Blog

Medicaid waiver crisis application

My brother has been deemed eligible for Medicid HBCS waiver. It was a tough path plagued with bureaucracy, which we still aren’t completely through. I have plans to address this with local representatives and up. There is hope. If you need help caring for your disabled loved one, please let me know so I can help you navigate the process. Many factors are considered when trying to get waiver services. Help navigating it all is essential when you don’t know where to start.

Group homes and supported living

Group homes are a challenge for me. Being the control freak I am, I want to see what is going on with my brother each minute. Group homes are a mixed bag. Some great, some not. I had to make the choice to use one when my brother’s behaviors got to the point I couldn’t handle any longer. His care consumed my days and nights. It hurt my marriage. Taking care of someone with autism is not a task to be taken lightly. Meds, doctors, and tantrums (dealing with a 250 plus LB. man) and more. I love my brother but I also know my limits. It has been a teaching experience for me. While I won’t ever love group homes, I have come to understand that for our family, and especially for Karl, it was the right choice.

Christmas 2018 VA Beach

What a great time! Karl, Carole (my daughter) and I had a blast. Ate at Olive Garden almost every night (Karl and Carole love it 😍 so who am I to argue?) We stayed for a week and walked the beach, relaxed, and had fun together. A lovely, quiet peaceful Christmas.

Daily Struggles

Today was a tough day. Karl had a meltdown after my daughter and I had visited him at Thanksgiving. He does not understand time very well and telling him we would be back at Christmas was not enough to console him as we left. His group home is awesome, but there’s nothing like family or loved ones visiting to make his day. Working with the group home staff, who are amazing and patient, working with doctors to ensure medications are appropriate to curtail behaviors, all of these things are extra details to work out and stresses to deal with. I have learned that patience and faith in God help me most during these trying times.

I would welcome any comments on what your struggles are, and what helped you through them, whether you are a parent, a family or professional caregiver, or anyone who supports an autistic adult.