As Jace heads full speed into the Teen years, I am noticing how much more he wants to be social. Unfortunately, as much as I would love to take him to every event that our special needs community offers and more inclusive activities as well, having an active two-year-old doesn’t make that the easiest task. So what is a parent of a special needs teen to do? Hire a Community Habilitation worker. Sounds easy right, not exactly. You will have to do a fair amount of paperwork and it will take anywhere from 6 months to 2 years to get finalized, depending on how diligent you are with your paperwork. But once you are approved and you match your teen with an appropriate worker it will open up a world of opportunity.
So First things first is your teen old enough to start the self-direction process? If your child is of age, 16 and older, in NY other states may differ, you can contact your MSC (Medicaid Service Coordinator) and request to start the process. Then you will have to find and hire a self-direction broker and finally after all that you will be able to hire yourself one of these amazing people who will hopefully connect with your child in a way you could not. Some people prefer to use relatives or neighbors as their workers, people they feel comfortable handing their child over to. You can also put out an ad on indeed, linkedin, or other hiring websites. I actually like to personally recruit an individual that I think will match well with my son, after all, no one knows your children better than you. I met both of my son’s workers through chance encounters, both while I myself was “Com. Habbing” an individual other than my son. People tend to be the best version of themselves on an interview and who they really are during everyday life. So it gave me a glimpse of what it might be like for Jace to be in the community with them and I liked what I saw, positive, upbeat, calm people. May not work for you but I rely on my instincts when it comes to my children.
Warning: Self Direction is not for everyone. If you do not like paperwork and I mean like it gives you hives and your body physically rejects it, this might not be for you unless you are up for a challenge or can hire someone to do the paperwork for you. If you are not an organized person nor desire to become more organized, this may not be for you. And lastly, if you are already overwhelmed in your personal experience of raising a special needs kid you may be better off going through already established services that can do most of the paperwork for you and help guide you through already established services. There are times that it has been overwhelming for me, but I remind myself of the freedom it has granted me in choosing classes and services that are tailored to Jace’s changing interest.
However if you are like me, a searcher, learner, and someone constantly willing to grow as an individual to meet the needs of my children, then buckle up! Going the self direct route will make you face your own challenges in a way that put me on a path of reorganization, priority alignment, goal focus and self awareness that I had no idea I was about to embark on and am forever grateful to Jace for jump starting.
-JRED
As always please post any questions, I do my best to get back with links to help.
JRED LIFE- Home of Dymphna's Children Blog: Autism, Life, Parenting, Love and Zumba! 