I am the director of the Autism Special Education Legal Support Center, a program of Massachusetts Advocates for Children (MAC). In this role, I work with our expert staff of dedicated attorneys and parent advocates to develop training materials and outreach strategies to reach parents and professionals working with children on the autism spectrum. I supervise provision of legal technical assistance and case advocacy, and help to spearhead the Center’s legislative and policy initiatives focused on removing systemic barriers faced by children with autism spectrum disorders.
MAC is a private non-profit organization founded by Hubie Jones in 1969 as the Task Force on Children Out of School. For 40 years MAC has responded to the needs of children who are vulnerable because of poverty, race, limited English proficiency or disability. MAC is dedicated to being an independent and effective voice for children who face significant barriers to equal educational and life opportunities.
The Autism Special Education Legal Support Center was started in the fall of 2002 in response to the dramatic increase in the number of calls MAC was receiving from parents of children on the autism spectrum who were not getting the essential services they needed from their school districts. It became evident that children with ASD were facing tremendous obstacles to obtaining appropriate services from school systems that were ill-prepared to address the needs of the rapidly increasing number of young children diagnosed with ASD. The Center was launched in recognition of the fact that parents need legal and advocacy support to overcome these obstacles.
Time and again we find that administrators frequently limit service options for students on the autism spectrum, based on erroneous presumptions about limited competence and educational potential of children with autism. When children with autism fail to make progress, parents are frequently told that their child simply doesn’t have the competence to acquire speech or to improve social and academic skills “because the child is autistic,” rather than providing services which reflect presumed competence. Research demonstrates that when children with autism receive intensive, coordinated services, they can thrive academically and socially, and can increase communication skills.
Furthermore, parents and teachers are often unaware of the school district’s legal obligation to provide services that reflect the competency and potential of children with autism, and may not be fully informed about the full array of services and supports available to meet the individual needs of children with autism.
Many families from immigrant communities also face significant linguistic and cultural barriers. All too frequently parents receive important special education documents that have not been translated into their native language, making it virtually impossible for them to participate in the special education decision-making process. It is critical to work closely with parents to understand and then effectively address the many cultural as well as linguistic barriers faced by families from underserved communities.
School district special education costs can create obstacles for families. However, research has shown that when school districts provide necessary services to children on the spectrum early on, municipalities avoid more extensive costs down the road. Children who do not receive appropriate services at young ages are more likely to require services for a longer period of time in more restrictive (and therefore more expensive) settings as they get older. Studies have found that the provision of intensive services (such as Applied Behavioral Analysis) at early ages can result in estimated cost savings ranging from $187,000 to $203,000 per child 3-22 years, and a total lifetime savings range of 1 to 2 million dollars per child.
The Center provides support to parents of children with autism, advocates, educators, service providers, and lawyers by providing information about legal rights governing the education of children with autism, the array of services available, and strategies for ensuring that a child receives services that meet his or her unique needs. The Center provides:
- Autism Legal Helpline: Callers receive free technical assistance and answers to their questions about educational rights of children with disabilities on the autism spectrum.
- Advocacy Services: Callers who need assistance for their child receive free technical assistance, advocacy assistance, and/or referral to a private or pro bono attorney. The Center also provides free legal advocacy for a limited number of cases.
- Free Community Workshops on Autism: The Center provides workshops for parents, educators, lawyers, and medical professionals to address legal requirements and effective strategies to secure the full range of educational services necessary for children on the autism spectrum. These workshops focus on legal rights and procedures, MCAS, literacy, behavioral and social supports, and access to the general curriculum.
- Intensive training and advocacy project designed to provide culturally and linguistically-appropriate services to Latino and Haitian parents of children with autism.
- Legislative & Policy Advocacy: The Center addresses system-wide barriers affecting children with autism.
Some of the Center’s major accomplishments since its inception are described below:
- The Center has provided legal representation and technical assistance to approximately 1,400 parents experiencing difficulty obtaining necessary special education services for their child with autism.
- The Center has provided specialized training to approximately 2,900 parents of children with autism. 98% of the parents responding to workshop evaluations stated that they gained important knowledge regarding special education laws, with 97% stating that they acquired a better understanding of how to advocate effectively for their child.
- The Center has provided approximately 2,250 medical professionals and educators who work with children on the autism spectrum with training regarding relevant special education laws and procedures. Over 90% of the professionals responding to the workshop evaluations stated that they gained information from the training that will help them advocate more effectively for services for children with autism.
- This summer the Center celebrated its most recent legislative victory when the Governor signed legislation which requires that special education teachers receive instruction on the appropriate use of augmentative and alternative communication and other assistive technologies. As approximately 50% of the children on the spectrum are nonverbal or have limited speech, this bill is an important first step to help ensure that special education teachers are adequately prepared and can facilitate access to the general education curriculum and inclusion.
- MAC’s autism anti-bullying bill was incorporated into the state’s new omnibus anti-Bullying bill signed by the Governor this spring. The new law ensures that IEP Teams address bullying of children on the autism spectrum, specifically focusing on the skills necessary to help individual children avoid and respond to bullying, harassment, or teasing. Requiring IEP teams to address bullying as it impacts individual students with ASD, coupled with new provisions requiring school-wide bullying prevention programs, will help to work towards effectively mitigating the instances and effects of bullying for children with autism.
- The Center worked successfully to secure enactment of the Massachusetts Children’s Autism Medicaid Waiver Act. As a result, approximately 150 low-income children with ASD at risk of institutionalization will receive necessary intensive in-home services necessary to remain in the community this year.
- The Center provided leadership necessary to secure passage of the state Autism IEP Act, which requires the IEP team to consider and specifically address the full range of a child’s complex communication, social, behavioral, and academic needs resulting from ASD to help ensure provisions of necessary services.
For more information about MAC, please visit the Massachusetts Advocates for Children website.
Julia Landau. Esq.
Senior Project Director
Massachusetts Advocates for Children
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.