (it should be noted that CSC works with a family’s financial difficulties if they decline an enrollment offer because they could not afford the services); (3) Some families encountered difficulties with their child’s school district (i.e., some schools are unwilling to excuse a child to be in their program), and (4) Some of the children on the waiting list were enrolled in their program. Collectively, children in the aforementioned four groups move from the waiting list at a faster rate than children added to the list.
At Easter Seals North Texas (ESNT), the interest list has remained relatively stable over the past three months. As of November 30, ESNT has served 31 children and has 69 children on the interest list. Their interest list numbers have consistently been around 65 to 75 children. ESNT continues to field calls and email inquiries from community members expressing interest in their program. Their numbers have remained steady because as they admit new clients to the program, other community members are learning about the program through the ESNT Web site, autism-specific groups such as the Autism Society of America and Families for Effective Autism Treatment, physicians, and other service providers. They have added two additional staff members to their treatment team, anticipate being able to serve more children relatively quickly, and hope to decrease the number of families waiting for services.
The interest list at MHMRA of Harris County continues to grow even as children on the list enter into services. The program continues to receive phone calls from parents who learned of the availability of services on the DARS Web site. Referrals also continue from the Meyer Center for Developmental Pediatrics at Texas Children’s Hospital in Houston. MHMRA anticipates expanding services in the next few months and, with that expansion, will likely see a decline in the number of children on their interest list.
Texana Center continues to provide information via its Web site and through speaking engagements upon request. The Center reports an increase in the number of 3 year olds applying for service. A new building is under construction that will provide additional space to admit more children currently on the waiting list. The target date for completion of the new building is May 2009.
Kyle was 7 years old when admitted to the Autism Services Program at the Child Study Center. He has a diagnosis of autistic disorder and lives with his parents and younger sister. At the time of admission, Kyle engaged in severe problem behaviors that prevented him from learning new skills and caused severe stress for him and his family. The most severe problem behaviors were related to clothing and food. Kyle refused to wear anything other than a specific pair of shorts, a tank top, and flip-flops. He would remain naked in his room while these particular articles of clothing were washed, refusing to wear anything else. In addition, he was rarely willing to eat anything other than uncooked spaghetti. He drank only an occasional sip of Dr Pepper, as well as a drink of water from the faucet every few days. When Kyle’s parents attempted to prompt him to eat a more varied diet or wear different clothes, he engaged in severe tantrums that included loud screams, verbal threats, aggression, property destruction, and banging his head against the wall. Because of the severity of Kyle’s tantrums and his physical strength, his parents were unable to manage and control his behavior, resulting in severe disruption to normal family life. In addition, Kyle was significantly underweight because of his limited diet.
Kyle’s treatment plan had three main goals: first, to decrease Kyle’s problem behavior such that he could benefit from the services of the Jane Justin School; second, to help him to eat an appropriate variety and amount of food; and third, to enable him to wear appropriate clothing. The treatment plan consisted primarily of reinforcement of appropriate behavior and extinction of inappropriate behavior. For instance, Kyle was allowed access to preferred activities when he accepted food or clothing without problem behavior (reinforcement), and engaging in a tantrum did not result in his being allowed to avoid food or remove his clothing (extinction).
Kyle’s problem behavior decreased dramatically as a result of the treatment. On the first day of admission, problem behavior occurred during 88.9% of 5-minute intervals; however, the problem behavior had decreased to an average of 11% of 5-minute intervals during the last 6 sessions of that same month. The following month, problem behavior occurred during an average of 0.4% of 5-minute intervals. During that time, Kyle’s parents were trained to implement the same type of treatment in the home. The parents reported that Kyle’s behavior improved dramatically in the home as well. He started requesting a variety of foods (including sushi), and wore a variety of clothing (including a self-selected Halloween costume — a space suit).
Kyle was able to start attending the Jane Justin School (a school for children with developmental disabilities located in the Child Study Center) full time within three months of the start of treatment. At first, tutors from the Autism Services Program accompanied Kyle and provided one-on-one instruction and shadowed him constantly. Gradually, the tutors decreased their assistance, so Kyle could function as any other student in the classroom. Eventually, he was discharged from the Autism Services Program and admitted to the school. His behavior is now exemplary and he is able to engage in many learning and social activities. According to parent report, his behavior at home is also dramatically improved.
Sally is a 5-year-old female with an autism spectrum disorder. She lives with her parents and three sisters. Sally attended public school in a special needs classroom before attending the Skills Intervention Program (SkIP) at MHMRA of Harris County.
Sally’s behaviors were severe and included aggression in the form of hitting, kicking, biting, scratching, and pinching. She also had some self-injurious behaviors including head banging and pinching herself as well as property destruction. Sally had no imitation skills, functional communication skills, or receptive language skills.
When Sally finished the 90 days of classroom training, her aggressive behaviors had decreased from an average of 12 per session to 4 per session. She learned to use a picture exchange communication system as well as sign language. She was also fully toilet-trained!
Sally’s parents feel the SkIP program was very beneficial for her. Her parents took such an interest in Applied Behavior Analysis and were so impressed with Sally’s improvements that they formed their own in-home program for her. Sally is now able to play more appropriately with her sisters, go out in public without throwing a tantrum, and learn in an age-appropriate environment.
Diego is 5 years old and lives with his parents and younger sister. Upon admittance to Easter Seals North Texas (ESNT) Autism Treatment Program, Diego had difficulties with transitions, fear of other children (especially his sister), and difficulties with communication (he is at times hard to understand). He was diagnosed with autistic disorder in September 2006 at the Autism Clinic at Children’s Medical.
Following assessment, it was recommended that Diego receive 1:1 intensive applied behavior analysis services with some small group instruction to work on social skills and generalization. He attends the ESNT program for 6 hours per day. Initial teaching programs focused on the areas of communication, activity engagement (increased duration and diversity), and pre-academic skills (counting, letters and sounds, descriptions). He also began to receive speech and occupational therapy. His ABA case manager, speech language pathologist, and occupational therapist collaborate regularly to discuss any challenges that may arise as well as his targeted skills. In-home parent training was conducted monthly, primarily to work on his tolerance and interaction with his sister.
When Diego started at ESNT he requested items using just one or two words. Currently, he requests items using five or more word phrases. He had difficulty interacting with his peers, but now he independently initiates contact with his peers and responds to them more fluently. He has mastered many skills, learning to expressively label new things (e.g., community helpers, personal information), pre-academic skills (e.g. counting, reading), fine motor skills (e.g., cutting, drawing), gross motor skills (e.g., throwing and catching a ball), and language skills (e.g., questions, negation, reciprocal commenting).
Most importantly, at home he now tolerates being in the same room with his sister, and his parents can now take both children for a ride in the car at the same time, which they haven’t been able to do for a long time. With his increased abilities to transition throughout the day, participate in activities with peers, attend in small-group settings, and communicate his needs and wants more effectively, his ABA case manager feels that he now has the fundamental skills to be successful in a classroom environment.
Chance was 3 years old when he entered services at Texana Center in May 2008. Upon admission, Chance’s verbalizations were limited to a few sounds and word approximations. He did not interact with his peers, was not toilet trained, and had poor attending skills. Chance now speaks in phrases and asks questions. He is attentive to his therapists and initiates play with his peers. He has progressed from naming pictures to participating in a reading program. Chance is now toilet trained and requires 1:1 intervention for only a portion of each day. Chance’s mom reports that he is socializing with neighbors and friends and is participating in birthday parties. She was happy to report after Thanksgiving that Chance got a haircut with no screaming and that her family was amazed at his progress. She bragged that they had been able to play games to their end and make cookies together. She was also pleased to report that she had held her first “real” conversation with her son.
DARS is in the final stages of developing a survey to gather meaningful data related to child progress. The survey will assess variables such as parental satisfaction with the autism providers and children’s level of improvement in the areas of communication skills, social interaction, play skills, self-help skills, and overall behavior. Similar methods have been used to assess response to intervention in children on the autism spectrum (Boyd and Corley, 2001) and (Cohen, Schmidt-Lackner, Romanczyk, and Sudhalter, 2003).
The survey will be administered in January 2009.