Long Island Behavior Analysis Conference

Unique Collaboration for Youth with ASD

Despite the abundance of supports available today to help young people with Autism Spectrum Disorder (ASD), many youth are still struggling behaviorally. In most cases families do everything they are advised to do by professionals, but their children are still getting suspended from school, causing problems at home, and are unable to participate in many activities of daily life. Some of these youth have been placed in psychiatric hospitalizations, and others have been involved with the juvenile courts.

With up to 70 percent of people with ASD meeting diagnostic criteria for at least one emotional or behavioral disorder, a team at the Floating Hospital for Children at Tufts Medical Center in Boston devised an innovative approach to address the behavioral health needs of this population. In 2011, they proposed the creation of a joint program between the Tufts Divisions of Child Psychiatry and Developmental-Behavioral Pediatrics to integrate care for these youth so that they could experience success in all aspects of their lives.

A private philanthropist saw the merits of the novel endeavor and provided a substantial gift to launch the Tufts Autism Behavioral Consultation (ABC) Program in December 2012. The philanthropic donation was critical: the unique interdisciplinary and comprehensive nature of the ABC Program requires significant clinician time that is not reimbursed through insurance plans.

The mission of the Tufts ABC Program is to improve the emotional and behavioral functioning of youth ages 6-22 with ASD at home, in school, and the community through a family-centered, interdisciplinary approach informed by empirically validated behavioral and psychotherapeutic practices. The ABC team includes Erik von Hahn, MD, Developmental-Behavioral Pediatrician; Eric Goepfert, MD, Child/Adolescent Psychiatrist; Christina Mulé, PhD, NCSP, Fellow in Clinical Psychology; and Bernadette Murphy Bentley, MPA, Autism Resource Specialist.

Focusing on youth with ASD for whom standard medical, therapeutic, and educational treatments have not been working well, the Tufts ABC team collaborates with the family, the school, the pediatrician, in-home and private therapists, and all other providers to determine possible causes for the youth’s challenges. Using a modified Multi-System Therapy (MST) approach over three to ten visits, the team then integrates treatment with all of the involved professionals to develop the youth’s needed skills and to improve functioning. After a maximum of ten visits, care coordination is returned to the child’s community medical providers to carry on integration of treatment.

What does the service look like? One of the key contributions of the Tufts ABC Program is in how the team works with the youth’s service providers and provides extensive telephone consultation and case management, in addition to face-to-face meeting time. Although the program always start with the child and his or her family, ABC team appointments can include siblings and grandparents; teachers and school therapists; staff from the Department of Developmental Services and other state programs; educational advocates and IEP team leaders; and any other providers working with the family. The purpose of the meetings is to help ensure that the child’s care is not fragmented, and to clarify the goals that the youth and family agree are most important to them.

Families and professionals who have been involved in the ABC Program have reported great satisfaction with it. One guardian said, “From our first meeting, it was clear I now had a team working with me and I was so relieved. I’ve felt like I’ve been on my own all of these years and it was like a breath of fresh air to learn about all the resources that are available to our family, and to know that professionals were going to work together to truly make a difference in my child’s life.”

A parent whose child was in the program stated, “We have a complex family dynamic, and the ABC team has been able to take the time to troubleshoot difficulties and come up with new approaches for us to try. One of the most impressive parts of the program is that the doctors gave our son the encouragement and a safe place to express angry feelings, which has opened up a whole new level of communication with him.”

An in-home therapist said of the program: “Our meetings with the ABC team have enabled us to work together to offer a more comprehensive level of care to our client. I believe that through this innovative collaboration, we have helped the family balance the educational, medical, and mental health needs of their child.

With the initial success of the Tufts ABC Program, it was expanded from a monthly clinic to three times a month during the first year. So that a rigorous evaluation of the positive results of the program could be conducted, the ABC team applied for and was awarded a highly competitive two-year grant of $250,000 in May 2014 from the Office of the Massachusetts Attorney General (AGO). The purpose of the AGO grant is to increase “access to, and measure the benefits of, providing behavioral health services in Massachusetts” and the ABC Program will do so by striving toward three objectives: 1.) to increase health and well-being of patients with ASD; 2.) to improve quality of care; and 3.) to reduce costs.

The Tufts ABC Program will be expanding further this fall to a twice-weekly clinic to better meet the needs of families. Referrals must come from a youth’s current medical provider (pediatrician, psychiatrist, psychologist, etc.) who will be responsible for care coordination after the program is finished. For an ABC intake form or more information, please contact bbentley@tuftsmedicalcenter.org.

 

Bernadette Murphy Bentley, MPA, is the Autism Resource Specialist/Family Support Coordinator at the Center for Children with Special Needs at Floating Hospital for Children at Tufts Medical Center in Boston.

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