Several years ago, my husband and I were thinking we had done a pretty fair job maneuvering the disability world to get our adult daughter (and us) what she needed. She had a high school diploma. She had a job. And, she had a nice place to live.
We’d built a small apartment for her over our garage. This allowed us both independence and privacy. Then I began to meet a few families with situations like ours. And my self-professed security came crashing down. I heard terms like:
It became clear that we had much more work to do. And we must begin rethinking immediately.
We were fortunate to have found guidance in many of the available resources. But we needed to research and explore.
One of our first stops was a workshop on person-centered planning. This workshop opened my eyes to the fact that our plans must focus on my daughter’s hopes, plans, and dreams. Not just our plans and dreams for her. How powerful that was to our entire family!
We learned about Medicaid waivers and placed her name on lists to receive services. We learned the waiting lists (interest lists) for receiving benefits were more than 10 years in the future. We updated our wills. We found a financial planner. We attended countless workshops to increase our knowledge.
The most recent source of great information is the Arc Greater Mid Cities A Look Ahead Conference. The series offers a mix of useful sessions available for all ages and disabilities.
Many sessions focused on housing and education. Others discussed legislative and legal issues. There were also panels on behaviors, rights, and trends in the disability field. There were many topics to choose from. Presenters are experts in their fields. What a bounty of information!
I hope that you’re not out there feeling frustrated and desperate for guidance, support, or just someone to lean on–the same place our family found itself in over a decade ago. There are resources waiting for you to find them–to tap into their information and services. You just have to ask for help.
We did so and found ourselves greatly blessed. So can you!
Check out Transition to Adulthood for more helpful information.
From the moment Camila was born, I knew she would change my world. But it was not until third grade when she made the comment “I don’t want to live anymore” that I realized things were not right.