Goal: Make Paid Parent Program Permanent

Advocacy messages are always best when they come from the heart and include your own personal touches.  In any advocacy message, it's also important to: 

1. Demonstrate a need, e.g. parents with disabled children often have to devote all their time ensuring care for their child and that appointments are met, while consistent help is difficult, if not impossible, to find.
2. Provide a concrete ask: make the rule allowing parents to provide extraordinary care to their minor child permanent.  Similar rules already exist that allow the parents of disabled adults and spouses enrolled in ALTCS to receive compensation for providing the extra caregiving tasks necessary for people with disabilities.
3. It is most helpful when you include personal details.  What does your day taking care of your child look like?  What changes have you had to make in your life to enable you to provide appropriate care?  How long have you had to wait on a waitlist for caregivers?  How much turnover have you faced?  Make it personal and important.

Here's an example letter you can use as a framework for a letter or email, or use as a script on a phone call.  Of course, if you can include any details about your personal experience (whether you use the program or not), that would amplify the impact of the message.  And if you are so inclined, feel free to write your own message.  Change will come if we work together to send a loud and clear message:  ensure consistent care for minor children in ALTCS by adopting the emergency procedure to allow parents to be the paid caregivers for their minor children as a permanent rule.

Sample Letter/Script

Dear ________,

I love someone with a disability.  As part of the COVID-19 response, Arizona Long Term Care (ALTCS) began allowing parents of minor children to be paid for providing the extra care that disabled children need that would have been provided by an outside caregiver.  While the parents of minor children have not had this opportunity before, the parents of adults with disabilities and the spouses of people with disabilities have had this opportunity for years.  

I think this change is important because it ensures that children can have consistent care in their own home.  Due to shortages in the workforce, it has been very difficult to find consistent help.  In addition, due to multiple therapy and doctor appointments, which require my attendance, caring for my child takes significantly more time than raising a typically-developing child.  <Insert your story here: someone had to quit working, reduce hours, find a new job, or could work only with the help of family>.  

Accountability is built into the system.  Parents must contract with a licensed provider and report hours to the provider.  As part of becoming an employee of a licensed provider, parents receive training on caregiving that many of the parents have found useful, and use on a 24/7 basis with their disabled children.  In other words, it provides us as parents with tools that we incorporate all the time, not just during a workday.

The parent provider program was successful during COVID.  So successful, that numerous disability organizations and even businesses that provide this type of care have joined us in our effort to make it permanent.  Can I count on you to join us in our drive to maintain the ability of parents to provide quality, consistent care for their disabled minor children by making the parent provider program permanent?

Thank you,

<Your Name>

<Relationship to DDD Member>