Source: Autism Speaks
People with autism have a number of legal rights and protections. It is important to understand these rights to ensure that you or your child is being treated fairly and given access to all of the services and supports to which you are entitled.
Guide to Legal Information for Families Affected by Autism from Goodwin Procter LLP
In 2010, the law firm Goodwin Procter LLP generously put together a 20 page guide that defines terms, explains concepts and answers frequently asked questions regarding the rights and entitlements of individuals with autism and their families.
A Child’s Rights for Public Education
Your special needs child has the right to a free and appropriate education. The individuals with Disabilities Education Act (IDEA), which was first enacted in 1975 and most recently revised in 2004, mandates that each state provide all eligible children with a public education that meets their individual needs.
The Individuals with Disabilities Act (IDEA) was most recently revised in 2004 (and, in fact, renamed the Individuals with Disabilities Education Improvement Act, but most people still refer to it as IDEA). The law mandates that the state provide all eligible children with a free and appropriate public education that meets their unique individual needs.
IDEA specifies that children with various disabilities, including autism, are entitled to early intervention services and special education. If your child has been diagnosed with a form of autism, the diagnosis is generally sufficient to gain access to the rights afforded by IDEA.
The IDEA legislation has established an important role for parents in their children’s education. You, as a parent, are entitled to be treated as an equal partner with the school district in deciding on an education plan for your child and his or her individual needs. This enables you to be a powerful advocate for your child. It also means that you must be an informed, active participant in planning and monitoring your child’s unique program and legal rights.
What is a “Free and Appropriate Public Education” (FAPE)?
As described previously, IDEA provides for a “free and appropriate education” for all children with disabilities.
Each word in this phrase is important, but “appropriate” is the one that relates specifically to your special needs child. Your child is entitled to an education that is tailored to his or her special needs and a placement that will allow them to make educational progress.
Although you and your child’s teachers or therapists may want to provide your child with the best or optimal program and services, the school district is not required to provide the best or optimal but rather an appropriate education. One of the challenges here is working with the school district to determine what is appropriate and, therefore, what will be provided for your child.
This is a collaborative process that may involve considerable negotiation to secure the services from the school.
What is “Least Restrictive Environment” (LRE)?
As specified in the IDEA, your child is also entitled to experience the “least restrictive environment.” This means that your child should be placed in the environment in which he or she has the greatest possible opportunity to interact with children who do not have a disability and to participate in the general education curriculum. This is commonly referred to as mainstreaming or inclusion.
In the general education setting, providing the least restrictive environment can sometimes be accomplished with accommodations, such as using a one-on-one aide who is trained to work with children with autism.
While it may be true that seeking the least restrictive environment is beneficial for children with autism, it’s important to consider whether or not an option such as inclusion is right for your child. It may or may not be more appropriate for your child to be placed in a special education program, in a school for children with special needs, or in a home instruction program.
Early Intervention Services (EI)
The IDEA provides states with federal grants to institute early intervention programs.
Any child younger than age three who has a developmental delay or a physical or mental condition likely to result in a developmental delay is eligible to receive early intervention services through these programs. If a child is determined to be eligible, these early intervention services must be provided to the child at no cost.
EI services can vary widely from state to state and region to region. However, the services should address a child’s unique needs rather than being limited to what is currently available or customary in your area.
The document that spells out a child’s needs and the services that will be provided is the Individual Family Service Plan (IFSP). The IFSP should be based on a comprehensive evaluation of a child. It should describe the child’s current levels of functioning and the anticipated goals. It should also list the specific services that will be provided to a child and your family.
EI services are aimed at minimizing the impact of disabilities on the development of a child. Services for a child may include, but are not limited to, speech and language instruction, occupational therapy, physical therapy, Applied Behavior Analysis (ABA) and psychological evaluation. Services for families may include training to help reinforce the affected child’s new skills and counseling to help the family adapt.
Special Education Services
Special education services pick up where early intervention services leave off, at age 3. Your local school district provides these services through their special education department. The focus of special education is different from that of early intervention.
While early intervention addresses your child’s overall development, special education focuses on providing your child with an education, regardless of disabilities or special needs. The document that spells out your child’s needs and how these needs will be met is the Individualized Education Program (IEP).
Like the IFSP, the IEP describes your child’s strengths and weaknesses, sets goals and objectives, and details how these can be met. Unlike the IFSP, the IEP is almost entirely related to how the needs of your child will be met within the context of the school district and within school walls.
Extended School Year (ESY) Services
If there is evidence that a child experiences a substantial regression in skills during school vacations, he or she may be entitled to ESY services. These services would be provided over long breaks from school (summer vacation) to prevent substantial regression, but not to acquire new skills.
It is important for the family to remain involved in determining appropriate goals, communicating with the educational team about progress, and working to provide consistency between home and school.
How to get Services Started for a Child?
For Early Intervention Services, if a child is under the age of three, call the local Early Intervention Agency. Contact information is included in the Autism Speaks Resource Guide.
For Special Education Services, if a child is three or older, contact the local school district.
Before Service can be provided, it may be necessary to complete further assessments and evaluations. These may include:
• An unstructured diagnostic play session
• A developmental evaluation
• A speech-language assessment
• A parent interview
• An evaluation of current behavior
• An evaluation of adaptive or real life skills
Having to wait for the completion of these additional evaluations, which may be required by the school district or Early Intervention, may be frustration for parents. Often, the evaluations provide much more in-depth information about a child’s symptoms, strengths and needs and will be helpful for accessing and planning therapy services in the long run.
There are things parents can do in the meantime. Talk to other parents about what services have been helpful for their children. Investigate the autism therapies outlined in the Treatments.
Rights to Assistive Technology
New technologies have created opportunities and higher expectations for full inclusion of individuals with autism into all aspects of society, beginning with the classroom. Access to assistive technology can serve as a pathway to general education classrooms and a way to improve critical skills.
Assistive technology means any item, piece of equipment, or product system, whether acquired commercially, off-the-shelf, modified or customized, that is used to increase, maintain or improve functional capabilities of individuals with disabilities.
Federal law requires that school districts identify the assistive technology needs that would benefit your child in his or her Individualized Education Program (IEP).
Understanding your rights under the Individuals with Disabilities Education Act (IDEA) is crucial in securing the appropriate assistive technology for students with autism.
If it is determined by your child’s IEP team that assistive technology is required to benefit his or her education, the school district is responsible for providing those devices and services. When developing your child’s IEP, or during the yearly IEP team meeting, it is important for you to insist that assistive technology devices and services be included in the written IEP.
No matter what form of AT is used by the IEP team, the law requires that the assistive technology needs of the child must be considered.
Here are a few quick facts to keep in mind when determining assistive technology needs in IEP meeting:
• Lack of availability of cost cannot be used as an excuse for denying assistive technology devices.
• Lack of teacher training cannot be used as an excuse for denying assistive technology devices.
• A child is allowed to take a device home if it is needed to enable him/her to benefit from his/her educational program as determined by the IEP team.
• Training of teachers’ aides and the student can be listed in the IEP as assistive technology services.
• Parents have a right to disagree with the school’s decisions concerning assistive technology.
If the IEP team is unable to determine what assistive technology services best enable your child, then a formal assistive technology evaluation may be needed.
This evaluation should be performed by a qualified professional in a timely manner. The school system may choose to use its own personnel to conduct the evaluation.
However, if you disagree with the recommendation of the evaluation, you have the right to an independent evaluation at the school district’s expense. If differences arise, try to resolve them by meeting with the IEP team first. Procedures for taking more formal action vary state by state.