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Image of hands, bodies, and instruments around a face: Autism is a complex developmental disability.
 
 
 
 
 
 
 
 

INTERVIEW WITH JULIA LANDAU, JD

September 23, 2005

 

NLMFF interviewed Julia Landau, JD, Director of the Autism Special Education Legal Support Center at Massachusetts Advocates for Children (MAC), about the services that MAC provides, the work of the Autism Special Education Legal Support Center, and special education law in general.
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NLMFF: Could you tell us a bit about Massachusetts Advocates for Children in general and about the work that it undertakes?

MAC:
Massachusetts Advocates for Children (MAC) is a private non-profit organization originally founded by Hubie Jones in 1969 as the Task Force on Children Out of School. For over 30 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.

MAC uses a broad range of strategies to get results and change the conditions that limit opportunities for children. These strategies include building coalitions, helping empower parents and community leaders, providing technical assistance and training, conducting case advocacy, advocating at the administrative and legislative levels, writing reports and, when necessary, litigating. MAC acts to hold public institutions accountable and prioritizes systemic change in order to have the greatest impact affecting the most children.  Through its intake process, case advocacy and trainings, MAC also works to assure that the needs of individual children are met.

Children with disabilities in Massachusetts have always been a priority for MAC, beginning in 1971 when MAC exposed widespread exclusion of students with disabilities from public schools. Building on its explosive investigative report, The Way We Go To School, MAC then helped spearhead enactment of Chapter 766, the nation’s first special education law, and has continued over the years to provide comprehensive training, technical assistance, monitoring, and advocacy services to children with disabilities and their parents. MAC actively monitors compliance with local, state and federal special education laws, and has successfully represented low-income students with disabilities in impact litigation.

NLMFF: Could you tell us about the Autism Special Education Legal Support Center at MAC?

MAC: 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 in order to overcome these obstacles.

The Autism Special Education Legal Support 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 Hotline: 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.
  • Legislative & Policy Advocacy: The Center addresses system-wide barriers affecting children with autism.

NLMFF:  What is your role within the Autism Special Education Legal Support Center at MAC?

MAC:  I am the director of the Autism Special Education Legal Support Center. 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 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 ASD.

NLMFF: What are the most common obstacles that families face in trying to obtain appropriate services for their children with special needs in public schools?

MAC: 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. Research demonstrates that when children with autism receive intensive, coordinated services, they can thrive academically and socially, and can increase communication skills. However, schools frequently limit available services based on immediate short-term costs and on assumptions that children with autism have limited competence and potential. 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.

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. Parents need to be informed about various program and service options for children with autism, including: assistive technology, augmentative communication, communication specialists, specialized speech therapy, facilitated communication, socialization supports and services, pragmatics, literacy instruction, behavioral supports, sensory integration, Applied Behavioral Analysis (ABA) services, Floortime services, home services, parent training, occupational therapy, summer programs, and 1-to-1 aides. In addition, parents require support in advocating for the range of program and service options that reflect high standards for children with autism and maximizes their potential.

Many of the Commonwealth’s families from immigrant communities also face significant linguistic and cultural barriers. All too frequently parents receive critical 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.

NLMFF: How successful has the Center been in providing information to and helping families affected by autism?

MAC: Since its inception, the Center has:

  • Provided legal representation and technical assistance to over 450 parents experiencing difficulty obtaining necessary special education services for their children with autism.
  • Provided specialized training to approximately 1,100 parents of children with autism. 97% of the parents responding to workshop evaluations stated that they gained important knowledge regarding special education laws, and 95% said that they acquired a better understanding of how to advocate effectively for their child.
  • Collected and analyzed approximately 300 completed surveys from parents of children with autism to evaluate barriers, patterns, and trends in accessing the full range of services and supports for children with ASD. Priority concerns raised by parents included: barriers in securing appropriate behavioral supports and services; obstacles faced obtaining necessary social supports and services; and difficulty obtaining adequate supports and services for inclusion.
  • Provided approximately 700 medical professionals and educators who work with children on the autism spectrum with training regarding relevant special education laws and procedures. 99% 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.

MAC hopes that its advocacy efforts on behalf of individual children with ASD will benefit children throughout the Commonwealth. For example, MAC obtained an important ruling from the Bureau of Special Education Appeals which has widespread implications for children on the spectrum. In this case, the local school district administrators unilaterally made the placement determination for a child with autism in violation of state and federal laws requiring that the IEP Team, including parent and educators, determine the appropriate placement for the student. This ruling goes to the heart of special education law: each child should receive services and supports that meet the individual needs resulting from his or her disability, and should not be forced to accept an inappropriate placement to meet the administrative needs of the local school district. This important ruling should help thousands of children with autism in the Commonwealth by ensuring that parents and educators, who know the child best and understand the complex needs resulting from ASD, are active participants in determining a child’s appropriate placement and that this determination is not left to the discretion of the local school district’s administration.

NLMFF:  What should parents do if they do not feel that the school’s evaluation of their child is accurate?

MAC: The law gives parents the right to obtain an independent evaluation of their child at public expense if they disagree with the school district’s assessment. For example, if the parent disagrees with the conclusions and recommendations made by the school district’s psychological evaluator, the parent can choose an outside evaluator (not affiliated with the school district) to conduct a second independent psychological evaluation and request payment from the school district. The child’s Team must consider the independent evaluation in conjunction with the school’s evaluations, and may arrive at consensus regarding the child’s needs. If the Team cannot agree about what the child needs, the independent evaluation can support the parent’s position about what services are needed for his or her child.

In Massachusetts, there are two different paths for requesting that the school district fund an independent evaluation. One option (based on Massachusetts state law) requires parents to provide income information and allows the school district to apply a sliding fee scale to determine its share of the cost of the evaluation. The second path (based on federal law) does not require parents to provide income information and requires the school district to pay 100% of the cost of the independent evaluation, but allows the school district to challenge the need for the requested evaluation by filing for an administrative hearing. Under the first option (requiring income information and subject to a 16-month time limit) the school district cannot challenge the need for the requested evaluation, but must pay its share according to the sliding fee scale. (The sliding fee scale provides that the school must pay 100% of the cost for families with income at or below 400% of the federal poverty level. Families also do not need to submit income information if the child is eligible for free or reduced lunch.)

MAC has found that quality independent evaluations are critical to successfully challenge the appropriateness of the services offered by the school district. Parents should take care when choosing an independent evaluator by selecting an evaluator that has experience and expertise working with children on the spectrum. It is helpful to select an evaluator recommended by other parents of children with ASD, Autism Support Centers, or trusted medical providers. The goal is to find an independent evaluator who has experience working with children with ASD, writes individualized reports tailored to your child, and is willing to explain his or her written conclusions and recommendations by attending a Team meeting or, possibly, testifying at a hearing if necessary. If the parent will be requesting public funding for the evaluation, independent evaluator must also be willing (in most instances) to accept rates set by Massachusetts state regulations.

A parent always has the right to obtain an independent evaluation at the parent’s own expense (or paid for by private or public health insurance) at any time. The school district is legally required to convene a TEAM meeting and consider the results of the independent evaluation within 10 school days after receiving the report.

NLMFF:  What exactly is an IEP, and what should parents do if they disagree with the IEP proposed by school officials?

MAC:  An IEP (Individualized Education Plan) is a written statement that identifies a student’s unique special education needs and describes the services a school district must provide to meet those needs. The IEP document is developed in accordance with a form approved by the Department of Education that adheres to content requirements spelled out in the federal and state special education laws. Generally, the IEP should contain:

  • Parent concerns
  • Vision statement (reflecting the parent’s vision for the student and, once the student is age 14, reflecting the student’s vision)
  • Present levels of educational performance (including academic, social and emotional, behavioral, communication performance)
  • Specially designed instruction to meet the needs of the individual student
  • Related services necessary to allow the student to benefit from the specially designed instruction and/or to access the general curriculum
  • Specific annual goals and measurable short-term objectives or benchmarks
  • How the student will participate in state and local assessments (i.e., MCAS).
  • How the student’s progress will be measured
  • How the parents will be notified of the student’s progress
  • A list of services to be delivered including the projected start date and end date of each service.
  • Transportation needs
  • Transition needs
  • Any need for extended school day or extended school year (summer program).

The IEP must list special education and related services solely based on the child’s unique needs. The IEP is essentially a written contract spelling out what services the school district is obligated to provide to the student. Any service, support, modification or accommodation that is necessary for the child to receive a Free Appropriate Public Education (FAPE) should be clearly written in the IEP.

If a parent disagrees with the IEP proposed by the school district, the parent can reject all or part of the IEP. If rejecting in part, the parent should explain which parts of the IEP he or she is rejecting. The school must implement those parts of the IEP the parent accepts immediately upon receipt of the parent’s acceptance. The parent should identify if independent evaluations are requested (and in what areas, i.e. psychological, speech and language, etc.) to support changes to the child’s IEP.

NLMFF:  What should parents do if they feel that their child is not receiving the services in his or her IEP?

MAC: First, parents should try to corroborate their concerns about IEP services not being provided by asking questions of their child and their child’s teacher and service providers and asking for written reports or work as evidence that the services are being delivered. It is important that parents keep copies of their own notes and other information they receive in writing that shows the IEP is not being fully implemented. Parents should then notify the school in writing that they believe that the services called for in the IEP are not being delivered. (If the matter is urgent, providing a date by which the school must reply to the parents’ letter before the parents will file a complaint or a hearing request may compel the school to respond more quickly.)

If further inquiry supports that the services are in fact not being provided as written in the IEP and the school does not take satisfactory steps to correct the situation, the parents can file a complaint. In Massachusetts, complaints are filed with the Program Quality Assurance unit of the Department of Education (1-781-338-3750). The PQA unit will review supporting documentation submitted by the parents and by the school and will investigate the parent’s allegations that the IEP is not being implemented as written. Parents can also file a complaint at the Bureau of Special Education Appeals.

Although it preferable to resolve disputes informally whenever possible, depending on the urgency of the issue, it may be necessary to immediately file a complaint at PQA or a hearing request at the Bureau of Special Education Appeals.

The BSEA process is also available for parents who believe that the program and services outlined in their child’s IEP are inappropriate.

NLMFF: Can you tell us about the work pertaining to special education law that MAC undertakes with state policy makers?

MAC: MAC provides information to state policy makers regarding barriers faced by children with ASD in the public schools and changes necessary to ensure children with autism receive services that reflect presumed competence and potential.

For example, the Autism Special Education Legal Support Center focused on procedures and funding necessary to increase access to intensive in-home services required for children with autism to reach their full potential. Staff conducted substantial research and analysis regarding the impact of a children’s autism Medicaid waiver, and provided in-depth information to members of the state legislature and other policy makers. As a result, lawmakers filed legislation which directs the Commonwealth to apply for a federal Medicaid waiver for children with ASD to maximize federal financial reimbursement for critical in-home services.

Similarly, in early 2005 MAC provided a comprehensive review and comments on the state Board of Education’s proposed changes to the state’s special education regulations to ensure compliance with federal and state law and advocate for policies which reflect the full potential of children with autism. The Center developed and distributed informational materials regarding the proposed changes and took steps to inform lawmakers, policy makers, and the general public about major issues of concern. As a result of the Center’s activites and the widespread response of parents and advocates throughout the state, the Board maintained protections that are critical for children with ASD and other disabilities.

These are just two examples of MAC’s efforts to address system-wide barriers faced by children with autism. For further information, call 617-357-8431 x 234.

NLMFF: Where can families affected by autism find more information about their special education legal rights and options?

MAC: Families can call MAC’s Autism Legal Helpline at (617) 357-8431 ext 234 for technical assistance and ask to be informed about any upcoming parent trainings MAC has scheduled. MAC can also provide sample letters that parents can use to request independent evaluations or to obtain a copy of their child’s school records, as well as a tip sheet about special education legal rights. Families can also visit MAC’s website and select the “Programs” tab to be directed to information about the Autism Project at MAC. The Autism Center’s brochure and the tip sheet are also published on the website.

The Federation for Children with Special Needs is another agency that informs parents of special education legal rights. Their phone number is 800-331-0688. The Federation in conjunction with the state Department of Education also publishes a parent rights guide that summarizes information about special education legal rights. Families can also call the Disability Law Center, 1-800-872-9992.

Other important resources for families include:

  • Asperger’s Association of New England 617-527-2894
  • Autism Alliance of Metrowest 508-652-9900
  • Autism Center of the South Shore 800-482-5788
  • Autism Resource Center of Central MA 508-595-9101
  • Autism Society of America – MA Chapter 781-237-0272
  • Autism Support Center 978-777-9135
  • Boston Families for Autism 617-327-9486
  • Community Autism Resources, Inc. 508-677-9239 or 800-588-9239 (toll calls)
  • Community Resources for People with Autism 413-529-2428
  • Family Autism Center 781-762-4001 x329
  • Parent –TILL Partnership for Autism 781-302-4733
  • Arc Massachusetts 781-891-6270
  • LADDERS/MGH 781-449-6074
  • MASSPAC (to find your local Parent Advisory Council)
  • The Doug Flutie Jr. Foundation for Autism, Inc. 1-866-3AUTISM

NLMFF: Does MAC provide special services for non-English speaking families affected by autism?

MAC: MAC has translated its brochures into Spanish, Portuguese, Haitian Creole, and French. Also, we have recently partnered with the Haitian American Public Health Initiative (HAPHI), a community support group for Haitian families, to conduct parent trainings in Haitian/Creole and French. MAC has also provided intensive parent training to Spanish speaking families in the Jamaica Plain neighborhood of Boston. MAC is currently exploring ways to increase its capacity to serve the Spanish speaking and Haitian communities within Boston and ways to extend our outreach into other non-English speaking communities within the state.

NLMFF: How can families stay up to date on the latest changes in special education law?

MAC: Families can contact MAC at 617-357-8431 ext.234 for information about proposed and enacted changes in special education law. Parents can also check the Massachusetts Department of Education website and select the “Special Education” program area for bulletins about special education law.

NLMFF: Where can families find more information about the Autism Special Education Legal Support Center?

MAC: More information about the Autism Special Education Legal Support Center and our brochure is posted on MAC’s website. In addition, families can call the Center’s Autism Legal Helpline at (617) 357-8431 ext. 234.

NLMFF: Thank you for all of your hard work and your commitment to improving educational experiences for individuals with special needs.


1 Parents outside of Massachusetts have a right to an independent evaluation at public expense pursuant to the requirements of federal law. Parents can check to see if their state law provides any additional protections.

2 The 10 day timeline is pursuant to state regulations.

 
 
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