Ask Mike - I need a personal care assistant for my disabled seven year old daughter
Dear Mike,
I have a 7 year old daughter with multiple disabilities. She has Autism, Epilepsy, ADHD, Tourettes, Axiety, depressive disorder and sensory issues. She sees multiple doctors every week and it makes it very difficult to work at a job not knowing if my cell phone is going to ring to come and pick her up from school. We live in Wisconsin and I need to know what to say to our health services and what to bring with me to show them that I need to be a personal care assistant for her. I don't want to go to this meeting unprepared so what can I show them that will help our family get this extra income that is so needed in our home? Just this past October I had to put her in an Institution. She was there for a week and she was put on Risperidone. She is not a well child at all. She has constant seizures and some days her meds work, and then other days you think she never took them. What do I do? What do I need to bring to this meeting? Is this even possibly?
Thank you
Mom in need
Dear Mom-in-need,
Thanks for writing. Your daughter is seven years old and has multiple disabilities and chronic health conditions. Because of her disabilities and health issues, she sees multiple doctors and you also frequently receive calls from her school. These needs make it hard for you to work. Your schedule is often disrupted by the phone calls and the need for her to get to her appointments. You would like to be a paid support for your daughter and would like to know how to get prepared to press your best case. You also state that your family really needs the extra income.
There should be no real need for you to worry about "preparing" and having a meeting with health services and so on. The other main point I want to make with regards the issue of family income. If your daughter qualifies for a state program offering assistance in the home and community such as a Medicaid Waiver, then you can see if it makes sense for you to be her worker, or one of her workers. These programs are meant to serve and support individuals with disabilities who need personal assistance and supports. They are not meant to assist with family income. Family income is not really a rationale for eligibility for services. The other thing that comes to mind is that if your daughter had the supports and services she needs provided by someone else besides you, then you wouldn't be so disrupted at work such as having to take off to deal with all of her appointments.
The PAS Center Website can assist you with applying for and otherwise contacting the program(s) available to assist you and your daughter. Go to www.pascenter.org. In the first paragraph under the "Welcome" banner of the homepage, you will notice a link for "Ask Mike". Click on "Ask Mike". On the next page, you will see "frequently asked questions". Click on both "Can I get paid for caring for a family member" and "I need a caregiver". Follow the directions to get the information that you need to get started on resolving your concerns.
Good luck!
Mike Oxford.