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Myths and Reality About Services for Families Living with Autism

Myths and Reality About Services for Arizona Families Living with Autism

Written by Arizona Autism United's Family Support Team

 

Time and time again, as parents, we hear the importance of having a support system. Some of us have a great support system within our families and friends. Other times, we want the support of other families who are walking in shoes similar to ours. Many of us have joined local support groups with other parents and have formed unbreakable bonds. Others of us have reached out for support from social media groups.  Having a place to learn, help others, vent, cry – for the good days and the difficult ones – is something we have been essentially relying on. However, what happens when we start a game of “Telephone?”  What do we do when we hear from others or read something online that is meant to help us, but in fact, isn’t accurate? One person tells you something, another tells you something completely different. We begin to panic over some the information we receive.

Over the years of being a part of Autism Parents support groups online, I have seen countless posts with information that is anything from not-quite-correct to downright false. Some information posted on social media pages create a wildfire effect and that information can spread amongst the community rapidly and cause undue stress. While we can be certain that not a single parent means any harm by posting false information, it doesn’t make it any less scary for another parent, especially a parent of a newly diagnosed child.

Here are only a few things found on social media sites that are false:

  • You will need a prescription for Respite care.

This is FALSE. The Division of Developmental Disabilities (DDD) does not require a prescription or referral for Respite care as this is a break for the parent. Respite, as most of the services available for eligible individuals, is based on need.

This is FALSE. Recently, we have seen misinformation being shared online about Habilitation being discontinued by DDD. Parents are worried they are going to lose their Habilitation services and we want to help by providing accurate information. Habilitation services are NOT going away. However, the Early Childhood Autism program (ECA) IS sunsetting. This program is often referred to as ECA, ECM, ECB, ECH or even Hab-M or Hab-B as these have been all the different terms used for this specific program. We believe that the confusion lies in the structure of the ECA program where 3 different services are packaged in this one program; a master’s level provider, a bachelor’s level provider and a habilitator, the first two in a supervisory capacity and the last one as the 1:1 provider implementing the program goals. So, DDD will be discontinuing the ECA program, however hourly habilitation (HAH) will still be available based on the needs of the child.

This is FALSE. ABA does NOT have an age limit. Some people refer to their ECA program (see above) as ABA and what we’ve known is that the ECA program is not available to children over 6 (or in 1st grade – whichever comes first.) ABA, however, is now covered by the DDD Health Plans (Mercy Care and United Health Care Community Plan.) ABA is also covered by private health insurances. Please check your benefits for details or contact us for more information.

  • Attendant Care services are only for adult individuals or individuals with “severe physical disabilities and mobility impediments.”

This is FALSE. Attendant Care is approved based on need. In some cases, this service may be approved for younger children who don’t have physical mobility impediments but need constant supervision.  This may be referred to as “attendant care supervision.”

  • Your child can’t qualify for DDD/ALTCS if you make “too much money.”

This is FALSE. The Arizona Long Term Care System (ALTCS) is the agency that evaluates and determines if an individual is eligible for Medicaid funding to receive therapies and services through DDD. The Arizona Medicaid agency is also known as AHCCCS.  ALTCS does not take the family income into consideration. They will, however, schedule a financial interview. The ALTCS financial interview is based on the income of the individual applying (i.e., this child). As long as the applicant has less than $2000 to their name, they should pass this phase of the eligibility process.

This is only a short list of common misconceptions that make parents confused and anxious. If you ever hear or read something online that may affect you, and you are wondering the authenticity of the information, please reach out to a credible source for confirmation. Depending on the system of care, you may reach out to your DDD Support Coordinator, Case Manager, or other authority in the matter. You are also welcome to reach out to us at AZA United where we are constantly reviewing key policy updates that impact the services Arizona families receive as well as community resources. You may reach our Family Support Team by emailing familyoutreach@azaunited.org or by calling 602-773-5773.

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