An Open Letter to Governor Hobbs, the Arizona State Legislature, and each of you:
In this house, my kiddo has now been without PT and OT for more than a month as the situation I wrote about in my last post remains an active and unresolved matter. So in what would have been an OT session, I am writing a post. While I’ve improved in my surgery recovery to the point where I can play piano an hour at a time, crochet during my entire session with my own therapist, and help my son through school, with each passing day I look at the local and national headlines regarding DDD funding and cuts to Medicaid services with growing concern.
For those of you who do not know, Arizona DDD / ALTCS is set to run out of money in the next couple months as the number of disabled individuals in Arizona has continued to rise, and members of the legislature appropriations committee here are recommending deep cuts for the future despite budget surpluses in other areas. I have posted links at the bottom of this post from media outlets and Raising Special Kids. For me, as a mother who values the sanctity of life, I remain firmly committed to the idea that if we as a community support the right of all life being born, we should be equally willing to provide medically necessary supports for each and every one of those lives to thrive within the community. I am going to post an updated version of thoughts I sent some members of our state legislature recently:
I am the mother of a child with multiple significant disabilities that we adopted from the Arizona foster care system. Our son has been approved for ALTCS and DDD since he was 2 years old owing to the severity of his deficits and care needs. Without the services, we never could have afforded to pay for his care. Our primary insurance through my husband’s employment would not have covered most of his services and he likely would have needed to be placed in an inpatient care facility a long time ago. Tony had one therapist when he was four and a DDD support services coordinator around the time he turned six both state to me that an inpatient care facility were necessary and appropriate for him. He is now nearly 13 and been able to stay successfully at home with us in part due to the services and support he has received.
And as of now, he’s still able to live in our home entirely because of the benefits and services he has received from DDD/ALTCS. Placing him in a facility would have increased the burden to taxpayers for his care, so I would like to start off with a concern that cutting services in any way to these programs will actually ultimately either increase the cost to taxpayers or increase homelessness for the developmentally disabled. ALTCS pays for inpatient facilities used by the developmentally disabled. It would also have a chilling impact on adoptions of individuals with disabilities or specialized needs from the foster care system. Without a support to pay for necessary services, most families wouldn’t be able to afford to make space in their home for these special individuals. A likely decrease would also be seen in the number of families willing to foster disabled children, as they would be unable to absorb those extra costs of care.
It has been discussed recently to target the parents as paid caregivers program, but it is important to understand that these programs benefit disabled individuals that require a therapist or an in home attendant, but non-familial providers for these services could not be found for them. This is a complex issue resulting in part because the pay rate for services such as habilitation isn’t competitive enough to have a sufficient work pool to provide these services to all who meet medical necessity. If the parents or family members cannot provide these services, this will also increase placement in facilities.
In part because of the work I have done with Tony as his habilitative therapist over the past 5 years, he is now in a public school and able to integrate into many areas of the community in a way he otherwise wouldn’t have been able to. My son is one of many for whom a provider was not able to be found and necessary services were provided by me. With the current economic circumstances, very few families could afford to do this for free which again would increase the burden on the taxpayers ultimately as more families would seek to place their loved ones in facilities.
In my opinion there are other programs that can be reduced, including providing vouchers to help cover the costs for private schooling for developmentally normal children who could still thrive in their public schools. These are children who are going to be able to do well and succeed without these kinds of monetary supports. Children like my son won’t be able to.
This is a very complex issue and there is so much more I could say. I am very grateful for the time you took in reading this and wish you a wonderful day…
And this I wish to each of you as well, but with an added request. If you are a family member, friend, or loved one, please consider reaching out to your state legislators if you feel comfortable supporting the ongoing funding for these services.
Click on the phrases below for links to the following articles:
“Action Alert!” by Raising Special Kids
“Medicaid Matters: Tucker’s Story of Strength and Inclusion,” Raising Special Kids
