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The Massachusetts Autism Commission’s Report: Recommendations to Create a Comprehensive Autism Service System

The bill creating the Massachusetts Autism Commission was signed into law by Governor Deval Patrick in April 2010. Membership was required by law to consist of four members of the Massachusetts state legislature, fourteen representatives from state agencies, and fourteen citizen members including but not exclusive to parents, local non-profit managers, medical doctors and individuals with autism. Four subcommittees were also created to analyze the needs of individuals within certain age groups.

The legislative resolve establishing the Massachusetts Autism Commission directed its members to study a wide range of lifespan issues facing individuals with classic Autism, Asperger’s Syndrome, High Functioning Autism, and Pervasive Developmental Disorder-Not Otherwise Specified. These issues included but were not exclusive to: coordination of state human service agencies, provision of adult human services, mental health services, public education, and independent living.

The Commission studied these issues as well as others and drafted 13 priorities that reflected what the members believed to be the most pressing issues facing individuals with autism in Massachusetts. The recommendations were drafted and agreed upon by the citizen Commission members; the state agency representatives provided content expertise during the drafting process. The recommendations do not imply the endorsement of the Patrick Administration or any state agency.

A total of 79 recommendations appear in the final report released in March 2013. Next to every recommendation, it was indicated who or what agency would be responsible for implementing each as well as what resources would be needed to do so. Each recommendation was labeled with a start date to indicate when work would begin; an end date displaying when the recommendation should be fully implemented was also provided. The combination of the priorities, recommendations, and timeline created a 10 year roadmap designed to achieve the goal of creating and maintaining comprehensive supports and services for children and adults with autism in Massachusetts. The following is a sampling of the recommendations that appear in the report.

Summary of Recommendations

The number one and two priorities of the Autism Commission recommend changes to eligibility statues and regulations at the Department of Developmental Services (DDS) and the Department of Mental Health (DMH) respectively. Currently, DDS requires adult applicants to have an IQ of 70 or lower to be eligible for adult services. Despite their possible adaptive functioning limitations, adults with autism with IQs over 70 are ineligible for services from DDS. The Commission recommends that DDS no longer use IQ as a means to determine eligibility for its adult services. At the DMH, both children and adults with a primary diagnosis of an autism spectrum disorder are often found ineligible for services despite having a co-occurring serious mental illness. In these cases, an individual’s functional limitations are considered a result of the individual’s autism diagnosis. To counter this, the Commission recommended that DMH’s statutes be changed to reflect a primary diagnosis of autism not be grounds for finding a person ineligible for DMH services.

Lack of accurate data on the state’s autism population was found to be one of the biggest obstacles hindering policymakers attempting to address the need of the growing autism population. Many state agencies collect data on individuals they serve. Due to different, incompatible systems it is impossible to keep track of the numbers of individuals with autism and their needs. The Commission recommended that the Executive Office of Health and Human Services (EOHHS) inventory current data collection systems in and out of state and use this information to design a comprehensive data collection mechanism in Massachusetts.

Some recommendations require state programs to increase the number of individuals they serve. The Children’s Autism Medicaid Waiver is designed to serve children with autism between the ages of 0 and 9, who are at risk for institutional placement. Annually, upwards of 205 children benefit from this intensive in-home community based program. This is a fraction of the number of children the program could serve; 800 children applied for the Children’s Waiver during an open enrollment in 2012. The Commission recommended that the Children’s Autism Waiver increase both the yearly number of children served to 500 and the age of eligibility to be greater than nine.

The state’s seven community-based statewide Autism Support Centers were recognized by the Commission as excellent sources of support and information to families caring for a child with autism. Currently, the Support Centers are only funded by DDS to serve children with autism and their families. This prohibits the Centers from serving adults with autism. The Commission recommended increasing the ages of individuals served at the Centers as well as increase state funding for the centers to work with a larger population.

During the Commission’s discussions, it was noted that a few existing services needed to be improved to better meet the needs of the diverse autism population. The state’s Adult Medicaid Waiver is a tremendous source of support for adults with a range of disabilities. The Commission recognized the needs of adults with autism in the Waiver program do not always mirror the needs of people with other disabilities. Enhanced behavioral support consultation was recommended for DDS eligible adults with autism as well as improved and increased availability of behavioral support for adults with autism living in group homes.

In recent years, laws in Massachusetts such as the Autism IEP Act and the Transition Specialist Endorsement were passed to improve the education students with autism and other disabilities receive in public schools. Due to lack of resources and capacity, Massachusetts struggles to ensure school districts are complying with these laws. The Commission recommended a coordinated system be created to review education complaints and a new data system developed to track the complaints people make and their progress. To further ensure students receive the education they are entitled to, the Commission also recommended an Autism Endorsement be created for teachers to expand their knowledge on how to effectively educate children and youth with autism.

The Commission heard many families and individuals voice their frustration with the lack of coordination between state agencies. The Massachusetts Early Intervention program provides access to comprehensive services and treatment for all children prior to age three including specialty services for children diagnosed with autism. After age three, children transition to their early childhood education system to receive services. Unfortunately, the type of services the child receives post EI depends on his or her IEP, health insurance, and school district resources. This transition often causes a disruption in services for young children causing them to regress in the skills they acquired while in EI. The Commission recommended that EI train staff about the state’s autism insurance law and develop tools to help staff and families navigate insurance options for behavioral treatments after age 3 in order to maximize a family’s available resources as much as possible.

Access to accurate information on services and resources was found to be another way to improve coordination and alleviate stress for families and individuals. It was determined that since DDS’s Division of Autism is one of the main state agencies that interact with individuals with autism it should be designated as the state agency for information and referral for individuals with autism throughout their lives.

Progress

In January 2013, the Commission filed 14 pieces of legislation to address multiple recommendations. Hearings have been held on six of the bills while five more bills will be heard in September 2013. The Chair of the Autism Commission, Barbara L’Italien, as well as staff to the Commission Faith Behum, made multiple presentations across the state about the report’s findings and recommendations to the autism community. The purpose of these presentations is to educate people in the community about the report and discuss with them what they can do to make the recommendations a reality. The Commission is working on the prospect of becoming a permanent entity in the state that will monitor the progress of the recommendations as well as examine new issues facing the autism community. The Commission has a long road ahead towards full implementation of all 79 recommendations but is well prepared for the journey with its 10 year roadmap.

 

If you have any questions about the Autism Commission report, please contact Faith Behum, Disability Policy Specialist at the Massachusetts Developmental Disabilities Council at Faith.Behum@state.ma.us or (617)770-7676 ext.107. The entire Autism Commission report can be located at http://www.mass.gov/eohhs/gov/commissions-and-initiatives/autism/the-massachusetts-autism-commission-final-report.html.

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