The Need for Autism Advocacy
Advocacy is the cornerstone of supporting individuals with autism. While families and caregivers can play a crucial role in advocating for the needs of those they love, advocacy organizations and law centers provide a vital resource in navigating the complexities of obtaining services. When needed, advocacy groups can step in with the knowledge of advocates trained in the field who work for the individual to ensure that all individuals get the most from the public and private services to which they are entitled, regardless of their age and within the expected period of time . Such advocacy groups also provide resources that help families and caregivers know their rights under the law, especially when interacting with school, medical facilities, and any other public service. Local, state, and national groups can provide informational seminars on identifying and working with professionals in the autism field. Groups such as Autism Speaks provide monthly webinars that cover topics such as treatment options to meet needs, identifying and securing appropriate educational services, or finding employment.
Legal Protections for Those with Autism
Persons with autism and their families enjoy a variety of important legal rights in the areas of special education, employment, housing and public services. These rights derive from the ADA, IDEA and related federal statutes and regulations, but also from state and local laws. In the domain of education, for example, IDEA grants students with autism and their parents specific rights as to appropriate educational placement and services, including access to related services, such as speech and language therapy, psychiatric care and social skills groups. Facilities covered by the ADA include public schools, colleges and universities. Title II of the ADA prohibits discrimination on the basis of disability by public schools. Title III prohibits discrimination by private schools. Public and private schools must meet all access requirements of the ADA. Protection against disability discrimination extends to colleges and universities. Qualified students with autism must not be treated other than similarly-situated non-disabled students. Accommodations such as note-taking services and flexibility in taking exams must be provided to students with autism at all levels, including graduate schools and colleges. The ADA does not protect students with autism who are living independently or employed or otherwise no longer enrolled in the school. However, depending on the circumstances, students with disabilities, including autism, may be able to exercise rights and protections under state law.
Autism and Law Centers Services
Extending beyond daily consultation, autism advocacy and law centers provide a wide range of services to their clients. Most organizations handle an array of specific legal concerns related to children but also have the capacity to gather information and consult about other issues. A common focus for autism advocacy and law centers is developing, acquiring, and distributing resources to assist parents in understanding and managing the special educational needs of their children. Typical services of autism advocacy centers include: Autism advocacy centers can also help locate and arrange additional support for families through local outreach programs. Some organizations even support statewide or national outreach efforts. Some autism advocacy organizations maintain libraries of resources aimed at helping families understand basic legal concepts. These resources include information on dealing with schools and other government agencies, as well as detailed information on the arbitration process. Healthcare resources may address medical rights or insurance matters, and may also include referrals to medical experts and peer support groups. For older individuals, resources may address concerns such as guardianship, housing, and financial matters.
Accessing Autism and Law Centers Services
Families seeking help must first face the difficult choice of whether to bring an attorney into their IEP meeting or ask for legal advice on an IEP or school placement decision. To be granted access to free legal advice or advocacy on an IEP issue, it is necessary to fill out a request for services from a regional law center. These requests usually include brief details about the issue the family is experiencing with their son or daughter. If the family has a current diagnosis of autism spectrum disorder or qualifies under state law, the legal center may take the case for a fee. The fee is often on a sliding scale based on income or the complexity of the legal issue. In some cases, parents may have to choose to pay their attorney or go it alone if they cannot afford both. If there is an issue that occurs during the IEP meeting, parents should consider asking for a break to call someone at the law center who can offer immediate advice.
In order to gain access to advocacy or legal help, the request for legal assistance must be approved. Once a family has been accepted to receive guidance or advocacy, they will meet with an advocate or attorney to begin the process of working through their issue. An intake meeting is usually the first step in the process and takes place within a month of the submission of the request for legal assistance. The intake will allow the attorney or advocate to gather more information about the family’s specific needs and review any recent testing results as well as existing IEP documents. Once the intake is complete, the attorney or advocate will meet and work with the family to resolve their issue. This may include drafting letters, reviewing documents, and making phone calls.
If the request for assistance is denied, the family is welcome to apply again or they can contact Us for more information about finding low-cost or pro bono legal assistance elsewhere.
Autism Advocacy and Law Centers Challenges
While many see the work of autism advocacy organizations and law centers as vital to improving the lives of those on the autism spectrum and their families, they are often under-resourced and underfunded. These centers must serve large populations and address complex legal issues despite limited funding from national agencies or state and local governments. When funding is available, it can be piecemeal or insufficient to cover the ongoing needs of the organization, let alone accommodate sudden increases in demand for services. These organizations must constantly pursue new funding sources while seeking creative ways to reduce costs. Transition planning, a major subject of discussion at the symposium and a critical issue for families with children who have autism , is often one of the first services to be cut when funding is insufficient. Autism advocacy and law centers face an ever-growing caseload while needing more staff. Families with autistic children are in great need of services that help them navigate federal and state laws such as IDEA, ADA, ADAAA and IDEA. Continued funding is necessary so these organizations can provide critical resources like training and education, parental support, outreach and awareness, legal representation, education policy reform and enforcement of civil rights. Health care and transitional aged youth issues impact more families and individuals each year. As such, organizations that provide the advocacy, training, planning, representation, outreach and awareness about these issues need more resources and support from the general public, corporations, businesses, private foundations and grants. Public support is necessary to keep the wheels of autism advocacy moving and providing support for families and individuals who are at a critical turning point in their lives.
Autism Advocacy Success Stories
While the above is all well and good, it is always best to use the results more than words to demonstrate the impact of autism advocacy and law centers. Some examples include: Education Rights Center (TRE Ruben & Stein): Founded by Eric Ruben and David Stein, this Center has had a long track record of positive outcomes in representing disabled clients within the New York region. Their specialties are focused on Section 504 and IEP building for education clients. Though not a defined not-for-profit, this and other law firms specialize in working pro bono for clients in need. Autism Law Center: Able to provide legal services in various jurisdictions, the Autism Law Center provides access to numerous resources to assist families in their overall ability to gain access to education and services for their autistic children. With a client list that runs into the thousands, this clinic is able to provide representation in order to ensure that the needs of known learning disabilities and impairments are met, both in the short- and long-term. Disability Rights Center of Kansas: The Disability Rights Center of Kansas aids those within the state of Kansas who may be suffering from autism or have developmental delays. Though they provide access to consultation on legal options, this not-for-profit organization also provides information about services at large to help provide for autism in the state and beyond.
How to Participate in Autism Advocacy
People looking to get involved with autism advocacy can support the mission of the center for autism and your local chapter in a variety of ways. Each center will have a listing of volunteer opportunities available on its site or through its outreach center. Organizations are often looking for people to donate their time, so check out the requirements of particular positions and submit an application.
It is also possible to donate directly to an autism center, regardless of whether you have ever needed to retain a lawyer to help your child. This is a not-for-profit industry, and sometimes each legal case can cost tens of thousands of dollars . While many centers will handle all legal issues that come through the door and take no payment for their services, there are nonetheless expenses and administrative costs that continue to accrue year after year. A financial commitment by the public can help to keep these centers solvent and their doors open.
Finally, many of the centers for autism and law have volunteer campaigns throughout the year that allow you to take an even more active role in your advocacy efforts. One of these might be an autism awareness campaign that encourages people to purchase a T-shirt or coffee mug to donate to the cause.
Leave a Reply