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Major Initiatives - Autism Center
 
 

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Addressing Bullying of Children with ASD

Autism Commission Report

Augmentative and Alternative Communication (The AAC Bill)

Children's Autism Medicaid Waiver

Autism IEP Act

Advocacy in Underserved Communities

Young Adult Leaders Fellowship Program

Addressing Bullying of Children with ASD

Massachusetts Advocates for Children provided leadership and public awareness efforts to support the autism anti-bullying bill, which 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. 

The bill also requires IEP teams to address bullying as it impacts individual students with social skills development or when the student’s disability makes him or her vulnerable to bullying harassment, or teasing the IEP must address the skills an proficiencies needed to avoid and respond to bullying, harassment or teasing. Coupled with new provisions requiring school-wide bullying prevention programs, it will help to effectively mitigate the instances and effects of bullying for children with autism as well as other disabilities.
 


In the fall of 2009, nearly 400 parents of children with Autism Spectrum Disorder (ASD) responded to an online survey with shocking accounts of how their children are bullied persistently and sometimes severely in cities and towns across the Commonwealth. MAC reported the findings in a November 2009 publication, Targeted, Taunted, Tormented: The Bullying of Children with Autism Spectrum Disorder. (click for Boston Herald article).

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The Autism Commission Report

On Wednesday March 28, the Massachusetts Autism Commission Report was released in a ceremony in the Gardner Auditorium at the State House. A culmination of more than two years of work, the Autism Commission was comprised of members of the legislature, state agency heads, educators, autism experts, advocates and parents.

The Autism Commission Report provides an overview of services currently available in the Commonwealth to children and adults with autism, identifies gaps in services and makes concrete recommendations as to how to better meet the needs of individuals on the autism spectrum.

We sincerely hope you find the report (divided into three categories below) to be of interest to you.

Autism Report: Executive summary

Autism Report: Abbreviated version

Autism Report: Full report

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Augmentative and Alternative Communication (The AAC Bill)

MAC led a major campaign resulting in enactment of of the Center’s 2009-2010 priority legislation, An Act to Improve Teacher Training in Augmentative and Alternative Communication. The new law ensures that teachers of students with moderate disabilities and teachers of students with severe disabilities receive instruction on the appropriate use of augmentative and alternative communication devices. The law is a critical first step, as teachers of students with moderate disabilities represent the majority of special education teachers. In enacting the AAC bill lawmakers recognized that it is essential to statutorily protect the rights of children with autism and other disabilities who are nonverbal or have limited speech and use AAC.

In 2011, MAC subsequently led strong advocacy efforts to ensure that the Department of Education issued regulations addressing issues critical to ensure full and effective implementation of the new law. The Department issued regulations, and also agreed to issue Guidelines for the development of teacher preparation programs that address areas of concern voiced by MAC and others during public testimony. MAC provided extensive input to the Department in the creation of the Guidelines and developed a comprehensive list of AAC Resources that can be used to support the preparation of teachers of students with moderate to severe disabilities.

Links:

An Act to Improve Teacher Training in Augmentative and Alternative Communication

DESE Regulations - 603 CMR 7.00

DESE Guidelines for the Preparation of Teachers of Moderate and Severe Disabilities: Instruction on the appropriate use of augmentative and alternative communication and other assistive technologies.

To read about your rights regarding assistive technology and devices (including augmentative and alternative communication) under federal special eduction law, click here.

 

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Children's Autism Medicaid Waiver

Children’s Autism Medicaid Waiver Update
One of MAC’s long term priorities was the development of the Children’s Autism Medicaid Waiver
Program. The Children’s Autism Medicaid Waiver is a program Massachusetts developed to
provide intensive in-home services (such as ABA and DIR/Floor Time) for children with autism
spectrum disorder (ASD) and other services that will support children who are from low-income
families in their homes and communities.


Eligibility Requirements
The program is limited to children between the ages of 0-8 who are Medicaid eligible and at risk
of institutionalization now or at some point in the future. Each child is eligible for up to $25,000
worth of services per year. Under the Waiver, the federal government will reimburse
Massachusetts 50% for the cost of intensive in-home services.


Status

Massachusetts Advocates for Children continued to conduct legislative and administrative activities to work towards full implementation of the Children’s Autism Medicaid Waiver which provides intensive in-home services for low-income children at risk of institutionalization.  Over 120 children are now receiving services through the Waiver. MAC’s successful advocacy efforts focused on maintaining level funding of $2.5 million for the Waiver and resolving major issues of concern regarding the Commonwealth’s new five year re-application to the federal government for the Waiver. With the limited time to get the word out, project staff proved intensive outreach to organizations, providers and schools across the Commonwealth so they could help identify families and inform them about the Waiver process for applying during the most recent application session  in September 2010.


History of the Waiver
Massachusetts developed the waiver program because a state law was passed in October 2005,
as a result of advocacy efforts of MAC’s Autism Special Education Legal Support Center and
other autism and parent groups throughout the Commonwealth. The Waiver received broad
support, with lead sponsors Rep. Barbara L’Italien, Sen. Robert Antonioni, as well as Senate
President Therese Murray and other critical legislative leaders. This law required the
Commonwealth to apply to the federal government for a Home and Community Based-services
Medicaid Waiver (“Waiver”) to provide services for children with autism. MAC’s Autism Center
convened a broad-based group of parents, providers, advocates and other professionals for two
years to develop recommendations regarding eligibility, range of services and provider
qualifications for the Waiver. The Center submitted the Statewide Recommendations to DMR’s
Division of Autism in January 2006.

The Commonwealth’s Executive Office of Health and Human Services submitted an
application for the Waiver to the federal government in December 2006. On September 20, 2007,
the Department of Mental Retardation announced federal approval of the Children’s Autism
Medicaid Waiver.

The initial enrollment period for applications opened on November 5, 2007 and closed on
November 16, 2007. During the eleven day application period, the Department of Mental
Retardation received more than 1,100 applications for the Waiver from families all over the
Commonwealth.

To ensure that children throughout the Commonwealth could obtain a waiver slot, families were
selected through a lottery process. Some children were found ineligible and as a result other
children who applied during the initial enrollment period in November were chosen by lottery for
the Waiver.

For more information regarding the Children’s Autism Medicaid Waiver, contact Johanne Pino at
Massachusetts Advocates for Children at 617-357-8431 x234 or JPino@massadvocates.org.

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Autism IEP Act

The Center worked successfully in 2005-06 to secure enactment of the 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 provision of state-of-the-art supports and services. The new law became effective in July 2006, and subsequently the Massachusetts Department of Elementary and Secondary Education (DESE) issued a Technical Assistance Advisory regarding implementation of the new law. Project staff integrated the strong components of this advisory into its training curricula to enable parents and professionals to utilize the state’s policy effectively and help implement the law.

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Advocacy in Underserved Communities

Children with autism from diverse ethnic and linguistic communities frequently face additional barriers. Through our outreach to Haitian families in Boston and Latino families in Lawrence since 2005, our experience has demonstrated the time-consuming and labor-intensive nature of the work necessary to effectively reach these underserved families.

First, many families experience key cultural barriers, especially parents who are recent immigrants. In some cultures, there may be a strong belief that the presence of disabilities should remain confidential within the family. This privacy concern can be even stronger for disabilities such as autism, which are hidden disabilities with a particular stigma, producing strong feelings of shame in certain communities. In addition, some recent immigrants may come from countries with repressive political regimes (e.g., Haiti, Guatemala) which do not support voicing disagreements with public officials and advocating for legal rights, as required in the special education process.

In addition, families with Limited English Proficiency face significant difficulties, especially as school systems frequently fail to provide interpreters and translators, as required by law. Because special education law requires so many written-based procedures and rights – pages upon pages of IEPs, evaluations, laws, etc. it is essential that communications be provided in the parents’ native language. However, even then, some families have the added barrier of illiteracy. Parents who are not literate in their own language cannot avail themselves of translated material and are at a distinct disadvantage in learning how to advocate for their children’s rights.

Furthermore, project staff found that although the Center’s training materials have proven to be very effective for parents literate in English, the written translated materials are not as effective for some non-English-speaking parents. It became clear that staff need to redesign the training programs, so that they would be less didactic, less reliant on written materials, and encourage parent participation.

For all of these reasons, families of children with autism from diverse ethnic and linguistic communities require specialized outreach, training, and advocacy services to effectively meet the needs of this vulnerable group of children.

Through the practical experience we have gained over the past four years, we adapted innovative approaches and methodologies to better provide our educational training and advocacy services to these families. MAC’s Autism Center is in the process of writing a manual of best practices and lessons learned for distribution in Massachusetts and nationwide.


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The Young Adult Leaders Fellowship Program at MAC

Massachusetts Advocates for Children invites young adults 18-26 on the Autism Spectrum to apply for an innovative Young Adult Leaders Fellowship which provides opportunities to learn the professional skills needed to advocate on behalf of other youth with disabilities. The Fellowship is a partnership between Massachusetts Advocates for Children and the Institute for Community Inclusion at UMass Boston. The Young Adult Leaders Fellowship consists of one year part-time advocacy training under the supervision of the Autism Project Advocate and senior attorney. A small stipend is provided.

Please help us get the word out to young adults who might be interested in the Fellowship. We would appreciate it if you would forward a link to this page so that others can be informed about this exciting opportunity.

If you have questions, please feel free to contact Catherine Mayes at 617-357-8431 x 241 or by email.

The application deadline is SEPTEMBER 20, 2013.

CLICK HERE FOR INSTRUCTIONS & APPLICATION.

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For 40 years, MAC has responded to the needs of children who are vulnerable because of poverty, race, limited English or disability and does not intend to stop. With education reform continuing to occupy a high priority on the state’s policy agenda, and with the severe economic crisis facing Massachusetts families, MAC is needed now, more than ever.

 
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