My name is Ariana T and my son, Anthony (Tony) has multiple qualifying DDD diagnoses. He has complex behavioral and therapeutic needs, but has demonstrated progress through his therapies that have allowed him to gain skills he otherwise would not have had, thus reducing the cost of providing future services to him.
For the past three years, I have been getting paid as his primary hab therapist. Before that, I spent years doing it for free because he needed those skills, which is well above the level of care that is legally expected of a parent based on my level of understanding. I was doing that because we couldn’t find therapists in our area who were both able and willing to act as his habilitative therapists. We have had therapists who interviewed with our family choose to reject his case and rather take the case of a kiddo who was considered to be higher functioning or with fewer behavioral needs once they learned about his specific needs.
Of the 8 years my son has been approved for hab, I have been providing those services for more than 10 hours a week (20-30) for 6 of those years. That’s a long stretch of time where nobody else could be found. For me, as a parent, there is nothing I want more than for somebody else to be able to come and help him with these things because he does need that practice. But what he needs most is the skills, and if nobody else can be found who can do it, paying the parents to fill that role is better than the disabled individual going without. Which is what will happen for my son if this program expires.
I attended today’s forum, and though I raised my hand early in, did not unfortunately have the opportunity to speak. What I heard in this forum was that AHCCCS did not include habilitation as an area where parents can be the direct care worker because they are concerned about the ability of disabled individuals to gain opportunities to practice working with others.
How does it help a disabled individual do that if there is nobody else willing or available to do so?
My son has gained skills that he would not otherwise have because of the work I have done with him, and everyone who works with him in the future will benefit from this because I have built opportunities for him to interact with others outside of the home into his hab goals and his hab work. We do so much work around others as part of his hab goals because he needs extensive practice with and support to acquire those abilities.
If hab services aren’t included in this waiver for parents as direct care workers, I won’t be able to continue to give him that support for free. Because in the current economy, we will now need me to work outside the home. So what that means for my son is that if the past is any indicator, he is unlikely to have anybody else working with him. And he will not gain those skills without necessary support. And that will increase the cost and difficulty level for anybody working with him in the future.
To me, it is more important that he have the skills and his therapeutic needs met regardless of who is meeting those needs.
As a mother, I want to add my voice to other parents in requesting that the AHCCCS administration include habilitative therapy as a service that parents can be the direct care providers for in their CMS waiver submission.
Thank you for your time.
Respectfully, Ariana T
P.S. With the current waiver submission recommendation as I understood it today, starting November 11th parents will no longer be allowed to provide habilitative therapy for their children, which could leave many disabled individuals in the state of Arizona without habilitation services at that time. If you would like to submit feedback yourself to the AHCCCS Administration, you can do so at waiverpublicinput@azahcccs.gov
