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Parent to Parent: Articles on a variety of topics, including diagnosis, interventions, advocacy, ppt meetings, and family life on the autism spectrum.

ABA Information: A collection of articles, reports, and opinion pieces describing Applied Behavior Analysis (ABA) and the research that supports it.

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SERVICE PROVIDERS (2015 Update)

The information below is presented to help parents identify appropriate service providers in the areas of diagnosis, ABA treatment, and legal advice.

Disclaimer: CT FEAT does not recommend or endorse any specific service providers. Parents who are interested in learning the often varying opinions of other parents regarding specific providers can network with each other via CT FEAT’s “Parents Only” Listserv Discussion Group.

I. Attorneys and Parent Advocates
The Council of Parent Attorneys and Advocates (COPAA) is an organization promoting excellence in legal advocacy for students with disabilities and their families. COPAA’s web site, www.copaa.org, is an excellent information resource. It includes a listing, alphabetically by state, of attorneys who represent parents. See also their article explaining the differing roles of attorneys and parent advocates.

The Connecticut Parent Advocacy Center (CPAC) is also an excellent source of information about special education laws and the PPT process. CPAC is state-funded and their services are free. However, their staff is not able to attend PPT meetings. www.cpacinc.org

Legal Services Lawyers specializing in special education provide free representation to low income families. Contact information for all of the regional legal services groups in Connecticut can be found at www.ctlawhelp.org. The website also has informative videos, in both English and Spanish, on various special education related topics.

Parents who are interested in learning the often varying opinions of other parents regarding specific attorneys and parent advocates can network with each other via CT FEAT’s “Parents Only” Listserv Discussion Group.

II. ABA Services
Considerations in Choosing an ABA Consultant, Program, or School
Not all ABA professionals are autism specialists. And among those who are, not all are trained to treat effectively all kids on the autism spectrum.

For example, someone who is skilled at developing an intensive treatment program for a non-verbal, three-year-old with severe autism may not be similarly effective with an older or more mildly impaired child whose challenges include learning how to make appropriate comments in social conversation or refrain from self-stimulatory behavior.

Furthermore, not all educational settings are optimal for all kids. A child who might do wonderfully in a home program might do comparatively poorly in an autism school, and vice versa. One child might be best served by an inclusionary setting while another might make more progress in a more specialized environment. You’ll need to educate yourself about all the available options so as to assess what best meets your individual child’s special needs.

Consumers also should educate themselves regarding the minimal qualifications that an ABA provider should have. For more information on these qualifications, go to the Behavior Analyst Certification Board’s web site: http://www.bacb.com.

Parents who are interested in learning the often varying opinions of other parents regarding specific ABA service providers can network with each other via CT FEAT’s “Parents Only” Listserv Discussion Group.

III. Diagnosticians
What Parents Need to Know about Getting a Diagnosis
Parents usually expect that the professional diagnosing their child also will provide very specific and reliable guidance regarding treatment. This is an understandable expectation since, in most other realms of healthcare, treatment information accompanies diagnosis. Unfortunately, this is often not the case when it comes to the diagnosis of autism spectrum disorders.

Many competent diagnosticians either: 1) don’t take the time to do the kind of comprehensive evaluation of a child’s deficits and strengths that is necessary to make appropriate treatment recommendations; and/or 2) don’t keep up on the most current literature regarding “best practices” for treatment.

These diagnosticians often simply direct parents to consult Birth to Three or the school system for treatment advice. What happens next can be very hit or miss as to whether a given child will be offered appropriately individualized and intensive intervention.

In some instances, parents are misled in to thinking that their child’s educational program is based on the principles of applied behavior analysis (ABA - the most widely recognized evidence-based treatment) only to learn later that the intervention services don’t meet professional standards

Parents who continue to research treatment (through online sources like CT FEAT’s web site) or network with other parents (through internet forums like CT FEAT’s Parent Discussion Group) may ultimately discover that their child did not receive intervention consistent with current knowledge regarding “best practices” for treatment of autism spectrum disorders. Given the critical importance of earliest possible intervention in achieving best outcomes, this realization can be quite painful.

Many highly regarded diagnosticians maintain long waiting lists. This delay understandably prompts some parents to seek a quicker but less comprehensive evaluation even if it means the diagnosis won’t be accompanied by individualized treatment recommendations. In these all too common circumstances, it is especially important that parents do their own research so that they can advocate on their child’s behalf.

Parents who are interested in learning the often varying opinions of other parents regarding specific diagnosticians can network with each other via CT FEAT’s “Parents Only” Listserv Discussion Group.


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