My child is nearing adulthood. How do I find out if she is eligible for services for persons with intellectual disabilities or autism?

First you have to contact the regional office of the part of Maine DHHS that provides services to persons with intellectual disabilities or autism. Ask for the intake coordinator. There is a written application that has to be filled out, and the intake coordinator’s job is to either fill out the application or to help you do it. The decision on eligibility is supposed to be made within 90 days of submitting the application, but it is possible for the process to take longer. (34-B M.R.S. §§5467-5469)

The application has been filled out and submitted. What happens next?

The intake coordinator and the intake coordinator’s supervisor look at the information. For persons with intellectual disability, they are interested in IQ test scores and functional test scores. (14-197 C.M.R. Chapter 3, §3.1) Usually the IQ test is a WAIS, the Wechsler Adult Intelligence Scale. The functional test is usually a VABS, the Vineland Adaptive Behavior Scale.  The Vineland tests the applicant’s abilities in daily living skills. The WAIS and the Vineland are the most commonly used tests in Maine, but there are other tests that are sometimes used. The results of both tests must be found by DHHS to be two standard deviations below the mean—in numerical terms, 70 or less. If one test is higher and the other is lower than 70 the person will be found ineligible.

Sometimes it is very clear from the outset that the applicant has a score -- or several scores, because IQ testing and functional testing are often done at least several times in the course of growing up and being in special education—and the person has scores below 70 and is eligible. Occasionally no test scores can be found.  Other times the scores will straddle 70, because neither IQ testing nor functional testing is an exact science and a person’s performance may differ from time to time due to other factors. If no recent reliable test scores can be found, or if there is a history of scores straddling 70, or if there is some reason to believe that scores are “artificially” low, such as testing affected by poor vision or hearing, then DHHS will arrange for a testing by a person it chooses. Under state law the testing is supposed to be “comprehensive”. After reviewing the test results of the chosen tester, the regional office will make a decision and let the applicant know in writing.

For persons seeking services because of autism, as opposed to intellectual disability, the process is the same except that instead of requiring an IQ test below 70 the applicant must have functional test scores below 70 and a reliable diagnosis of the person being on the autism spectrum. (14-197 C.M.R. Chapter 3, §3.2) Historically this meant a diagnosis such as PDD-NOS (pervasive developmental disorder, not otherwise specified) or Asperger’s, but the most recent version of the Diagnostic and Statistical Manual of Mental Disorders, DSM V (2013) now incorporates those into the broad rubric of “autistic spectrum disorder.

Can I appeal a determination that my child is not eligible?

Yes, if you have authority, such as guardianship authority, to make the appeal. (14-197 C.M.R. Chapter 3, §3.3) If you are not guardian, and the applicant is over eighteen years of age, then the applicant must appeal. The appeal must be in writing and it is very important not to miss the appeal time deadline, because once that passes DHHS will consider the matter final. Even if new evidence emerges later, indicating eligibility, DHHS may refuse to take it into account.